#838 A Look at Tidepool Loop

Howard Look is the Founder, President, CEO of Tidepool. 

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 838 of the Juicebox Podcast.

Today on the Juicebox Podcast, we're gonna take a look at tide pool. Did you feel bad pun? That's right, Howard look is on the show. He's the founder, president and CEO of tide pool to talk about tide pool in general, and the tide pool loop app that just received FDA clearance. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. We're becoming bold with insulin. If you're a person who has type one diabetes, or is the caregiver of someone with type one, please take 10 minutes out of today to go to T one D exchange.org. Forward slash juicebox. All I'm asking you to do join the registry, complete the survey, it should take you about 10 minutes, and you complete that survey. Your answers will help diabetes research to move forward. T one D exchange.org. Forward slash juicebox. I have a moment. So let me tell you that the Juicebox Podcast has an entire series worth of algorithm based episodes, including a ton about loop, check us out on Facebook, or at juicebox podcast.com. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter, you can find out all about that little meter at contour next.com forward slash juicebox get the meter that my daughter uses. Speaking of what my daughter uses, you could get your diabetes supplies the way we do from us med get your free benefits check right now at 888-721-1514 or by going to us med.com forward slash juicebox. quite a quite a team actually. And if you don't mind before we talk about everything that's going on recently. Can you talk about that? And you said you found it the whole thing? Was it just you in the beginning? Or is it you and a handful of people? How did that go?

Howard Look 2:17
Yeah, so it actually goes back to 2012 2013. So my daughter Katie was diagnosed in 2011. With type one, I was actually working at Amazon at the time, it was the consumer electronics subsidiary of Amazon called lab 126. And Katie gets diagnosed and my initial reaction was oh my god, I knew nothing about diabetes, I didn't know what insulin was, I didn't know there are different kinds of diabetes. And so it was really a crash course I think, like for a lot of parents. And you know, very quickly into our journey. She got put on a Medtronic insulin pump and originally the the enlight sensor. I'm not exactly answering your question, but I'll get to it in just a second. Because I think it's kind of part of the journey. So she was on the enlight sensor, which for her just didn't work. Like it wasn't comfortable. It wasn't accurate. You know, she would cry every time. It had to go in, we call it the harpoon. It just wasn't right for her. And fortunately, right around that time, is when the Dexcom g4 came out. And so then she's still on the Medtronic pump, but using a Dexcom G four. But we have this crazy situation where at the time, neither the Dexcom software nor Medtronic software would run on my Mac. And I was like, I can't see your data like this is crazy. And so, you know, I literally was saying who writes this stuff? Like, why is it so hard? It shouldn't be so hard to see the data. So I started asking around, I started meeting other people that felt like I did. I always like to give credit to Scott Hanselman. He had this great blog post in 2012 called the sad state of diabetes technology. And if you scroll, you know, 130 people down in the comments, you'll see me going Hi, my name is Howard. This is all kind of crazy. I'd like to do something about it. Anybody else want to do something about it? And so I started getting introduced to people, you know, like lean Desborough, like Brian Maslin people who were also tinkering and trying to make things better for living with type one. I eventually got introduced to a team of folks up at UCSF, Dr. Salia de and Dr. Aaron nine Steen and Dr. Denise Huang. And they had started a little company called Green Dot diabetes with another GeekDad for lack of a better way of saying it like me named Steve McCann. He also had a teenage daughter living with type one, and had been doing a little bit of hacking to visualize her data. And when I met that Team Steve and the doctors at UCSF. I was like, Oh my God, they're doing something about it, I want to do something about it. I initially proposed to Steve that he and I go to a startup together. And he said, You know what, I don't really want to do another startup, I want to go do this other thing. But if you do it, I'll give you your initial funding or his wife at the time, and he gave us our initial funding. And that was how tide pool was born. So it started as Green Dot diabetes for people at UCSF, and me, and Steve McCann, we decided to rename it tide pool in May of 2013. And that's when I became CEO. And we never looked back. From that point on, I started meeting people. The actual first person I hired at the time was Ben West, who I think is, you know, super well known in the DIY community. He's the guy who did the original reverse engineering of the Medtronic insulin pump, which ultimately led to open APs and loop and lots of other great things. I ended up meeting, Brandon Arbeiter, who I convinced to move to California and start typo with me. And the rest is history. As they say, We started small and humble. And we've kind of slowly grown over the last 10 years.

Scott Benner 6:18
It's it's an interesting way to build something just continuing to call out of this group of people who are all very focused for personal reasons. And yet, very technically adept. I'll tell you, there's I recognized almost every name you said. But I want to tell you that I did an interview with Dr. D. Once it's one of the best conversations I ever had about diabetes.

Howard Look 6:39
Oh, he's amazing. Yeah, I love it. We used to call him the basil whisperer. He is so good. And He's so calm, but so insightful. He can look at data and just go, Aha, we should look at your Basal rates between 3:30am and 6am. Or high, your ISF is off by 10%. At this time of day,

Scott Benner 6:58
I remember saying something that he agreed with, and I was so proud of myself. I was like, Wow, all right. But yeah, we had such a what I would consider to be a geeky conversation about using insulin. That was just really fascinating, and very, very informative. I still hear about it from people, they say it's one of the best episodes of the podcast. Oh, that's

Howard Look 7:17
great. Yeah. Solly dr. D, he is amazing. I consider him a close friend. I was actually just in touch with him earlier this week. And he was our original chief medical adviser at typo please tell

Scott Benner 7:32
him I said hello, if you see him again, Burwell. So. Okay, so I understand how you all are then aware of this loop algorithm that exists in the world, it's being made just by people. And, you know, we're gonna use words that if people don't understand the idea of sharing code online, I don't even understand what I do to be perfectly like, honestly, here like, Yeah, I'll give you an example. I have a GitHub account. I don't know what that means. I

Howard Look 8:00
happy to explain it.

Scott Benner 8:01
No, no, if you explain to me to go right through my head, and out the other side, which I think it's good about what you guys did, you know, lovely people will jump on zooms with me and help me rebuild my daughter's loop app sometimes. And as I'm doing it, I think, Oh, I do know how to do this. But I my brain just doesn't work that way. But my daughter has been using loop for a number of years now. And she began, I don't know how it I'm sorry, you my daughter is 18. She's in college. She's a freshman, she was diagnosed when she was two. So you have some context. And a listener of the podcast came to me one day and said, you should put your daughter on loop. And like gave me the big like Sal about it. And later, they came on the show to tell me that they just wanted my daughter to be on loop. So I could figure out how to use loops. So I could explain it to other people. And I was like, okay, but wow, what a big difference. Because I had taught myself I didn't realize that at the time. But I had taught myself to sort of be a living algorithm to to add basil and take it away and Bolus in strange places where nobody would ever think to Bolus and you know, that kind of thing. And I thought I'm so good at it. Like we don't need this. And you know, but who I was so wrong, you know, because I sleep now like a regular person. And you know, and my daughter is in college, taking care of herself. And you know, and maintaining a onesies that are just beyond respectable and eating what she wants and all this stuff. So I'm always very, very grateful that that person came to me and said that but it threw me into a world. That was at first it was off putting like, you know, the first time someone says to you that a bunch of strangers like faceless people wrote code that is going to know it's going to talk to your insulin pump and a CGM and it's going to make decisions about your insulin. It's mind numbing at first like Well, that can't be right. Like that. Like how does that happen? Ben, but then one day you guys came along and said, We're gonna take that code, and we're gonna get it FDA approved. And again, I was like, I don't understand how that works, either. So can you tell me that first? How was it? I know it is I just don't understand the process. How is it okay for you to go online and be like, here, we're taking this code? And we're going to put it through the FDA? Is it because it doesn't belong to anybody to begin with? Or can you explain that whole thing to me?

Howard Look 10:26
Yeah, it's a really great question and really gets to the heart of the ethos of the do it yourself and open source software development community. So you mentioned GitHub, GitHub is just a place online where people like to store their source code. And it happened to be very happens to be very popular with people in the open source community, as a way to share their work with other people. And so to tell the story, I have to back up a little bit, my daughter is in the same zone as your daughter, she's 22. Now was diagnosed when she's 11. She's a senior in college now and doing great. And back when she was a freshman in high school, one of the first open source do it yourself projects that came out was called Open APs. Scott Lee brand and Dana Lewis, along with building on top of the work that Ben West and John Kostik had done, made that happen. And my daughter, Katie, is Dana has the actual list. I don't remember the number. It's somewhere between 15 and 20, was my daughter was somewhere between number 15 and 25. And I don't remember the actual number, but it was very early on. I started meeting other people like Brandon Arbeiter, my colleague and Ben West, who were using open APs and getting amazing results. Like you, my wife and I, we were really struggling, I think is a fair word, you know, we would take turns getting up at night to check our daughter's blood sugar when she was having a rough night, we really knew there had to be a better way. And we went I started seeing what was possible. Based on a software algorithm making the decisions, it was just super clear to me, that software could do a much better job of making the minute to minute decisions like you and I can do a great job or daughter's can do a great job. But we're not going to stop every five minutes and do the math and figure out what the right thing to do is tirelessly, the software can do that. And so I did the work to build open APS for my daughter. In the beginning, it was this clunky rig with a big giant battery and a Raspberry Pi and the CareLink stick. And I every day, my job in the morning was to pack it all up and put it in a little camera case and stick it in her backpack and send her off to school. And then every night I took it out and made sure it all got charged and you know, logged in to make sure everything was working. Okay. And even with all that effort, it was totally worth it. Because like you said, there were really two big impacts to that one was my daughter, for the first time since being diagnosed could go back to living a much more normal life, she could just go about her day as a teenager, and not have to worry that she was going to go low or not have to worry that she was going to go high, because the system would just deal with it. And then the big win for my wife and I is not only could we worry less about her, we slept better. So it was just better for us as parents and better for our marriage and just better for our family. So it was super clear to me early on that that was the way things needed to go. Fast forward a couple of years. Loop becomes a project I was very fortunate to see loop early in its development cycle. I think the first person to show it to me was Ben caimans. At the time, he was VP of Engineering at Cana COMM At Academy. He lives with type one diabetes. And he was friends with Nate rec lift. Nate wrote the original version of a loop. And I went out to breakfast with Ben and saw what he was using saw the Reilly link the little doodad that you need in order to make it talk to a Medtronic insulin pump at the time. And I was like, what is that show me how that works. And he talked me through it. And so I was immediately hooked. I immediately got myself a Reilly link. I went and built it myself at the time early in the evolution of do it yourself loop. It was one big giant Google document that Jeremy Lucas and Katie De Simone had worked on. And I powered my way through that Google document. It took me half a day, but got it up and running. And it was incredible. So not only really didn't have that automation component, the ability to make decisions every five minutes, but because it was iPhone based, it meant I didn't have to bundle up that crazy battery, Raspberry Pi, stuff to send with my daughter, she could actually just control her diabetes from her phone. And it was it was absolutely mind blowing. So the cool thing about the work that all of these people did, you know, going way back to Ben's work, reverse engineering, the Medtronic insulin pump, John caustics, work, reverse engineering the Dexcom je for at the time protocol, the work that peach Suam did in order to design the Reilly link. And then the work that Nate rake lifted to build and publish loop. They all made it openly available, every single one of them said, I've done something good, this is going to be helpful for the rest of the diabetes community. And I'm not in this for the money. I just want to help people. And so they made it available. And to me, that is just one of the incredible stories out of the diabetes communities. How many people have done that how many people have said, This is not about the money. This is about helping our kids live more normal life, this is about helping ourselves to not have to have fear that our kids are going to make it through the night. And so we're just going to put this code out there and help as many people as we can. You asked, So how does it work? So everybody I mentioned, put their code online, most most people use GitHub these days. But it's not always GitHub, it's just a place to store the source code. And they generally make their code available using what's called a permissive open source license. So a lot of people have heard of the GPL, the GNU Public License, that's a less than permissive open source license that requires you to contribute your changes back. Lots of good reasons to do that. There are also permissive open source licenses. The two most notable ones are the MIT license and the BSD license. And those two licenses are really short. And you put them at the top of your source code. And it basically says, use it your own risk, do whatever you want, take it, change it, it's yours. The only requirement is that you put this copyright notice at the top of the file, you can do whatever you want. And that ability is what lets people take all these components and mix them up and do new wonderful things like create open APs and create a loop. And there are lots of other examples of that. So what we at tide pool decided to do was to take that open source code that Nate had published that each one had published. And we brought it in to tide pool. And when I say we brought it in, what does that mean, on on GitHub, you do what's called Creating a fork, it's really just making a copy of the code. But now all that code lives in tide pools account. And so we can make changes to it, we can publish those changes, and other people can take them if they want to. But because all of those people publish their code with a permissive open source license, it also means that we can bundle it up and package it and take it to the FDA and say, Hey, here's this work that we've done. Is it okay for us to call this a product that we're going to ship to the World Within FTAs regulations, and put it in the app store? So that's the work we did between 2018. And now 2023?

Scott Benner 18:48
Wow. Can I ask a question about that? Yeah. What stops somebody now that you have an FDA approved from resharing, the code online as the official tide pool code that you can just do DIY

Howard Look 19:00
does, nothing, nothing stops them. And in fact, we have published all of our code via open source that they can't call it tide pool. Dry pool is a trademark trademark name, and they have to get our permission to do that. They also can't say it's FDA clear. The thing that is FDA cleared is the package of the software compiled built. That includes all of the clinical evidence that they that we submitted all the verification and validation testing that we did all the human factors testing, we did a long laundry list of things that we needed to do in order to submit it to the FDA that we own that FDA clearance is that clearance.

Scott Benner 19:41
It's a that's why I wanted to bring it up that clearance encompasses much more than just the code that is the app. It's That's right. We're working on for all these this time now.

Howard Look 19:53
That's exactly right. In fact, if it were just the code, it would be easy because most of the code existed for us As long as DIY loopers have been using DIY loop, the work in getting to FDA clearance is a whole bunch of things. And I won't go into all the nerdy regulatory detail, but you need to submit clinical evidence. So the way we did that, with the FTAs encouragement was we collaborated with the DIY community and our friends at the Job Center for Health Research. And we did the jig, or sorry, the loop observational study. So the observational study loop was over 1000 people using the DIY version of the loop, many of whom hang out in the loop Facebook group, over 850 of those people ended up submitting at least six months, if not 12 months worth of data that we then gathered, actually, the Job Center for Health Research gathered it, they then did a bunch of statistical analysis on that data, we ended up with a two or 300 Page clinical study report and a bunch of other data analyses that we did. That package of clinical data is part of our submission, and was part of demonstrating to the FDA that the loop algorithm was safe and effective. So that's one big piece of it. Another big piece of it is what's called verification and validation. Most people just call it V and V for short. And that's really the effort to not just test the software, but to document with full traceability that you know that the requirement, the specific user story that is intended to be done, is working the way it's intended, and that you can demonstrate through test documentation that you have completely fulfilled that requirement and have reduced whatever risks may exist in that software. So we did a huge risk management effort, we did a huge verification validation effort that was part of our submission. And we're super proud of that. We also did Human Factors testing, one of the things you're required to do with an FDA submission is demonstrate that your software can be used by the general population. So we actually along with our partners at a firm called core HF and Philadelphia, ran rigorous formal Human Factors usability studies, where they gave people very specific tasks, and had watched them, do those tasks, and then recorded the data. Now, sidebar on this one. This is one of the things that was really challenging about our submission, we were ready to start our human factors test thing right around February, March of 2020. And typically, the way human factors testings work is you bring people into an office, and you sit them at a table and you give them the training, and then you have cameras all over them. And you have a one way mirror and you record the whole thing. That's all fabulous, unless a global pandemic breaks out. So right around the time we were starting, are getting ready to start a human factors testing, we had to completely redo the Human Factors protocol, because of COVID-19. We ended up running are human. So first, we had to redo the protocol to make it a completely remote human factor study. So people did the study from home, we recorded them over zoom, we recorded the screen of what they were seeing on their phone. And we did all that. And it was I don't know if anybody had done it that way before. But it was certainly new and novel for us and new and novel for the team we were working with. So we had to generate all that data and then submit that as part of our submission. And we did it it took extra time. But by August, September, we were doing full remote human factor studies.

Scott Benner 23:53
Can you tell me? Did you learn enough about the process with the FDA that if you had to do it again, do you think there would you be able to streamline what you did the first time? Was there a lot of learning? Oh,

Howard Look 24:03
heck yeah. Heck yeah, there was a ton of learning. The FDA calls us a first time sponsor, tons of things that we would be much, much better at doing it the second time. On top of the fact that now that we have a cleared system, that system becomes what's called a predicate device. So any future submissions we do will refer to this submission and say everything about this is the same except these parts and then they only have to look at the iterative parts.

Scott Benner 24:35
You know why I'm asking you that right? Because absolutely one of the best parts of loop is how, how flexible it is, and how it it morphs and changes so quickly. And you know, people from from my perspective, you feel like that happens more quickly, because you don't have to go to somebody at the end of a change and say, Hey, is this okay? But like, I mean, certainly example like I, what the version you have gotten through like, when did you start? What like what, what? What year did you grab the code and start this whole thing.

Howard Look 25:10
The process started in earnest mid 2018 2018.

Scott Benner 25:14
So now in 2022, my daughter's using loop three, I guess. And in the past, I've used the Peet's branch. I've used Ivan's branch I've used you know what I mean? Like, I've used so many different things I've used the auto Bolus I've used, you know, what this one is going to do? I think was going to make adjustments through basil adjustments. Is that correct? And if so, are you gonna keep going? Like, are you? Like, are you in a back room right now planning on the next thing or like, I know, it's weird to ask before you get the thing out. But you know,

Howard Look 25:46
not at all 100% We are absolutely not just thinking about but working on subsequent versions of tide pool lube. And you're bringing up a really important point. And this is where what we've done, which is to mesh the world of regulated medical device software with the world of do it yourself innovation. We're now seeing what that means. We submitted in December of 2020. It's now January of 2023. That was a long review process. Some of that was due to the pandemic. Some of that was because it took a lot of time to work through with the agency, what it means to build a truly interoperable system. And we can talk more about that. But what we have now becomes the foundation for all future iteration not just for us, but for anybody else that wants to submit a device that refers to type a loop as the predicate device. So yes, we definitely learned a ton and future submissions will go way faster because of that. But also, we can build upon the work we've already done. So by way of example, since your daughter is a looper, you may know about the overrides in DIY loop. So overrides showed up in DIY loop, very much near the end of the loop observational study. And what that means is most of the clinical data that we submitted, does not include data with people using overrides. So we can't we couldn't in our submission in December 2020 include overrides as part of the functionality. Now. It's clearly up and running and working in the DIY community. We have a version up and running in our development branch. And what we can do now is on top of the clearance that we already got go back with a another submission saying, Here's new clinical data, here's New vnv data, here's New Human Factors data, we now want to add this functionality on top of what we already submitted to and it'll be much easier to do that.

Scott Benner 27:57
That's very cool. Okay, that's amazing. I appreciate you giving me that. Like, for everybody listening, honestly, because there's a lot of words like the it's loop. If you don't know anything about it, you're listening right now you're like DIY, that means do it yourself. Okay. And then, you know, like, there's just too many phrases and words that I think people don't even like you say Raspberry Pi. Like, we all know what that means. You know, then I know what it means. But you know, So context is important, I have to say, so

Howard Look 28:26
maybe I can kind of build on that just for one second. Yeah. It's It is one thing I'm gonna make super clear the thing we did, makes typo loop not be a DIY do it yourself project. So DIY loop will continue to exist, the we are not waiting movement will continue doing its thing, innovating and trying new things out. And I love that I encourage innovation. And I'm very, very happy that the DIY community exists and will continue to exist. I pull loop is not a DIY project type of loop will be in the app store, just like any other app that people download to their phone. And I think that's one of the reasons why the work we did is so important. Because there are a whole lot of people that don't want to build the rest their own system. People who are like X code, I don't want to deal with compiling GitHub exco bla bla bla bla bla, I am dude, I am one

Scott Benner 29:20
of those people. I don't I don't want to do it. And you know, the things that machinations we went through to make sure that my daughter was okay when she went away to school and to make sure she was covered if the app should crash or like something like that. I don't want to live through any of that. So some at some point, then you're going to be able to go to your doctor and get a prescription that lets you go to the app store and download your app. Is that right? Is that how that's gonna work? It's

Howard Look 29:47
close. So the way it will work is typo loop will be in the App Store. Anybody will be able to download it just like you download any other app from the App Store. In order to activate it. You're going to need an activation code, which you'll get through your health care provider, we've created a healthcare provider portal where they can go to create a prescription. And this isn't like a prescription that you take to CVS or Walgreens, it's a digital prescription. But it will send you a code through text message or email that once once you type that code into tide pool loop, it unlocks all the functionality so that you can use it. And it will cause your entire set of initial settings, which you'll establish with your health care provider to get downloaded. Now, a lot of people will say, Well, wait a minute, can I change the settings by myself? And the answer is absolutely, positively Yes. It's just that initial set that your healthcare provider will establish. We all know that diabetes is self managed disease, we all know that there are some people that are comfortable changing their settings on their own. And there are lots of people who like to do it in coordination with their health care provider. We've made it so that the health care provider works with you to establish the initial set, but then you can go in and modify it over time.

Scott Benner 31:07
Okay, that's really great. Do you think there's a thirst with the pump companies that you have agreements with? Do you call them agreements? Who's it going to work with right when it comes out? I guess is the way I should ask.

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Howard Look 36:02
Yeah, so let me tell you the history of that, and then I'll bring you up to speed where we are today. So in 2018, we announced a development partnership with insolate, makers of Omni pod. In 2019, we announced development partnerships with both Medtronic and Dexcom. Now, let me take a step back for a second. In order to use typo loop you need three things. And these three things are all part of what the FDA calls their interoperability pathway. You need a continuous glucose monitor which the the FDA calls an IC CGM for interoperable continuous glucose monitor, you need an insulin pump. And the FDA calls that an ace pump or alternate controller enabled in insulin infusion pump, and then you need what's called an IEC. That's us an interoperable automated glycemic controller. So you need those three pieces. I CGM ace pump IRGC, where the IRGC with tight pull. So Dexcom is still very much a development partner with us. And we're very much looking forward to other continuous glucose monitor companies being becoming compatible with type polu. Medtronic in insolate, at this point in time, have said that they will not be our launch partners for as as pumps, we're very grateful to them for supporting the development of tide pool loop, I will tell you that we are working with another ace pump partner that isn't ready to talk about who they are yet, but we're really excited about them. It's a company that everyone knows and we think everyone loves, and it's going to make a really great combination with tight pollute. The great thing about type ULoop is that it was architected from the ground up to be interoperable, meaning we can add new CGM and add new Ace pumps. And we don't have to submit new evidence to the agency. Part of our submission was a set of plans and processes and nerdy regulatory speak. They're called SOPs, standard operating procedures, we came up with SOPs that we agreed with the FDA. As long as we follow those procedures, we can add new devices over time without a new submission to the FDA. And so for us, we feel like that's pretty groundbreaking. Typo loop is the first truly interoperable system that is designed from the ground up to allow new devices to be added over time. Without a new submission.

Scott Benner 38:37
This might be a question I shouldn't ask you, but do you think you'll get those companies back?

Howard Look 38:43
I'm never gonna give up. Like, I think interoperability is the best thing for the diabetes community. I think if you're a person living with diabetes, you should get to choose what CGM you use, what pump you use, and what the user experience and algorithm is that you use to manage your diabetes. I think interoperability is a great thing. I think the community appreciates this approach. And I think over time, we will see that company companies will start to embrace it as well.

Scott Benner 39:14
It just, I mean, from my perspective, not knowing anything that's going on in any of those companies, but it just more options seems like a good idea. You know, I think so. Yeah. Like I, you know, it took right up until you said that, I sort of had like this little like the 10 year old me inside was all like, oh my god, the world is going to work the way it's supposed to, you know, we're going to, you're going to get this thing and it's going to just work here or here or wherever we want it to and pumps will just become like, like wheels, right? Like I'll have a car and then I'll pick which wheels I want to go on. And I thought that'll be terrific. And then you said that I was like, Oh, okay. So don't give up because and if they're listening, you should do that. It's it just makes sense. And it It's the only thing. I don't know. I mean, I can see why they wouldn't want to, I'm trying to think it through. But the other idea is that it's gonna bring more people to pumping in general. It just that makes sense to me. Anybody who's used lube would tell you I'm sure that's partly what was what happened when you were talking to the FDA. It's, it's astonishing how well it works. It's just it's really astonishing. And so, you know, I hope everybody gets a chance to use it. I have a lot of questions. Keep going. All right, I'll try to rapid fire them as best you can. Although it's the end on a Friday, we've all given up on enjoying this day, right? So we can just keep going. So you haven't joined me? At the moment? Do you have pumps that are on a compatibility list? Or are you not at that point yet?

Howard Look 40:48
We do have compatible pumps, we're not able to talk about who they are yet. Because the pump makers need to make their own decisions about when they're going to let the community know that they are going to be delivering a compatible

Scott Benner 41:02
device, whoever they are, in my opinion, they're going to have a great stranglehold on some great social media and the ability to make some exciting announcement that people are going to get behind. So I can't do you have a timeframe, you think

Howard Look 41:15
it's going to depend a lot on the device partners, and so we're ready to go whenever they are, we're gonna have some work to do with them to coordinate things like customer support handoffs, and pricing is a question that a lot of people want to understand we still going to work through that. How it's going to work, you know, will they subsidize lube? Will that be something that insurance pays for over time? Those are all details that we still need to work out with them.

Scott Benner 41:43
So I have a question. It's gonna sound shady. Sorry, I'm getting off the list here. Oh, they really stop somebody from using it. I mean, they can't stop them from DIY using it, why would they be able to stop them from using your version of it?

Howard Look 41:59
Well, our version, we are the only people that can put it in the app store. We are prohibited by law as a cleared product from distributing this until we've met the requirements that are laid out by the FDA. And one of those requirements is that there is a compatible ace pump that it can work with. So until there is a compatible ace pump, we may not put it in the app store. And as soon as there is a compatible AST pump, we can put it in the app store.

Scott Benner 42:28
My My point was that once that happens, can't I just pair it with a different pump? Like what would start?

Howard Look 42:36
Well, our code will only work with cleared compatible AST

Scott Benner 42:41
pumps. So it's on your side that it'll be it'll be I'm not calling it hobbled. But it'll make sure on your side that it only works with what's

Howard Look 42:49
right or clear. It only works with with products that meet the requirements of a cleared third party, interoperable ace pump. And

Scott Benner 42:56
one of those requirements is that the pump company wants the app to work with their pump. That's right. Yeah. Okay. Got it. Alright, thank you

Howard Look 43:04
that well, actually, let me let me let me correct that that's not completely right. There is a world in which a pump company could deliver a pump, which conforms to diabetes device interface standards, there are Bluetooth standards and I triple E standards. And it is possible that a company can deliver a pump that conforms with those standards, and not specifically say, here are the controllers that it works with. They could just say it will work with controllers that meet these standards. Yeah, that is, hypothetically possible. We haven't seen that happen yet. But I am optimistic about that in the future.

Scott Benner 43:46
I think in the original Jurassic Park movie, Jeff Goldblum says something like life will find a way and I think that's right here. So okay, we'll just keep a good example. Yeah. The algorithm that you have, will it consider digestion times? This is obviously a question from a looper, like, can you tell it like, Hey, this is going to hit more like pizza or more like candy or three hours or four hours? Can you set those with the app?

Howard Look 44:10
Yeah, absolutely. That is one of the unique and wonderful features of tide pool loop. This also exists in DIY loop. When you do a meal Bolus, you not only say here are the number of grams of carbs that I'm ingesting, but in loop you use an interface that uses emojis and the default emojis are lollipop taco and pizza. lollipop has the fastest carb absorption time 30 minutes and then taco and pizza are slower so you can say, here's a slice of Grandma's lasagna and it's clearly more like pizza than it is like a lollipop. So you tap the the the pizza icon

Scott Benner 44:54
can you still post date a Bolus? Can I you can Yeah, excellent. Yeah,

Howard Look 44:59
that's an Another great feature that we love about loop. And again, this exists in both DIY loop and tide pool loop. It's a feature that I think is really great for parents of small kids with type one, for example, you put a sandwich in front of your kid, you guess it's 30 grams of carbs, you Bolus for 30 grams of carbs, and then your kid decides to only eat half a sandwich. Well, it turns out with loop with type a loop and DIY loop, you can go back and edit that meal Bolus, it obviously doesn't pull insulin out of the body. But what it does is it modulates all future delivery of insulin to make up for the fact that it now knows that you ingested fewer carbs than originally planned,

Scott Benner 45:46
I would say that I think two of the best features that I would use all the time is that just be able to like, go back and say, Hey, we said 40, but you know, it was really 30. And you just tell it because maybe it can't get the insulin back. But it can start making decisions in the future with the idea that, hey, I think we have 10 carbs, too much insulin going, maybe I can take the basil away for longer or do something to try to impact it. And then the other thing is to be able to tell it, look, I'm gonna have 20 I'm gonna have a 20 carb impact from fat from French fries, like 90 minutes from now. And then when the loop starts seeing the impact comic goes, Oh, and you don't have to go back again and make a secondary Bolus. It's it's the loop version of, you know, like a square wave Bolus or something like that, which is

Howard Look 46:32
exactly and besides having knowledge of the carb absorption time of what you ingested. The other nice thing about the loop algorithm is that it pays attention to how your body actually reacted. Its dynamic carb absorption is the term it looks at what it predicted what happened and what actually happened. And then it uses that iteratively over the course of the absorption of the carbs in the insulin to make modifications to its prediction.

Scott Benner 47:05
Did you have to get clearance for different insulin surges that lie on the device manufacturer,

Howard Look 47:12
we did have to get cleared for different insulin, so very specifically tied pollut is cleared for use with chemo OG and Novolog. A lot of people ask about fiasco, during the clinical study, it was pretty early in the adoption of Fiesta, there wasn't a lot of data from VSP users. But over time, I think we can collect more clinical evidence and hopefully broaden the labeling to include other insulins. And just while I'm on labeling, it's labeled down to each six. Again, because there was plenty of data in the clinical study to support that. And overtime, I would expect that we can expand that as well.

Scott Benner 47:52
Wow, hey, everyone does but don't forget a Piedra. Don't worry, I know you're not going to but it's my daughter uses fantastic. Target blood sugar's user definable all the way. I mean, with regular loop, I don't know where does it stop you.

Howard Look 48:11
With DIY loop? I don't know the answer to that question with tide pool loop, the target range that is configurable by the user to anywhere between 87 milligrams per deciliter and 180 milligrams per deciliter.

Scott Benner 48:26
He's just trying to make me cry. Howard, is that what you're doing? That's beautiful. Thank you.

Howard Look 48:30
Thank you. I'm pretty happy.

Scott Benner 48:32
You should be. That's me. Hey, let me ask you a question. For the other pump manufacturers that are listening to this right now. And they're listening. So how tough was it to get clearance down to 87? Did it really? Was it really that tough of a slog like because they're all at like 112 or 110? Or something like that?

Howard Look 48:52
Well, you know, I don't know how to answer was it tough. It was a lot of work to gather, analyze and present the clinical data in a way that made it clear to the agency that this would be a safe and effective way to use tight pull loop. So was it tough? I would say it was a lot of work. And we're very grateful to the participants in the loop observational study, because the thing that made that possible was the people that were willing to do all of the work that it takes to participate in a clinical study and to make their data available so that we could include it with our submission.

Scott Benner 49:36
How valuable was that? That you were basically working with pioneers instead of people who were called through and found through like, the regular way they find people for stuff like that?

Howard Look 49:47
Oh, it was to me just an incredible testament to the willingness of the community to pay it forward. Yeah, like it is a ton of work. My daughter has been in several clinical studies. I don't know if your daughter has done that but you It is hard work. You have to answer questionnaires you have to install software to submit data, you have to be willing to let people have access to your data. You have to take home HBA when C kits, like it is a lot of effort to participate in a clinical study. And one of the amazing things about the loop observational study, as I said earlier, there were over 1000 people enrolled in the study, over 850 of which submitted at least six months and in some cases, 12 months of data. That is an enormous quantity of data, which you don't typically see in clinical trials for medical devices. In fact, if you think about it in terms of person days of use, in the study, the loop observational study, had three times the data of the Medtronic 670 G, pivotal study, tandem control, IQ study, and insolate horizon Omni pod five study combined, combined three times the data,

Scott Benner 51:04
do you know that I did a little survey? I, I get a lot of help from wonderful people sort of like us. So I, this MPH student came to me. She just just graduated from Hopkins, and she wanted to help the podcast somehow. And she said, How can I help? And I said, Well, I'd like to do a survey, like a legitimate survey about how the podcast helps people. And she helped me put it together. And we're still collecting at this point. But we've only been at it for about two and a half weeks, we have well over 700 respondents. And she just texted me one day. And she said serious medical organizations struggle to get anywhere near this number of respondents to a survey and I said, Yeah, well, these people are motivated, because the podcast helps them like if they're trying to give, they're looking for a way to give back. And it seems like you had the very same thing. So is it fair to say that the goal to having an 87 target on your system, get through the FDA is your desire? Your desires? What made it happen, right, your desire to do that, to well, it

Howard Look 52:06
was very clear. So first of all, before I answer that, I need to give a huge shout out both to the looped community that people who mostly participate in the loop Facebook group, but very specifically to Katie De Simone. Yeah, Katie was the conduit. She was the person who sat in that community and said, Hey, everybody, you've all been asking me how you can help pay it back or pay it forward. This is how you can do it. You can participate in this clinical study. So Katie's work to coordinate all of that, basically, as the liaison between the loop community. And the Job Center for Health Research that ran the study was just absolutely incomparable. We could not have generated all that data without Katie's efforts. And without the loop community, we

Scott Benner 52:54
don't know each other, personally, but I have such a warm feeling towards her because she's the first person to come on the show and just kindly explained to me while I was going, I don't understand I don't understand, like walking through a loop was to me so many years ago now. Yeah, yeah. He's

Howard Look 53:09
an amazing human. And I love her dearly. Yeah,

Scott Benner 53:11
me too. Okay, so. Alright, so 87. Cool. I don't even care what the top number was.

Howard Look 53:17
Oh, I didn't actually answer your question. Oh, sorry. Yeah. Yeah. So first, how did we come up the data with the data, and that was because of the loop community and the work that Katie did interfacing between the Job Center for Health Research and the loop community participants in that study. At the end of the day, we took all of the data. And we looked for very obvious places where the balance of risk of hypoglycemia and the safety of the lower target range made sense. And so that's just a ton of data analysis work that was done both by our data science team, and also the Job Center for Health Research. And then ultimately, it was a back and forth conversation with the agency where we presented the data we showed them where we thought the lines should be drawn and why we thought those lines made sense. And they agreed.

Scott Benner 54:09
I feel like the answer to this question is going to be no because of the time, the timing when you jumped in. But does the app have the ability to enter non pumped insulin like a Frezza or an injection? And to give it its iteration?

Howard Look 54:22
That's a great question. It currently does not have the ability to enter outdoor, non pump insulin. That's obviously a feature that we know a lot of people would love to have and some will consider for a future version of title.

Scott Benner 54:37
Okay, I'm sorry, I'm scrolling past the the questions that and by the way, it as we're thanking people, the listeners of the podcast sent four pages of terrific questions for me to talk to you. That's great because they probably know how or the what would happen is I would start pontificating, and then you and I like an hour and a half from now we'll be talking about something silly and they'd be like nobody asked any real questions in that would be my answer. They're trying to keep me on brand here. Boston, of for people who plan on just continuing to use the AI. Why does it help you at all? If they get the prescription? Like, here's the this is this question because this is somebody trying to steal they want to give back still.

Howard Look 55:16
Oh, that's super helpful. Does it help tide pool if someone gets a prescription but then continues to use DIY loop? I can't think of an immediate reason why that would be helpful. But let me let me go think about that. I couldn't either.

Scott Benner 55:29
But I just I thought it was another example of just people wanting to do something.

Howard Look 55:33
Here's a thought and this is, you know, one of the reasons again, why I think what we're doing is valuable. We have heard and you know, this is anecdotal, but I think there are some folks I know in Europe, for example, that have studied acceptance of DIY systems in endo clinics. We've heard anecdotally that there are some providers that are really uncomfortable with their patients using DIY systems. So one of the big benefits, I think of tide Palooza, being an FDA cleared product and being available in the App Store, is that for those people that have providers that are a little queasy about their patients beyond the DIY systems, this is a great alternative. So not only does it give the person living with diabetes, who may not want to build their own system, an alternative option that they can look at and go, Oh, great, that's FDA cleared, it also gives their provider a little more confidence because their provider can say, Okay, I'm no longer scared that you as my patient are using a system that I don't know anything about.

Scott Benner 56:40
Do you think that's mostly everybody just, I'm just gonna say what I was gonna say that's just as covering, right? Because like I've, I've seen doctors people mentioned and they go, no, don't you do that I've heard, I've heard people be told, if you do that, I'm dropping you as a patient. And I've seen people, doctors go, Cool, let's do it. And I've seen the one where the doctor pretends they don't know what you're saying they almost lost all their way through it when you tell them and then they just act like you never said it and keep going. I've seen all three of those things happen. So this is going to take any kind of that uncomfortableness for those types for those physicians, and allow them to say, hey, we've got a good, we've got a good thing for you to try here. It's FDA approved, they can get behind it. So then the next question comes, is who's going to help? But this is something I think about all the time? Are you guys gonna get involved with the training? Because we always say like, oh, the doctors will take care of it. But that's not really going to happen. You don't I mean, like, they're not gonna understand loop the way you do, or the way I do, I could, I could grab somebody's loop app right now who I don't even know and probably get it working in a day, you know, like and make adjustments to their stuff. But that's unfair to ask the doctors to do. And, you know, especially when things don't, what do I want to say, I was really good at using insulin. And then I got to watch Nightscout. And then I got way better at it. Like watching the algorithm do what it was, it was like a was like a Master's class in how insulin works. And I already had a good idea about it. But just to watch it, take basil away, and then give a little back and give some extra and then take it away again, I was like, Oh, my God, this is just a dance that never stops, really? Because I learned a lot that the doctors aren't going to get to see that, or are you going to figure out a way to train them? Or how does that gonna go?

Howard Look 58:29
Yeah, so let me unpack that question. There's a lot in there, how's training going to happen? How will doctors get access to the data? So we developed training both for the person living with diabetes, also caregivers, so part of our human factors, testing was testing what are called dyads. So parent and child pairings. So training that is targeted at parents and including training that is targeted at adolescents who are on the transition to self managed care. So we created a whole curriculum that is actually both built into the application, but also exists in traditional user manual form, and then take all of that we recreated healthcare provider training. So the healthcare providing Provider Training exists in traditional forms, we will also have lots of content on our website in terms of knowledge base, and support articles. And we will keep doing something we've been doing for years, which is online, both live and recorded webinars to teach people how to use it. At the end of the day, we feel really strongly that people need to be able to learn how to use it on their own their healthcare provider will be there. But we can't be dependent on the health care provider to provide training to the person living with diabetes that has to be self evident. And the way we do that is by building training right into the app, you have to go through an entire onboarding experience before you can start delivering insulin, and then there's help within the app at all times. If you have questions about something, how something works, you can actually get help from right within the app. So one of the things I'm really excited about is we heard both during the Human Factors testing, and you can also hear over and over from people in the DIY community is how elegant and simple using loop is. And I think that really helps make learning all that material much easier. Because you can look at it. Look at the homescreen of loop and just see, Aha, I see what my glucose is doing. I see what the insulin is doing. I see what the carbohydrates are doing. That all makes good sense to me. Yeah.

Scott Benner 1:00:44
Well, and then I did a thing I talked about earlier, I just did Nightscout as if everybody understands that. So that's an app I use to to, like, I can see my daughter's blood sugar and what her loop is doing. Are you guys going to have like a follow app for for a caregiver? Yeah.

Howard Look 1:01:00
Super, super, super question. And sorry, I forgot to touch on that. So popping back a level, I pull started life as a data management platform, and we are still a data management platform. So tide pool lube will automatically up to upload data to tide pool. So people will be able to see their data in tide pool for web in tide pool mobile. And yes, we will have a follower experience. That'll enable loved ones to be able to see your glucose and insulin data remotely.

Scott Benner 1:01:34
Yeah, I was gonna say you're gonna be like GitHub, but like, right. But nobody will understand that. So I'm not gonna say it. And let me always be clear, I'm always only about 90% sure of any of the things I'm saying around lupus, right, because I just am so not technically adept about about that side of it. But also, I think that gives me a lot of comfort, because, and for other people, because with a little bit of help, I was able to figure out a thing that my brain doesn't naturally do. Like when you were talking about like screens that explain things. I picturing myself sitting there going next, next, next and not reading because by because I'm broken. And and that's not a thing I learned by doing. But it's very comforting to think that it's going to be out there for people like this. And that, that that especially that that that idea that I'm I don't mean it this way. But the idea that I'm doing something wrong, or that it's not like that somebody hasn't said is okay, like just to take that weight off of people saying this is the FDA said this is okay. Like I think that's going to be really helpful for a lot of people and to help them move forward. Because I haven't said it to you yet. But I think algorithms are 1,000,000% the future and the present of how people manage can be managing their their insulin, it's just, it's just such a leap above trying to do it yourself.

Howard Look 1:02:58
I experienced Totally agree. I you know, obviously what we both want for our daughters is a cure for type one. Hopefully, research will pan out and that will happen in their lifetime between now and then I completely agree that the next best thing in terms of both achieving great outcomes. But even more importantly, for me, reducing the burden of living with type one is to have automated insulin delivery. So I'm very excited to that we're participating in that. And

Scott Benner 1:03:27
a tiny little thing that I always throw in, I think Aaron Kowalski sent it to me once it's just even if we could just make the cannula material better. So there's not, you know, so that sites work more the way you expect them to consistently would be such a big deal to I didn't ask a secondary question about the weather. You have a follow up. People also want to know if you can Bolus from that app like will a parent be able to Bolus from their own phone?

Howard Look 1:03:52
Yeah, so the version of tide pool loop that was just cleared does not have that functionality. We know that is something that people really love, and it's something that we will absolutely consider for future versions. I will tell you that. One of the things we spent a lot of time with the FDA on is cybersecurity. And once you open that up, it creates a mechanism by which someone could remotely deliver insulin, which definitely should give everyone pause. That's I think it can be done safely. But it's going to take a lot of work to demonstrate how it can happen safely.

Scott Benner 1:04:30
Do you have um, were you able to get Apple Watch? Can people use your bill? Absolutely.

Howard Look 1:04:36
Yeah, type of loop absolutely has, as part of its feature set the ability to use an Apple Watch and to discreetly manage your diabetes right from your watch. Okay.

Scott Benner 1:04:47
What are some of the well my first question is Where can people go to see a list of the functionality for assuming you have a website where I can see that?

Howard Look 1:04:57
Absolutely, we'd encourage everyone to go to tide pool.org/loop And you can read all about the tide pool loop and also sign up for our mailing list to get updates on things that are coming down the road.

Scott Benner 1:05:11
Do you in your mind, you don't have to share them with me. But is there a list of things like you said, like you, you're going to be able to add things to the to the app as you go. Like, I mean, the one that occurs to me is like auto Bolus, right? Adjustments adjustments through auto Bolus instead of through, like Temp Basal is that like one of the things you're looking at now?

Howard Look 1:05:30
That is absolutely something we're looking at right now, I would say that I talked about overrides. That's clearly the next big suite of functionality that we need to consider for the next version of tide pool loop. And we're working on that right now. And then the biggest thing, quite honestly, that we get asked about, and that we think is important is Android support. So this version of tide pull loop works on an iPhone, we chose that because that's what DIY loop did. So we were starting from an incredible foundation of an iPhone, an Apple Watch app written for iOS. But clearly, if we want to fulfill our mission, as a nonprofit, our goal is to have the broadest possible impact and to enable equitable access to the best possible diabetes technology. And in order to do that, we've got to get bloop onto Android. So that's really important to us as well. I can't say when that will be done. And when that will be ready. I just want everybody to know that it is really important to us. And that's part of our mission. As a nonprofit,

Scott Benner 1:06:35
you just reminded me by saying you're a nonprofit that I have a question here. I think what the person is really asking me is, how do you make money? Like, like, is it like, like, at first I thought, Oh, it was an angel investor that got you started? And then But then how does like you've got a big group of people working for you like, how does that all work?

Howard Look 1:06:55
Yeah, I really appreciate the questions. So over time, our goal is to be a self sustaining nonprofit. And we are generating revenue. Now. We get money from the device makers that we partner with, they pay us to integrate their devices into type of loop. And then over time, they will pay us because the more people that use type of loop with their devices, the more devices they will sell. So they will give us a share of that revenue as well. We also generate revenue through our data management platform, we always have had and always will have a free version of the data management platform. But last summer, we launched what we call tide pool plus, which is an enterprise version of tide pool for web that's very specifically geared towards the needs of enterprise healthcare provider clinics. So it provides functionality, for example, that allows it to integrate with their single sign on mechanism. It has functionality that allows them to manage their entire population of diabetes patients. So there's a dashboard where you can, for example, say, show me all my pregnant moms living with type one, or show me all my new diagnosis patients, or show me all my patients that are struggling with hypoglycemia, so that I can provide better proactive care, okay. And it also lets you do integration with electronic health record systems, for example. So we generate revenue through tide pool plus, which is our enterprise version of tide pool, we generate revenue through tide pool loop, doing both development work, and then ultimately ongoing. And then the final bit is we get incredible support. And I've got to give a shout out to JDRF to the Helmsley Charitable Trust in particular, that have really supported us tremendously over the years, and we would not be here without their support. And there are literally 1000s of individual donors that have reached out. And we get donations everywhere from $1, to $5, to $100, to 10,000, and sometimes hundreds of 1000s of dollars. And every one of those donors makes a difference to us. And it helps us do our work and continue on our mission. So for folks who are listening, who want to help support us, thank you in advance if you have support us, and if you'd like to support us, you can go to type o.org/donate

Scott Benner 1:09:25
That's really wonderful. It's it's actually it's, it's encouraging it really is to just to know that it's that the people don't just say, Oh, that would be nice, but I'm willing to do a thing and I mean, I listen, it's not it's not money, but I have that feeling a little bit like I'm trying to spread the word about algorithms because I just I just know how it will help people. And that's great. It just I think any I think anywhere where people can do something that fits in with their thing is really valuable.

Howard Look 1:09:55
I thought of one other way we make revenue and I'm remiss and talk combat. So I want to make sure your listeners know, one of the things we do is when you make a type pull account, we asked you, would you like to donate your data for research and product development? And 10s of 1000s I think we were well over 30,000 or 40,000. People have checked that box and said, Yes, I'd like to donate my data. That's a pretty amazing thing, because it lets us bundle up those datasets. We call this the tide pool Big Data donation project and create these massive longitudinal datasets, we anonymize them, we strip out all identifying information, but we bundled the datasets together. And we can give them away for free, which we do often to nonprofit academic researchers. But we can also license those datasets to for profit companies, whether they're doing pharmaceutical development, or diabetes, device development. And that's another way that we make revenue. One of the things we do as part of that program, because we're a nonprofit is we want to give back a little to the other diabetes nonprofits that are working so hard to make things better for everyone. So we let you choose which diabetes nonprofit, you want us to share that with that revenue with and we share 10% of the revenue that we get through the type of Big Data donation project back with other diabetes, nonprofits, nonprofits, like children with diabetes, JDRF diabetes sisters, beyond type one, there's a whole list there that people can choose from.

Scott Benner 1:11:34
That's amazing. Thank you. I'm glad I asked that question I almost skipped over. Now I'm like, well, that worked out tide pool just in America or other places.

Howard Look 1:11:45
So the company is based in the US, but we do have international employees. We're a completely remote organization. I'm sitting here in Mountain View, California. Syrah is in Southern California, we've got people all over the US and in Europe. And over the course of time, we've had people in New Zealand and Australia and lots of other places Canada. In terms of use, we officially support our use in the United States. For our type of data management platform. We know we've got tons of users internationally, we are GDPR compliant, which is the data privacy regulation in the European Union. We don't specifically claim that we meet any locales, data privacy requirements, there are some pretty funky ones. Sometimes countries will say, Well, your servers have to be in our country. We don't do that yet. But we also don't shut people off. If we know that they're in another country. We know we've got a ton of people in Israel, for example, there's a ton of people in Northern Europe. And so our goal over time is to much more officially support other languages and other locales. Right now, we're largely US centric, but we definitely have a pretty healthy US population outside the US,

Scott Benner 1:13:05
for people who are familiar with lube and probably familiar with the app that you started with. Has there been anything like we talked about some things you've put into it? Was there anything taken out of it at the behest of the FDA? Or did it pretty much stay the way it was?

Howard Look 1:13:21
It is largely the way it was, I think the constraints on settings were the biggest thing, most notably target range being constrained to 87 to 180. And that wasn't necessarily something the FDA asked us to do. That was something that we knew we needed to do, in order to support support our submission with the clinical data we had. But by and large the features and functionality in tide pole loop map to the features and functionality in DIY loop. It's the DIY loop of mid 2020, however, so we have a little bit of work to do to catch up. But we'll be able to do that much more quickly. Now that we have clearance.

Scott Benner 1:14:00
Did they ask you to add nags? Like after a new site change? Like, don't forget to check your blood sugar like an hour after you made the site change? Did they ask you to put any stuff like that in?

Howard Look 1:14:11
They did not ask us to do anything like that. We did spend a lot of time with them talking through how alerts and alarms will work. And I want to give the agency a lot of credit on this. They really understand that there are just times when you don't want your phone to make noise. If you're getting married, you're in a wedding chapel, you're in a choir singing, you're in a recording studio. You know, it's terrible to think about but if you're in a lockdown situation in a school like there are just times when you don't want your app making noise and the FDA and tide pool iterated on a design for alerts and alarms that makes it possible to provide safe alerts and alarms arms that let you know when there's something you need to pay attention to. But they that also lets you mute them for significant periods of time so that you can accommodate those situations.

Scott Benner 1:15:12
Here's the question. Does this make my phone a medical device? Does that not have to buy me an iPhone knows what I'm asking?

Howard Look 1:15:23
Your iPhone is still an iPhone. Your iPhone is being used as a platform for software as a medical device. I don't think I can answer the question if if it actually turns I mean, the iPhone is not submitted to the FDA as a medical device if that's

Scott Benner 1:15:41
your question, right. But I can't run the app without it. That's right. Oh, I'm totally calling that No, I see. What's that? Yeah. Okay, I'm giving this a shot.

Howard Look 1:15:49
I'm gonna I'm just gonna go out on a limb and say your insurance company is not gonna buy

Scott Benner 1:15:53
Oh, no, they're gonna turn me down. Probably really disappointed. But I'm still gonna ask. Let us know how that goes. Oh, sure. It'll go like this. Hello, hello. I think they hung up. Well, I'm sorry, I lost my space here for a second. Oh, profile switching. People are wondering if you'd be able to like, you know, by using a menstruating woman as an example, like, you know, could I do pre menstrual during the event? I never know what to call it like that kind of stuff. Like, do you have that?

Howard Look 1:16:29
Sorry, I just lost a deal with it later. The work that we are working on now that will add override similar to what you see in DIY loop, I think it's the way that that will be accommodated. So you'll be able to have different forms of overrides for different parts of your menstrual cycle. Okay, but that does not exist in the type of loop that was cleared this week.

Scott Benner 1:16:59
Gotcha. I'm skipping that one. Hold on a second. I did that one. I'm doing good here. Howard. You are actually you're doing really well. I'm basically just reading.

Howard Look 1:17:10
These are great questions. Your your listeners really know what they're listening to and know what they're talking about.

Scott Benner 1:17:16
I agree with that. Can you be a salesman for a second? And answers to answer this question, why do I want this and I don't want control IQ or I don't want the Medtronic one or I don't want on the power? Like why do I want yours?

Howard Look 1:17:30
You know, I'm gonna politely declined to answer that. I think it's a great thing that there are different choices in the world. I think control IQ is going to be the right choice for a lot of people, I think Omni pod five is going to be the right choice for a lot of people. And I think for a lot of people type loop will be the right choice. What I want to see is more interoperability. And more choice, I want people to be able to say that's the right CGM. For me, that's the right pump for me. And this is the right user experience and algorithm for me, I agree with

Scott Benner 1:17:59
you, I was just asking the question, but But I, I 1,000,000% agree with you. I don't care. Honestly, no one should care. One company's not going to get all the business, there's somebody's always going to want to be to bliss or not want to be to bliss or want to use this, you know, want to use a Dexcom or rather use a libre or something. I mean, somebody eventually is going to want to use a Medtronic sensor. Sorry. And, you know, like, like, so when that happens, you don't want to just be like, Oh, now I have to use this thing. And at some point, all those companies have to see that there. I talked to too many people who are like, Well, I have a as an example, I have a Medtronic pump, but I want to use a Dexcom. And so they end up leaving Medtronic because of that. And I'm sure that happens in all different directions with all these companies, you would think that the idea of interoperability would be you think it would be paramount to them. Anyway, that's how I say it. But I'm not going to make the answer that but thank you. Is there any?

Howard Look 1:18:58
I'll answer it. I totally agree. I think that choice is a good thing. I think interoperability is a good thing. And I think the thing that interoperability and choice also lead to is greater access. At the end of the day, what I really want to see happen is everybody, everybody who is living with diabetes to get access to the right technology that works for them. And we just have a lot of work to do. And this is you know, way above my paygrade but as I'm sure your listeners know, the reimbursement system, the health care system, the way access to technology happens today is not fair and equitable. And we are a long way away from the new diagnosis kid with type one who's got a single parent on public assistance assurance, public assistance, insurance, getting access to the best path possible technology. And our small part in that is let's make it easier. Let's make It easier with an interoperable system so that someone can actually get access to the best possible care. Yeah, there's lots more to be done. But that's what I want to see happen.

Scott Benner 1:20:10
Amen. That's well said. Alright, Howard, let me ask you this. Is there anything? I didn't ask you something I should have? Wow.

Howard Look 1:20:17
We covered a lot of ground, Scott. I can't think of anything off the top of my head Syrah. Is there anything that you can think of in your head?

Scott Benner 1:20:28
I know that I was. The one thing I never do understand is that the difference between like, cleared by the FDA and approved by the FDA? Oh, yeah, that's a thing.

Howard Look 1:20:39
Absolutely. They are two different things. Here's the 62nd the digestive what that means. The FDA thinks about medical devices and products in risk levels, risk stratification. There are class one, class two and class three devices. class three is the riskiest and class one is the least risky. So tongue depressors, and band aids and over the counter medicines and things that don't carry a lot of risk are class one. Historically speaking, anything that is new is automatically designated class three because it carries unknown risk. What the FDA did was they created these pathways, and they're called de novo pathways, and de novo means we are going to consider this from new it means from the new and Latin as a class two device. So these interoperability pathways, the AGC, I, CGM and Ace pump designations that I talked about earlier, are all class two devices. When you submit a class three device, you have to go through what's called the PMA process premarket authorization, so are premarket approval. And so that's when you get FDA approved is when you have a class three device with a class two device, you're getting what's known as 510, take 510 K clearance. And what that's saying is, my device is just like this other device that is the same other class two device, and so you get FDA cleared. That's what we just did, we submitted a 510 K application, and we got clearance, or tied pollute our predicate device was control IQ. So part of our submission was going feature by feature capability by capability and saying, here's why our device is what's known as substantially equivalent to the control IQ. What's cool about us getting clearance now as a class two device is we can become the predicate device, or all future devices that want to do similar things to what we've done. Okay. We're pretty proud of that.

Scott Benner 1:22:47
Wow, you should be That's wonderful. This whole thing is amazing. You know, I have to tell you, just to give people the idea of about a span of time, I looked while you were talking, Your Honor, you brought up Dana and Scott, the husband and wife who back when open APs and they were talking about that. They were on my podcast on episode 63 and 64, concurrently. And my best guess is that you're going to be episode like 838 or something like that. Whoa. And when they were amazing, when they were talking back then it was like, I was gobsmacked. I was like, this lady says that, like you don't even know I'm like, she's saying that there's a thing on a thing. And she's saying Raspberry Pi. And I'm like, This sounds like stuff I don't understand. And then she's talking about how great her stuff is, and how our outcomes are. And then I didn't think of it for years. Like it just it felt to me like, like back then it just felt to me like it was three people who were doing this thing, and I happen to talk to a couple of them to see that. I don't know that. I mean, how many years later that is that was the beginning of 2016 that that happened? Well,

Howard Look 1:23:51
if I can pile on that for a second. I think Dana and Scott St. Louis and Scott Lee brand and it may be pronounced Lybrand, I apologies apologies, Scott, if I've got wrong. And before them, John caustic, who did the work to reverse engineer the Dexcom G for Ben West who did the work to reverse engineer the Medtronic insulin pump. And there's a whole bunch of other folks who worked on Nightscout. And I'll miss a bunch of names if I even try, but they all know who they are like those. Everyone who did all of that early work, laid this incredible foundation. And I often say that at tide pool, we're standing on the shoulders of giants. And it's very true. We could not have done this without the work of all the people I just mentioned without the work of Nate rock left, who wrote the original version of loop. And to me it is just incredible testament to how this community wants to make a difference. Like I said earlier, every single person is just saying hey, I think there's a better way to do it, I'm gonna go do it, I'm going to do it, I'm going to use it on myself, I'm going to share my work, I'm going to take contributions that other people make and make it even better. And everybody did that. And I hope in our little way tide pool is doing that too. We're sharing everything we're doing. openly, all of our code is out there, we're actually publishing all of our regulatory interactions openly because we want to help other innovators and entrepreneurs with their interactions with the FDA. And, you know, at the end of the day, it takes a village to help deal with this crappy disease. So we're trying to do the best we can. I

Scott Benner 1:25:38
can't thank you enough for having the idea and bringing it forward like this. And for all the people like us, I can't name them the way you can, but I'm so grateful for all of them. My daughter's life is, is monument monumentally different, like just different than it would have been otherwise? And I'm honestly, I'm not kidding you. I was I was gonna kill myself with the not sleeping thing. You know, the first the first few years I taught my talk myself into believing I was one of those people who didn't need sleep. Like you know, we all tell ourselves that at one point, like, I'll be okay. But man six, seven years into it, and I was I was hanging on by a, by a shoestring you know, and I hear it's a big deal for me. So and yeah, a lot of same people. Same.

Howard Look 1:26:20
My daughter has benefited my wife and I have benefited and 1000s of other people too.

Scott Benner 1:26:24
Okay, tide. pool.org. Right. That's it. All right.

Howard Look 1:26:28
I pulled out org slash loop, sign up, and we'll keep you updated. Howard, thank

Scott Benner 1:26:31
you so much.

Howard Look 1:26:32
I pray thanks for having me on Scott. I really appreciate it, I do too.

Scott Benner 1:26:41
First, I'd like to thank Howard for coming on the show and talking to me today about tide pool loop. And of course, I also want to thank the Contour Next One blood glucose meter, contour next.com forward slash juice box head over there today. See the meter that my daughter uses. It's incredibly accurate. It's one of the reasons I love it the most. Also want to thank us Med and remind you to go to us med.com forward slash juice box to get your free benefits check. Or you can call 888-721-1514. Last reminder, juicebox podcast.com. type one diabetes is our private Facebook group in the feature tab, a list of algorithm based episodes where you can find them at the top of juicebox podcast.com. They're in your episode guides. That's where you'll find the episode guides, or they're in your podcast players. Just use a search like Juicebox Podcast and then you got to find out the names of the episodes. There's like Fox and the loop house and the loop de loop. And you'll see there's a bunch of in there, go find the list. I'll I'll do that. You know what I'm in a good mood. I'll put a list of the episode numbers in the show notes of your podcast player. So in the show notes of the audio app you're listening in right now. Besides links to all the sponsors. I'll put the episode numbers of all of the algorithm based episodes. That sounds good. Alright. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

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#800 Lazy Control IQ Ninja

Megan is the mother of a type 1 who uses Control IQ.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to a wow and welcome to episode 800 of the Juicebox Podcast. If I was the kind of person who celebrated meaningless milestones, I would definitely celebrate this

so Meghan was coming on to talk about control IQ. She said she thought she was terrific at it. That's why she booked to come on the show. Then she heard the episode called control like you, Ninja, she rethought it, but she's still here. Turns out she had a lot more to talk about. So this episode sort of broken, I mean, a little bit in half, there's a lot of her story up front, a lot of control like you on the back end. But don't miss Megan story. It's really interesting. And I think you're gonna like it. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plant, or becoming bold with insulin. I say that 200 more times there'll be 1000 episodes. Here, here's something I didn't think I'd be saying for this long. But I'm back to tell you that if you're a US resident, who has type one, where is the caregiver of someone with type one, I need you to go to T one D exchange.org. Forward slash juice box and fill out the survey. That's it, join the registry, fill out the survey takes like 10 minutes, you just have to complete the survey and you're done. You know the whole thing. You're going to help people living with type one diabetes, you're going to use the music, you're going to sorry, you're going to move diabetes research forward, you might help yourself. There's a lot that could happen. It's all good. Nothing bad. This, this whole thing is 100% HIPAA compliant, absolutely anonymous. I mean, I've done it. A lot of people who listen to podcasts have done it, but just not enough. They need more people. And as soon as you guys go and do it, and they get to their limit, I can stop saying this T one D exchange.org. Forward slash juicebox. And I know you think, Scott, I know you don't want to stop this. You're getting paid to say this. But it's not the truth. Really, I don't get paid to say it. I get paid when you complete the survey. So honestly, I do want to stop saying this because there's a limit. And I just want to get to it. And I don't know what I would say in this space. If you guys would just go fill out the survey and then we'd find out if you just go do it. But no, no, you don't have time for this. Oh, whatever. Sorry, that got away from me. This episode of The Juicebox Podcast is sponsored by Dexcom. Makers of the Dexcom G six find out if you're eligible for a free 10 day trial of the Dexcom GS six at my link dexcom.com Ford slash juice box, find out the speed, direction and number of your blood sugar right on your phone or on your Dexcom receiver dexcom.com forward slash juice box. podcast is also sponsored by us med get your diabetes supplies the same place we do at US med to get started, all you need to do is get a free benefits check by calling 888-721-1514 Or going to us med.com forward slash juicebox. Getting your diabetes supplies does not have to be a hassle. Try us med if you have trouble remembering my links, you can always go to juicebox podcast.com. Scroll down a little bit. They're all right there. Just tap tap. When you click on my links, you're supporting the podcast and keeping it free. So I appreciate it when you take that extra step.

Megan 3:39
My name is Megan. I'm married and I have three kids. My oldest is my type one. He's 12. So he was diagnosed four ish years ago. I'm really bad at math. He was diagnosed at nine. But it's he's got a summer birthday. So

Scott Benner 3:56
let's spend 45 minutes but no, I'm just kidding for three or four years. Yeah,

Megan 4:01
it's been we're coming up on our pump is going to be replaced

Scott Benner 4:04
soon. Oh, that's a nice way to keep track of it.

Megan 4:08
And then I have two others. An 11 year old boy and a nine year old girl.

Scott Benner 4:13
No diabetes there.

Megan 4:16
No, I am currently being in the process of being diagnosed with thyroid stuff. They're thinking Hashimotos I've got the marker the whatever tests they did was really high. Maybe for one of the antibodies or whatever.

Scott Benner 4:32
Okay, do you have you can you did they feel it like that?

Megan 4:36
Oh my gosh, you can see it. Oh, really? And I can feel it's right on my vote like you know, a little indent is in your neck.

Scott Benner 4:44
Let's say I do. Wait. Okay,

Megan 4:46
well, wait, what do you like that little like the front indent in the front? Yeah.

Scott Benner 4:50
It's it's there. It's my thing different than yours.

Megan 4:53
I don't know. Like, I'm like you have that little like, I don't know. It's like an indent on your neck. If you if I lean up, there's like this big bolt right there instead of an indent. I

Scott Benner 5:05
know where you mean, I found it. Yeah, yeah. Yeah. And then

Megan 5:09
I have all the classic symptoms, but I have other issues. So I was attributing them to other illness issues that I have. And it was like, Oh, no.

Scott Benner 5:17
Do you mind picking through this for a minute? Before we talk about Yeah, you're here. Okay, that's fine. What other issues,

Megan 5:23
um, I am freezing all the time, which I didn't think anything of until we had like an 80 degree, one of those random 80 degree days in the Midwest in the winter, and I was still freezing. I could sit in front of a space heater and still feel cold on the inside. But I'm sweating on the outside, like, my skin is warm, but I just can't physically feel warm. And I'd wake up in the middle of the night drenched in sweat, and have to change several times. I keep waking up drenched in sweat. I'm super fatigued. I could fall asleep at the drop of a hat. Which normally is a big problem for me. Like I can't sleep. Changes to my menstrual cycle.

Scott Benner 6:12
Hold on one second. unrested doesn't sleep 12 hours wake up.

Megan 6:16
Doesn't matter. What like I'm sleeping 12 hours but no, yeah.

Scott Benner 6:19
Well, you have kids, I've got kids.

Megan 6:24
And what else? I've been losing weight on purpose. And then suddenly, when all of these symptoms kind of started, I started gaining weight no matter what I was doing. I have like water retention stuff. I have headaches. I have vision changes. My eyes went really dry. Gosh, there's been a whole bunch of them. Like when I look at the list. It's one of those like, Yep, yeah, yep. No.

Scott Benner 6:51
Do you have any other medical issues that you thought were causing some of this stuff?

Megan 6:56
Yeah, I had really bad pregnancies with HG hyperemesis gravidarum. And they were severe. Like had a patch tube had, you know, organ failure and all that. And so when I came back from that my body hasn't worked properly and couldn't process any medications. And we didn't know that until I got scary side effects from the medications I used to take. And so I ended up with all those like really scary side effects. Hyper that you read on the side. Oh, like you're gonna take this antibiotic and it says, Hey, you don't you could end up with like nerve damage and peripheral neuropathy. tendinitis one in

Scott Benner 7:35
4 billion people think they can fly on the leg tracks Yeah,

Megan 7:38
that's me. I just made up a word or medication I take

Scott Benner 7:42
Yeah, made up a word I'm hoping isn't really a drug. Okay, I'm

Megan 7:45
probably is hyper Wyatt. hyperemesis gravidarum Whoa,

Scott Benner 7:50
whoa, whoa, I barely got through high school M S. MSS. So like throwing up I got it I got it.

Megan 7:58
So

Scott Benner 8:00
we and you have a this happened with your first pregnancy?

Megan 8:03
It didn't it got worse with each one.

Scott Benner 8:05
Do you love babies or sex or something? Why did you do it again?

Megan 8:10
They were all we wanted kids but we did not intend to have them when we

Scott Benner 8:14
did. Megan did you go to a couple of weddings happen? No,

Megan 8:19
my husband's a pastor and

Scott Benner 8:21
hold on a second we had Go ahead.

Megan 8:25
And so we had some you know, stressful times. And so we're not

Scott Benner 8:34
Oh, okay. You guys want to go on vacation or have sex? Well, we can't afford vacation everyone to the bedroom. Gotcha. Oh,

Megan 8:43
my gosh. My 12 year olds gonna listen to this and be mortified one

Scott Benner 8:46
day 12 year olds gonna be like, Oh my God, my mom is just banging all over the house there for a while until her hyper MSMS is great gravid dari I'm got it. Wow, you aren't? Well listen, mad respect. If you made three babies going through what says severe nausea vomiting weight loss possible dehydration feeling faint may also occur. It is considered more severe. The morning sickness symptoms often get better in the 20th week that that

Megan 9:12
mine did not. Like I was throwing up approximately like 30 times a day. I couldn't keep down any food or any water. I couldn't even swallow my own spit. And I lost more than 10% of my body weight in. Gosh, I want to say it was less than less than six weeks.

Scott Benner 9:32
Did you have any thyroid markers back then anything that you were aware of?

Megan 9:38
So looking back, I was mismanaged medically. And I ended up with PTSD induced medical trauma stuff from what went down in the hospital and how I was treated. I was told it was all in my head. Which really messed with me psychologically.

Unknown Speaker 9:58
I'm so sorry. That's terrible.

Megan 10:01
It is, but I'm better now we don't. We don't talk about there. Well, no, I can talk about it. Just I can't go to that medical system.

Scott Benner 10:09
Hey, did you did you see here on the Wikipedia, which I have no reason to doubt. It says other potential causes of the symptoms should be excluded, including UTIs and overactive thyroid.

Megan 10:21
Yep. So what happened afterwards is I had, I went through about one year of having the most doing blood draws multiple times a week, because my thyroid went crazy afterwards, it went super high, and then would crash and go super low, and then go super high and then crash and go super low,

Scott Benner 10:42
hyper hypo, hyper hypo bounced around. Yep, for about

Megan 10:45
a year. And I was a hot mess. But I was also hating all medical stuff. So I wasn't willing to pursue anything beyond just making sure I wasn't going to die. So they thought something was going on, and then it kind of leveled out. And by the time I got into see a specialist, they were like, I think I think we're okay. And I was like, okay, don't want to push it. If I don't have to deal with medical stuff, I'm not going to. And then once mica got diagnosed, I started, I had no choice but to be super involved in medical stuff. And now I'm much more comfortable. I listened to the thyroid series, which pushed me to talk to my doctor and pushed him to be like, like, oh, no, but your levels are fine. I know. It says you're high on this and you feel really crappy. But your levels are fine. And I'm like, but my levels are elevated compared to what they used to be. So maybe I'm just sensitive to it. And can we just treat the symptoms? And they were like, well, you can go talk to somebody else. So I'm doing that, that appointments in two weeks.

Scott Benner 11:53
Oh, what lovely, what a lovely group of doctors.

Megan 11:57
I mean, I'm, I'm a complicated case. So I'm aware that they look at my medical file and go oh,

Scott Benner 12:03
to me, though, that would make even more common sense to just say, well, you mean, why don't we just try the sense right for a couple of weeks and see what happens.

Megan 12:11
They think I might be allergic to it. So they know that I'm sensitive to hormones. Because every time of the month, my I have similar symptoms, he I get really sick, I get really tired, I get headaches, I get migraines, I get like, it's it's just a really crappy couple of days of you more so than it used to be.

Scott Benner 12:31
I'm wondering, I'm not suggesting I'm wondering, have you thought about maybe like losing your lady parts inside? Like,

Megan 12:38
um, they did. But they said no to that, because they were afraid what? What hormone therapy would do? Because, again, they're not sure if that would work or not. And if we remove it, then we're stuck having to figure it out. Instead of working with what we got. You know,

Scott Benner 12:57
Megan, you're quite a catch. Pastor Bob is very lucky. Very, very lucky. I don't know his real name. It's not important. But yeah, this the episode told him

Megan 13:06
that I was like, I hope you love me. I'm really expensive. I'm a cheap date, but I'm really expensive to be married. To have on your health insurance, now there's two of us.

Scott Benner 13:17
Oh, my gosh. Oh, I'm so sorry. It's, um, it's horrifying. I mean, a lot of what you described about the thyroid symptoms. I mean, Arden is often very cold. And and we just actually went back to managing slightly differently. It's too early for me to say whether or not it's it's having good effects or not. So I can't really say here, but we've we had added a T three supplement to her regimen. And we thought it was working really well. But then she started having this odd side effect that we attributed to the T three. Turns out it was probably the birth control pill. And so we went for months without it and then have just recently re added Saito mil which is T three. We tried. What did we try? We tried to armor the T three, I think it's that didn't know what you're talking about. Yeah, that didn't help her. So we went back to the site Omo, which we now see helped in the past, and her energy has returned. And now Now I'm waiting to see if hopefully it balances out her body temperature because she's the same thing she touches you she like, she's like, I'm so cold and she touches you and she's warmer than you are. Yep.

Megan 14:30
So that's what's been going on. And that's the thing that was most concerning to me is everything else I can attribute to other things. I mean, I'm tired. Well, I'm also getting older. I've got kids. Life is just exhausting. We just came through a pandemic, like, you know, I could just be over it.

Scott Benner 14:46
Megan, from my perspective with the experiences I've seen and had and talked about with other people, I'd say I hope that you're not going to have a weird like reaction to it. You should try it A replacement. If that replacement helps but doesn't help completely, then then get somebody to help you with the T threes, the T three side of it, too, I can't tell you that Arden Arden's energy returned in like four days on site.

Megan 15:14
I'm excited to just do something. Like I thought it was cancer for a while. So like, I'm just really grateful. It's not that. So, you know, let's just let's, let's figure this out. I just need a doctor who's willing to work with me. Yeah.

Scott Benner 15:28
Okay, so I'm

Megan 15:30
just gonna find one.

Scott Benner 15:32
Is that become problematic? Or have you been able to,

Megan 15:36
um, we live near a major metro, near in rural terms, we live an hour and a half away from major metro area. So I feel pretty confident we can find someone. It's just the process, I'd like to just find them right away, instead of having to, I would have to start with a surgeon because that's what they're having me do first. And the surgeon I've already talked with on the phone who was like, Yeah, I'm not the right person. But I will see you and we can refer you to the next person,

Scott Benner 16:07
I would try to find, although they sometimes don't take insurance, but I was gonna say more of an integrated, integrated, like situation, they're usually more willing to try things on the fly. They work through email, like there's like when ordered needs an adjustment. I don't go to an appointment, I send someone an email. And I'm like, this is happening. What do you think and the return email says, I think we should lower it to six times a week instead of seven. Go ahead and do that. Okay, that's over in five minutes, you know, because that's the thing that you would appreciate that many people wouldn't, which is the the span of time in between. First you have a problem, then the problem impacts you enough that you actually look into it, and you look into it, inevitably, someone doesn't help you, you've got to go find somebody else. Before you know it. It's nine months later, it's a year later, you're beaten down by the whole process, you're almost hostile to feeling terrible. And you start getting it in your head that no one's going to help. Right? And then that's very frustrating and off putting and makes it difficult to kind of soldier on so yeah, yeah, I say. I say that a month on T four. And you should feel much better. And if you don't, then you start looking at the T three aspect of it. And yeah, I mean, I can't tell you the again, four days of cider mill, and no more like Artem was coming home from school. And if her head went over, she'd fall asleep like she had to purposely stay sitting up after school, or because if she laid down or laid back, she just felt right asleep. And she'd sleep for four or five hours in the afternoon, then wake up and be tired. Yep. And now suddenly, everything's better, you know. So, anyway, good luck. And that, of course, 15 minutes into it. It's not why you're here. Although I would tell everybody to check out the defining thyroid series. It's helpful, right?

Megan 18:03
I feel because I have, you know, that medical anxiety that I feel better prepared to go and speak with a doctor and not take no for an answer. Because that's been my concern is the doctor says no, and I go, Oh, I really don't think so. But okay.

Scott Benner 18:19
Well, I mean, we kind of skimmed over the the point that we kind of skipped over the point that you're being treated like while you're really sick. It's a shame. That's your life. Goodbye. Let's go live with it. Right like that basically happening to you. So

Megan 18:36
yeah, I have a bald spot starting on the back of my head that hasn't been there. I have used to have really thick hair and whatnot. And all of a sudden it's really starting to fall out. And the doctor looks at me and goes, Oh, yeah, you do have a bald spot. And then like, that's a bummer.

Scott Benner 18:54
How can somebody not see that and give you a thyroid replacement hormone? It's terrible. Yeah, you know, so sorry. My God. Episode 413. thyroid disease explained is a comprehensive episode with the person who manages Ardens thyroid, so yeah, check it out. Alright, but you're here Megan, because you feel like a control IQ ninja. But then tell me tell everybody what you said

Megan 19:20
lazy ninja.

Scott Benner 19:21
Oh, lazy. Hey, that's all right. Lazy control IQ ninja. Yeah, I think that's valuable. Tell everybody what you said right before we started recording though. Arden gets her diabetes supplies from us Med and you can too. Now why would you want to do that you're probably getting your supplies from somewhere already but us med has quite the bone of P days. You know what that means? I can tell you if you want. I'll tell you at the end. For now just know this. US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one distributor for Omni pod dash. They are the number one fastest growing team am distributor. They are the place where Arden gets her on the pod supplies. They are the number one rated distributor in Dexcom customer satisfaction surveys and I haven't taken the survey but I am very satisfied with how they send art and stacks comes to us. And they've served over 1 million diabetes customers since 1996. Is that not enough, I can give you more an A plus rating with the Better Business Bureau. They accept Medicare nationwide and over 800 private insurers. US Medicare has everything from insulin pumps and diabetes testing supplies to the latest CGM like the FreeStyle Libre three and the Dexcom G six, white glove treatment is what you're going to get a US med now here's how you get started. You call 888-721-1514. Or you go to a link on the line online is another way to say that US med.com Ford slash juice box either call the number that's a special number for Juicebox Podcast listeners. That is what you are. Or you go to the link especially for us to and you get things moving. Next thing you know your stuffs just showing up. And it's easy, because that's how US med does things. They do it easy. They want you to have better service and better care. And so far that's what I found that I get from us med you can to 888-721-1514 or go to us med.com forward slash juicebox oh hell i for i promised Tiwa bone a few days means bone a few days bone fee days. It's bone the feed is bona like that with a knee bone a fee days spelled with an A sounds like a a person's honesty and sincerity of intent or documentary evidence showing a person's legitimacy or credentials. I guess maybe do you need to be a person to have bone a few days? You'd be a company couldn't you? Alright. I don't know we've gone too far down the rabbit hole. Let me get you back to my oh real quick. If you've never seen a Brother Where Art Thou the movie, there's a great scene where George Clooney his kids tell him he's not bonafide it's it's worth. It's worth your time

Megan 22:12
I said I listened to Jeremy's podcasts, the control HQ, Ninja one. And then I felt like a total imposter. I had a moment of panic long moment of panic, that, well, maybe I should cancel my thing because that was that was good. Like, that's probably better than what I could say. So I don't want to confuse anyone.

Scott Benner 22:34
Luckily, you have so little energy, you weren't able to email me.

Megan 22:37
I have anxiety. So I just didn't. Oh, interesting. So I was like, you could just say no.

Scott Benner 22:44
So your anxiety, okay. So you have that you have anxiety, generally speaking throughout your life.

Megan 22:50
No, that came from my pregnancy issues with the doctor and whatnot, that I couldn't trust myself to make decisions for myself. Because I was constantly told that I was doing it to myself, and that what I was feeling was wrong, what I was thinking was wrong, the actions I was taking were wrong, and that the doctor knew better. And I just needed to ignore myself and focus on some have somebody else make all the decisions because I couldn't be trusted. And so that really messed with my head. So like, I used to not be able to go into grocery stores because I didn't trust that I could buy the right things afterwards. Like I would have major issues and breakdowns in the store, and flashbacks and all that stuff. Because I you know, pasta was on sale, and it wasn't on my list. And I buy it and it's like, Oh, that's too much. And you know, that whole would send me spiraling and it was really humbling. Yeah, but so for that reason, it still pops its head up in some situations, but I've always been a bit of a perfectionist who likes to do everything perfectly and right. So

Scott Benner 23:59
well, I know, I've ever thought but first, let me just say this. Has it ever gotten to the point where someone actually had to help you out of a public place? Like yes, so if you heard like, there's a lady laying over top of the fresh cheese in aisle seven, please somebody go get her. Like

Megan 24:14
the pharmacist at Target got to know me really well because I had a bench

Scott Benner 24:19
company come in and have the magnets Okay, have a seat, honey, we'll get you some water about like,

Megan 24:25
you still like sit in the middle of an aisle and just be like, I'm fine. Just need to get through it.

Scott Benner 24:30
Everything's fine. Everything's not fine. Someone help. Here's what I'm gonna tell you. Don't be surprised if balancing your thyroid helps with your anxiety. That'd be great. Yeah, seriously. I don't know if I've ever said this. I probably have. It's fine. We're like 700 episodes into it. Now Megan, I don't think there's anything left to hide. Not that I was hiding anything to begin with. But my wife as people have heard was Couldn't find treatment just like you for like seven years. And and when she finally when we finally kind of badgered someone to giving her Synthroid, I told the doctor in the room, I'm like, listen, you're going to be saving her life. And he said, This is not life threatening. And I said, Oh, no, no, I'm going to kill her. I was like, that's that you're saving, I have a whole dog in the backyard already to push her into because I can't take. She is not pleasant. Like it was it was like she was very short tempered, and she'd fly off the handle about things she didn't even know she was doing. It like really starts taking that Synthroid. And everything was just ooh, she's all good. As a matter of fact, there's a lady that lives in the town I live in, who there's no way she listens to this sober, safe. She was well known as maybe one of the most unpleasant people you've ever met in your life. And we used to bump into her a lot because of something with kids. And then years went by where we didn't, and then we bumped into her again, years later, a completely different person, so much so that she was aware of it, apologized for how she may have been in the past, and then told us about how she's now medicated for her thyroid issue. So you don't sound nasty. But are you? No, no, you're not saying unreasonable.

Megan 26:24
I've worked in customer service a lot. So I have that whole thing. No, but

Scott Benner 26:28
But I mean, we can filter it to Pastor Bob, though not not to other people. My wife wasn't unpleasant to strangers, please.

Megan 26:35
No, I don't think so. I mean, I definitely have moments of being Hi strong. When I get stressed, it's amplified. More so than it used to be more so than it feels normal. So I generally try to avoid being stressed if possible. funny when people do a lot of it's avoidance. But I do I quilt when I get really stressed, I go and quilt, and that stab things, lots and lots of times at high speeds. That helps.

Scott Benner 27:09
Oh, there's a joke in there about you and your husband. We're gonna just go right past. Going back to being on the podcast to talking about control like you. When you said anxiety stopped you from like, so if you didn't have anxiety, do you think you would have canceled? No, okay, good. Excellent.

Megan 27:27
I used to be much more. I'm amazing. type personality.

Scott Benner 27:32
You? Well, let's find that. Also, do you think that people find it incredibly distasteful to joke about the sex life of a pastor? Because I think they probably

Megan 27:41
I don't know, guy, right. We're, we're people. We have children. I think for some people, it's an uncomfortable topic. Just because they like to think of their pastor one way and not as you know, he's, he's my husband. You know, that sort of thing. But people around us tend to get it. So good.

Scott Benner 28:03
Excellent. Okay, so how long is your 12 year old been on control IQ?

Megan 28:09
We got it. I actually looked back because I know I had messaged you way back in the beginning. When we first were diagnosed because I was super frustrated with our endos office. Because I just I'm a control person. I'm a data person. And I was frustrated at the pace at which they were moving was not as fast as I wanted to move. And so we got our pump pretty much right at six months. The Windows Office would not budge on that. They required six months waiting.

Scott Benner 28:41
Okay. So you've had three and a half ish years?

Megan 28:46
Yes, I believe so. Because we get a new one in. Yeah, sounds right. Three and a half years because we're right at like six months to go. Okay, so

Scott Benner 28:57
has it always been control like you or were you just using a tandem pump it were like even

Megan 29:02
it was Basal like you Okay, when we started,

Scott Benner 29:04
how long did you base like you for

Megan 29:07
until the day control IQ dropped when he got it right away that night.

Scott Benner 29:15
So that doesn't sound like a ringing endorsement for Basal IQ. So tell me just a little bit about or was it How was it?

Megan 29:22
Um, I liked Basal IQ. I, we did okay on it. We actually did correction. We did well on it. We were 5.6 ish. And so I liked it. But we were still touching the pump a lot for corrections and things mica has this. We used to have this issue because he had he went from lunch to recess to PE and how to dose for lunch because he would eat school lunch which is notoriously high carb and you know that whole trend manage that and he would go outside and running with active insulin makes him drop. But then he had like, you know, he would have one class between recess and PE and he would skyrocket during that. And then he would drop back down. Once PE started, and that was just always the bane of our existence. All throughout stuff and control IQ fix that but Basal like you did not hold on. My son is asking me if he can eat. No,

Scott Benner 30:29
he cannot eat. We're making a podcast. This is unbelievable. Tell that kid? No, just kidding. Go ahead.

Megan 30:34
Yes, Pre-Bolus.

Scott Benner 30:37
Mega, do you think we should put the ad right here? Sure. Okay, then we'll come back in

Megan 30:42
10 minutes. There we go.

Scott Benner 30:50
longtime listeners will know I haven't put ads in two different places in the years. But this just works so well. I couldn't, I couldn't say no. I'm here to tell you about the Dexcom G six. And if you're using control IQ, you already have the Dexcom. But if you're thinking about the control, like you are on the pod five, or just being able to see your blood sugars in real time, right on your iPhone or your Android device, or on your Dexcom receiver, well, then, in fact, you might want to write this down. Dex comm.com forward slash juice box, go to that link. Learn more about Dexcom find out if you're eligible for a free 10 day supply of the Dexcom G six. A lot can happen at that link in just a few short minutes. The Dexcom G six is gonna give you customizable alerts and alarms, show your glucose readings right on your smart device. And are for you a world where zero finger sticks can be your norm. It's time for you to take the next step with dexcom@dexcom.com forward slash juice box just go to the site. Scroll down a little bit, fill in a tiny bit of information and you're on your way. Everything we do with insulin at this house is predicated on the information we get back from Ardens Dexcom G six. It helps us make great decisions. It helps us to feel safe, it helps us to see Arden's blood sugar when she's not with us, you can do all of that as well dexcom.com forward slash juicebox if your glucose alerts and readings from the G six do not match symptoms or expectations use a blood glucose meter to make diabetes treatment decisions Good job pausing so I can cut it right there. That was excellent Meghan. Very well done. Yeah, no problem. I don't know if he did that on purpose but if you do, I really appreciate it. Okay, so basil like so Basal IQ helpful but not wasn't able to overcome those kind of like real intense situations at school is that right?

Megan 32:53
Yeah, and we always had an issue and we we still do but we've managed it now it's control IQ with as soon as he falls asleep he would skyrocket and so I would be constantly going in there and having to touch you know, go dig it out of his pocket and dose and then wait and then go back and dose and so I was hoping control IQ would really help with that. You know, it did a really good job of getting rid of pretty much the lows but we were having some serious issues with the highs and it's not that we weren't doing well it's that we were just touching the pump more than we wanted to

Scott Benner 33:32
Yeah, you know it's funny you just said something but it's never occurred to me once you said I digging it out of his pocket so when you have a to pump you have to sleep with it on your person. Yeah. Oh, I never considered that once it's not funny. Yeah, yeah, that

Megan 33:48
it's fun because before bed I memorize what pocket it's in that way when I go in there I know what side he needs to be on so I can get it out.

Scott Benner 33:57
You think you could go out into public and steal people's wallets with any kind of like certainty or you're not that slick? Probably like 75%

I think we should try I really think you should go out and report back it's got to be in their

Megan 34:11
front pocket though in a jersey type shorts or pants

Scott Benner 34:14
when they just got to be pretty specific mega we don't want you reaching down in people's front pockets out in public but when you when you get arrested just tell people my thyroid is very unbalanced. This is not my fault.

Megan 34:25
I thought it was an insulin pump.

Scott Benner 34:26
They made me call a surgeon first or I might have the medicine by now. A surgeon by the way. What Yeah, I don't want to go backwards but that's Miss Oh my God Who told you to go to a surgeon for art once the doctor

Megan 34:39
just thought maybe I just want it removed. Maybe because it's right on that border of size. And I'm like yeah, but I think it's gonna go down if we manage it.

Scott Benner 34:50
Very well good. Is it coming up the goiters you're not getting a goiter right. This is I have 120 You have a goiter edit enlarged thyroid. Yep. Megan you are painting a sexy picture. Okay. Okay, so back to this. So you switch to control IQ about how long ago just roughly

Megan 35:10
whenever control IQ drops, so that had to have been at least

Scott Benner 35:14
two years. It was about two years now. Okay,

Megan 35:18
I think so that feels about, right. It dropped the for the pandemic, to talk about, oh, it's gotta be. It's been two years.

Scott Benner 35:28
Has COVID been going on so long? We're measuring stuff by it.

Megan 35:31
Yeah, that's kind of how we do it. Because I have no sense of time. For that.

Scott Benner 35:36
I have. I'll tell you the one thing you know how they talk about long COVID, where some people lose their, like, smell forever, or something like that. Here's something I've lost from COVID Being clear that I've never actually had COVID. But from the experience of COVID I never know what fucking day it is, ever. I never ever ever know what day it is. And I blame, I blame the lockdown. I really do. Like, I don't even know if it matters. Now. I'm not even sure if I should be upset by it. I just don't

Megan 36:04
care. I just wish everyone looks so much older. I'm like, How long ago was was that? Three years ago? No, it was just like last year. Right?

Scott Benner 36:14
Okay. Oh, that's interesting. Okay. All right. So I'd like to ask you about when you switch from basically Basal IQ, which was just shutting off your Basal if it thought he was gonna get low, right? To control IQ, which is an algorithm and you know, for everybody listening, control IQ, do it yourself loop. Android, APS is another do it yourself, right? On the pod five. The thing that Medtronic is gonna come out with Next, all that stuff. They're all algorithms, but they're not the same algorithm. They're all proprietary in one way or another. I mean, do it yourself not proprietary, but you don't I mean, they're different programs, they work different ways. They accomplish things differently. If you're saying to yourself, I don't understand why that is, you probably don't understand patent law. Or why TiVo has a 32nd, Skip, but your DVR from other companies can't have it. It's because TiVo patented it before your other company thought about it. So you know, like theirs. They can't just copy it, it's got to be this is my guess it has to be slightly different somehow. So all this stuff? Yeah. And trust me, I don't know, I could have made that all up. But what I'm saying is that none of them are exactly the same. So you switch to control like you, what's the first hurdle going into an algorithm for you?

Megan 37:30
Um, it was, at least, gosh, I want to say six months before we started working with the algorithm. I was still trying to manage the way that I always did. And just hand over stuff to the pump instead. But then, we started getting crazy lows, because I wasn't working with the algorithm. So what was happening was the algorithm would do at 60% dose dosage correction thing, because it saw him starting to go high. And then I would go in and be like, super aggressive and be like, hit it. This is it's always a unit, not knowing that it had done the 60% like 10 minutes earlier, because my son's at school. So we're texting and whatnot. And I started to get really frustrated. Because our text conversations, instead of me just going manually, dose one unit, you know, basically override in the pump that you're just going to do a one unit, because I know that's what it needs. Instead, I was having to go when was the last time the pump, you know, do you have insulin on board? Okay, what's it doing? What's the you know, and having to go back and forth on that and really interrupt his day was bothering me. Yeah. But control IQ wasn't being aggressive enough. In my opinion at that time, so we ended up going to sleep mode 24/7 Which basically made it so I could still do all the high corrections, but it could, you know, everything was a little bit easier. But then we ran into problems when we would do. Mike is really sensitive to exercise. So on days where he's really active, he needs drastically less insulin all across the board. On days where he isn't really active, he needs a lot more insulin all across the board. I'm talking about Basal swings from 10 to 17. So it matters for a long time afterwards. We tried exercise mode that was a hot mess. And we just kind of wrote it all off and just dealt with the fact that control IQ wasn't everything we wanted and sorted the look into loop. And then I listened to Fox in the loop house and he was talking about Would ISF changes throughout the day, instead of basil changes? And how it's not the basil that's changing, it was how you react with that insulin, you know, now the insulin is doing this much more instead of this and thinking about it that way. So I immediately scrapped all the settings and started over trying to see if managing it through ISF would work. And that got us dramatically better results. But we were still in sleep mode 24/7. And then he was gonna go to diabetes camp, and they're like, he can't be in sleep mode. Like, well, shoot.

Scott Benner 40:42
Well. Okay. So first of all, I don't understand why they care how you're achieving your success. And secondly, how did it feel when you heard Jeremy say, like sleep mode all the time? I don't do that for you like,

Megan 40:55
Well, I agree with that now, but back then I would have been highly offended. I was one of the people on posts where people are like, what do you do? And I'm like, sleep mode 24/7. The way to do it, it's the only way the algorithm works. And people would comment below me and be like, you just don't understand the algorithm. And I was like, this woman doesn't know what she's talking about. Turns out who didn't know, clearly you don't understand?

Scott Benner 41:18
Hey, you know, what's interesting is that you are going to hear this in the, on this podcast for years to come. Settings, it's all settings, its settings, whether you're doing it manually, whether you're doing it with needles, or whether you're doing it with one of these algorithms, if your settings are wrong, it's just not going to work. Well, you know? Yeah. But and so settings is the

Megan 41:42
Yeah, it's a lot easier. Now, I'm a big data person. So I, I have Excel spreadsheets, I plotted everything, I tracked everything. I've done that since the very beginning, trying to find patterns trying to find this and it was such a mental burden. But at the same time, it's it's something I do like it's my personality. So it's not as big of a burden as some people would think it is. But because I needed to figure out control IQ, the regular way for camp, to not have to go through all this whole thing. I just we sat down. And we've just dedicated ourselves to figuring it out. We had a higher a one C in it was like 5.9 While we were figuring it out. But since then it's dropped back down. And I will probably not go back to sleep 24/7 ever again. Because this is so much nicer. We touched the pump so much less there are days where all we do is Bolus for food. You know, when something does go wrong, we know how to work with the algorithm instead of against it. It feels much more like the pump is helping. Instead of just being that annoying little kid like I'm helping. Don't know you're not stop it. I can as long as it's a steady rise going up, I know that I my high alarms are set for 160. Because I know that the pump can handle anything under that, you know, our settings are good enough that it adjusts. And on days where it's off. I know why it's off and we do a full settings change. And I know what it needs to go to generally, like yesterday, yesterday. Just yesterday. Yeah. We were having issues where all the sudden he was going into the three hundreds just guy rocketing after everything. And it was like, Okay. Obviously, the settings that were nailed in, you know, two days ago, are no longer. Right. And so we went back to another one that, you know, we don't make those really small changes that Jeremy does. I will least change by point five each time. Because Mike is so sensitive. I know that that's what we need. We went from 15 units of basil to 17.6. And you know, carb ratios went from nine to 5.5. Because I know that's what it needed. And today we have a nice, a nice line, assuming you know has been a little bar he just decided to eat doesn't mess it up. But we've been in range since we made those settings changes last night.

Scott Benner 44:34
That's all ballsy moves. That's really well done. Good for you. That's excellent. I just had we just switched port art and spent on like 33 Different kinds of birth control pills in a year and a half. But she just went back to one that we thought was working and it's not important anyway, there's a switch that was made. And about six days ago she started having a Lowe's and I moved her basil by point one and her in some sensitivity by by one number. So I made her I took her insulin sensitivity, maybe it was two, maybe I moved it from like 41 to 43. And her Basal from 1.2 to 1.1. During the day, it worked great for three days, and then zoom, it came back around, and suddenly I couldn't get her blood sugar below 190. And then all I did was put the point one back in the Basal and move the insulin sensitivity back to 41, or blood sugar went right back. It's crazy how like, how how, because that's not something people would think of, I think that most people hear that and go 1.2 to 1.1 That's meaningless, or 41 to 43 these seem like small adjustments, but they're just, they're just so important. You know, it's and I listened to I don't adjust things as frequently as Jeremy does, either. He's He's incredibly good at it. And you know, I mean, it's amazing. I'm gonna have him back on again to talk about it more. But I mean, it's, it's more, you use the phrase earlier, like touching the pump. That's more that's more touching the pump that I'm I might be able to do, I guess,

Megan 46:10
see, we make those changes when he's in the shower. So like when the pump is charging. So technically, it doesn't count as touching the pump to me because he's not there. To him. It's not in his Yeah. And we used to have to make settings changes multiple times a week, I was constantly chasing his insulin sensitivity. I didn't know it at the time, but that's what I was doing. And so we heavily rely on exercise mode. Exercise mode is kind of our What is it ace in the hole or pocket or whatever, whatever, it's our ace up the sleeve. There we go. It is it is one of the things we probably that has changed us the most is using exercise mode. I'm not sure we fully use it as intended, but it works for us. I know you're supposed to do it when you know hours ahead of time, which the only time we do that is he has double PE on Mondays where he has two peas right in a row. So it's always at the same time I know it, he knows it. So when he leaves for school in the morning, we switch to exercise mode. So that way, he doesn't have to eat as much. Because his insulin sensitivity, he goes from super sensitive, or no super resistant in the morning. And then somewhere around 10 3011 o'clock, he becomes super sensitive to insulin. Like he's been up and moving around for the day, he's hydrated, he's moving around. And all of a sudden, around that time, a couple hours after he wakes up, he becomes really insulin sensitive. And so the problem we were having is, how do you dose him in the morning when he's resistant, and not skyrocket the blood sugar but not crash a couple hours later, when he's now sensitive. And now that little bit of tail end of insulin that's left is now going to go further. And that insulin sensitivity catches it. So we'll go from 60 insulin sensitivity and I think at like 1030 or 11, I have like 130 to account for. If he's going low, it's going to catch it. But we generally don't have a problem with high so I'm not going to worry about it trying to correct anything right then in there. And then it drops back down into the 90s in the afternoon. And kind of stays there until bedtime when we drop it again. Because the the problem we have is using the sensitivity is what we're able to do is account for times when he's going to go low. So it catches it. Yeah, but also not be so aggressive. Because if we increase the basil, he's gonna go low when he doesn't need it, because he doesn't always need that much basil, but if we tell the algorithm, sometimes he's going to go low. And here's what it's going to take to catch it. But otherwise, this Basal is on point that then works then it works. We don't have to do a bunch of Basal rates we just have a bunch of insulin sensitivity is telling it Okay, right now it's gonna go further right now it's not going to right now it is right now it's not

Scott Benner 49:31
change the algorithms understanding of the impacts of the insulin.

Megan 49:35
Yeah. And so you know, there's some bad times where he will go crazy high and somewhere he won't Well, that's fine. We'll just have the Basal where it needs to be when he's fine. And then drop that insulin sensitivity or raise it, tighten it there we go to like 45. So that way we know if he's starting to rise. We've got to hit it hard. So we're telling it if you see that rise, you need to adjust it really hard at that point. Yeah. But otherwise, if he's fine, it's not really caring what that insulin sensitivity is doing. If you have a good blood sugar,

Scott Benner 50:10
I see what you're saying I use insulin sensitivity stop Arden from getting low overnight, because some, sometimes she'll try to get a little low around three, four o'clock in the morning. So in a while, and she has a less aggressive insulin sensitivity at that time of night that takes care of it.

Megan 50:29
Yep. So we've managed a lot through that. It's excellent.

Scott Benner 50:33
It really is. I can't tell you how exciting it is to hear someone just talking about this stuff on this level. And I'm wondering how you got to it, like, what is it? Like? What was what was it about your journey that led you to understanding this? Where did you get information from?

Megan 50:52
I have always felt that there is something like I always felt there was this like something that I was just always missing. And so that has led me I like to understand all aspects and all facets of a problem. So I started listening to Juicebox Podcast, the day of diagnosis, it was somehow in our welcome packet. And that was before the Pro Tip series. So I remember listening to it, and it'd be a completely foreign language. And just like I just got to push through. And just we'll figure it out as we go. And then ordered things like a pancreas and sugar surfing. And I think I started off with a good level of information, our endos office for as frustrated as I was with them, and the beginning, did a really good job of setting us up for success, I now understand that their job is to make sure that nobody dies, and that everyone feels supported. And then those early days you are going through it with such a large group of people in some of these larger practices that they've got to teach to the common denominator, and they can't, they can't allow me to do certain things without putting somebody else in that same class at risk. You know, because that person just isn't at a place for that.

Scott Benner 52:17
Do you feel like? Do you think that you can feel that way? Because you dug yourself out of a hole? Like what if you were still down in the hole? Wouldn't you think differently about how they managed, you

Megan 52:29
know, because they were, they were still presenting good information, just not as fast as I wanted it. And I remember other people in our class struggling with some of the same concepts where it was like, got it done. Next thing, like I had that a week ago. And you know, I know why they needed to go slower. I was just really frustrated. It took a lot of convincing me on their part, like I would call them when you when you're supposed to call and they'll give you your numbers, like you read your blood sugar numbers, and then they tell you what changes to make. I use that time as practice. And so I would come up with I think all the changes that need to be made. And then I will call on the numbers and say before you say anything, here's what I think. And here's why. What do you think, you know, and they will be like, Yeah, that sounds good.

Scott Benner 53:21
See, I may I say something? Not that, obviously, just a side note for a second. I see that as a slight negotiation. And I think that sometimes not your specific situation. But I used to do that I used to give my opinion before getting the other person's opinion. And then I started realizing that my opinion was impacting their opinion. I don't know. Anyway, that doesn't sound like it happened there for you. But I'm just always careful about that, like you can you can involve somebody in a thing and then put them in your mindset and then you don't get the benefit of what they were going to say. Had you not spoken first anyway.

Megan 53:58
Well, we had let them talk first. But what was happening, this is when I would say okay, but here's what they were like, oh, yeah, that's because you heard what I said. Like, you clearly still need our opinion, because that's where this is coming from. And so it was the Can we can I just tell you how I came up with my numbers, right? And why? And then we can have a discussion as to where the flaws are in my thinking why you think, you know, this number that you came up with is better, you know, helped me understand. And they were very willing to do that.

Scott Benner 54:31
Just generally what part of the country you're in.

Megan 54:33
Yeah, I'm we attend in Omaha. So we're in really rural Western Iowa.

Scott Benner 54:40
And you and there was something in your welcome packet about the podcast.

Megan 54:44
Yeah, we got like a JDRF. Like the blue backpack thing and somebody else had put other stuff in there, like some local parent or whatever. And there was a list of resources and think like a pancreas was on there. Juicebox Podcast was on there. And there were a couple others have Like just things you might be interested in, my husband is visually impaired. And so he stayed with my son in the hospital in Omaha, and I was the one who was driving back and forth and back and forth, and back and forth, you know, to take care of our kids. And then when they would go to school, I would drive to Omaha for education, and then stay there all day and then come back. And so during those drives, I was listening to Juicebox Podcast.

Scott Benner 55:27
Wow, that's very cool. You know, I'm unaware of what you know. But it's not like somebody calls me and says, Hey, we're gonna put your name on a thing, like, so I don't know if that's very cool.

Megan 55:37
Well, and I'm not sure how many people actually I'm one of those people that reads everything. I don't know how many people have actually read that known that that was there. But it was one of those. No, I'll take whatever help I can get. I am out of my element here.

Scott Benner 55:52
Good for you. Yeah. I mean, it's obvious that your, your, you know, how do I want to say this? After I speak to somebody privately, I can usually tell if they're going to be okay. And most of the time, it's more about their desire to be okay. And to meet things head on, I guess. And to do whatever work is coming their way than it is about anything else. Like, like, I think I really do have a very childish expectation that you get what you expect most of the time. So

Megan 56:25
Well, I remember in the very beginning, our Endo, the first indication they had that we were different. was we got in trouble for poking too much. Finger poking because we didn't have the Dexcom. At first, we were having issues with our insurance covering it, and it was a whole thing. And so we weren't on Dexcom. But you know, Miko was going to school. And I was like, Okay, well, he needs to poke when he you know, before breakfast, like half an hour after breakfast. So I can see what's happening. Is it? Is it going low? Is it going high? Did we miss and then before PE after PE before lunch by like a little bit so that way I can see if we need to Pre-Bolus or not. And then actually before, right after lunch before he goes out to play when he comes back when he and I like that's a lot. And I was like, but I need in order to manage properly. That's the information that I need. And that's why we want the Dexcom. And then I got the Dexcom. And that was overwhelming at first. Interesting because it was almost too much information.

Scott Benner 57:31
I got what she asked for. Hmm, yeah.

Megan 57:34
But that was a game changer was having all that information,

Scott Benner 57:38
we we would test 1110 1112 13 times a day when ordered. And I learned later after seeing Dexcom I actually did this with an adult through the Facebook group. She didn't have a CGM, yet she was trying to keep up with what we were talking about. So she made a plot and just kept test testing herself. You know, I'm making dots in front of me now testing yourself testing yourself testing yourself. And then she'd come by later and then connect the dots. And it would within reason give her a Dexcom graph. Not a great one, obviously. But it gave her the the better idea by just by connecting the dots.

Megan 58:17
We used to Well, we still do, we use tide pool. And so we would upload our pump, not our pump data. Our CGM, not CGM meter, there we go gonna get the right word, our meters into there from the school and from home in order to get the graph and whatnot. Before we had Dexcom. And actually, we still do it now because you can overlay the Dexcom with the finger graphs. And so it kind of when we have compression issues or like we have bad, a bad sensor that just calibration and won't hold and whatnot, we can still see what the numbers were actually doing overlaid on the Dexcom graph.

Scott Benner 58:57
Great at it when you talked about a meter. Were you talking about the contour meter available? No. Okay, that's what we got sent home with. Oh, you did? In fact, get sent home with the Contour Next One blood glucose meter?

Megan 59:08
Yes, we did. And I really liked it. And then they came back and said, Oh, whoops, your insurance doesn't cover that. You gotta go with this other one. And we are on a high deductible plan. Yeah. So we make it work with what we got. Gotcha.

Scott Benner 59:23
Well, I'll say that that sucks. But I do wish that you were able to go to contour next one.com forward slash juice box. And

Megan 59:33
actually, the thing that I loved the most about it was the size. Yeah, it was much, much smaller and the ability to do to try again,

Scott Benner 59:43
the second chance test trips. Yes, yeah.

Megan 59:46
Yes. That was a huge adjustment. Not to have and it still is super frustrating at times when you have to throw a strip away because you get an error for not enough blood.

Scott Benner 59:59
I'm really sorry that that was your experience, because it's possible that the test strips could cost less than cash than they do through your insurance for other meters.

Megan 1:00:08
Yeah, but because we're high deductible, we need everything to go through, because we hit that deductible every year. So for us, it makes more sense. And that was one area where I differ from Jeremy. I don't care about the numbers being super accurate, as much as the trends. That's one thing that makes us really lazy. If it's close enough, it's close enough. And we just,

Scott Benner 1:00:32
it's working with what you're saying is whether a blood sugar's really 110 or 115 or 120. You don't care if it's I don't care. Yeah, it's right. It's I'll tell you. That was a thing. So it's weird because there's, you know, there's before and after, right, there's before CGM, and after CGM, in my mind managing insulin. And before CGM, I had to give over to that idea. Like, one day I was just like, it can't matter. If he can't matter if she's really 80 or 90. It can't, it can't matter if she's 150 or 140. I just have to treat 80 and 90, and 70 and 100 as good and 140 and 150. And one ad is not good. And 200 to 10 is bad, like, you know, or whatever. However, I was thinking about it like simply in my head right? And move things in the direction that that indicated to me because because meters were not as good, but I'm joking aside. That Contour Next One meter is legit accurate, and the meters that I've had prior were not. And so I didn't know what was going on. And there was no CGM, and no, God knows, like, you didn't really know what your blood sugar was. I had that thought. Day four in the hospital when they brought out this. You know, this big thing that has starred in is blood sugar with and I said, are we getting one of those? And the nurse laughed and she goes, No, this thing's like $10,000 You're getting this. And she handed me that old like Gumdrop looking freestyle light meter or whatever it was, I forget exactly. So she tests Arden's blood sugar with the $10,000 meter, I test Arden's blood sugar with the freestyle meter. The tests are like 60 points different and I go, Well, how am I supposed to make a decision? She goes, just use that one. And I'm like, You just told me this one's accurate. And it's 60 points lower. And she was like, Yeah, I mean, this is the one you're getting.

Megan 1:02:27
Yeah. Okay. Yeah. So we kind of just roll with it. It's kind of a general, is he going higher? Is he lower? What are we working with and just making sure that the algorithm is taking care of it. And if it's not, we usually tweak ISF before we tweak basil. I'm not too worried if Basil is on point, more so than ISF. And every so often, I'll upload our information into T connect, and I look at the logbook report, which gives you the average basil delivered per hour. And I have an Excel spreadsheet, I input all those numbers, I average it out to kind of what it works out to be and that's my new Basal give or take how I feel.

Scott Benner 1:03:10
Wouldn't it be crazy if you started taking thyroid medication, your anxiety went away and you weren't able to pay as close attention to blood sugars.

Megan 1:03:18
I actually, um, I'm pretty chill when it comes to blood sugar really now, comparatively, having control IQ nailed down, there'll be whole days where I'll go, oh, shoot, I never looked. Is he like, Is my phone okay? Like, did did I miss something? And it's like, oh, no, no, we were good. And we've had a lot more days like that than not. Especially we were having issues with the cannula. And we switched over to the true steel sites. And that has been world's better. I'm excited to see what our a one C does, because we're not dealing with failed sites anymore. Because we were getting multiple field sites a week. And we'd catch them. And we were able to hit them hard and you know, manage it really well because of the pump. But it was still higher blood sugars than we would have liked.

Scott Benner 1:04:07
Yeah. Wow. That's really I mean, I'm generally Jen, Jesus. Oh my god, Megan, I gotta record twice today. And I gotta go get a COVID test for my pre op for my knee surgery. I'm sorry, I'm starting to feel the pressure. I can't find the words I'm looking for. But I am genuinely excited about the success you're having. It's really it's really, I mean, just It's heartwarming to hear how well you've done with all this, you know, especially while you're dealing with other stuff personally, that you're still you're still able to get to all this. What do you think the um, I don't usually ask questions like this, but I'm going to what do you think the secret is to getting through all this and kind of coming out the other side?

Megan 1:04:49
Knowing what's good enough. I was convinced the entire time for well, the long time that if I just got the numbers perfect. If I just figured out, you know, I got the data just right that everything would be okay. And it turns out just knowing the numbers isn't enough, you know, a lot of it is just guessing. And going with instinct, what feels like a good number, what doesn't, you know, the numbers will get you close. But you know, your, your kid or yourself best? You know, there are days when it's 120 at night, and you know, I'd like it lower, but like, I haven't slept in a few days. And you know, what, when 20 is good enough, I'm just, I'm just gonna leave it, it's fine. Sleep is important, you know, or he's in a test, it's okay. If he runs a little bit higher for the test, you know, he'd rather just not be interrupted. And that's, that's fine. You know, taking a longer term approach to every day isn't a test. But, you know, I look at when Jeremy was talking to him, I went looked at those same reports, we had the exact same results he was. And I was like, Okay, I guess what we're doing is work. And

Scott Benner 1:06:09
we'll see that's the other part of it is that you have to find what works for you. You know, and listen, your situation could change. I mean, your kids 12. Which are the hormones here yet? Yeah, right. How long did that start?

Megan 1:06:24
Couple months ago?

Scott Benner 1:06:25
Did things change when that happened? Yes.

Megan 1:06:30
Drastically are Ioss. tightened. We used to be like one to 10 for breakfast. We are now one to 5.5. And still, that's on days where he's active.

Scott Benner 1:06:44
So your car? Your Car? ratioed.

Megan 1:06:47
Yep. And we will basil used to be pretty steady around 10. And when he would exercise and whatnot, it would drop down. And we're now at 1718 with corrections. Still and whatnot. What's the way 8590? I don't know. He's growing like a weed and eating everything. Well, I don't know anymore.

Scott Benner 1:07:11
Interesting. What's his basil right now?

Megan 1:07:14
Seven teen, I think it's 18. Right now, for today. And it's still it's probably increasing it. So I'll have to look at it.

Scott Benner 1:07:23
Yeah, at the general theoretical point one per 10 pounds. That that at 80 pounds brings you like 19 ish pounds. Like, like 19 1819. Us. But before? How so? Just six months ago, you were getting away with 10 units of basil a day. versus 18. Now? Yep, yeah, and 10 divided by 24 is point four an hour. And now you are you more like point eight an hour. Now? Where are you? Um,

Megan 1:07:55
we are at this is gonna sound weird. We're at point six, five, okay, for most of the day, because he has PE and he does spontaneous play and all that other stuff that that is our conservative number and then our ISF will adjust it as needed. So that's kind of the midpoint between days when he's really active and days when he's not.

Scott Benner 1:08:16
So you have you have a lower Basal but a more aggressive insulin sensitivity factor?

Megan 1:08:21
Um, generally, yes. And then we kind of fudge it around. But point six five cents to be where he is he'll go sometimes. His evening Basil is 1.20 That's just overnight.

Scott Benner 1:08:39
Wow. So the insulin sensitivity then get weaker overnight.

Megan 1:08:46
It is at 45 Around eight and then at 10 it drops or raises whatever 270 And then at one o'clock it goes to 130 Well to account for any that is I'm pretty sure because we're really aggressive and that other part of night that basically that's to catch it in case we were too aggressive. And then he has we doesn't really have much Dawn phenomenon but he does have feet on the floor. I can see on his grasp the exact moment he woke up and got out

Scott Benner 1:09:25
of bed here. You described it earlier without actually calling it that. Yep.

Megan 1:09:31
So it'll it'll just rise like crazy.

Scott Benner 1:09:34
Do you think it would be cool if I call this episode lazy control IQ ninja? That's fine. I don't by the way, I did lazy I just think you found what works for you.

Megan 1:09:44
Yeah, I did want to touch on exercise mode because I mentioned it before how we use it. Besides PE we also use it Mike have on days when he's active will stay sensitive for hours later. So we keep it Going during that time to prevent those lows that happen, you know, four or five hours later after, you know swimming or after running or whatever, you know those lows that come later, we'll leave exercise mode on that. And then our endo had a great suggestion that we have started using, which is on days worth the he just goes low for no reason, you know, we just we can't seem to get him up, we will switch it to exercise mode while we figure it out. And that has saved us so many times from having to do full setting changes and whatever, we just have that one random day where they're just low, or their pancreas seems to be working. Exercise mode fixes that for us. Nice, you know, not treating it as exercise mode, but going like, no, what's 140 What you the algorithm thinks is 140 is actually 110. For us, in reality, for however his body is reacting to this insulin. So it's not that it's targeting more, it's just that we're telling it Hey, back off. And using it as a way to do that, instead of actually thinking of it as exercise.

Scott Benner 1:11:11
Yeah, interesting. I mean, there's, I kind of think of it as impacts, right, like so the exercise the exercise has an impact for him that you know, results in lower blood sugar. So if, if the impact is lower blood sugars, but it's not from exercise, who cares? You know, if the settings on the pump help from exercise, they very well may help for other reasons why blood sugar's would fall, even though they're unknown to you at the moment. Yep, that's great. I mean, calling it exercise mode is reasonable, but I mean, they could call it like, Hey, you're gonna get low mode, and

Megan 1:11:44
we treat it as a low Temp Basal mode, like a reduced Temp Basal mode is what we treat it as

Scott Benner 1:11:51
smart. That's great. Is there anything we haven't talked about that we should have?

Megan 1:11:55
Um, I don't think so. That was pretty much it.

Scott Benner 1:12:01
Do you still feel nervous about this? Are you okay with what you

Megan 1:12:03
know? I'm an extrovert. I feel comfortable once I start talking.

Scott Benner 1:12:07
I know that you were hard to shut off a couple of times. Yeah, sorry. It's okay. I'm very happy when people are excited to talk. That's excellent. I just want to make sure we don't miss anything. And I don't want to like I noticed this a little shorter of an episode that maybe you were expecting, but I literally have to get in the shower, get out of the shower and record again. No, you're fine. Yeah. Now everyone knows I'm showering in the middle of the day, although they didn't know it was the middle of the day till I just said it. So now. Now I feel silly for mentioning any of this. I want to just say one more time. I'm incredibly impressed with what you've figured out. And so many people that have come that come on here figured out I'm really grateful that you come on here and share it with other people as well. I do think these are the conversations that will lead to others finding their what works. And I think that's what's most important. Not that there's rules and we have to follow them. And if you don't follow them, then you're not going to succeed. I think there's a way for everyone to get the help they're looking for. Oh,

Megan 1:13:06
real quick, go ahead. The other difference between Jeremy and the way we manage is we do Pre-Bolus? Yeah, we have to with the way we manage, because for us, we have it set up so that way, you know even if it suspends when we're in that Pre-Bolus I know that it's going it increases the Basal on as soon as he starts to rise again. So it increases to cover that next bit. So we're not concerned with that with the way that our numbers are input in there. Okay, all right. Yeah, that makes sense. So it suspends a bit but then as it starts to see that rise, it adds that insulin back in.

Scott Benner 1:13:42
I was incredibly impressed when he said that because I don't know how to I don't know how to manage food without Pre-Bolus thing. So I

Megan 1:13:48
mean, there are times we don't, you know, sometimes we'll treat a dropping blood sugar as Pre-Bolus Or we'll add some extra because I know he's gonna want to eat right away. Yeah, well, that's my son's preference,

Scott Benner 1:13:59
word or pizza or stuff like that. I don't care if you Pre-Bolus Before you start eating. I don't even think about it's funny. I don't think so much about Pre-Bolus thing. Here's a deeper look into my mind. I don't think so much about Pre-Bolus thing about its connection to when you start eating I think about it as with the connection to when the food starts impact. Yep.

Megan 1:14:19
Yeah, so we do cereal once a week. His current kick is Reese's puffs. You know, it's been lucky charms or whatever. And that definitely needs that needs a 25 minute Pre-Bolus

Scott Benner 1:14:32
You know, you almost have to be falling when he starts to eat

Megan 1:14:35
it. Yeah, sometimes if he's falling too quickly, we will have him take up he eats a banana, too. You know, we do all the foods that are scary in the morning. He eats chocolate chip Eggo waffles and bananas and regular yogurt. You live

Scott Benner 1:14:50
in Iowa. You're nowhere near an ocean. You don't know how to live. I mean, you're landlocked. What

Megan 1:14:55
do you want? 28 pre diagnosis. We just decided we'd sit down and figure it out.

Scott Benner 1:14:58
I understand. Have you ever had a good piece of fish or you wouldn't even know. Right?

Megan 1:15:02
I grew up in Southern California. Yes. Okay.

Scott Benner 1:15:06
How do you make it to Iowa from Southern you follow that boy there?

Megan 1:15:09
Yeah, I did. I love them.

Scott Benner 1:15:12
I can tell. All right, well, I really appreciate you doing this. Thank you so much.

First, let's thank Megan for coming on the show being so honest and sharing her lazy ninja perspective with us. And of course, we want to thank Dexcom, makers of the Dexcom G six and remind you to go to dexcom.com forward slash Juicebox Podcast of course was also sponsored today by us med head to us med.com Ford slash juice box or call 888-721-1514. And don't forget to go to T one D exchange.org. Forward slash juice box and take that survey. I'd like to thank you for listening today. And if you hold on one second, I'll give you the the episode number of the control IQ ninja episode which people uniformly seem to love. Episode 662 titled control IQ ninja. Jeremy is a tandem control IQ Ninja is the description. Jeremy is the father of a boy who has type one diabetes. And I was incredibly impressed with his knowledge of control IQ. It's well worth your time. That's pretty much it. Check out the Facebook group Juicebox Podcast type one diabetes. I'm on Instagram if you care. holidays are coming up. I appreciate that you continue to listen and download the show. I hope you have a happy holiday. A merry whatever. Happy this and that. Whatever you do you know what I mean? I will be back soon. And by soon I mean tomorrow with another episode of The Juicebox Podcast. There's no holiday here, baby. We make a podcast here. All right. Every day one's supposed to come one comes quality, quality, quality, non stop. Doesn't stop doesn't stop. Here it comes again. I'm feverish a little bit from the illness. So let me just apologize and bow out of this

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#794 Omnipod 5 Reset

Cate's child has celiac and type 1 diabetes and he uses Omnipod 5.

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

+ Click for EPISODE TRANSCRIPT

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 794 of the Juicebox Podcast.

Kate is here today her child uses Omni pod five, and they've done a reset of the Omni pod five. So it's a big conversation. But somewhere I don't know about 40 minutes in we're going to talk about how they started over with new settings. You'll see. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. If you're looking to start with on the pod five, or you've gotten started and want to know more, I have a three part series that I produced with Omni pod all about it. You can find it at juicebox podcast.com forward slash Omni pod five, or by going to episodes 736 737 and 738. Do you have type one or are you the caregiver of someone with type one? Are you also a US resident? Well, you're in luck, because if you go to T one D exchange.org, forward slash juicebox you'll be able to join the registry. Fill out the survey help people living with type one diabetes, move diabetes research forward, help yourself maybe get involved in research yourself if you want support the podcast so much is going to happen when you go to T one day exchange.org forward slash juice box and complete that survey. This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod five, and the Omni pod dash. To get started today. Go to Omni pod.com Ford slash juice box. You can be tubeless and automated with Omni pod five or tube listen. Well not automated. Without the pod dash to grade systems. You take a look see which one's best for you. The podcast is also sponsored today by the Contour Next One blood glucose meter. This is my favorite blood glucose meter. The best one I've ever used, held touched, or thought about in my dreams contour next one.com forward slash juice box. There's a number of reasons to love the Contour. Next One, and I'm gonna tell you all about them in just a little bit. Today's show is also sponsored by us med. Get your diabetes supplies the same way we do from us med go to us med.com forward slash juice box or call 888-721-1514 When you go to the link or call the number you can get yourself our free benefits check to get started right away. We get on the pod and Dexcom from us Med and you could too as well as a number of other things they'll tell you about me.

Cate 2:50
My name is Kate. I have three children, all boys that are 10. seven and five. I am teacher at the school that they go to. And my 10 year old Grayson has type one diabetes and celiac disease

Scott Benner 3:08
10 Seven, five.

Cate 3:11
Yes. All boys. All boys. Yep.

Scott Benner 3:15
I send you a picture what my mom looks like now because that's your future.

Cate 3:19
Oh my god. Yeah, the hardest part about setting this up is just like making sure like they aren't here so that they don't come in the room a million times.

Scott Benner 3:28
So while you are getting this together. Yeah, we're tiny bit of technical difficulties. I thought that I heard a young man yell. Oh my god, the cat got out.

Cate 3:38
Yeah, that was Grayson. So the little to my younger two boys, I got out of the house because there's I can't function with them here. And my oldest Grayson is still here. So I'm like, you have to take the dog like that's your job, get the dog in your room. And he left the dog out when he was trying to help me with my headphone issues. So.

Scott Benner 3:58
Okay, and when you say the other two, aren't there? Yeah. Are they alive? Because it's, it's early in the morning. Like, where are they at?

Cate 4:07
Yeah, I just told them to go, you know, outside. I locked the door and they'll be fine. They'll entertain themselves for an hour

Scott Benner 4:12
in the street. Right? Yeah, absolutely. Well,

Cate 4:15
I don't know. No. They're there at the museum for the for the morning, which is good.

Scott Benner 4:20
Oh, I'm just putting it together. Now why you can do this. Today's Columbus Day.

Cate 4:24
Yeah. So we're off from school, which is good, because I'm available. I'm not working but also not good because the children are home. So yeah, it's

Scott Benner 4:33
not not a real day off. The boys are by themselves or there's somebody with them?

Cate 4:38
No, they're, there's somebody with them. Okay. They're supervised by an adult who was surprisingly willing to take them and we'll see how that goes.

Scott Benner 4:48
We lived on a very busy road. So okay, yeah, I mean, people might be imagining just like a street where like you But cut through town or something but I'm telling you we lived on a on a five lane road. Oh God, my house. It's terrible. My house was 25 feet from the sidewalk. And if it was constant traffic, and there during the summer as a matter of fact, like when the sun was shining at the at the front of the house if a truck or tractor trailer would go by and it would eclipse the room it would scare the hell out of you like it was like that. And we want through my younger brother, but naked out. So,

Cate 5:30
yeah, that's pretty much what it's like around here. Like, I live in a neighborhood but people drive really fast. Which is crazy to me. I'm kind of like on a curb. So I feel like you really can't see the kids if they were happened to run on the road.

Scott Benner 5:44
Well, if they're Neko

Cate 5:46
Oh, yeah, absolutely. They would be like glaring, but they like last year when I moved in here. I bought this thing on Amazon. It's, it's uh, it looks like the construction gate. And it goes at the end of your drive. It's like this big orange. Oh, I know. Yeah. Yeah, Master gate. And so it stops them from like when they're playing basketball, running into the road, like Chase her ball. Now as you come in the neighborhood, like the lady with the gate, like I went to a block party and people like, oh, yeah, you're the house that has like that orange gate.

Scott Benner 6:17
So yes, because my kids will run into traffic. Do you understand? Yeah.

Cate 6:21
Which makes me sound like a really good parent. So

Scott Benner 6:25
let's get this recorded before these kids kill you. Because it's probably not gonna it's not gonna take much longer. Oh, no, for sure. Okay, boy, mom, here we go. Your 10 year old is the type one he also has celiac and tell me his name again. Grayson, right? Yeah, Grayson, yeah. Okay. All right. So how long has Grayson had type one?

Cate 6:45
He was diagnosed in July of 2021. We're like, just over a year.

Scott Benner 6:51
Okay, pretty recently, celiac before or after diabetes?

Cate 6:56
It was they told me, Well, they apparently tested him, like at the diagnosis of the type one, but I didn't know that. And they called me like, 10 days later to tell me that his celiac

Scott Benner 7:07
panel was positive. Had you noticed anything about it before?

Cate 7:10
No. Like he literally had no celiac symptoms at all. It was like, switched on when the diabetes came on?

Scott Benner 7:19
And is he keeping a celiac diet?

Cate 7:22
Yeah, yep. So she's been on that for about a year. Did

Scott Benner 7:25
the rest of the family change with him? Or did you? Yeah,

Cate 7:29
for the most part, yes. You know, and that's like, tricky, because my little boys sometimes don't understand, like, why can't you know, we went to like a farm this weekend, for like a fall thing. And they want apple cider doughnuts, but there's no option that's celiac, you know, friendly. And so that's been a little tricky. But over the course of the year, like, I'm starting to learn how to bake things to to supplement the things that they all want. So if one wants donuts, then we can figure out a way to make a doughnut for gray or find you know, an option. We're lucky to have some grocery stores around that are celiac friendly. So that's been good. But for the most part, we all eat gluten free.

Scott Benner 8:07
Okay. What are his symptoms? If he has gluten?

Cate 8:12
He is like immediately sick, like in the bathroom? Like lots of diarrhea.

Scott Benner 8:19
Well, that'll. That'll make you eat gluten free. That's for sure.

Cate 8:22
Yeah. So that I mean, not that I want him to have those symptoms. But I know like people that don't have bad symptoms, I could see that being hard to stick to, you know, a celiac or gluten free diet, but because it makes him sick, like he doesn't want to do that.

Scott Benner 8:37
Well, Caitlin, I now feel absolutely compelled to say that I have learned through the podcast, that even if you don't have symptoms, you can be doing serious damage to the internal portions of your body, which could lead to things as serious as cancer. And if I don't say that people with celiac will yell at me online. So I now.

Cate 9:02
Yeah, I heard that episode where I appreciated the woman. I can't remember her name, but she came out and I think she had written you an email about how like, you can't just like eat the cupcake. Yeah, no,

Scott Benner 9:12
I got the cupcake. I'm not even bringing that up. Caitlin. All right. Well, I'll bring it up. All. All I did was this guy was having serious mental health issues. The Father Yes. And his son, had I got guests gotten a celiac diagnosis but was having from what I understand, like no symptoms whatsoever. So you could either hand listen, if celiac was a thing, he could eat a handle full of it and nothing happened to him. But then obviously there's I said obviously because I do not want to get yelled at but obviously there are there are still impacts that can be had even though you're not seeing them physically, that are fairly serious and up fairly serious up to really serious And I was trying to make the point that while the guy was figuring things out, yeah, maybe just let them have the cupcake. Because also, I would like to say, Kate, that He also described a scenario where the kid wasn't really having cupcakes. It was just this. He was. You have to go listen to it. He was in a panic.

Cate 10:18
And yeah, I heard I heard it. I know exactly what I'm talking about. Yeah.

Scott Benner 10:21
It was like he was he was having real trouble. And he, he couldn't add one more thing to his plate. And, and he's like, Well, what about at a birthday party? Like he was crying? Like, what about your birthday party? He wouldn't be able to have a cupcake. And I was like, Well, does he have a lot of cupcakes? And the guys guys like, No, you I'm like, does he go to a lot of birthday parties? He's like, No, I'm like, well, then until you can pull this together. What if you just let him have the cupcake. And then the letters came?

Cate 10:47
Yeah. It's funny, because the reason why Grayson is still here is because he's actually going to a birthday party today. And so he's he's getting picked up in a little while. And like, it is a thing where like, I have to pack a lunchbox with gluten free pizza, the gluten free cupcakes, they're going to a sports place where they're going to drink Gatorade. So I've got it, you know, sugar free Gatorade, and you know it, I could see what he was saying where it like feels like another like another hit that you're like, God, like the diabetes was bad enough. Now this and it's more annoying sometimes. Because I don't want to like, bake and cook all this stuff in preparation for my kid to go to a party. You know,

Scott Benner 11:31
I completely understood which was why he was trying to save him into Yeah, until he was Josh. By the way. Josh has been on twice. He's an incredibly like, open. empathetic, yeah, person. His episodes are called Josh has all the fields. And Josh has added more fields. So go listen to them. And please don't write me a note and yell at me. But yeah, but food quality. I mean, I I listen, it's not the same thing. But Arden has been at college now for about a month. Yeah. And the quality of food at college is not what it was in our house. Right. And we are like fighting with almost every meal Bolus, because the food, the food's just not as good as what she eats at home. So, I mean, there's part of me that feels like I'd like to be walking around behind her hand in her lunchbox every time she went through me.

Cate 12:24
Yeah, you know? Yeah, yeah, for sure. And I think that's the thing in the first year, like, I definitely understand, you know, from listening to so much of your podcasts, like what needs to be done. It's just it takes experience to figure out like, how do I Bolus for this thing that he hasn't eaten before, like yesterday, he had a chocolate pudding. He's never had pudding before. And like, you know, something happens that you don't expect you have to figure out like, how to Bolus for each food. And once you have that, you know, under your belt, I feel like eventually it'll get a little bit easier. But we still are fighting with a lot of, you know, meal Bolus, especially with the gluten free food because it just hits a lot harder.

Scott Benner 13:04
Yeah, gluten free doesn't mean low carb. That's for sure.

Cate 13:07
No, it's like twice the carb when people say they're doing a gluten free diet to lose weight. I'm like, You're crazy. Like you got it wrong.

Scott Benner 13:14
Do you remember me saying on the podcast once the doctor made me go gluten free for a month to test something? And I was like, Oh, I'm eating healthy. I gained 10 pounds. I was like, Wait, yeah.

Cate 13:23
Yeah, it's definitely not good. And like when I say we eat gluten free, like I primarily eat mostly gluten free, but I don't eat any of the gluten free products. You know, Grayson does because he's a kid and he wants a sandwich. And you know, he wants pretzels and things like that. But they they definitely are all made with like rice flour and things that are really hard to Bolus for. So that's been tricky.

Scott Benner 13:45
Yeah, you definitely have to be careful. Gluten Free can also mean processed. Yeah, with a lot of those a lot of those prepared foods anyway. Okay. So, keep that's not really why you're on today. Right? You're on because Grayson has been using on the pod five? Yes. Okay. So how was he managing? I almost said straight out the gate. And I don't know why.

Cate 14:12
No, that's what it's gonna be called, isn't it?

Scott Benner 14:14
Oh, no, I don't think so. Because that's my phone. Because I said, Hey, how was he managing straight out the gate? And then I thought, there's a phrase I've never used before, but, okay, I didn't get a ton of sleep last night. So this could get hairy. But no worries, no worries. But when he was diagnosed, and he and he came home, what do you have?

Cate 14:33
So we left the hospital with pens, you know, pretty much like everybody else. And then I would say within about a month he we got him on to Dexcom which was very helpful. And I'm kind of like the type of person like I don't like to wait when I like make a decision. Like I knew pretty early on that I wanted him to pump and he was a little bit nervous about that. So we you know, It took some time settling in, but I had joined a local support group and I, you know, was talking to them about pumping and how the, you know, the endocrinologist wants you to wait six months or a year or whatever. And the ladies in the support group were like, No, you don't have to do that, like you can. You don't even need to go to the pump training. You just research them on your own, decide what you want and tell them and they'll order it. And I was kind of like, Oh, I didn't realize like, I could just tell them what I want to do and skip, you know, their their rules, per se. So probably within like three months, maybe I think November he started on Omnipod dash.

Scott Benner 15:37
Okay, so in a month Dexcom and a few more months Dash. And then how long ago did you start five?

Cate 15:44
He was he started on the five at the end of May.

Scott Benner 15:48
May, June, July, August, seven months ago. About?

Cate 15:53
Yeah, it's a pendant lamp. Well, June, July, August, September. Yeah, maybe like five months or so

Scott Benner 15:59
five, six months? On the five. Yeah. And all right. So when you first started it, you were pretty some it's it feels to me like you got it right away when it came out. Is that about right?

Cate 16:13
Yeah. Yeah. Like I said, I'm not super patient. So you know, I was waiting, I got that email that everybody got from Omnipod saying it was available. And I called my endocrinologist that day. And they were like, What are you talking about? Like, they didn't even know that, you know, it was rolling out. So that was fun. And they didn't know how to prescribe it. They were like, we don't have codes yet. Like you just you've got to wait. So probably a week went by until my endocrinologist put in the script. And then when it got to the pharmacy, then the insurance became an issue. So I had like a two or three week battle with my insurance company to get them to cover the intro kit, which has like the PDM in it, or the controller. Yeah, I

Scott Benner 16:57
think they figured that out that all that coatings figured out by now. But yeah, I remember that. Yeah.

Cate 17:02
Yeah. So like I was calling our insurance company all the time, like, trying to figure out why wouldn't go through why were the pods covered and not the controller. And finally, one day, I was just so fed up with it. I just told the people there, you know, they are diabetic experts. Like, they were like, no, no, it has to go through DME like it definitely does it. And you know, we're having this battle. And the lady was thought I was talking about the Dexcom. Like, she was confused. And I was finally like, I just want to speak to your manager, like whoever's above you like, I just, I'm ready to just move on from talking to you. And my kids thought that was hilarious. And like, called me a Karen, they were like, You asked to speak to the manager? I was like, I'll do it. You know,

Scott Benner 17:48
okay, at one time, I said, you know, I need to speak with your manager. And there's nobody here above me. And I said, I find that completely hard to believe you're in charge. Even as I was saying, and I bought it sound like a thick, but whatever. Yeah.

Cate 18:03
Yeah, it's fine. I'm like, if I'm gonna get what we need here, I'm totally fine with owning that Karen status for a little. So eventually, they, they did. I talked to the manager, and he literally was like, I'm just going to override it. It's fine. And I no joke had the pump the next day.

Scott Benner 18:20
He's like, will you hang up? If I do this?

Cate 18:23
I know, I'm like, God, I should ask the manager more often because we got what we wanted.

Scott Benner 18:28
Okay, so on the pod five comes. So the picture we're painting here, because by the way, all those insurance problems that you just described, where we're like a launch issue, it doesn't exist anymore. Like nobody's gonna tell you, you can have the pods but not like your stuff like that. So. But it's an indicator of how early on you were into it. So you had it before I even put out those three episodes about starting on the pod five, right?

Cate 18:55
Yes, sadly, yes. Because we were, I was like, kind of jumping in blindly with what to do with it.

Scott Benner 19:02
So you know, if you go back and listen to those three episodes that I made in conjunction with AMI pot about starting on a pot five, you're gonna hear that the closer your settings are to a 5050 split between Basal and Bolus insulin, the easier time that the algorithm is going to have getting itself set up and straight so when you started it the first time do you remember how you had your settings?

Cate 19:29
Yeah, we definitely I did not put in settings that were aggressive enough for sure. So I think we were definitely also relying on basil.

Scott Benner 19:41
Krishna one job here kale. You know, and I mean, you didn't let him down you got on the on the pod five right away when he needed it. Now. This kid can't hold on to the stock. What do you think he's doing that I thought right or do you think he's ignoring it going? Like I asked my son that take the dogs to take take care of the dogs And I come down. I'm like, Hey, you took the dogs out. You just not yet. I mean, you've been down here for half an hour. Yes. They don't seem to be in a hurry. And I was like, well, when they peed on the floor, or whatever they're gonna do if you don't let them out like, well, you clean that up. And he was like, no.

Cate 20:15
That's about it. Yeah. Well, FedEx truck just pulled up. And so that's what he's barking at. And I'm sure like gray clearly has already forgotten that.

Scott Benner 20:24
He's been talking for 20 minutes. So yeah, I'm sorry. I apologize. So you I'm sorry. So you said you set it up with your settings. How are you? How are you? I guess my first question is when you were on dash, were the settings like super tight? Was he super stable at a low number or were you still working that out? US med carries everything from insulin pumps and diabetes testing supplies to the latest and CGM, like the FreeStyle Libre three and the Dexcom G six, and we get Ardens on the pods from us med. As a matter of fact, US med is the number one fastest growing tandem distributor nationwide, the number one rated distributor index com customer satisfaction surveys. And they're the number one distributor for FreeStyle Libre systems nationwide, you're gonna get better service and better care from us Med and that's what they've given to the over 1 million diabetes customers that they've helped since 1996. US Matt accepts Medicare nationwide and over 800 private insurers. So don't delay, go to us med.com Ford slash juice box and get started or call 888-721-1514 You deserve and you need a great blood glucose meter. If I was you, I would check out the Contour Next One. You can do that at contour next one.com forward slash juice box, a website that I will visit with you right now. And through the magic of editing. I'm already here contour next one.com forward slash juice box. What do your test strips really cost you it's the first thing you're gonna see at the top. It may be cheaper to buy contour next test strips over the counter without a prescription get out of here. That's insane, but it might be true. Click on the button and find and find what find out by now the big orange button will take you to a place where you can buy the meter and the strips. You can choose Amazon walmart.com, Walgreens CVS, Meijer, Kroger target Rite Aid. And that's just the tiniest bit of what's on this website. You have to poke around. It's got so much information. I know you're thinking how much information could I need Scott about a blood glucose meter. Well, I don't know how much you need, but it's there at contour next one.com forward slash juicebox. Here's what I think you need to know. In a nutshell, easy to carry, easy to hold fits in your pocket or your purse. Bright light, easy to read screen test trips offer Second Chance testing in case you don't get enough blood the first time, which is not to say that it needs a lot of blood. It uses a very tiny drop. But if for some reason you fumble around you don't get it but you get some you can head back get the rest without ruining without ruining. I'm just gonna keep talking without ruining the Jesus mother of God. It's Sunday night I'm sorry, without ruining the accuracy of the test or the strip itself which will save you money and give you peace of mind. You deserve an accurate blood glucose meter. And whether or not I can say my words or not, doesn't matter. This is the one you should be getting contour next.com forward slash juicebox. We've been using it for years. It's terrific. Okay, last one today guys. Omni pod five. Now the Omni pod five is the only tubeless automated insulin delivery system that integrates with the Dexcom G six CGM and it uses smart adjust technology to automatically adjust your insulin delivery every five minutes, helping to protect against highs and lows without multiple daily injections. And you have the option to control it from a compatible smartphone. The Omnipod five is also available through your pharmacy, which means you can get started without a four year Durable Medical Equipment contract that comes with most other insulin pumps. This counts even if you're currently in warranty with another system to get started with the Omni pod five, just go to Omni pod.com Ford slash juicebox. I mean, we're talking about it today, you've only heard half the story. Where do you hear the rest of it? I think you're going to be running, not walking to get an omni pod five, for full safety risk information, free trial terms and conditions, as well as a list of compatible smartphones. You can also go to omnipod.com forward slash juice box but I just realized I said free trial terms conditions but I haven't told you about any free trial. So let me just tell you that you may be eligible for a free 30 day trial of the Omni pod dash now that's not the only part five not the automated system. But the dash which is an amazing tubeless insulin pump that you control Omni pod.com forward slash juicebox go find out which way you want to go you want to go five you want to go down Ash, you want to try the free 30 days, it's up to you really get in there, fight for yourself, whether you're looking into Omni pod Contour, Next One or US med or any of the sponsors, please use my links when you click on my link, it supports the show. Those links are available at juicebox podcast.com. In the show notes of the podcast player you're listening in right now or in your head, if you remember just the type of in a browser, all those ways count. Thank you very much.

Cate 25:29
I feel like for being in our first year, I was really happy with how we did on dash when he back in April only got to say once T after he had been on dash, you know, for about six months. He was at a 6% which I was happy with. Yeah, and you know, it's not do I think some people run lower? Yes, I would say he was averaging around like 121 30. Somewhere in there. Which you know, for an active 10 year old it was working for him. It was a lot of work though, for us. Like we were doing a lot of like Temp Basal, like constantly trying to adjust and give a little bit more and take a little way to keep him in range, which was difficult,

Scott Benner 26:15
right? Which means you don't know exactly what his settings were because you were adding. Right. Okay.

Cate 26:22
Yeah, yeah. So I, we had done some basil testing. And at that time, I was working with Jenny. So she was really helpful and helping us kind of tweak things here and there. And I felt like we got to a point where we were doing okay, like his setting seemed good. But I do think looking back now we were probably relying a little bit on his Basal. So his ratio, it was not 5050 When he looked back in his settings, so

Scott Benner 26:50
you're saying you had like a heavy Basal rate? Yeah. So yes. Okay. So you were bumping around a lot, because you were feeding the insulin and then going back up? Yes, yeah. Okay.

Cate 27:02
Which I could kind of do at the time because Grayson went to the elementary school that I work at. So I would like to sneak down to his room and like, give him a little more take a little way. Like I was doing a lot of management during the day at school,

Scott Benner 27:15
and the kids who were teaching can't count now, is that correct?

Cate 27:19
Well, I teach reading, so they, they might be able to count but um, they might be below in reading. So

Scott Benner 27:25
I don't know this word but Grayson's Okay, so everybody's,

Cate 27:29
yeah, they totally new like, they do the chaos of like, diabetes. And, you know, sometimes a kid came with me, I'm like, Hey, Grayson's low on the playground, we gotta go find him. You know,

Scott Benner 27:41
let's go on an adventure. Or as I call it at my house, how?

Cate 27:46
They were fine with they're like, Oh, we're getting none of our lesson plan. Right?

Scott Benner 27:49
Yeah, right. Yeah. You're not gonna make me read? I'm down. Yes. So when you start it? I mean, I guess just tell me how it went for you the first couple of weeks.

Cate 28:00
It didn't go great. In the beginning. Like all of a sudden, we were seeing a lot of highs after meals. And you know, we had some lows, the night time was a little bit better. I know a lot of people have said that too. But what I ended up realizing was that his carb ratio was very wrong for the Omnipod. Five. So we ended up switching I think he was at one to 25 when he was on Dash. And we ended up at like one to 15 Eventually. On Omnipod. Five, like Jenny had told me Jenny was like, I would put it down to one to 20 I'm like, what that's like, way too much. That sounds crazy. And she was right. And then some because we definitely needed more insulin at mealtimes, for sure.

Scott Benner 28:44
Yes, she was trying to move you incrementally and you weren't moving. Were you? I

Cate 28:47
was just, I was nervous. I was like, Oh, I'll try like one to 23 like I just did it very slowly.

Scott Benner 28:56
Do you ever think of this from Jenny's perspective, because I just occurred to me like, like, your call ends and she just like smacks her head on the desk and goes

Cate 29:05
I feel like Jedi and I, I feel like we've got each other because there was a couple of times I was on the call with her. And like, all three of my kids are jumping on my bad like she's a boy mom. I'm like, life is crazy over here. You know, she got it.

Scott Benner 29:18
Yeah. It's nice. It's also interesting to hear. She's very good at what she does. Oh, yeah. Yeah. I don't even know if how well that translates when she's on the podcast. But yeah, having her help you with something is a is a hell of a bonus. That's for sure. Yeah. Okay. So you finally listen to Jenny, you move the carb ratios a little bit. But yeah, I think I'm not gonna say the problem. But the issue here is that the algorithms trying to learn and what you told it up front was pretty far off. I mean, one to 25 versus one to 15. Yeah, it's a big difference. And yeah, and so you were that far off on the carb ratio. How what about the Basal would you tell the bay Isn't wasn't started

Cate 30:01
the Basal I had him set when he was in manual mode for something like I would say 8.5 units a day. Yep. And I would say averaging now when I look through, he's getting like 10. How would you like 10 to 11 units of Basal, I believe,

Scott Benner 30:23
okay. Let's just tell people 8.5 divided by 24 is point three, five ish. And what are you happy now? More like 10?

Cate 30:33
Yeah, like, I would say like 10 and a half to 11 Some days.

Scott Benner 30:37
Let's say 11 For fun. And we divide 11 by 24. And that's point four, five an hour. So an extra point one an hour. Which mean, he's 10 years old. Probably hasn't hit any kind of puberty yet. What he probably what weighs like 85 pounds, like in that space? Yeah, yeah, I

Cate 30:54
think he's 80 pounds right now.

Scott Benner 30:55
Okay, so yeah, so that's a fair amount of change point one an hour for basil. And then this is the a big eater. Like, how many carbs is a meal ish?

Cate 31:09
Um, yeah, he we are definitely not low carb by any means. He's a big eater. He likes to eat all day long. I mean, I don't even want to say it. Like, sometimes the school nurse is like, seriously 120 carbs for lunch, you know? Like, he definitely eats a lot of carbs.

Scott Benner 31:26
Okay, so So that's interesting, because like that many carbs 120 carbs divided by 25 is 4.8 units. But 20 carbs divided by 15? is eight units.

Cate 31:39
Yeah. Which he never yeah, like I was eight units is is probably high for what he gets. But like, I would say on average, I try to pack him for lunch, around 80 grams.

Scott Benner 31:51
Okay, we'll see. It's funny. Kate, you're hearing my statement from a different perspective. You're like, don't tell people he eats a lot. I'm not I'm saying look at the difference between how much insulin a meal needs versus what he was getting. So there was a moment where he was getting 40% less insulin than he needed. And point one an hour basil. And then you're asking the algorithm like keep him steady. But here's what I told you versus here's what he needs. Yeah, yeah.

Cate 32:21
So like, we must have just been doing a lot of corrections and a lot of like, you know, adjustments to his Basal during the day to try to accommodate for all of those things. It felt like a lot of work to keep him in range. And obviously, we just, you know, didn't have his his settings quite right. Yeah. But of course, when you go to the endocrinologist, they saw as a one C six in April, and they're like, Okay, yeah, you're good. Keep doing whatever you're doing. So there's wasn't a whole lot of like, guidance into like, maybe you could change this or that so that you're not having to like, set Temp Basal all the time,

Scott Benner 32:59
where you had you listen to the Pro Tip series of the podcast?

Cate 33:04
Yes, probably like three times through.

Scott Benner 33:06
Because the one you missed was bumping nudge to the one where I say, Hey, if you're bumping and nudging a lot, your settings?

Cate 33:13
Yeah, yeah, a quarter percent? No, I definitely listen to that. What's funny is like, I think I listened to them too early in his diagnosis where I didn't fully understand what everything meant yet. I just like stumbled upon the podcast and started listening. And looking back. Now, if I was gonna do it differently, I was listening to like, the defining diabetes, like really learning what all these things are, and then listening to the protests, but that's why I listened to them more than once. Because six months later, you're in a different headspace where you're like, Okay, now I know what he's talking about. Yeah,

Scott Benner 33:48
I've heard that a lot from people. Okay, I'm just pointing out for people listening, not explaining something UK that you already know, at this point. But if you're forever fixing blood sugars with a little more insulin or a little more food, then there are settings that you could have that would make stability that would keep you from having to make those adjustments so frequently. Yeah. So.

Cate 34:10
And the other issue, I think we had to is pretty quickly into starting on Omnipod. Five, the controller started having app errors. So I don't know if you've experienced that, but it would just like it would almost look like it was on a loading screen. And then when it would go through the little loading almost like it was updating it then it would like be really loud and say app error, call it in. And the first time it happened, I hit okay, like I'm gonna call it in and the screen went, that notification went away. And it was working fine. I'm like, Oh, that was weird. I don't know what that was. And it was already gone. So I'm like, Well, I don't I don't know how to like, call that in, you know,

Scott Benner 34:53
right. Yeah. Go Yeah, it happened. What? Well,

Cate 34:57
that happened many times. And we made the mistake of just waiting too long to, to correct that and get in touch with Omnipod. And we ended up with a new controller in July.

Scott Benner 35:12
Okay. All right. So you fought with the problem you didn't have to fight with, if you were to call them and tell them they would have been like, just give us an update. We'll give you another one. And 100% Yeah, stick with it for a while. We didn't have any errors with the controller. But I do remember it beeping at times where Arden was like, why is it beeping? Yeah, the same thing you did. I was like, I don't know, I don't have time to figure it out.

Cate 35:36
And like, I feel like subconsciously, I knew that if he got a new controller, we had to start all over with the learning. And I was thinking that that wasn't a good thing. I'm like, I don't want to do that again. And he was in July, he was heading to diabetes camp. So I was like, I really don't want to start on a new controller, you know, a week before he goes to camp. And so I waited until he got home. And then we started him on the new controller, which actually ended up being a good thing. Because this time i i feel like i put in more aggressive settings. And the learning happened much faster.

Scott Benner 36:11
Okay. Yeah. So there's the irony, right? You? Yeah, if you want to just call it about the controller, you would have had to restart. So this is this is I think, if I'm remembering correctly, why was excited to have you on because you had this experience of setting up on the pod five with settings that probably weren't so good. And then having to restart which made you rethink your settings? Because I'm assuming when you put them in the next time, you use different settings, is that right? Yes. Yeah. In the end, can I ask you Would it have been as easy as just taking his total daily insulin? Dividing it by five by half? Putting? And then like, I don't know, let's just make up a number. Let's say his total daily insulin was I mean, I guess we could actually figure it out. 10. Let's just say it was 40 units. Let's I'm sure that was a big number. But if his total daily was 40, then you could take 20 of it. divided by 24. Tell him that is Basal rate is point eight ish. And then tell it the total daily insulin is what it asks for. And then that would have been it like just going to a 5050 on total daily, do you think that's pretty close to where your settings were?

Cate 37:20
Where do Yeah, I think I think you could probably do that, like I, I might have made it like far more complicated than it needed to be. When I set up the controller, the second time, I, you know, I want the basil, I can tell you exactly like what hours of the day he runs a little lower and what hours he runs a little higher. So he's never been on like point three, five every hour of the day. So it's like lower between 12 and 2am super high in the morning hours, you know, higher Basal between like eight and 10pm when he gets a little bit of a spike from bedtime snack. So I didn't want to just do that, because I wanted a really good Basal in case I needed to get into manual mode. So I you know, he's still got that like, very adjusted sometimes the Basal tie some hours, it's set low, it still looks like that now, gotcha.

Scott Benner 38:15
No, I I'm, I'm actually just looking at Arden's Basal right now. And hers is running at like, almost double what it says that she's asleep at college, or no, she's on her way to class now. She's probably on her way to class now. But yeah, I mean, it's, it's amazing to watch the algorithm work, right? Like, take it away, give it back, you know, it's a give you extra give you less, it's pretty, it's pretty cool, actually. But, but so in, I don't want to, I don't want to be the one that tells everybody reset your system, if it's not working the way you want it to. Because I don't know, I don't know that that's a cure all. If you're having if you're unhappy with how the algorithms work, and maybe there's other ways that you could be messing this up, too. You can be miscounting carbs significantly, there's, you know, there's you could be eating a lot of fatty foods and not covering it. And, like, so I don't know everybody's situation. But it is interesting to hear that this happened to you. So prior to the controller change. What do you think? Like, Where were your average? I don't know how to ask you to measure. Yeah.

Cate 39:23
Well, so what's interesting is actually he had an appointment at the endocrinologist in July, like, so three months, you know, into being on the system right around the time when we were about to switch controllers. And we got as a one C back because I was like so curious to see like, what's going to happen to his agency like now that we're on this different system. And so going from April to July, he went from a six to a 6.1. Okay, okay. So I mean that a huge,

Scott Benner 39:56
right, it was a creep, like in that direction.

Cate 39:59
Yeah. So which, which makes sense, because, you know, I think we didn't have the settings right, you know, you're trying something new, it's, it's definitely not, you know, just set it and forget it, there's still a lot of, you know, thinking that has to be done, like you said, you know, get a cell card count, right and make sure your settings are right. There's still a lot of variables,

Scott Benner 40:18
putting the putting the six to the six point wine aside for a second. What, what's the variability like? In the beginning? Like, was there a ton of stability? Where you higher than you wanted to be a great deal of time? Are you finding lows? Like, what was the actual usage? Like, before you made the changes?

Cate 40:36
I would say we weren't really fighting a lot of lows. I think the system does a good job of being conservative and avoiding a lot of lows. I mean, the only time we really were seeing lows was like, if he would go swimming, and you know, he. Okay, I lost you. intense activity. Okay, that might have happened. I'm sorry. We were definitely still fighting. So

Scott Benner 41:03
I'm so sorry. I lost you for a second. I lost you after the word swimming.

Cate 41:08
Oh, so like, if you went swimming, you know, and he's in the pool for an hour and was away from his Dexcom. You know, he might come out and end up low, like some things like that, I think are tricky to control. But for the most part, we were still fighting with some highs.

Scott Benner 41:26
Okay. And high being what, like in your mind, what's the number that makes it high?

Cate 41:31
Well, I don't really like him running over 200. But mostly, it's like mostly post a meal spikes. And they would last. Yeah, that would sometimes last. Yeah, that's like I'm looking at his number right now. Like he and part of this too, is just, he's got, we have other factors because we've got the gluten free. We're still trying to figure out how to Bolus right for that. And like so this morning, he ate a friend of mine big 10 muffins, these gluten free pumpkin muffins. And he ate that. And he's at 285 right now, which is obviously not not a great number. I obviously missed the Bolus on the muffin.

Scott Benner 42:16
Also the way you said that was hilarious. You said this morning he ate and you paused and you said a friend of mine. And then you made muffins. And it was great that I loved it because I was like, Well, this morning he ate a person that'll definitely drive up. Yeah, that'll

Cate 42:31
do it. Yeah.

Scott Benner 42:32
I mean, it's not a ton of carbs and people but the adrenaline's gonna be crazy, don't you think? Yeah, yeah.

Cate 42:39
And now he's going to the birthday party. I just saw him leave now. He's gonna go eat like gluten free pizza and cupcakes. And it's probably not going to be a great number.

Scott Benner 42:48
So what do you do? Like you've you've got a big number, because you missed on a Bolus? Do you correct it? Yes. Just let the algorithm do it. What do you how do you handle it?

Cate 42:57
No, I, and this is where your episodes would have come in handy when we were getting on Omnipod. Five. But right away, I definitely corrected a high if I saw that he was high. I'm like, I don't care if the algorithm is going to learn or unlearn or whatever. I'm going to correct it every time. And, and so we always do that. Where things are sometimes tricky is if he's high, and I go to put in a correction, and it tells me he needs nothing. I'm, I'm always like, Okay, so do I just override this? How much do I decide to give him? And I think in the beginning, that was hard for me to figure out like, should I just give him a little bit more? Because I know he needs more? And I think the answer is yes, it's just how much so if I give him too much, I think you can end up stacking because the pump is trying to correct the high as well. You have to be careful, like overriding, I learned that kind of the hard way. So if I'm gonna give him a little extra even though the pumps telling me he doesn't need it, it's usually like point one like I give him you know, I'm pumping and nudging just a tiny bit because I don't want to,

Scott Benner 44:12
well, there's a balance in what you're doing, right? Because the the algorithm is correcting at its own speed that could end up taking longer than you want it to. So you you you say well, I want to push it a little harder. But then you also kind of have that in that moment. Now that you've added extra insulin. You've put in too much insulin, there's going to be a little later at some point, but you have this odd expectation like oh, the algorithm will stop it. But right you've put it into a situation where it can't stop it. Right. And that's that's the one thing about every algorithm based system. It literally like every one of them that people have to understand is that it's not smart. Like you don't I mean, like a sentient being. It's not looking and going okay, well, grace and how Add food at 10. And even though his mom told us that it was 20 carbs, it's looking like it's more. So all. You know, it doesn't do that. It just it, it believes you. Yeah, I mean, 100%. Yeah, it's like the setting say this, they said this, I believe that we are moving forward based on this as being true. And then that means if your settings are wrong, your carb count is wrong, or you're eating something that has more glycemic impact than its carbs might indicate or anything like that, you're not going to get the outcome you're looking for. And the algorithm is not going to just, it can't make a conscious leap after that. It just keeps doing what it's doing.

Cate 45:39
Yeah. And I think we were relying a lot on an extended Bolus to which worked really well, for the high glycemic foods, all the gluten free foods, like he would eat and then I would just toss in like 10 grams and extend it, you know, almost at every meal, he was having something gluten free. And that worked really well. And so that we had to figure out like, how do we deal with that now that we can't use extended Bolus when he's in automated mode?

Scott Benner 46:07
What are you doing?

Cate 46:09
So I think part of it was just the carb ratio issue. Like, I think once we will, of course, like if his carb ratio was set at one to 25, and then I'm adding 10 grams, like, I should have just seen that it was really just a carb ratio issue. So now that he's on a ratio that's better suited for him, he doesn't need that extra 10. Okay, I do still think that when he's eating fat or protein, that's when I also would have used an extended Bolus, and I just set a timer on my phone. And I Bolus for the app for the cat an hour later.

Scott Benner 46:45
Okay, that is definitely what I would do with both of those scenarios. But this is the part where we have to tell people, here's the thing about AMI pod five, you set it up and told it one to 25 carb ratio. Yeah, if you realize, weeks or months later, oh, it should have been 115. Yes, just going in the settings and changing it does not impact the algorithm. It only impacts the settings that you'd be using. If you took the the pump out of the algorithm and used it in manual mode. It doesn't, it doesn't relearn because you change your settings. It's already doing something that I don't think any of us understand, I believe on the pod calls it proprietary information, how it's making decisions. So the only real way to make a big change like that is to start over. And people don't want to do that often. Because it's because they've got this idea in their head like, well, it's a learning system. And it took six months to get us this far or three weeks to get us this far. However long it took them. And so they're like, I don't want to start again. I don't want to go through that learning again. But the learning, I'm guessing the second time was much quicker for you. Am I right about that?

Cate 47:59
Yeah, I would say the second time was I not no joke. Like I think within like four days, I felt like we were we were good. It was i i wouldn't have even really noticed that you had we had reset the controller. If if I didn't know it, like it happened so fast. And it was easy. And I think a lot of people are going to be put in that situation. What eventually there's an app, I'm assuming if you switch from a controller to using an app on an iPhone, it's going to start the relearning over again. Is that right?

Scott Benner 48:35
Oh, good point. So at some point, when it's iPhone compatible, you're saying everyone's gonna bail from their controller for the most part, and everybody's gonna get this experience, then?

Cate 48:45
I think so I feel like Jenny said that that was the case, if you switched over to the app, you would have to start the learning

Scott Benner 48:52
over again. So I can't say that with 1,000% certainty, but I think that's right. And, and the point is, though, if they switch and they still take their bad settings with them, they're just gonna, it's just gonna be the same thing over again. But if they learned like you did, Kate, look at you, right?

Cate 49:08
I know, that.

Scott Benner 49:10
They learned like you did. And it is interesting, isn't it? You're like, I should have just known. It. Just it's so simple. In hindsight, isn't it when you're talking about it? Yes. Yeah. Well, you're in it. Yeah, it's not it's not that simple.

Cate 49:23
No, it's not. But now, I definitely do not feel at all nervous about switching to the app at some point. Because if we go in with good settings, I don't think you're even really going to notice, quote, unquote, a learning period because your settings are going to be right.

Scott Benner 49:41
We should I even Oh, I'm sorry. No, no, you finish your thought.

Cate 49:45
When I set up the basil the second time, what I felt like he normally would use in a day. I even like added a little bit more than that, too. So I like maybe more than I even thought would be cool. racked, because I was like, I just I want it to be aggressive and work from that. And that seems to have worked. So you

Scott Benner 50:05
were doing that method while you're cooking. You're like half a cup of butter plus a little more.

Cate 50:10
Yeah. Exactly. Just add a little more.

Scott Benner 50:14
So, see, you're saying, by the way, nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. But yeah, what you're saying was, you're like, Well, let me just give it a little more to work with. Yes, because your thought was it could take it away, but it has trouble adding. Yes. I don't know if that's something I'm allowed to say out loud, legally, or anything like that. But okay,

Cate 50:35
well, I can say it right. I'm not a doctor by any means. But it seems like I was like, Oh, I think he needs about nine units. So I'm gonna just put in 11 and see what. So and that seems to

Scott Benner 50:46
have worked. Well. What's this a one see now on the system?

Cate 50:49
That's a good question, because we haven't had it tested since July. So I'm not sure. Interesting. What he's out now, but I would say for the most part. He I'm just looking at his Dexcom.

Scott Benner 51:02
Do you not have clarity setup on Dexcom? I do

Cate 51:05
have I'm looking at clarity right now. But it doesn't have.

Scott Benner 51:09
It's not. It's not an estimated anyone see it's an estimated something else.

Cate 51:13
But yeah, it says GMI. And I never like when we went for his first a one C test. Well, that I can remember back in April, the GMI said 6.8. And when they tested as a one C they said 6.0. And I was like are you sure? Like?

Scott Benner 51:29
Yeah, I've heard people say that either that estimate comes very close to what they have, or sometimes it doesn't. So yeah, I don't know how to explain that, honestly. Yeah.

Cate 51:39
I mean, he runs about 85% in

Scott Benner 51:42
range, most of the time, what's your range set?

Cate 51:45
His range is set at 70 to one ad. That's excellent. Which, you know, and I know a lot of people are able to run lower than that. I think the thing that I have found, especially with like a young boy is like, he's so unpredictable. Like, he'll be laying on the couch one day, and I'm like, Oh, he's gonna need more insulin, because he's playing fortnight and he's, you know, just hanging around, and then I'll correct him or whatever. And he goes outside and jumps on the trampoline for an hour and then ends up in a low. So it there's that unpredictability of kids where I feel comfortable with him running, you know, a little higher, then maybe he will choose at some point as an adult

Scott Benner 52:27
in case he suddenly decides to play basketball for two hours.

Cate 52:30
Yeah, and then run past the construction gate into the road you never know.

Scott Benner 52:34
Exactly. And he's the older one. So can you imagine? Yeah. All right. Well, this is this is excellent. I'm glad you're you came on to talk about this. I mean, I've seen people online, they're like, I'm gonna restart it. I'm going to restart it. I listened to those episodes. And now I realized that I didn't Baba blah, whatever they think I didn't do. I'm gonna restart it. I'm gonna restart it. I'm always like, I'm not telling you to do that. But I mean, it goes, see what happens. If somebody's gonna do it and tell me so when I realized you did, and I was like, Oh, this will be great.

Cate 53:08
Yeah, I'm not even sure how you would restart it. Like, if you had a current controller. I don't even know how you go about, like,

Scott Benner 53:14
I'm sure there's a reset button somewhere.

Cate 53:16
There's gotta be there probably is. And, you know, I'm not saying you should do that either. But I think naturally, that's going to happen. I mean, a lot of people have iPhones. I think that's one of the benefits is eventually he's going to be able to Bolus from his phone. Like, I definitely think people are going to start over once. That's an option.

Scott Benner 53:34
No, I, I don't think you're wrong at all. Actually, I think you're gonna see a lot of people hear stuff like this or go back and hear by the way, those episodes are episodes 736-730-7738. They're available. In your podcast player. They're available. I think I have a page for them on the website. juicebox podcast.com, forward slash Omni pod five. I actually think Omni pod has them on their website. is amazing. Yeah. Isn't that cool? I think it's Omni pod.com. Although I mean, just go to mind. You don't I mean, like, no worries. Yeah,

Cate 54:10
just go Yeah, you don't even you don't need to plug them.

Scott Benner 54:13
There's no way they put. If you do juicebox, you end up at my site to start with it.

Cate 54:20
And those episodes were so helpful, like, even just listening to them. After we had already been on it. It it's, it still is helpful. Because I think the thing about new technology that makes it so tricky is there's not a lot of resources. So even the endocrinologist is like not really sure what to tell you. And when I was working with Jenny at the time, she, at that time, hadn't tried it yet. So she was, you know, using her experience with what she's been doing with other families to try to help guide us. Yeah, when you don't, you can't like pull out a book and read how to do it. That was I kind of felt left to just I don't know, figure it out, and hope for the best. So once those episodes came out, I felt like I wish I had had those three months early. I'm

Scott Benner 55:07
glad actually, I wish I had them before Arden started off about five. What do you think of that? Yeah. So an ardent used on the pod five for probably nine or 10 weeks, if I'm right around there. And it worked by the time it learned and we, you know, figure things out. It did exactly what I expected. I was like, this is this is it, this is what they that's what they told me it would be and it is. And but she said, I, she's like, I don't want to carry this controller. And I was like, okay, but she just she had context. From loops. She's like, Look, I I like running this from my phone better. And right now, you can't run this from my phone, she does get back to me when this has my my phone is is covered. I was like, okay, so we switched her back over. But it's neat to see. Interesting to see for me that any problems we might have had, you know, and I don't mean problems, like difficulties. I mean, like, you know, life with diabetes, with with loop, they kind of were almost the same anomaly part five, and then vice versa, right. Like, it's, it's the limitation of an algorithm. Like I said, being stupid at some point and not being able to see, like, oh, he had pizza. This isn't just 15 carbs, it's cheese and sausage and stuff like that.

Cate 56:22
Yeah. And I think, you know, I had talked to some people that were, you know, kind of saying some things like, Well, we still have highs and this still happens, or that still happens. And it's like, well, it's not none of this is ever going to be you just, at least for now. Like you turn it on and you do nothing. There's still a lot of input from the user. And you need, you know, if a high happens, you need to correct it. Like you said, it doesn't. It's not a person. And so I think if I had advice would be like going in with the expectation that like, you're still going to have a little bit of work, but you're going to get a great night's sleep. You know, you should take that and run with it. But you're never going to be able to just turn it on and never think about diabetes ever again.

Scott Benner 57:08
Yeah, no, I mean, listen, Arden. Like I said the earlier in the episode Arden's eating at college now, and it's not great. And so yesterday she had, she had something that drove her blood sugar up, and we fought with it and fought with it. Like she fought with it. I was texting her. And then we got like, super aggressive with it over many hours. And then she sat down to do homework where she's very sedentary, but also kind of like, I think she's a little jacked up still from school. You know what I mean? Yep. So over like six hours, we're pressing against food, and then some adrenaline, and maybe some anxiety even. And then she gets hungry again. And boluses doesn't wait long enough. Now we're six or seven hours into this blood sugar. And I'm like Jesus at this all day. And we finally got the drop. And then she goes to bed. I'm thinking like, she's gonna get low. Like she's Yeah, definitely gonna get low. And, you know, like, three in the morning. She's She texted me, she's like, Hey, I just drank a juice. And I did this. Do you think that's enough. And the loop was trying its hardest. It was like take it saw the drop coming. It had been taken basil away for an hour. At that point, it still couldn't stop like a below 60 blood sugar that she had to hit or something. And then, and then, in the course of being tired, I forgot to tell her to like shut off the part where it boluses without food, like so. So the auto Bolus version of lube can micro Bolus with carbs or without carbs. Okay, we're one or the other or both. And so I should have said to her when she corrected I should have said shut off the corrects without carbs. Because what we don't want is for her to finally get her blood sugar back up and for it to go over like 110. And if you go oh, no, and then Bolus, which of course because we didn't shut it off. That's what it did. Talking about an algorithm being dumb, like, right, like we fixed the low, we're good. Don't give her insulin. And then 90, but not even 90 minutes later, an hour or so later, she started getting low again. So you know, is

Cate 59:20
that like, terrifying for you after her like her prom experience?

Scott Benner 59:24
I mean, Kate, it is what it is. Right? So yeah, yeah, I just Yes. I just didn't sleep very much last night. That's all.

Cate 59:32
Well, that's the thing. Like, that's how I've I feel too, like so Grayson goes back and forth between my house and his dad's house and like, even when he's not here, you know, you're still paying attention to those numbers, you know, and it can be a little bit scary, but for the most part, I feel like Omnipod five does a good job overnight of keeping him from getting low unless there's some other thing happening like last week on Tuesday. I had put on a new I changed his pump and his Dexcom sensor, they just that never happens. But they were both due on the same day. And he was reading high, like over 300 I'm like, What in the world is happening? And this was probably like, between eight and 10 ish PM. And sometimes he does get a little bit high with a pump change. So I was like, Okay, well, maybe just the, you know, the pump is getting on and getting insulin going again. And, you know, so I'm correcting him and, and it's, it was getting corrections, like it was definitely like, giving quite a few corrections and like, okay, you know, who must really need it. And then it occurred to me, I'm like, this seems really weird, because he's not usually over 300 At night, so I start finger picking him, you know, every now and again and realize that the sensor was off. And I'm like, oh, no, you know, the sensor was reading a lot higher than what His fingerprints were reading. Yes. So then I'm like, okay, he's definitely maybe had too much insulin, we need to change the sensor. So this is it. Like midnight, we changed the sensor, and I just didn't sleep for like two hours. You know, I'm waiting for the warm up to happen. And sure enough, I was trying to like calm myself down and be like, I'm just overreacting. He's not going to be low. I'm sure it's probably fine. You know. And when he came back on it, too, am, you know, the Dexcom is just screaming low at me. And I run in there and wake them up. And you know, we're giving them juice. And it was like, after that I'm like, Oh, my gosh, is is great as all this technology is like you still have to trust your gut like, yeah, it's still sometimes not right. And that happens well,

Scott Benner 1:01:45
so the other day, we were fighting with a high blood sugar. And I finally stopped and I thought her blood sugar should be lower than this. Yeah, it's, I did everything. I know what I'm like, I know what I'm doing. And I did the thing. And this isn't where the numbers should be. So I'm starting to decide, is this an insulin delivery problem? Because if it isn't, then oh, hey, Arden, test your blood sugar. And, and in that scenario, her blood sugar was like, I mean, we were breaking a high like 200 and her blood sugar was more like 180. And it was telling us she was like, 220. And I was like, that's not right. And, and that's a big difference, because one ad indicates that we're we've got a fall happening from where we were. Right? Yeah, you have to listen. I there. I mean, I'm a little like, you know, I want to make sure everybody understands, like their sponsors, all these companies, but I'm still going to tell you the truth. Like you know, Dexcom is not always going to be perfect. Your pumps not always going to work, right? You know, like nothing, you know, you might test your blood sugar and be like, oh, you know, it's, it's the best that exists right now. And I think that the podcast is supported through advertising through some of the best stuff that exists. So I'm not like, I'm not apologizing for it. I'm just saying you have to use your own common sense still. Yeah, you know, I mean, take anything self driving car, even Lane Assist cars, you see people like, oh, I don't know what happened. I had an accident. The thing usually tells me if I'm gonna get to the lane, I'm like, that's what you're counting on. Like, you know, like, yeah, keep your hands on the wheel look forward. You know, yeah, yeah. And I

Cate 1:03:25
think, you know, I said to grace in the morning, like, but the good news, I think it was Wednesday or Thursday that the Dexcom released the g7. And some other countries, I'm like, soon there's only going to be a half hour warm up and and then I that probably wouldn't have happened, like I would have seen you dropping and known to treat that faster. So like, it's it's always like progressively getting better.

Scott Benner 1:03:50
Yeah. No, it's It's amazing. I just, you know, you have to listen to an episode once in a while with people who have had diabetes for 50 years and hear them talk about not just not just how they started, but the three generations of technology that came afterwards that right now, if you are you with a kid who was diagnosed, you know, 15 months ago, any of their explanations of diabetes is like, Oh, my God, what? Like, that's insane. You know, and you're like, and you're like, Well, when I switch a sensor, when I switch the thing that sticks to his skin that reads this interstitial fluid and tells us if his blood sugar isn't if it's moving, etc. Sometimes there's a warmup period, and it's not always accurate right afterwards.

Cate 1:04:32
Yeah, yeah, we're definitely spoiled for sure. I mean, yeah, and that's why I wanted to try out a new pad five, you know, right away because I knew it was going to create less work. And his even with a little bit of issue with the controller that I probably should have switched sooner. I mean, it's a one C was still 6.1. So, I mean, we really can't complain about that.

Scott Benner 1:04:57
Would you say overall, you're very happy kind They're happy, like, where are you on the on the scale?

Cate 1:05:03
I think we're, we're very happy with it. And, you know, I definitely wouldn't go back to, to doing manual right now I think, especially for a child who, like I said, is unpredictable. I think it's amazing. And you know, I'm curious about looping. And that's something I've read about and maybe we'll explore at some point in time, but for where we are, is early in his diagnosis. Right now, I think he's on the best option, and just it being tubeless. Like he, he refuses to try anything that has a tube, like he said, right away, I'm not doing that. Which I get because he plays sports. And that's what's important to him. And he doesn't want to feel like something's getting in his way. And Omnipod definitely does not get in his way. So

Scott Benner 1:05:52
well, I can tell you, I would I mean Arden's over 18. And I am I am speaking for her, but I don't think she would leave any kind of an automated system. If loop didn't exist right now. She'd be like, give me that Omnipod five back right now. You know, and all I'll work with the controller. I think that I still believe that moving forward, whatever. I don't know, whatever on the pod five morphs into. I do think that eventually, that's what Arden ends up on. Because not that I don't think lupus is terrific. But I mean, there's just work involved in making it run. And there's things you have to know that most people don't know. And she's not going to at some point in her life, you know, be an app developer, so she can wear an insulin pump. I don't see her being that person. You know?

Cate 1:06:42
Yes, I could see that. Yeah, Grace, kind of like that, too. Like, she makes me laugh when she's on because she's kind of like, this is just my life. Like, what do you want me to say about it? You know, and he's kind of like that, too. Like, yesterday, I introduced him. I was really excited. I introduced him to a friend's daughter, who also has diabetes and celiac. And he just was like, shrugged her shoulders like, Yeah, so like, what? She has it too? No big deal. You know? Great. Like, I don't think he would, you know, he doesn't care about an an app or being a developer or whatever, just to keep himself in control. Like he just wants to use you want. Yeah, he wants to be a kid. No,

Scott Benner 1:07:18
no, I hear you. I listen, I think it's terrific. i It's tough, because I assume that people hear Scott tried on the pod five with Arden. And then they switch back and they think something happened. But it's not the case, like Omni pod five, again, did exactly what I thought it was going to do. It acted exactly the way I expected it to. And I thought it was terrific. I thought it worked fantastic. It's different, like, you know, because it's got that, like learning phase to it. And they don't exactly show you everything that's happening with the insulin. So you're guessing sometimes while you're trying to figure it out, but my expectation is, I mean, I don't know, obviously, I don't work there. But my expectation is they're going to keep fine tuning this thing. And the generations will come in common at one point, you probably won't give a crap what it's doing. Because, you know,

Cate 1:08:08
yeah, you want I know, that is it is hard to not be able to like see exactly how much he's getting. Because I get their point. Like, we don't want you to have to think about it. We don't want it to be work. But I think there's a lot of us, like, just out of curiosity, I want to know what his needs are in case, what if I had to do it? Or what if, you know, we had to switch for some reason. And so that's it is tricky to not have all of that information, but at the same time, it's working well enough for us that I'm like, Oh, it's this is fine. Yes. Good

Scott Benner 1:08:41
in that scenario, and based on nothing, anyone has said to me like this is my supposition. It's that the algorithm is making so many decisions and changes that it doesn't translate right back to your Basal is this and your carb ratio. Is that, like, I don't I wonder if that's not the case. Like if what it's doing just doesn't simply translate back to manual care. Does that make sense?

Cate 1:09:07
Yeah, it does. And the only time

Scott Benner 1:09:11
okay, I'm just guessing. But

Cate 1:09:12
yeah, in the only time like that I have realized that we I do switch him over to manual is the activity mode is excellent. Like if he's going to have a friend over and it's going to be playing or like we went we were hiking yesterday and I popped him over to activity mode. And that worked well. But when he's going to he plays travel soccer and he's had a couple of tournaments where even on activity mode, he just was low the whole day. And we just could not keep him up. Like I was just throwing Gatorade at them. And so I talked to the endocrinologist after that and they were like, you know, you might just occasionally either have to switch over and pause insulin during a game or settle really low Basal profile for that type of day and then switch into manual mode just for that day. And we've done that. And that has worked. And you know, those are extremes. It's like a day when he's gonna have he had like four games in 112 hour period, which is crazy.

Scott Benner 1:10:16
Well, I think that a lot of people are going to find just like with regular diabetes care, they're going to find ways to make these things work for them. And in that, if that works for you, then great. And then somebody else might find a different way to do it or, but it's not going to be I mean, we're not up to perfect we're not up to perfection yet in 2022 Give me yeah, we're up to this is pretty freakin amazing. And, and I sleep more. And there's fewer lows. And that's good stuff, you know?

Cate 1:10:46
Yeah. And it's so for him to be able to sleep through the night like as much as I want myself to be able to sleep. I don't. In the first year he was there were days where he would end up in the nurse's office at school napping. Because I would have had to wake them up to treat a low and you know, he's growing. He's at that age where he wants to sleep more and not having to wake him up constantly. is so nice. Yeah, that's been great.

Scott Benner 1:11:11
I'll share this with you last night. While Arden when I called Arden first she called me. And she's like, Hey, and I'm like, What's up? And she asked her questions. She's like, I did this and this, do you think that's enough? And say, oh, it looks like enough. And then I forgot to tell her to shut off the micro Bolus thing. So you know, anyway, yeah. The next time I had to, I texted her a couple times, she did not wake up. So I called her and woke her up. And it's like, I mean, you know, it's four o'clock in the morning, and she's Yeah. My hay yards. I'm like, we're gonna have to drink another juice. And then, you know, okay. And then I hear this, like, I swear to God in my

head. And I felt I felt terrible. While that was happening. No,

Cate 1:12:02
I know. And then she's got to get up and go to class. Like, that's tough.

Scott Benner 1:12:07
Arden also put herself into something. You know, I don't think we've we haven't talked about it a whole lot. But Arden did something that I don't think a lot of people would do. She's a really good student in high school. And if she were to pursue something on the more academic side, she was thinking about pre law. But instead art and went to school to learn how to design clothes. She was yeah, she went to art school to study fashion. Yeah, and she's not a out of the womb, talented artist. So she's got a lot of vision. And she puts things together, but she did not spend her life drawing or painting or working in charcoal. So Arden, like, willfully gave away an academic pursuit that she would have been good at, to go to try to teach herself something artistic. So she's seated at a desk most of the day, you know, learning how to draw. And in as a as a freshman. And it's a I mean, it's, I don't know if I've couched it so that everybody understands correctly. But, you know, this was this was the this was something this is a person in a lane, who said, I'm gonna go way over here into this different lane and see if I can figure this out. That was a pretty big leap. So, you know, on top of all that,

Cate 1:13:36
yeah, yeah, it's not easy. I mean, she didn't pick the thing that would have bet maybe come naturally, but she's gonna work hard at it. And, you know, and I, I always feel bad when, like, after Tuesday night, I mean, we were up most of the night and I said to grace, and I'm like, I could not go to work that morning. Because that only after a night like that, am I exhausted, but like the adrenaline of all that happening? Yeah. Was it takes a toll, you know, and I'm like, I'm in front of kids all day. I'm like, I can't run on on zero sleep. So I called in for the morning and I told him, he could stay home. And he just was like, no, no, I'm not doing that. He refuses to miss school. You know, he just started middle school. He doesn't. He's like I literally while he's having a low blood sugar, he just computer out. He was trying to do his math homework. I'm like, can you not do that right now? Like he he was like, slurring his words. He asked me What's four plus nine? I'm like, buddy, like, now's not a good time to do that.

Scott Benner 1:14:35
No, I know. Do you know? I don't know if she said this or not in her last episode. But after Arden had that seizure, and she was rebounding from it. It was Sunday morning. You know what I mean? Or Saturday morning, it was very early on and she was she started emailing one of her teachers. Oh my god. She was like, Hey, I'm not going to be able to get this thing done. I just had a seizure. And oh, and she was being she thought she was being rude. responsible? Didn't really mean but she was Yeah. Still a little, like, still recovering. Yeah. And the guy, like I emailed her back and he was like, okay, like, are you okay? And you know, like, he was almost saying like, you really shouldn't be worried about this right now.

Cate 1:15:20
Yes, yeah. And they need to hear that, like, I tried to tell him like when you're like your health is the most important thing. And then school like, I appreciate that. You want to do your math homework, but also you probably can't, you know, obviously a four plus nine, it's, it's hard for you right now. It's like, not a good time to do that. Anyway,

Scott Benner 1:15:40
but I take your point, I've seen Arden do the same thing. I've seen her have long nights in high school. And I'd be like, if you want to just skip a first class and sleep a little longer. You can? Yes, like, No, I'm okay. And I'm like, All right. I mean, listen, I got up this morning. Not gonna lie. Yeah, I slept like four hours last night. Oh, God. And I don't feel terrific right now. But I'm working it out. And by the way, I have to get off with you. Because I'm recording again and a half an hour. So Oh, my God. Okay, set up. So this is me, like, I really wanted to talk to you. And I'm thrilled that you came and gave me this, this explanation of how things went for you and for grace and everything. So I just like get you in to the, to the, to the schedule somewhere. Because right now, it's October 2022. Yeah. And if I gave you my scheduling link right now, like I gave you the VIP link, I think right. So if I gave you if I gave you the scheduling link, you would not find a slot until October 2023.

Cate 1:16:36
Yeah, that's insane. Yeah, that's, that's amazing. Well,

Scott Benner 1:16:39
and I wanted this story fresh in your head. So like, I can't wait that long. By the way, man, respect to everybody who contacts me to be on the podcast. And it's not daunted when I send a link and say, Hey, you're not going to find a space for about a year. And they're like, no problem. I always think I always I'm like, thank you so much. It's just so very kind thing everybody does.

Cate 1:17:01
Yeah, I mean, you should feel good about that, like people are willing to wait a year to talk to you. So that's pretty amazing. Oh,

Scott Benner 1:17:07
adults, Kate, who have learned patience, which I am proud to say I have finally learned in my life, are okay with him, like we needed a new refrigerator and I wouldn't the guys like well, I won't be here for two months, I was like, that's fine.

I'd like to thank Omni pod makers of the Omni pod five and the Omni pod dash, and remind you to go to Omni pod.com forward slash juice box. I'd also like to thank us Med, go to us med.com forward slash juice box or call 888-721-1514 to get started today. And of course, the Contour Next One blood glucose meter is available at contour next one.com forward slash juicebox. You may be paying more for test strips right now through your insurance than you would at my link. And of course, let's thank Caitlin for coming on the show today and sharing her story. If you're looking for the diabetes Pro Tip series, go to juicebox podcast.com and hit the menu at the top. Actually, all of the series and the podcasts are now listed there. Don't miss it. And if you're looking for a real supportive place to talk about diabetes, or just watch people talk about it, because sometimes just watching the conversations kind of brings you along with the idea. Anyway, you can do that on my private Facebook group Juicebox Podcast type one diabetes, it's 100%. Free. It has over 30,000 members in IT people just like you adults living with type one. Caregivers of type ones up jeez, a lot of people who have just become pregnant and gotten that gestational stuff. I type twos are in there any kind of diabetes, you can imagine. They're there. They're willing to talk to you. I really think you should check it out. Thank you so much for listening and for supporting the podcast. I'll be back very soon with another episode. So keep checking that app. You are listening in an app? Aren't you like Amazon Music Spotify or Apple podcasts? Please tell me you are out overcast. There's a lot of free. Look, there are a lot of free podcast apps. A lot of them are terrific. They're great places to listen to podcasts and to subscribe or follow. Please don't be listening online. What do you like you my grandma? You don't I mean? Let's get you. Let's get you an app. Alright, we're on your phone, Apple. Android doesn't matter. Don't know where to get one. juicebox podcast.com. At the top, there's links. Go into the Facebook group. Ask them, you can do it. You too, can be in the cell phone age. I'm just kidding. Most of you listen in apps. I just please subscribe or follow that to actually while we're talking. That's actually a huge help to the podcast. Subscribing and following in an app is a major help. only bested by sharing the show with somebody else. If you really want to help the podcast share the show. Subscribe today. AP support the advertisers when you can take the T one dc exchange survey like there's a lot of ways to do it but Subscribe and follow follow and subscribe please.

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