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Scott Benner 0:00
Hello, everyone, welcome to Episode 204 of the Juicebox Podcast. Today I speak with Rachel, she's the mother of a child who's done two artificial pancreas trials, one with Medtronic, and the other with beta bionics, you're going to get to hear about what it's like to be in the trial, what it's like to use the devices, and what she thought of the experiences. This episode of The Juicebox Podcast is sponsored by Dexcom Omni pod dancing for diabetes, and real good foods. I'll tell you more about the sponsors during the show. But you can always go to dexcom.com forward slash juice box, my omnipod.com forward slash juice box dancing the number for diabetes.com or go to real good foods calm. And when you use the code juicebox save 10% on your entire order.

I'm really struggling for an episode title that describes what this is about. And at the same time seems fun and, you know, breezy. I've never thought of anything as being breezy before in my entire life. I have no idea why I just said that. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. And always consult a physician before making changes to your medical plan. Hey, if you're in the Phoenix area on February 23, I'll be speaking at the type one nation event for the jdrf. We're going to be doing a live episode of the Juicebox Podcast. And I'll be doing a little q&a later in the day. I'll be there all day long. Come find me. You need to register. So go to the jdrf Phoenix, Arizona webpage, you'll find it you've got Google type in jdrf, Phoenix, Arizona and then find the type one nation event on February 23rd. Come on out and check out the podcast where we're gonna talk all about being bold with insulin and everything that that means.

Rachel 1:59
Hi, my name is Rachel and my husband TD and I live in Florida. And we have three boys. And our youngest, Jasper is our type one kid.

Scott Benner 2:09
Okay, and Jasper was diagnosed at how old

Rachel 2:12
he was five It was a couple days after his birthday as seems common sometimes I hear a lot of a lot of that couple, you know, right around birthdays. We were camping in Florida tend to camping. So it was pretty hot. And we had gone to these springs where you know sometimes in the winter the manatees come there and it was summer but there's just great huge fish it was a lot of fun and he was drinking a lot and being a lot all that stuff in hindsight but nothing that I picked up on at the time. So it's uh, you know, always always like guilty of looking in hindsight.

Scott Benner 2:52
You feel like it's ridiculous but yeah, that like I should have figured it out kind of feeling but that's you know, you did fine obviously he's doing great as two years later, right?

Unknown Speaker 3:00
Yeah, I'd

Scott Benner 3:02
be more right you're I'm

Rachel 3:04
two and a half about two and a half. Yeah, and he got pretty sick when we got home from camping. I thought oh, he had a stomach bug or something. And you know, I got something sick while we were while we were out but eventually it got to the point he was doing that. That heavy breathing that's really bad. I know now and he was in pretty bad DK we went to the emergency room that night they sent us in the mobile ICU up to the Children's Hospital and he was in the PICU for a few days. Yeah, so

Scott Benner 3:39
you got to the same spot we got to the that you can't ignore this part because it looks like it looks like they just got hit by a car under and they're just grasping for life at that point which they are grasping for life but but you know you get to the point where you're like okay, I can't write up an excuse for why my my kids panting and can't lift up his head.

Rachel 4:00
I know and it was nighttime when that started. We were I had just put him to bed next on the floor next to my bed. I'm just like I keep an eye on him because he had been like kind of up and vomiting all day. And when that started it was about 10 o'clock at night and you know at first I was had just put in a bed I was thinking okay well go to you know a walking because of course it's the weekend so I always the weekend and we'll go to walk in in the morning or something and I was about to lay down and go to sleep also when I heard that breathing start and I was like No worries. You going to the hospital now.

Scott Benner 4:33
Anyway, we broke the third one.

Unknown Speaker 4:35
Yeah,

Scott Benner 4:36
we did so good with the first two but this one's definitely busted. We got to get this

Rachel 4:41
one needs to go in for some maintenance. Yeah, so luckily, the ER doctor that we saw at our local hospitals, I knew right away I think you know, and when he said it, I was like both surprised and not surprised. I didn't really understand what it is. What's gonna, you know mean for our lives, but I was thankful for the staff there and the ER doctor they are and of course the staff at the Children's Hospital. They were great.

Scott Benner 5:09
Well, you know it so I've never really spoken about this before. But I think you just alluded to it once your child is that sick when someone while you're waiting and that time at the hospital between you got there, you don't know what's happening and someone comes and tells you. I don't know about you. It sounds like it sounds like maybe you were in the same space I was in. I was expecting some large bad news. I didn't know what it was when I wasn't expecting someone to come back and be like, Oh, you just forgot to clip our toenails like like you don't mean like, it was gonna be something impactful and big like that much. I knew while I was sitting there. Because I had never seen a person that Ill before. You know, then so that wasn't that ill. months before days ago. Yeah, right or right or two weeks ago even. Are you in the Orlando area join dancing for diabetes for their fourth annual bofur? Cause it's Sunday, January 27. from one to three. You're not the first person who said I was camping. But is it with you people going into tents for

Rachel 6:13
I don't know. I know in a tent, too. It wasn't like we were in an RV or anything. We were in a tent in June in Florida. I don't know what we were thinking. But we went to go to the springs. It was really nice. And the water is so cool. And the springs and it was for his birthday. It was kind of for his birthday because there is this restaurant down by those. The Blue Springs and they have like griddles at the table and you go for pancakes. And that's what they're known for. They like you like cook the pancakes at your table. And of course the kid loves pancakes. So you know that last morning, we were there. We were shoveling in chocolate chip pancakes and syrup and everything. Yeah.

Scott Benner 6:51
Can I ask you something because it sounds like a place you really wanted to go to vacation. And I had this experience where our team was on. We were on vacation when our son was diagnosed. And many years later, we were on a family vacation. So it wasn't just us, the four of us it was extended family and extended families. Like we want to go back there. We had such a good time. And I'm like, I never want to go back there again in my life. But I but I went and I was terribly sad the whole time I was there. Like I couldn't the second time I went back I kind of could not enjoy whatever anyone else saw that was good about that place. Did you? Have you ever gone back or thought about going back?

Rachel 7:27
We have not gone back? I mean, I think I think I could buy now. But I'm not. Yeah, it's not really at the top of my list.

Scott Benner 7:37
Yeah. Right. And it's funny too. Because when we did that. So Arden was diagnosed in 2006. You know, there was no good. There's no good technology back then. So you know, when we went back, we were still struggling with diabetes. It's not like it's not like I was like the guy I am now like, maybe maybe that guy could go back there for vacation. But, you know, back then it's not like we were doing great or anything like that I just was I don't know everything about the placing, like a reminder that Arden had diabetes, we're gonna jump a little faster. Like usually people are pretty accustomed to me continuing the conversation in a very just, you know, natural way. But you're on for something specific. And I don't want to give away too much time. So I guess to ask like, lately, I'll just start like this. Couple years ago, he's diagnosed when you leave the hospital, what do they give you to start with your management.

Rachel 8:26
Um, so in the hospital, they we were doing shots, like with syringes. Um, and but when we left the hospital, they gave us pins. And that was actually really good, because he hated the syringes. He pitched a bit every time. And the part that really broke my heart was when he had it. You know, he was thinking that when we got out of the hospital, it was going to mean that he was better, right? And we didn't have to take us up home with us. Luckily, he adapted to the pins much more easily and did not have a problem with that. And then, you know, I was I had gone back to work and I was talking to some of my co workers and one of my co workers said oh, I have to put you in touch with with my friend, her husband and their two kids are all type one. And you know you need to talk to her so I did a talk to her and she said my biggest piece of advice for you is get index calm and on the pod as soon as

Scott Benner 9:21
you guys did on your own you you ventured out and

Rachel 9:26
and we you know we were still going back to the the CDs for training and stuff at that point. And so we brought it up to them. I said, Okay, I want to Dexcom like when can we get it? And we did we got it within about a month. They didn't give us you know, any pushback on that. That pump they made us wait the six months because of insurance. You know, those are really logical rules. It was, you know, maybe six. By the time he actually was on it about that maybe seven or eight months later.

Scott Benner 9:57
We said something interesting, right? They i mean i never considered Before I don't know why I hadn't, but you said it's a matter of fact, I was like, yeah, how come that's never popped in my head? For a kid, I'm in the hospital, I'm getting special hospital treatments, those hospital treatments aren't going to come home with me. Like this is something we do with the sick place. That's so interesting. And I'm assuming that this syringes just look very medical and medicine where the pens are a little more friendly looking, I guess for the lack of a better word, right. And

Rachel 10:25
yeah, I can't imagine the Poke is all that different. So I think it is kind of a mental thing. And he just, he was always pretty fine with getting shots with the pen.

Scott Benner 10:37
It's so funny. Maybe if you would have started them with the pens in the hospital and switched into the syringes. Maybe you would have just been happy to switch to anything that wasn't

Unknown Speaker 10:44
that wasn't associated with the hospital. Maybe it's so interesting anyway.

Scott Benner 10:47
Okay, so, but in this like, short amount of time, you guys have been on the pod and Dexcom users. Jasper's been on a couple of clinical trials for different closed loop systems. So my first question is, how did you get like, how did you become a person who could be involved with the clinical trials you just apply to do how did how does that work? At the end of this ad, I'm gonna tell you how to save $100,000 I'm incredibly happy to have real good foods as a new sponsor on the podcast. Did you know that all of their foods are low carb grain free, gluten free, keto friendly and diabetic friendly, and that most of the items have as low as three to four grams of carbs per serving? They have chicken crust, pizza enchiladas, cauliflower crust, cauliflower, cauliflower, calm. How do you say that cauliflower, I guess right crust pizza snack by pizzas and poppers the poppers are made. They're like jalapeno poppers with chicken nugget. It's a chicken nugget, jalapeno popper extravaganza three carbs for serving. My mom loves the cauliflower, the cauliflower flour, colleague, dear Lord, this is embarrassing cauliflower pizza. And my wife loves the enchiladas, you got to go to real good foods calm To find out more and to place your order. Now when you do and use the code juice box you save 10% on your order. 10% is a lot. That's how you can save $100,000 all you have to do is order $1 million worth of cauliflower crust pizza, I said it and use the code. And when you do, you'll save $100,000 by a million dollars worth of pizza, save $100,000 with coupon code juice box, real good foods calm. They have great food, some of it I can't say. But all of it you can get 10% off on now if you don't have a million dollars and you spend like 100 then you save 10 bucks. I mean, you know 10% It's a sliding scale situation. Back to the show. cauliflower, cauliflower, cauliflower. You know what the problem is? I know a guy that says cauliflower and it messes me up. But I can say cauliflower.

Rachel 12:54
Yeah, I just started asking because, for me, you know, and I know, this is something I've heard you talk about, like you, you're looking for that sense of control, right? There's so much about diabetes, that's not in your control, that you can't fix it or make it go away for your kid 100%. So you want to control something. And so for me, that was just like, educating myself and learning about the technology and learning about what was out there and the research and everything. So I started reading, I started listening to podcasts, I started, you know, getting on a few, you know, Facebook groups. And through there, I learned about like, for deaf friends for life conference, and we've been to that twice now. And I, you know, just really researching kind of the big companies and following them like Bigfoot and beta bionics and, and learning more about like, nightscout and how that l that works. It helps me feel like I'm doing something, you know, because I just really wanted to do something once once you kind of like, Okay, this is my new normal and you're adjusted to it and you feel like, well, now what do I do? Like, can I quit my job and go work for jdrf? Like, can I do help? Yeah, how do I help? Well, you know what I do? So I am learned about, you know, some of the closed loop systems, hybrid closed loop and, and the different companies that are out there. And I started talking to, you know, when we went to our regular into appointment, I talked to the nurse practitioner and I said, Hey, this is something we're interested in, like, Who's your research person here? Who can I talk to? and find out what trials you know, our hospital is going to participate in and everything. So they gave me the contact the name and they all said, you know, we'll give them your name as well. And I just I called like, the next day I went and call this and I said, Hey, this is you know, my kid is I think he was Fix at the time. And he's on a pump and this, you know, we what's going on, we want to, we want to be involved. So, you know, I just let them know that we were up for it,

Scott Benner 15:10
they were basically like, Look, any cool research you're doing, let me know about it because we might be interested in being involved in and your hospital that's reasonably local to you, I imagine is one of the hospitals who helps with this research. Right? I say, okay, so. So that makes more sense, because it is one of those things that no one like everyone talks about, but even like you heard a couple weeks ago on the pod was on. And one of the questions from people was how do I get involved in trials for your, you know, your closed loop, and they were like, well, you got to go to like, you know, clinical trials.gov, or whatever the link is, and they don't even 100% know how to get in, like how you get involved in it. So it is someone else you think of it is the company doing this thing, and you know, in their kitchen, but it's it's obviously a much bigger operation than that. So you first of all, were lucky enough to be near a hospital, who was involved, you were smart enough to just ask, and they were interested in, in setting you up with it. So. So the first time that you do it, I really want to kind of be walked all through it. So the first one you did was for the Medtronic 670 G. Right?

Rachel 16:16
Yeah. So a couple of months after I had called and put our name down as as being you know, kind of an interested party. And that is part of it, that we have a pretty large children's hospital with a big, you know, endo practice there. And they, they called the, the nurse practitioner called back and said, Hey, well, we have this study coming up. And let's just see if he fits the parameters. You know, as far as I think there are certain requirements as far as like, the age of kids they're looking for and you have to already have been pumping for certain amount of time. And, you know, having a whimsy of in a certain range and basically not have been in the hospital for DK or anything recently. So, you know, if he fit in the parameters, and they said, it's for the Medtronic, 670 G. And this was just before this was before, and I think now it is approved for the younger kids, but at that time, it was only approved for ages 14 and up. So they were doing the trial. Yeah, there.

Scott Benner 17:16
Yeah. Okay. Um, oh, wait, I have a lot of questions. Oh, hold on a second. I got excited there for a second. I made myself laugh. I was like, I get so excited. I forgot what I was gonna say. So the first question is, is is, did this thing happen in a controlled environment? Like you, you don't go home with it? Right? They are you in a hotel? Or in a hospital? Or like, how does that work?

Rachel 17:42
Yeah, so that depends on it can it can depend on the age of the kid and what phase of the trial that they're doing. For this one, we did a week of what they called field trips. So for a week, the kids wore them with a doctor or nurses supervision. But they didn't stay in the hospital, they went to the zoo, they went out just around town to do different life things. They went to the park Yeah, to do stuff, and see how it worked in the real world, but with a doctor or nurse there, you know, to make to watch. So they did that for I forget, it was like four or five days in a row. And then we took it home. So we you know, had to go in for training a couple times. And they showed us how it worked. But honestly, I feel like we got we got less training on it. Then the people who get it through their endless when it's approved and everything because I know they get like the Medtronic reps do a lot of training and everything. Our nurses and doctors were kind of learning it along with us. Yeah, they were they hadn't seen it before, you know, so they were kind of learning it along with us. But they were there for our questions. And there was, you know, Medtronic, a special number, you could call for questions there or to report issues and things like that. But I did also get on some of the Facebook groups for parents of users and stuff, because one of the things about the Medtronic CGM, The Guardian is what it is now with that system. You can't follow it right? It's not like six con, there's no, like Dexcom there's no, there's no follow. So we had to, you know, setup nightscout and stuff like that. So we kind of did that part ourselves. But we did that. And we were on it for I think it was about four to five months that we kept it.

Scott Benner 19:39
Now there wasn't like a doctor living in your house the whole time.

Rachel 19:42
No, no, we had to go in and we had to either go to an appointment or have a call and appointment every two weeks. So we were either going in to basically once a month he had to get blood drawn a few times and or we would You know, just we would have a call with one of the nurses and just go over, you know, the the data and everything and how it's going. And so then they at the end of the trial, we weren't going to be allowed to keep it until it got commercially approved. Or we could return it, or we returned it.

Scott Benner 20:23
That's telling but we'll get to that. How did Jasper see this whole process? It was like a bit of an adventure to him, or did he? Do I mean, how do you sell it to? Like a seven year old? Are you like you're, you're helping people and yourself? Or were you like, hey, they're gonna pet by the way? Do they pay you?

Rachel 20:41
Exactly no accommodation? Yes, he did seen as an adventure. Um, they do get a stipend. Not a lot of money. But it was like, about, you know, $25 for a visit, when you had to come in, it's supposed to cover your gas and your time. But because he had to get blood drawn, I did have to bribe him with some of that money. So he got some Legos out of it, you know, and we did we explained like this, this is something you can try out, it might be something that you love, and even if you don't like it's going to be help other kids who might, who it might be really good for. And so he was all on board. And then I mean, his favorite part was in the beginning when they did those little field trips, because he was with a group of other type one kids, and they got to, you know, go do yeah, go do fun stuff together. So he really liked it.

Scott Benner 21:29
Well, of course, because when you guys take him out, you throw him in a tent, he gets diabetes, so he's happy to go with other people, wherever they're going. Maybe he'll have a better time. Yeah. How, how much effort and time did being in a trial take like, was it a job to you,

Rachel 21:48
um, that the first part was a lot of work, I had to take a few days off of work, because the sometimes the training, some of the trainings for the initial ones especially were like three or four hours, and we didn't you know, the hospital is about a 45 minute drive from us. So I took some time off of work here or there, or my husband did he, my husband actually took him on all of the those field trip days in the beginning, because I had something else booked that week. But so we kind of trade it off. And it was a, you know, a little bit of a time commitment there. Once we were home with it, it wasn't as as much as you know, to kind of go through the rest of the trial and do the follow ups wasn't as intense. But we did have to commit, you know, the time and that's something they tell you up front like this is gonna be this much time and you're gonna have to commit to it and kind of follow through. I mean, you can always end the study on your terms, like if you don't want to do it anymore, but they're definitely Of course looking for people who are hopefully going to follow through. follow through. Yeah. Okay, so

Scott Benner 22:53
let's talk about it like from a PI first, like a wide view, being on a closed loop system. Yay or nay? Is it a thumbs up or a thumbs down? Overall? longtime listeners knew I was gonna put an ad right here. I'll get right to it in and out. On the pod. The only tubeless insulin pump in the world Arden has been using it since she was four years old. She is 14 about to turn 15. We love it. We have amazing success with it. It is tubeless so you can swim or shower without losing access to your insulin. Do you play a sport does your kids play a sport do just not like having something tethered to you. On the pods is the way to go. It is small and convenient and self contained. You use your personal diabetes manager to give yourself insulin it is not connected to you it is wireless, nothing hanging from you anywhere not on your belt, not in your bra. No tubes running through your shirt and down your pants and wherever else tubing goes. tubeless. That's what tubeless means no tubes. Here's the greatest part about Omni pod. They are very willing, not just willing, but happy and excited to send you a free, no obligation demo. No Obligation means you don't have to do anything if you don't want to free means it doesn't cost you any money. You go to my omnipod.com forward slash juice box, you put in a tiny bit of information about yourself and the next thing you know, it shows up in the mail. Then you take it out, look at it, feel it, touch it, hold it, maybe take a selfie with it. And then you try it on and wear it and see what you think. Perhaps you'll agree with me and think this is the greatest thing since sliced bread which is an old saying that I think only old people understand because I guess pulling bread apart with your hands was not that much fun. And maybe you won't, but it'll be up to you. That's the best part you have choice and a free demo is a good way to find out what you think. Miami pod.com forward slash juice box the links to your show notes or Juicebox podcast.com being on a closed loop system yay or nay? Is it a thumbs up or a thumbs down

Unknown Speaker 24:57
overall?

Unknown Speaker 25:01
Well,

Scott Benner 25:02
long pause, I'm gonna have to leave the long pause in during editing. Okay, go Go ahead, like what were you hoping? For? So? Yeah, but let me ask you a question first. Are you allowed to talk about this? I'm not gonna get you in trouble, right?

Rachel 25:14
Yeah, no, I asked. I did ask. I mean, I don't think I know anything proprietary. And I, that was one of the things I asked, you know, in the beginning, like, Am I allowed to talk about this on social media? Can I post on my Facebook that he's in this trial? And they said, Yeah,

Scott Benner 25:30
so it's so funny. Medtronic tries to get on this show once in a while, and I kind of just I'm like, I don't know anything about it. And I don't know how to, like, get involved in the conversation. And now they're going to be on kind of, and you're about to say something not nice. Okay, so maybe I shouldn't ask overall about artificial pancreas. Let's keep it specific to this experience. At the Medtronic 670 G. I have heard from people, I really love it. And I have heard from people who I think have been on other products that they're like, I don't know, it's not for me. And so you come from an experience of Omnipod and Dexcom. Do you think that tainted your experience with the with the 670? g?

Rachel 26:09
In a way, yes, because the same I was, you know, like I said, I had joined some, some groups to, you know, get support from other parents and stuff. And there are people that just raved about it and loved it and everything I did feel at the end, it was not for us, partly because of you know, not having the the ability to follow, we did set up nightscout. But there's, you know, that's out there, its own drawbacks to to that the sensor was accurate. But because of the safety features that it needed to have, in order to operate the closed loop, we were doing so many finger checks, so many. And it wasn't at all like, you know, no calibrations and things like that it was at least three or four calibrations a day. And then sometimes you would just get into what they call the loop was not a good thing, not a good closed loop. But like a stuck loop where it's asking for calibration, and you give it one, it's like, Wait 15 minutes, and you know, all the even if your numbers are actually matching, it is not accepting them. And it really, it can get really frustrating sometimes

Scott Benner 27:18
will you be because both of the idea of this is less, you're trying to make less involvement, not more involved.

Rachel 27:26
Right. And I felt like it was more involvement. Um, it was, you know, it's but I think also, if it's different having it on a kid, versus if you're wearing it yourself, because every time I went to Bolus him or check what his number was on the pump, I had to go and find him and find the pump, you know, unzip it from the pouch, or whatever, and, and do it, you know, it touched the buttons on that are attached by tubes to his body, versus what I was used to, which was like, you know, walking by him with the PDM and being waving it in his general direction.

Unknown Speaker 28:01
So,

Scott Benner 28:02
yeah, I know and, and not only that, I guess, but, you know, with Dexcom if your shit you have the following the share, then you they can be upstairs or downstairs or somewhere out back. And you could just look at your phone and you're like, Okay, this is a bunch of, I thought we were gonna do something right now. But it turns out, everything's fine. And it's that like, look in, you're done. It's over, or, you know, a brief look, and he does need insulin. And then But yeah, I get your point. Like, you have to go find the thing with the number on it. And that thing's attached to him. And, and yeah, no, it's it sounds like a little thing until you do it. Every 15 minutes.

Rachel 28:38
Yeah. And that's why I think if it was you wearing it, as you know, the person in control of of it was also wearing it. It might be different, but you're just looking down. Yeah, first. Yeah.

Scott Benner 28:48
Okay. And so. So the way that and let's be clear, for people who don't know, the Medtronic 670 g isn't approved, it is approved, it's on the market, it's you were doing a trial for under 14. So they're, it's not like this is a this isn't a thing that they're still perfecting, this is a thing that they sell. So this is your experiences with his with what they have. Okay, what about like, at a meal time, that's gonna be what everybody's thinking about, like, was it like, could he just eat those? You know, could you have gone back for chocolate chip pancakes and his blood sugar not spiked? Because you were using the closed loop?

Rachel 29:25
No, you still had to enter carb. And, you know, you still would have so you still were definitely counting carbs and things like that with the Medtronic. And it, you know, did work on it would give him more insulin, you could see the micro boluses you could you know, take a look and see where it was adding insulin if he was going high. But it didn't always keep them from spiking. And one of the things that we've always struggled with in his care is he spikes at night as soon as he falls asleep. can see on this graph, it just shoots up So you can always pinpoint on his craft, like when he felt what time he fell asleep. And it did not control those nighttime spikes either. And sometimes what would be really frustrating is because you could give corrections on it also, you could go in and try to give a correction. But sometimes it would recommend he'd be at like 300. And it would recommend no correction, because it had because the insulin on board it had been micro bolusing him this and, you know, I was like, Yes, but it's not working. He needs more like, you know, it did, it wasn't taking into account, I don't think the this is me guessing I don't know their algorithms, but it didn't feel like it was taking into account the direction of the arrows, you know, so at least that that's how I always feel like if I if I see a an up arrow or double up arrow, I'm going to be adding attacks to that insulin into that correction, like whatever the corrections supposed to be. If there's an up arrow, it's getting, you know, 25%, more something like that.

Scott Benner 30:56
No coining a phrase and arrow tax. I

Rachel 30:59
like an arrow tag. Every people say like a carb tax or really carbee foods, you know, so it's like an arrow tag. And I don't I didn't feel like that was maybe included in the algorithm? I don't really know. But he did still spike it though, you know, at times. And it would be frustrating when you couldn't give a bigger correction. Without you could do it if you take them out of auto mode and go back into manual

Unknown Speaker 31:23
way of that.

Rachel 31:25
Right? Yeah. And you're just wearing a

Scott Benner 31:26
pump. Because here's my thought I'm sitting here thinking, well, auto modes was the stop the 300 blood sugar, but it hasn't, so it didn't work. So now I'll take him out of auto mode. Now I'm back in the same game I was before except now he's on a tube pump. And I can't see his CGM data remotely. So you felt like you went backwards? I guess. Yeah. When it wasn't working? Yeah, I

Rachel 31:47
mean, I'm glad we did it. I'm glad we tried it because it was a good experience. And it was a chance for us to try some different pump that you know, just to have that experience, and maybe we maybe we would have liked it. I know some of the families did keep it at the end of the trial. So definitely was worked for for them. But, um, and I am glad we did it. But we decided we did decide to give it back at the end of the trial.

Scott Benner 32:16
What was the target? For the when it was in the in the auto mode? What was it trying to get his blood sugar to?

Rachel 32:24
it? Did it Really? I don't remember if it told us, but it wasn't like something super low like 100. It was probably like one. I think 140 is what they expected the average to be I don't know if that's the target, but that's what they expected. Like, the average to be Yeah, that's disappointing.

Scott Benner 32:44
It really is. If I think that in any of these systems, if they don't make the target user definable for me, I don't really care, then, you know, like, you know, Arden's, you and I are talking on a school day. But Arden sec. So she's, she's home from school, today, she's sleeping, her blood sugar is like 78. And I'm thrilled, like, like, that's, you know, but you know, she's gonna be about 85. And I think in the next 20 minutes while we're talking, and that would be my goal on that bolusing and 85. Like, don't get me wrong, but I'm happy that that's where she's at. So how much does being unclosed? Like? So here? Let me go back a little bit. Before you start the trial with the Medtronic, your Omnipod and your Dexcom? What was what were your goals for chasseurs blood sugar?

Rachel 33:32
Well, I, you know, I was always working him towards, you know, that like, kind of 120. But I'm at his school, he does, he doesn't have a school nurse, his teacher does all of his care. And she's wonderful. She's amazing. But I never really pushed his high alarm or his, you know, high threshold down too much. Because at school, I didn't want to put too much of a burden on her or have his alarm be going off, you know, too frequently. And that was something I you know, kind of struggled with. Trying to find that balance of like, okay, when is it high enough that I'm going to want him to get a bolus, but not so high that it goes off just because, you know, he just ate lunch or something. So I think at school, it was like, 160. And then you know, at at home, I would lower it, but I wish Dexcom would add that as a feature. Oh, by the way, what would you like having multiple, multiple high threshold like multiple profiles, multiple threshold, like

Scott Benner 34:42
any school day profile and a home? Yeah, wouldn't have to change it back and forth?

Unknown Speaker 34:46
Yeah, there.

Scott Benner 34:47
You know, all these companies that I talked to at least they are very focused on the idea of making things more definable. I actually spoke again to Brett Christiansen from Omni pod the other day and we went Back over that idea that we talked about a couple weeks ago in the in the episode, which by the way, I don't know when you're going to go up people might be like, what's he talking about? It was like, around Episode 200. But where one of the, you know, one of the people who, who sent in a question for Omni pod said, I really think I would love it if I could send a Bolus suggestion to my kid. And then all they had to do was accept it or decline it. You know. And so the idea of like, Mike, maybe my son wouldn't know how to Bolus for lunch, but I would know. And so I can see his Dexcom dad, and I want him to have, you know, a seven unit Bolus where you get 50% of it up front, the other 50% over an hour. And there's a Temp Basal increase a 30% for two hours and whatever like crazy thing you're thinking of, can't I program that send it to him as a suggestion? And instead of him having to type it in, which is the disconnect for children a lot of times,

Rachel 35:54
because they don't know decimal points?

Unknown Speaker 35:57
Right? Yeah.

Scott Benner 35:58
Couldn't he just say, except, like, mommy sent me a bolus, I'm going to accept that. And it would just happen. And when when I saw the, the suggestion from the public, I was like, That's brilliant. And right, and then I sent it to him, and he's like, Wow, that's a good idea. And then we actually followed up and talked about it again. So those kinds of ideas that come from real users, that's the stuff even maybe they can't think of, you know, they're not in our situation. And so, I don't know, I just, it seems to me that what Medtronic has going for it is that it's first it got out the gate first. But it didn't have the opportunity to go through this more thoughtful process of like, Well, what do people think they were just like, we're gonna get this thing out in the world. And don't get me wrong. If you're a person whose blood sugar is, you know, 250 all day, and you just don't know what to do, then this thing would probably be an incredible, you know, improvement for you. And in that, in that situation, that's absolutely fantastic. But even when you tell me that you're shooting for like, 160 at school, last night, Arden's blood sugar, like jumped up out of nowhere, around, excuse me around 1am. And it went up to 170. And in my mind, I was like, Oh, God, like dig. Like, I wasn't like, Oh, 170 that's not bad. I'm gonna go to sleep. Now. I was like, I have to, I'm gonna get this back down now. And so if you're a person who's thinking about like that, then this closed loop is not the specific one in your, in your experience. It's not what you're looking for yet. And so right, the hopes got to be that moving forward, you know, I'm, I'm pinning my hopes on Omnipod, but that they make it user definable, that it has a target, and that their algorithm is shooting for something. I mean, even if, even if we get a system that overnight can keep your blood sugar steady, but during the day needs more involvement, even I think that would be an amazing first step. But, you know, that's just sort of, I don't know how I'm thinking about it. It was, it's very interesting to hear, because Can I ask you, you must have like, on day one, were you? What did you think was gonna happen? Did you were you like, wow, we're gonna strap this gear on his blood sugar is gonna be 95 for the rest of his life. Like is that? Because Don't you know,

Rachel 38:25
it's gonna be higher, I knew it was gonna be, you know, like, probably around 131 40, I was hoping that it would be more steady. And that was hoping that we would be able to sleep through the night, you know, more often. And sometimes we did. Sometimes we did, but not not all the time. And there was definitely I remember one night, very vividly where we were stuck in that calibration loop. And I must have tested him, like 17 times, I think I counted the test strips The next morning, you know, trying to get him back into auto mode before school the next morning so that he could go to school in an auto mode. And it was, so we had some frustrating nights like that, that maybe soured me on, you know, the good part. I could.

Scott Benner 39:15
My husband, he makes a good living. He's very handsome. does come home every day and poo right in the middle of the living room floor, though we're trying to overlook it. But it seems to be what he does. Like if I listen, there's something she can't overlook. And right and, and so I just inadvertently drew a line and said that the Medtronic poops on your floor, but I

Unknown Speaker 39:39
didn't mean we're not saying that. Yeah,

Scott Benner 39:40
no one's saying that. So, okay, so you have that whole experience. It lasted for a few weeks. You gave the metro where they like, Hey, would you like to keep it and you're like, No, thanks.

Unknown Speaker 39:50
Yeah.

Unknown Speaker 39:52
Didn't seem to crush them a little bit when you said

Rachel 39:54
no, no, because it wasn't we never dealt with the Medtronic. People directly. It was our nerd So and he's great. Yeah.

Scott Benner 40:01
How surprised you're not surprised was the nurse when you gave it back?

Rachel 40:06
I don't think he was surprised because I, you know, I reached out to him a lot when we were having different issues, because they helped us report some of the problems that we would have with the sensors or whatever. So, you know, he he knew some of the problems and the frustrations that that I'd had already. And so I don't think he was surprised. But I know, I know of couple of the families kept I don't know exactly how many out of the group, but some gave it back and some Captain Well,

Scott Benner 40:36
again, if you're, you know, if you're a person who is just not capable, haven't found the answer yet to your blood sugar, it's probably a huge benefit. You know what I mean? Like, yeah, I spoke to someone, privately a few weeks ago, who was in their 20s. And their blood sugar was just I, they sent me the graph, it was like, it was like, 6400 6400 6400, say, all day long. Yeah. And they're like, I don't know what, yeah, I don't know what to do. And I said, How long have you had diabetes was like, like, 18 years, I was like, Wait, what? You know, and just it just for, they couldn't figure it out. You know, and that's completely reasonable, by the way, because as I was speaking to them, they were doing the things they were told to do by their doctor. They weren't, they weren't like, ignoring it, they were putting a ton of effort into it. And they just kind of couldn't, they couldn't wrap their head around whatever it was that needed to be done. And I think I talked to them for 40 minutes on the phone, and the next day, you know, never went on like 90 and didn't go over 140. And the next day had a bagel. So you do just need to understand what you're doing and, and once but if you don't, again, if you don't, and you don't find that information somewhere. This is a huge help for you. It's just not it wouldn't be for me, and it doesn't sound like it was for you. Okay, so undaunted, undaunted, Rachel, be a glutton for punishment, I'm gonna say, I'm just guessing, because I really don't know this. The hospital called you again and said, Hey, would you like to be in another trial? Is that what happened?

Rachel 42:13
Yeah, well, right at that, actually, like, while we were giving the Medtronic pump back, they offered us another study, which was actually a low carb study. And they wanted, you know, they offered to get us information on that. And I looked at the information, but that one I decided not to do because at that time, I was a little concerned about Jasper's weight. He hadn't gained weight, the last couple of appointments. So and I, I, but I did talk to him about it. I said, hey, look at this is what you'd have to do, you know, in heat course. He's like, yeah, I want to do it because he's thinking Lego money, right?

Scott Benner 42:50
Maybe there's a Lego set, I need Wait, I'm willing, feel free to sell my hair.

Rachel 42:56
I said, Okay, let's try it at home. We'll eat low carb for a couple of days and see, you know what you think, and I don't think he lasted the day. So it was just going to be I felt like it was going to be a lot of work on my part as well to switch everybody. I mean, I know. Some people love low carb, and that works for them. And that's great. We don't particularly focus on it as a family. And I would have been a big Yeah, it would be a big change. And I did or I would like I said I was a little worried about it his weight at that point. And I said, You know, I don't really want to do that. But I said, keep us in mind. I knew beta bionics was coming up, because I had introduced myself to a Damiano at a for one of the friends for life conferences. You know, he was he was there to give us update and everything and was talking to people on the floor and said, Hi, you know, I I'm from Boston, so I'll use that as like my little intro. You know,

Unknown Speaker 43:56
Rachel, do I have to call

Scott Benner 43:57
this episode creepy, Rachel, I mean,

Rachel 44:00
like, I you know, I kind of wear my way in there. And that So when are you having What are you having trials, clinical trials for the kids, you know, and I, he because you guys can't be

Scott Benner 44:09
worse than the Medtronic. So

Rachel 44:12
I'm actually this was before this was the first friends for life. We were so this was like, two years ago and I was before even the Medtronic trial. But I knew that at some point they were going to have pediatric clinical trials or beta bionics at our hospital because he mentioned our, our hospital as one of the locations. So I told our nurse practitioner, that we don't really want to do the low carb study, but keep us in mind for beta bionics. I thought I was still going to be maybe another year away. But two weeks later, one of the nurses approached us we were at diabetes camp that the ADA puts on and the nurses and the CBE team are usually there. And one of the nurses approached us and said, you know, hey, somebody is going to come by at the end and talk about what trial coming up Do you want to can't tell you what child is but you know, to watch information. So, yeah, we'll be there. And so we spoke to is one of the doctors from the hospital. And you know, she mentioned that I was going to be another closed loop system. She didn't say the name, but I like. Yeah. So we we signed up for that. And that one was, so that was this past summer. Yeah, let

Scott Benner 45:24
me let me say this was back in like June or July of 2018. And I'm actually proud of myself, because I don't plan anything for this podcast. But we actually planned for you not to come on until after you were done with beta bionics. So I started talking to Rachel, back in the summer, it's January now 2019. And, you know, she had had this experience with Medtronic already, but we were like, let's hold off and let you get through this other experience, and do this. So I hope everyone appreciates that. It's like seven months worth of effort went to bring you this information. from Rachel, hopefully, the information about beta bionics will be better than the information to get a little more excited than the Medtronic one. But, but, uh, hey, I'm just saying, like I I, you know, I'm not always not planned out is what I'm trying to get.

Rachel 46:08
You planned it and although you did that email me and you're like, how come you're not scheduled until January? I forget.

Scott Benner 46:15
Okay, so good point. Let's tell them that we planned it upfront. And then once you set yourself into the schedule, I didn't remember why it was. Yeah.

Unknown Speaker 46:25
So credit for work credit.

Scott Benner 46:27
I'm gonna take half credit on this one. Okay. Okay. And, and so tell me a little bit about what beta bionics is. I know, it's, it's Ed, they're up in Boston, they've been working on it forever. It's had a couple of names over the years, I feel like was it I let it one time. I'm about to tell you 100% true story about Dexcom. From just last week, I received an email from a mother of a small child. She showed me the kids graph, his blood sugar's went from 60 to 400. And then back to 60, then up to 400. It was up and down, and up and down. I looked at the graph, she and I spoke for a few minutes, made a couple of adjustments. Three hours later, we had the kids blood sugar, under 202 days later, his blood sugar never went below 70 or over 130. How do I do that? I don't live with them. I don't know them, I couldn't see the food they were eating, which just looking at the data from this child's Dexcom g six continuous glucose monitor. Imagine what you could do, if you had that information for yourself or for your child. You could say, Oh, I put insulin in here, but it didn't react the way I expected it to. So I'm gonna put it in a little sooner next time, maybe I'll put it in a little later, maybe I'll use a little more, maybe I'll use a little less. That's what you can figure out with that data. You listen to the podcast, you will understand the ideas. Now you have to have the information to make those decisions with you go to dexcom.com forward slash juicebox. And get started today. I'm telling you, I wish you could see this graph 6400 6400, then bang down to 200, then bang down to 130. It's not magic, it's not at all. It's just understanding insulin, and having the information The Dexcom provides. I don't think I can strongly enough recommend the Dexcom g six dexcom.com forward slash juice box tried today.

Rachel 48:29
The pump is called the island, I le T and the company is beta bionics. And so they have you know been working on this closed loop and what's unique about their system, which we haven't got to experience yet but we are supposed to do is still coming up because we're we're really not done with the trial yet I'll explain but it's a dual hormone system, meaning that it has a stable glucagon as well as insulin. So the part that we've done already was insulin only. And the part that still coming to be trialed will be the the dual hormone and what we've done so far. So what we did back in July was only a two week trial. So it was sort of like that first week that I talked about with Medtronic where we just did the field trips and we had a doctor there the whole time. We did something like that. But we did it for two weeks, one week where the kids were wearing the eyelet in one week where they were wearing their regular doing their regular care whether that was a pump or MDI, okay. And so they had a great time. This was a really fun group of kids. He made some good friends and the families all you know, it was just like giant big field trips. The nurses everybody was was fantastic, but the purpose of that part of the study wasn't really to get like pretty Flat CGM lines and make it you know perfect blood sugars. In fact, what they were doing is they were really doing everything they could to push the kids out of range. They fed them pizza, they fed the Mexican food. They gave them popsicles and cupcakes. They ran them around on the at the zoo at the skating rink. They gave them tennis lessons. I mean, they were all over the place this days, every day for two weeks. And what they were doing was just seeing if the eyelet would keep them in range or bring them back in range without a lot of interventions from the user. Are they the caregiver? Okay,

Scott Benner 50:36
let me paint a picture first the eye let is there kind of proprietary pump, right. And then is there a CGM is involved? Yes, it's the Dexcom Dexcom CGM. Okay, so their pump Dexcom CGM eyelets tube right.

Unknown Speaker 50:50
eyelid is to, right.

Scott Benner 50:51
I'm picturing in my head. Now. I know I've seen it in the past. And so you guys are two weeks in a row. Again, it's like sleep. It's like camp you don't sleep away at I mean, I heard you say tennis lessons in there. So So okay, they've got you run around. They're trying to they're trying to push the limits of, of what they've got set up for this work better than the Medtronic.

Rachel 51:13
I felt like it did. Yes. Um, I stayed, we didn't wear them. We did. I mean, we did keep them on you know, overnight. And so once they had it, and then they were being followed remotely by the the nurses, and the doctors and the beta bionics team, all that Dexcom data was, was going, you know, to them as well, and you get a phone call if the kids were out of range too much. So I felt like it, it did, because he still, you know, I said before was he had those nighttime spikes that are the bane of our existence, but he still had them. But the eyelet would bring him back in range, without any intervention from us, you can't correct on it, there's no correction feature. So you just let it do its thing, and it would bring him back in range, and then he would stay steady the rest of the night. So at least for that part, there was less effort and intervention. from us, there also is no counting carbs. You just say if you're having like a small, medium, or large meal. Um, and so you know, that was really kind of a revelation. Because we didn't Yeah, we were having dinner one night, and Normally, I would weigh out a lot of his stuff, or fortunate and just try to eyeball things to get, you know, an idea for for the carbs and think you wanted a second serving of watermelon or something. It's like, Oh, I don't, I don't have to weigh this, I don't have to even tell the pump or anything. So to set a little change, like that was, was pretty cool. They, for the purposes of this study, they didn't want us to Pre-Bolus and they didn't want us to announce any snacks or things like that. So I feel like if you were allowed to do those things, you'd get a little bit better results in terms of being in range. But like I said, they were just they were trying to push it, they wanted to see like what what it could do, you know, in real life with kind of messy user interface kind of thing. Like the user, you know, not

Scott Benner 53:15
very little effort into, like making it work just seeing what it accomplishes on its own.

Rachel 53:20
Yeah. Okay. And we were using a deck calm, but they are also running trials, I think with adults on the, let's see implantable one cynthiana existence ever ever since. Yeah.

Scott Benner 53:33
Okay, so how about lows that he experienced in the lows overnight with a bit fuzzy running around like that doing all that stuff is?

Rachel 53:40
How did you get really experienced lows overnight, he would sometimes experience lows. When he was running around, you know, actually doing the the exercise and stuff like that he had a couple not really not too many. And I'll say he does have a good amount of Lowe's in general in real life, and I can attest because we order our juice boxes on Amazon, by the way the K pack is Yeah, so I know we've gone through probably 500 juice boxes in the last year based on you know our order history. What do you What's

Scott Benner 54:15
it what number we call low in your house? Like, where does that just box going?

Rachel 54:21
it well. I mean, his little alarm goes off at 70 as probably give him a juice box if he's heading down from there or in the 60s are down from there. Otherwise, it might just be like a glucose tab. If he's just

Scott Benner 54:36
hanging out there anytime phases to get ahead of that stuff. Do you ever do that?

Rachel 54:41
Um, yeah, if he's now and in real life, when he goes to karate or something like that. Then I'll, I'll do 10 vehicles, but a lot of times it's just he seven and he's,

Scott Benner 54:59
yeah, no, I understood. I'm not judging you. I was just wondering. Yeah, yeah, I just I have a lot of luck with, you know, seeing something coming and tamping the bazel back and getting it to bounce back, you know, with with just that I've eliminated a lot of our juicebox in the last couple of years, being more active with basal rates. So yeah,

Rachel 55:20
that's something I probably want to work,

Scott Benner 55:23
work on a little bit more, you stop being an unpaid employee of every insulin pump company in the world, but, but Okay, so they really pushed him for two weeks, and I'm sorry, and that that beta bionics test that had glucagon in it, or no,

Rachel 55:38
no, it did not, it was insulin only. Um, and it was the gen three. So if you, if anybody's interested in check on the beta bionics website, they have pictures of, you know, the different pumps in there, how it's changed. And so it was a little bit bigger and bulkier. We saw the gen four, they showed it to us, and it's a lot smaller, and it like chart recharges wirelessly and stuff like that. It's pretty cool. But we didn't get to use that one yet. So I think that's, you know, maybe coming, but we use the gen three, and it was insulin only. But that is why I mean, I know some people say well, I don't see the point of like, having this stable glucagon or the but for a little kid who's sometimes their blood sugars are a little bit more unstable just because they are you know, there's there's so many variables. And then it I think it would help for to catch some of those lows, rather, you know, and eliminate some of those, some of those juice boxes.

Scott Benner 56:48
Yeah, of course, no, I don't see how it could hurt, honestly. And so you're so right, what they were testing was their algorithm, because they because they're they're shooting to make a device that not only tries to avoid highs and lows, but if you do get low, can give you a an infusion of this glucagon, like in little bits to kind of nudge you back up again. But that wasn't part of what you were doing yet. And so there Do they give you any feeling for how far from market they feel like they are?

Rachel 57:20
Well, I know that I'm we're scheduled to do the second phase of that study we did in 2019. So we, we should be able we should get that. From what I heard and it's not pot not sure yet, but that that Gen four with the glucagon in as the second phase of the study in in 2019. So I'm going to say not this year, probably maybe next year, you know, usually I think after they get that because I know what the Medtronic after we did that part of the study for the pediatrics, it did get approved for pediatrics pretty quickly after that.

Scott Benner 58:04
You were sort of the end of the of the line to get it.

Rachel 58:06
Yeah, that was like the last thing they were Yeah, they were doing so I would imagine maybe it's similar. But

Scott Benner 58:13
yeah, I mean, I guess if they get the data back, they need I wish just um I'm gonna sound stupid, because I can't think of the name of the company off the top my head, but I've been having some contact with a company who makes who is bringing a stable glucagon to market, one that doesn't have to be constituted. And and you know, and doesn't go bad and that kind of thing. You know, very quickly. I mean, listen, it's, it's a great idea if it works. It's a great idea, you know? Absolutely. There was a time years ago, where all talk of artificial pancreas was that it would make decisions about your blood sugar based on a you know, a CGM. But back then it was, you know, one day when the CGM work well enough, and it would have glucagon in it to bring you back up. If you got low, every conversation from every company included that idea. It wasn't until I don't know what until they either decided that glucagon stability wasn't going to come to market quickly enough. Or maybe they started having better luck with their algorithms, and thought they could control the insulin better and then stay away from lows like that. I don't know what it was exactly, but then a lot of them got away from it move forward. But beta bionics stayed, stayed the course with the idea of glucagon and, and an algorithm so it's cool, I listen options are fantastic. So, you know, let them all do their best and get it out there so we can give it a try. If the beta bionics one was available right now, as you saw it without the glucagon, would you use it over what you have?

Rachel 59:47
I think I think we would because did have the advantage of working with the Dexcom. So there's, you know, that kind of solves some of the issues we had with With the Medtronic system, it is still a tube, two pumps. So there's, you know, definitely some drawbacks to that, as far as amena, as far as I'm concerned, as the parent, Jasper didn't seem to mind it too much, but I think he prefers a little bit not to have a tube pump, I definitely prefer in terms of, you know, not having to disconnect for a bath and swimming and all that stuff. We live in Florida, we go to the beach or the pool a lot. So I, you know, I kind of do prefer not to have to disconnect, but I definitely would try it. And I think that the advantages of having that ability to let go of some of the things like the carb counting, and just like, having to remind him, you know, like, Wait, hold on, you can't eat yet, you know, I need to bless you for that, and things like that, and some of those little everyday things that would be left the burden would be worth it. And I know, that's what, what they want to so I, I would love it. And I'm looking forward to the next part of of the trial, when we get tried again, as as well as you know, other things that are coming, I'm just excited about the competition and the different options that are going to be out there. Everything that's, you know, been announced with Omni pod and tide pools, the loop app, whatever, you know, might come of that when we see that happen. I mean, I'll I'll try whatever you like kid happy, whatever makes his life easier, whatever, you know, makes it a little bit less of something that he's going to have to think about because he's only seven in second grade. And so he really doesn't, you know, probably think about it as much as I do right now, or is it as his dad does? And I'm hoping that you won't have to Yeah,

Scott Benner 1:01:51
no, I Well, first of all, thank you for doing this because it does not sound easy. It sounds like a big time suck, you're not getting paid a bunch of money or anything like that. And it is helping everyone. So I appreciate that, you that you're doing it. And I agree with your sentiment. So I think that, you know, whatever they're all working on. The best they can do is I want to say it and I want to have an option of it. I you know, I really do. I'm it makes me excited for like you said like, What is Omnipod doing right now? And so, you know, what is all that mean? Like what is it they're shooting for? Like? Are they in a super lab somewhere trying to make it user definable and? and a lower? And is their algorithm, you know, better than someone else's outer? Like, I can't wait to find out it none of it can be bad news, the literally mean, so are you and did the so I want to kind of ask you just more from an emotional standpoint, before you saw this stuff. Were you more excited about it than you are now that you've seen it?

Rachel 1:02:51
No, I'm more excited now. Because I'm, we tried it, I know what the capabilities are. And I know that it's only going to improve, I know that there's more companies, you know, more things out there that are going to be good options. So I'm really excited. And I know that we just had New Year's to just turn 2019. But I'm excited for 2020 because that seems to be when everybody's shooting for, you know, keep hearing from whether it's horizon or whatever, that it's going to be 2020. So I'm excited to see what the announcements are this year, see what does come out and you know, what's gonna come out next year? And I'm hopeful that, you know, they start going to be things that, that make our kids lives easier.

Scott Benner 1:03:35
Yeah, no, everybody, absolutely. I agree, I can't wait, like, do more stuff, make it better. You know, I think Dexcom was talking the other day about their, their project that's, you know, making the their sensors much, much smaller. And, you know, I, you know, changing a lot about how it is structurally, I think it's gonna be disposable at some point,

Unknown Speaker 1:03:57
like, you know, yeah, I

Rachel 1:03:58
just saw those pictures with the verily and it's gonna be tiny. So that's, that's awesome. And, you know, I definitely, that the trials, like I'm not, I'm not trying to, you know, put any of the companies down, I think the trials are what we learned from, you know, in, and they're maybe not perfect systems yet. But that's, that's what they're how they're going to improve. That's how they get better with all this feedback. And even when they do get approved on market, like, they're not going to be perfect. We know the, you know, the Dexcom g six rolled out and, and people had issues with getting supplies or you know, with this and that and, and so Dexcom is going to take that and learn from it, I'm sure. And so it always happens with a new product where, you know, it's not going to be the final version of it when it comes out of the gate, if that makes sense. So, I think it's, you know, it has to get out there it has to get used by real people in the real world. And it has to, you know, go through trial by fire and get improved in order to make improvements and for them to have that data,

Scott Benner 1:05:00
especially in a niche market, which I know you don't, people might not think about it that way, because you have diabetes, your kid has diabetes, but there aren't that many people in the world who are who need an insulin pump. So right these are, you know, Medtronic, the bigger one of all them companies, but a lot of these companies are very small. They're small companies, you know, it's Yeah, Dexcom, who's now starting to have financial success didn't until very recently, and it's a smaller company that's growing on the positive, smaller company that's growing. I just, I saw somebody online the other day complaining about a device, I don't it doesn't matter which one it was. And they were like, it should do this, it should do that they shouldn't let this happen. I was like, You should be happy that these people are in this business. Because, yeah, like, this is not a, you know, the whole world's not clamoring to be in the insulin pump game yet, you know, like, like, we're in the CGM market, like be happy that there's somebody out there who thinks that this is a viable business and is trying to make something that's going to help your life. Dancing for diabetes is for those living with the daily reality of type one diabetes. They offer supportive community interactive programs, and creative resources designed to empower you to live a healthy life dancing for diabetes.com. They're also on Facebook and Instagram.

Rachel 1:06:24
Right, because we've lost several pump companies over the last couple years, you know, so, I mean, that it definitely could go the other way where we have less choice, and I'm hoping that instead, we're going to be able to have more, you know, more, right?

Scott Benner 1:06:37
Yeah, What you don't want is for these people who are, you know, are just CEOs and business people trying to make a business for them to just go you know, what, just use your insulin pen. Good luck. Yeah, you know, I'm gonna go make money selling something else, because you're not because they're not selling televisions, like, right, like everybody doesn't have three of them in their house, that's an easy basis to make money with, you know, selling somebody a glucose monitor or an insulin pump. That's a, that's a different game. It's a it's a niche market. And, and beyond that being a niche market, not even everyone in the niche market uses an insulin pump. So it's not like, it's not like there's, you know, 3 million people with type one diabetes, and I get to sell every one of them my product, like I you

Unknown Speaker 1:07:15
know, right.

Scott Benner 1:07:16
It's, I don't know, I'm thrilled that there are people involved in it, that are very much now seem focused on it. They seem, they seem like there are people in the company who have diabetes, and that they have a personal stake in it. You know, like maybe one of the most exciting things chasi ever said, when she was on talking to me from Omnipod is that her dad has diabetes. Like, you know what I mean? Like, she's, I'm sorry for her father, but she's, she's tied to it like she's currently invested. Yeah, not just trying to make money.

Rachel 1:07:46
Right, right. With beta bionics, you know, at Domino started doing this because his son was diagnosed, you know, and that was his goal was to get it, you know, ready for when his son went to college, which he is in college now. And they're, they're so close. So, you know, I know that they a lot. And that's true in a lot of these different companies as people. Oh, yeah. They're

Scott Benner 1:08:07
cool and Bigfoot and like, yeah, big. But, like, again, that's what you want, you want somebody who isn't just going to hit the first like, Roadblock, or the finances aren't going to look kind of shaky, and they're just gonna go out, forget it, you know, they need to want to stay in it for, you know, for good reasons. And those reasons are going to help you and my daughter and your son and a lot of other people. So I'm thrilled by it. I just don't, sometimes I think people are spoiled, like, like, you know, they're just, I think sometimes it would be nice if they all had to boil their urine to find out what their blood sugar.

Rachel 1:08:38
Right, and the glass syringe

Scott Benner 1:08:40
might calm everyone down a little bit when they're like, this doesn't work the way they said, and like, yeah, calm down.

Rachel 1:08:45
It worked the way they said for, you know, you know, it's 13 or 14 days, and you know, for two hours on one day, it stopped working and you're upset, like, this isn't your you don't mean like, it's not, like give that feedback to the company. Don't just complain about it on social media, because the more they get those reports and that feedback of what the issues are, where the pain points are, then that then their research teams are going to focus on that I send those little like, troubleshooting reports Dexcom all the time, you know, because I figure they're gonna want to know, if it's not working. If this, you know, something is an issue, they're gonna want to know. So if we have a pod fail, I'll call Omni pod, not because I necessarily need a new one that day, but because I think that they need that data. You know, in order to improve their product,

Scott Benner 1:09:31
a company needs to know the difference between a one off problem and something that that's happening consistently. And so that they can say alright, we have to like I guess, again, I said they're small companies how we're going to need to divert some of our attention to this issue over here because we're seeing it enough to know that it's an issue and not just one random person calling up being like this thing didn't do what you said it was gonna do. And and it you know, plus, listen, this stuff, you know, one of the goals of all this stuff needs to be ease of use. But there are people you see it online all the time they're complaining, like this thing doesn't do it. And when you're fine with it, or like, You're not even using it correctly, like, How are you, you know, like, you want it to work, you're not even doing it right, like, and then, and then they don't see themselves as a fault. They're like, this thing doesn't work. And it's, it's like if you took a hammer, and tried to screw and you know, a screw in with it, and then you called the hammer company up, you're like, I was trying to screw in a screw with your hammer and it didn't work. This thing's just work. Yeah, I just it's very interesting. The whole thing. So obviously, these company's goals are to make it, you know, failure proof, like so that you can't mess up and look at all the effort that goes into it. I mean, listen to what Rachel has been talking about, like, like these, you know, between the Medtronic and the beta trials, like they got the kids all over the place. They're trying to figure out, how do I make this work better. And it's, it's it absolutely exciting time, if you're not excited by this. I don't even know what to say to you. Because this is this is as cutting edge as diabetes, living with diabetes has ever been. So I'm all jacked up. I can't wait. I can't wait to talk to somebody who came out of the Omnipod trial. Like, I can't wait to hear about that. And whatever else is coming. So if anybody else is out there doing this stuff, let me know. I'd love to hear more about it.

Rachel 1:11:17
And can I add, so one more thing I wanted to mention. Um, we also have done trial net. And so if, if people listening don't know, trial net, is a blood test that screens for the antibodies that indicate you might be at risk for type one, they offer it to the immediate family members have usually a child with type one. So parents or siblings who are over 18 can get screened once I think for free. And then the siblings who are under 18 can get screened every year until they reach 18. So Jesper has two brothers. And when we first heard about trial net, you know, we were a little bit split on it, my husband and I discussed it, and we like do we do this? I thought it'd be good information to have. And I also just like we've been saying, We want to help the research just in general, right? Even if we didn't necessarily need the information, we give them data on he kind of felt like, well, what if, what if they have the antibodies? What do you do with that information? You can't do anything about it. And I hear people say that sometimes like, why would you want to know, because you can't do anything to prevent it. But that's not really true, because there's a lot of research and clinical trials right now going on, focused on delaying the onset, or preventing the onset of type one. And you can only do those if you're one of those people who have the antibodies, but you haven't been you don't have clinical symptoms yet, right? You haven't been diagnosed. So those are the people they're looking for, and they find them through trauma. So I would put a plug out there for people if they have the option to do the trial net. I know right now they're doing one with this drug that they actually do use for other autoimmune diseases already. I think this used like for lupus and rheumatoid arthritis, and they're seeing if it can prevent or delay the disease progression. So it's, there is something you can do if you get results back that you or your kid has the antibodies and that's really the only way they can find those people who are newly are not even diagnosed yet is through that screening and testing. So

Scott Benner 1:13:17
yeah, I'm trying to look real quickly. Trauma has been on the show. And I'm trying to tell you figure out real quick what Episode Two, I have so many episodes, they were on episode 52. And Dr. Greenbaum who runs town that was on to talk about, you know, all the benefits of it. My son has done it. It is really, I mean, there's that argument in there I you're what, you know, the one you just voiced, like, what I rather not know what's coming or no, it's coming. But like you said, Now there's, they think that they can either slow or stop the onset of diabetes, if that's what they're working towards. If you have three kids, and one of them's got genetic markers, it says they're going to have tape on one day. I mean, I'd want to know and get involved in tried to stop it. So look at you, you really are a good person, Rachel. And you don't have much of a Florida accent at all.

Rachel 1:14:07
No, I like I said, I'm from Boston, but I've been in Florida about 20 years now. So I heard it once or twice, but it wasn't.

Scott Benner 1:14:14
Uh, it wasn't very nice. I would love to come down there sometime. And you were talking about friends for life. I always my kids played so much baseball and softball in the summer that I never could get down there. But I think my life is is opening up a little bit where it might allow me to do things during the summer. So

Rachel 1:14:33
yeah, you should come it's really fun. Even my son type one kids enjoy it. They were after we went the first time they were like, are we gonna go back next year? Because it's at Disney to I mean, that's a bonus. So yeah, I mean,

Scott Benner 1:14:46
to be in stuff that attend so anything really, indoors is probably you

Rachel 1:14:49
know, my husband and I both used to work for Disney so they used to go all the time. And so they definitely you know, they're they're not sheltered from that but they they really had a good time and And anybody who doesn't know it can check out the children with diabetes website or just look for friends for life Orlando and get some information. It's a good time. Very cool.

Scott Benner 1:15:09
Hey, so can I ask you before you go? What did you used to do for Disney?

Rachel 1:15:12
I was a zookeeper, an animal keeper at the Disney Animal Kingdom Lodge. Yes, I took care of our giraffe and all our stocking birds over there.

Scott Benner 1:15:23
What What, what like did you do in your life that made you I don't know the right person to take care of a giraffe.

Rachel 1:15:31
Um, I studied I studied biology and wildlife management. And when I moved down to Florida to work for Disney, I actually wanted to work in the stables. You know, they have all the horses there that are in the parades and different things like that. But there weren't there were any openings there. I just started working in like the as kind of an intern in the animal husbandry department. And then I got hired on at at the lodge. So it was it was really fun time.

Scott Benner 1:16:01
So when your husband

Rachel 1:16:03
I met him at Disney. Yeah, he was doing a different job. But I did meet him at Disney

Unknown Speaker 1:16:07
to

Scott Benner 1:16:09
a wonderful world. Okay, so that's really and now neither of you are there anymore.

Rachel 1:16:14
We don't we have a couple of our family members still work there. My brother in law still work there and and my cousin, but

Scott Benner 1:16:21
this is excellent. Do you have your own pet draft? Now?

Rachel 1:16:23
I wish homeowner's association will let me so we just got

Unknown Speaker 1:16:31
a couple of dogs.

Scott Benner 1:16:32
Yeah, we petition. We petition them every year. And they say no, no draft. Sorry. Yeah. That's amazing. Well, I really did you. Do you feel like we covered everything that that we should have?

Rachel 1:16:42
Yeah, absolutely. Excellent. Like that plug in there at the end.

Scott Benner 1:16:45
I really appreciate that. Thank you so much for doing this.

Unknown Speaker 1:16:49
All right. Thank you.

Scott Benner 1:16:55
Thank you so much, Rachel, for coming on and sharing your experiences with the Medtronic and the beta bionics artificial pancreas studies that you participated in with your child. Appreciate it. Let's also take a second to thank Dexcom on the pod dancing for diabetes and real good foods for sponsoring the show. You like the show? They did it. They're paying for it if I you know. I mean, you don't know my life. But this podcast takes up a lot of time. And if I wasn't making some money doing it, my wife would, you know, I don't think she liked it too much. That's why I'm saying there's things to do around the house. When I'm not doing them. It's a little easier to say I'm not doing them because I'm doing the podcast. But hey, look, the podcast, look ads. Right? It's cool. Let me keep going. Please don't yell at me. dexcom.com forward slash juice box, my omnipod.com forward slash juice box dancing the number for diabetes.com. And it real good foods calm you'll save 10% with the offer code juice box. A moment ago. For humor sake. I may have alluded to the fact that I'm scared of my wife and I she is not in any way. I would never say that. It was just I don't I I'm just I'm scared. She's gonna hear this, please. I'm sorry. I'm getting upset. My voice is coming away. I'm fine. It's just a nervous condition. It's got nothing to do with her or the time we spent together. I just you know, I really appreciate that. You guys understand that? I have to take the heads and it's nobody's fault. There's no fault. It's wonderful. Everything's fine.