Scott Benner 2/15/25 Scott Benner 2/15/25

#1434 Small Sip: Are You Stacking Insulin

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Stacking insulin is often misunderstood. If insulin is still needed, it’s not stacking—it’s effective management.

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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, welcome to the sips series.

These foundational strategies were nominated by listeners. They told me, these are the ideas in the podcast that truly made a difference for them. So I distilled them down into short, actionable insights. There's not going to be any fluff or complex jargon, just practical, real world diabetes management that you can start applying today. And I know your time is valuable, so we're keeping these short. Another small sip will come out once a week for the foreseeable future. If you like what you hear, check out the Pro Tip series or the bold beginning series for more. Those series are available in the menu at Juicebox podcast.com and you can find complete lists of all of the series in the featured tab on the private Facebook group. 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 or becoming bold with insulin. The questions you have, I guarantee you there's answers to them in the Juicebox Podcast, and it's all free. You

okay, Jenny, I'm at the office talking to the endocrinologist. Kids just been diagnosed. I've just been diagnosed, and I ask the question if I ate dinner at 7pm and at 7:45pm someone brought out ice cream. Should I Bolus for that too? And my doctor, for some reason, says to me, no, don't do that. You don't want to stack your insulin. Stack

Unknown Speaker 1:55
your insulin. Okay, so not right. So

Scott Benner 2:00
whether they get told incorrectly, where people develop the idea on their own, somebody is going to say to you after being newly diagnosed, don't stack insulin. What do you think of when you because there is a world where you can stack insulin. So what? What is 100% what is that? Stacking

Jennifer Smith, CDE 2:21
insulin is taking insulin that isn't meeting the need for another lovely, I guess, little saying, right? It is insulin that really is kind of being almost given willy nilly, right? You may not think that you're doing it that way, but it is a okay, I've given insulin my blood sugar is still high, or, goodness, the air was going up. Now I'm gonna give more insulin. I think of it as not really having a thoughtful delivery reason,

Scott Benner 2:51
purposeless, except for the fact that you have a high number and you're trying to squash it right, correct, exactly.

Jennifer Smith, CDE 2:57
I mean not stacking insulin or taking insulin for, what you need it for is not stacking, even if you're adding insulin within the defined time period of a three to four hour action window, which is what we call IO B, or insulin on board, is essentially the time frame that we're given to watch for This concept of stacking, right? And if you need the insulin, though, such as, somebody brings brownies over an hour after you finish your lunch and you really want to eat the brownie, do you need insulin for the brownie? 100% you need insulin for the brownie.

Scott Benner 3:33
And here's where the saying that helps people came out of the podcast. It's not stacking. If you need it, that's bolusing, right? That's it. That's the thing that apparently helps people more than anything. Is that phrase, yes. So I don't want you to stack your insulin. That would be bad and wrong, and you're gonna end up low, or like, panicky low later if you do that. But you have to cover the carbs that you take in. That's that you just

Jennifer Smith, CDE 4:00
do sometimes other pieces. This consideration comes up a lot when I start talking to people about why blood sugars might not seem to be responding to that initial amount of insulin, and then they bring in the idea, but if I add more, I'm stacking right? No, you're not. Let's look at the meal content. Is your meal high fat. Is it high protein? Because now you've Bolus for carbohydrates here, and in the end, hours later, you might have an impact from other pieces, other macro nutrients in that meal that are going to require more insulin. Are you adding insulin within the original Bolus? Is time frame of action 100% you are. But if you don't, your blood sugar is going to sit high.

Scott Benner 4:44
If you misunderstand the impact of a food item, like you said, it's got more fat and it's going to extend its time whatever, like you You misunderstand. You count the carbs, or you just count the carbs wrong. You count the carbs. You say, Oh, it's 10, but it was really 20. If you Bolus 7pm eat 10 carbs, you think, Bolus for 10 carbs, 20 minutes later, realize, oh, gosh, that was twice as many carbs as I thought it was. If you put in the rest of the insulin, you're just covering the carbs. You're not stacking insulin, right? It becomes one of those. It's like a boogey man, I think for diabetes, like, right? Like, somebody's going to tell you very early on after you're diagnosed, do not stack insulin. And then that phrase is going to override all your common sense in the future when you're like, I think I don't have enough insulin here, because what does it

Jennifer Smith, CDE 5:33
bring in? It brings in fear, yes, teaching somebody to be afraid of putting in extra of something that might cause, again, a place of fear is brought in with talking about low blood sugar or hypoglycemia, right so, oh my goodness, if I take more insulin right now, it's going to cause a low blood sugar, and I don't want to do that. And again, with today's technology, thankfully, you've got more information to actually be able to stop any detrimental outcome from taking more when you need more. You would

Scott Benner 6:07
think that the new technology would have squashed the better high than low theory, but it hasn't for every clinician, and I'm always interested by what we choose to say, like, better high than low means like, well, I'd rather you have a higher blood sugar than be, you know, like, fighting with a low or passing out, or something that, well, like, okay, I guess I can agree with that. But like, what if we would have just said, like, better stable and in range than low, right? Come that wasn't the thing, but probably because of no CGM. Like, it's easier for me to say that because glucose monitors exist now,

Jennifer Smith, CDE 6:40
I would expect absolutely and I I also think within that realm, there are some people who take it to another place of saying, Okay, I only have these time frames of available eat and Bolus. Within this time frame, I can't do that. I was told I can't take extra insulin. It could be dangerous to take extra so I'm going to eat a breakfast, I'm going to eat a lunch, which is well outside of that action time, and I'm going to eat a dinner, and that's it. Well, goodness, if you're hungry, if you're metabolically up or down, if you're a training athlete, that is not going to be a stretch.

Scott Benner 7:18
I don't know, like I just, I just want to say this one again, right? So just put it here at the end. You can stack insulin. I don't want you to do that, but it's not stacking if you need it, that's bolusing correct, okay? And that is one of those phrases that the feedback comes over and over again, like there's a lot of people's light bulb moments. Yeah. So awesome. I appreciate you talking about

Unknown Speaker 7:39
with me, of course,

Scott Benner 7:50
if you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode? Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast if you're ready to level up your diabetes care. The Diabetes Pro Tip series from the Juicebox Podcast focuses on simple strategies for living well with type one. The Pro Tip episodes contain easy to understand concepts that will increase your knowledge of how insulin works. And so much more, my daughter has had an A, 1c, between five, two and six, four, since 2014 with zero diet restrictions, and some of those years include her in college. This information works for children, adults and for the newly diagnosed, and for those who have been struggling for years, go to Juicebox podcast.com and click on diabetes pro tip in the menu, or head over to Episode 1000 of the Juicebox Podcast to get started today with the episode newly diagnosed. We're starting over and then continue right on to Episode 1025 that's the entire Pro Tip series. Episode, 1000 to 1025 i.

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Scott Benner 2/14/25 Scott Benner 2/14/25

#1433 Fox in the Loop House: Part 4

Kenny is back!

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Scott Benner 0:00
Hello friends, and welcome back to another episode of The Juicebox Podcast.

It took some time, but I got Kenny Fox to come back. If you're not familiar with Kenny, go look for Fox in the loop house part one, two and three. Those are episodes 312, 313, and 420, if you're interested in looping, you should listen to the fox in the loop House series straight through. Today, Kenny and I are going to talk about night scout and data tracking. We're going to talk about basal adjustments and insulin on board Kenny's new coaching service, understanding loop predictions and adapting to stress and daily routine changes. Please don't forget 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 or becoming bold with insulin. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com when you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about mis Bolus is or miscalculated carbs, thanks to meal detection technology and automatic correction doses, learn more and get started today at Medtronic diabetes.com/juice box. Today's podcast is sponsored by us Med, US med.com/juice box. You can get your diabetes supplies from the same place that we do. And I'm talking about Dexcom, libre, Omnipod, tandem, and so much more us, med.com/juice box. Or call 888-721-1514, if you're looking for community around type one diabetes, check out the Juicebox Podcast, private Facebook group. Juice box podcast, type one diabetes. But everybody is welcome. Type one type two gestational loved ones. It doesn't matter to me if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox Podcast, type one diabetes on Facebook. Ken, you are on three of maybe the more popular episodes in the podcast about algorithm pumps. So let me see, do you know the episode numbers, or should I look for them?

Kenny Fox 2:52
I remember they're, like, almost a year apart. I remember that part. I just looked at the numbers this morning. They're in the hundreds, like 300 or something. Wow. So

Scott Benner 3:01
you were on originally, episode 312, Fox in the loop house part one. We did part two. Episode 313, so it was just one after the other. Was probably just a thing. I split up into two, but then we had you back again on episode 420, for Fox and the loop house part three. Your last name is Fox, and we talked about loop, and for some reason, that's the title that came to me. So there's no other reason why they're called that, but they're very popular, because I think not only do they do a good job of going through what loop is and how you use it and how I used it back then. But also, because a lot of that information, I think it grows people's understanding just of how algorithms work in general. And you can apply that to honestly, if you're on control IQ or, you know, Medtronic or omnipotent, like wherever you're finding your algorithms at, you know, I don't know what else is there now. Twist is coming, and I let. No, I let. I guess you can't really do much with but, you know, like all these different algorithms that are out there, the way they work informs you about how you think about insulin, and then you can kind of reverse engineer what you've learned and put it back into your management I think that's where, like, the leveling up comes from. Do you agree?

Kenny Fox 4:20
Yeah. I mean, we tried the control IQ for six weeks, we had a pump given to us, and we tried it out, and we got similar results to loop using some of the same techniques and the base understanding that comes with using a system like loop, and you can definitely translate major pieces of this to other systems. I've helped a few friends on Omnipod five, and just adding things like knowing that fat and protein needs some insulin and carbs can really help balance out that total daily dose piece of the algorithm sometimes people end up staying higher just because they're not bolusing enough, and therefore it thinks they need to hire basal. And you can fix that by just making sure. You dose more, and you dose more by adding in the fat and proteins. It helps pretty much in any system that we've used before. And the twist one will be using a form of loop when it comes out.

Scott Benner 5:10
Oh, that's awesome. See, I just learned something. Though it's awesome using tide pool. Tide Pool loop. That's excellent. Okay, great. Anyway, so listen, even if you're not a looper, my point is, check this out if you're using trio. If you're using, I mean, what else is there that's DIY at this point,

Kenny Fox 5:24
Android, APS, trio, the main ones, yeah,

Scott Benner 5:29
loop. Or one of the, one of the systems that you can get retail. I think the information here is going to help you in one way or the other. So let's just jump right in. Tell me where you want to start.

Kenny Fox 5:38
I guess I'll start a little bit with me. I been in the DIY community for a while, helping out, doing videos on loop and learn and on the podcast with you, and just helping people in the Facebook groups. And late last year, I got laid off and decided I wanted to take my coaching skills. I was doing financial coaching, budget coaching for couples, and that was fun, but it was kind of a little side hobby, and I thought I could probably do this and teach people how to use loop better and do it all the time, and help more people that way. So that's what I'm trying to do. We're starting off early 2025 with a course on how to change your settings, how to know how to read the data and know how to change your settings and loop. And we'll go from there, see how it goes. Help

Scott Benner 6:19
people your web address because I want you to say it, because I'm I'm delighted by it,

Kenny Fox 6:23
because a lot of people reach out to me, saying, Hey, listen to your episodes on the podcast. You know the podcast is Juicebox Podcast. In case you don't know, I went ahead and just leaned into Fox in the loop house. So my website is Fox in the loop house. Calm. You can find me Fox in the loop house on Facebook and Instagram and YouTube, so just lean into that identity piece of it, since that's where a lot of people find me. So I thought I'd just go with it, and you told me I could years ago when I mentioned it. So you made my

Scott Benner 6:51
day when you told me that was the URL. I have to say, it's like, oh, that dumb thing. I thought up, I've reshaped Kenny's life with it. I

Kenny Fox 6:58
thought I was a little dumb too, but I couldn't think of anything better, and that's how people know me, plus it has my name in it. And so it means I don't have to worry about, where do I slip my name in, or making a whole LLC, or whatever I need to do for that, because my last name's in there. Well,

Scott Benner 7:11
the way I have to tell you, the way I think it occurred to me back in when I when I thought of the title, was that to me, like the DIY algorithms, you know, are this not siloed, but a thing that not many people knew about? So I thought of it as almost the club. And then I was like, oh, and Kenny's like, he's going into that house and, like, showing it to people. And then, I don't know, then your name was Fox. And I was like, this is good enough. I like this. I like, I like the idea of you, like going into this place. It probably seems secretive to other people. It isn't, but maybe it feels like unapproachable, and you were just in there going, like, look, here's all the eggs. Let me show you. You can just have them too.

Kenny Fox 7:49
And back then, it was a little chaotic. It's definitely matured, you know, the loop and learn groups. Got a whole group of volunteers, and so sure, we're funneling information a lot easier to people, but definitely back then, it was a little chaotic. So little fox and the hen house sort of play on words. Works out how it

Scott Benner 8:03
felt to me. So, oh, so that's awesome. Okay, so let me ask before we jump right in, doing financial coaching for people, there must be things that you've learned about how people learn and how they're motivated that you're moving over to this. Am I wrong?

Kenny Fox 8:17
No, I mean, part of it is just communication. When I was doing the coaching, I tried to make sure that, like, both the husband and wife, for example, if it was they were married, were both showing up because they're both trying to engage in goals, where you're going stuff you're trying to achieve, and putting people on the same page, even if one person that wasn't totally bought into it, at least they heard the words, had a common vocabulary to like work through problems together, and so I thought about doing the same thing for loop coaching, making sure that you know both parents are there, or that the type one is there, maybe with their spouse. I haven't carried that over, but it has been good to reinforce, or I'm finding that people reinforce the same language and words that I'm giving them with their kid, if they're old enough to start taking it in, and so they're picking it up on their own. It's been good that way. That's

Scott Benner 9:06
excellent. I'm just it's interesting to see how people's careers build and and sometimes lead to similar but different things. So this is the

Kenny Fox 9:13
well, knowing that you need to acknowledge the emotional side of things too. I'm a little more technical and just trying to solve the problem, but trying to make sure you they people feel heard, and that they can express their concerns, that you can empathize with them, gets you a lot further. And they and they, they listen, they take stuff in better. Yeah, so it works all the way around. Cool. So where

Scott Benner 9:34
are we going to start? We'll start with night scout. Diabetes comes with a lot of things to remember. So it's nice when someone takes something off of your plate. Us. Med has done that for us. When it's time for Arden supplies to be refreshed, we get an email rolls up and in your inbox says, Hi, Arden, this is your friendly reorder email from us med. You open up the email. It's a big button that says, Click here to reorder. It, and you're done. Finally, somebody taking away a responsibility instead of adding one. US med has done that for us. An email arrives, we click on a link, and the next thing you know, your products are at the front door. That simple, US med.com/juice, box, or call 888-721-1514, I never have to wonder if Arden has enough supplies. I click on one link, I open up a box, I put this stuff in the drawer, and we're done. Us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and the Dexcom g7 they accept Medicare nationwide, over 800 private insurers, and all you have to do to get started is call 888-721-1514. Or go to my link, us, med.com/juice, box. Using that number or my link helps to support the production of the juice box podcast. Today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings, without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox

Kenny Fox 12:07
uh, yeah, I'll just kind of mostly step through the modules of my course at a high level, and so people can get an idea of what we're going to cover. And it's a lot of this stuff. I'm not worried about keeping the information locked up behind my portal. The information is free. The DIY system is free and open source. If someone wants the help to be with me or my community, then that's when they can show up. So we'll cover, you know, most of what I cover here, if it's helpful and it helps people, then that's great, well, but usually, yeah, I just kind of call it Module Zero, as we kind of start with night Scout, because we're going to be looking at that a lot. It's your dashboard, it's your view into all the data, especially as a caregiver, but loop only holds only shows you about six hours of information in the past, so you can't always go back and, you know, look at how the morning went, or your overnight basal was by the time you're off work or school's over or whatever. So night scouts, where we're going to live, there's just a few things. I don't take a lot of time to teach people how to use night scout. We kind of just do it as we go, and it's integrated into the process because through repetition. But there's a couple annoyances I'd like to highlight for people that people don't like about night scout. One, it's busy, and can't really fix that, because there's a lot of data that's important. But what we can do is make sure that some of your like pills, a little squares, little nuggets of information on the screen are turned off that you don't need, and then make sure there's stuff that is on that you do need. Some people use their night scout and don't have the prediction visible or the basal rates visible, so they're missing out really important pieces of information when they're doing it. So we just go through the settings and figure out that one. But there is this one cool setting that if you're using night Scout Pro. It's built in otherwise, if you have access to your little configuration variables that you have to go in and tweak. There's this one called device status, one word, underscore, days. And what that does is, on that first screen, that dashboard of night Scout, you can actually see two days worth of information on the lower graph, and it shows you, like a little snippet, you know, the bigger version on top. It's like a smaller section of time. But what you do is you scroll backwards and you click and drag on that bottom section of night scout. You can only go back 24 hours before you lose the kind of prediction information, all the details. But if you add this variable, device status, underscore days, and change it to two, you get two days of information there. Well, 48 hours. That's really helpful. If you know you're trying to figure out there's a pattern, and I feel like most patterns you would look at are within the last two to three days. So if you can access most information, you pretty much don't need to leave that front screen of night Scout, which people appreciate, because while the reports are useful, they don't want to really want to go digging into it. They just want to pull it up and take a look at it. So okay, that's one of them, and then the other one, the other big one, is the alarms. It makes a nice, loud, annoying alarm that's hard to tune out in night Scout, but most people have Dexcom follow, or they'll using the loop follow app or something else that has alarms, and they just don't need them. So they might remember to go into the menu on the side and check all the. Boxes and turn them off. But then you got to do it. Every time you are on a new device or whatever, it goes off. When you're in a meeting. You have it up at your computer at work or whatever. If you go into your configuration variables, you can find all the things that say alarm, and it's usually like a ON, OFF or true, false option. You can go turn those off. I walk through those, I'm going to put out a little cheat sheet for how to just buzz through and turn these things off on my website at some point, so everyone can go look at it, but yeah, just turn off the alarms by default. And that way, if you want them on, you can turn them on if you want them on for the school nurse, and you can talk to them and have them turn them on, but at least they're not on all the time. And you pull up night scout on your phone, and all of a sudden there's an alarm going off when you're in the middle of a meeting or whatever. So that's kind of the big stuff.

Scott Benner 15:40
How do you turn off that crazy music that plays when it loses its signal? Yeah, that's the

Kenny Fox 15:44
alarm. So there's a setting in the back that's time ago or time ago, urgent and time ago worn. So if you find those, if they're not defined in your Heroku, for example, you can just go into the configuration variables and set those to false. I can, I'll put the I'll add those to the list as well. Those are the sneaky ones that you can't turn off from the main menu screen in night Scout, you only turn off, like the highs and lows, but you can turn off. There's a few more that are hidden in there, like when loop is not looping, or and a few others. So yeah, that annoying music is those alarms. And I think most people are already have alarm fatigue, and they don't need it startling them when it turns on after like, 10 seconds of loading the screen. So that's that's a big one. And then the last couple things, just make sure you can see in night Scout that I think is really cool since we talked last four years ago, now that when you start a new pod, or when you start a new Sensor Loop, picks up on that and updates this little section called the cage, or cannula age and sage sensor age, and it updates that in night scout. So now you can see how old the pump is and how old the sensor is, which is super helpful, because you as the caregiver don't have that information readily available, index con follow or anywhere else. So I find it useful. When you're looking at maybe sticky highs, you say, well, How old's the pod? If the pods getting to be closer to that three days, then you know we're increasing our chances that there's a problem there. Or just, uh, just for planning for the rest of the day, like, do we need to change the pod or the sensor before Tesla goes to school or whatever? So that information is helpful to have, and now it doesn't require manual logging, which I used to do, but now you just use loop, and as you change those devices, it uploads this night Scout, and it's nice and available for you. That's a really practical one for people. Cage

Scott Benner 17:20
and sage are big parts of how I use night Scout, and they're a huge help with me, especially when Arden's not living here, and you can say to her, hey, look, I don't know if you saw this or not, because I know you're busy and everything, but your pod's going to expire at five in the morning. Please don't go to bed with that pod on. And you know, there's been times where she said, Okay, great, I'll, I'll do it before I go to bed. And there's times when she goes, I'm gonna get up at five in the morning and change my pot. That's my plan. And I'm like, Okay, fine, you know. But at least you can kind of remember and remind, I guess, a little bit. But your point about using it for, hey, why is this not working all of a sudden? Like, I do it all the time, you know? I'm like, the Bolus happened. Nothing worked. I don't know why. Oh, look at this. This pod's two hours from being shot like that kind of thing. Or I don't trust this number, all of a sudden, and I can't see her Dexcom, so I go look and, oh, the sensor has been on for nine and a half days, or something like that. During COVID,

Kenny Fox 18:12
my wife's grandmother was living with us. She couldn't go anywhere in other facilities or whatever, and she has type one. I never really got good at managing it. And she ended up kind of forgetting to take her insulin over time and almost in DKA. And we sort of fixed that at home, got her drink water, and then from there, kind of took her management over and added, slapped a Dexcom on her, slapped a pod and loop on her, real fast, and then got those devices covered through her insurance, and had her looping. And at some point she ended up leaving our house too. So that became even more critical to know, like, when do the devices need to be changed? We found a nice place that would, without charging us extra, would take care of changing the hardware. They were super willing to do that. And so we just night scout was important to be able to track when those things changed. And so having those pills was pretty was pretty critical for that. So definitely nice for a caregiver perspective, for sure,

Scott Benner 19:02
and I realized we didn't do this. But if you are listening and you're like, Oh, this is all exciting. I don't know what night scout is. It's an app that I have on my phone, for example, and it just lets me see in real time, Arden, who's using trio, not loop, but in real time, it lets me see where she Bolus is how many carbs she put in the things that Kenny just discussed. It lets me see when her basal gets ramped up or taken down, etc. It's pretty awesome. Yeah, it

Kenny Fox 19:30
is intended as like a dashboard for caregivers, right? And we used it when Tessa was on shots at the beginning. And we would log all the shots and stuff in an app, and open another open source app, and it would push it up to night Scout so I could see when my wife was giving injections or Tessa was eating. I mean, sometimes we forget to enter it, but it was helpful for me to learn from afar while I was at work, just to see all that data laid out. And so it's really intended just for logging data, and yeah, now it's a dashboard you can use for having automated. Stuff like loop and trio upload data to it so you can see data in real time, which, you know, I take for granted after almost six years of using it, that people don't have access to, that you can't get the T connect data or the Omnipod data in real time to be able to see, did your kid Bolus and how much and what did they enter? Did they, you know, enter too much, or whatever that is. Yeah, you can make a lot of decisions on that. I have to

Scott Benner 20:23
admit, it's not a thing I look out every day, but when I need it, that it's there is irreplaceable, honestly. So, yeah,

Kenny Fox 20:32
awesome. Yeah, that's it for night scale, I mean. And then after we kind of get that settled so everyone can see what they need to see, and I don't have to worry about them saying, Well, where is that we're all set up. Then we start getting into the basics. Rather than go over the kind of core of the prediction pieces, which I do cover later, actually just start with basal. Because people want actionable stuff. They want to make sure that their settings are right. And as you've discussed multiple times, the basal is foundational right if you don't, if you don't build your diabetes house real well, which is on the foundation of basal then kind of everything is suspect, everything's out of control. Loop gives us a lot of data. I covered this in our one of our other episodes, so feel free to go back and listen to it, you know, for extra information. But we do cover how you can see when your basal is probably too strong or too weak in loop, because it gives you all this information to be able to see where it is. Using insulin on board a while ago when Arden was looping and we helped dial in some crazy basal changes for Arden basal information, I had a very similar think when we were working together, talking a little bit Arden's needs were dropping. And there's another kid I'm helping right now, who's 11, and he just went through, like, a big growth spurt, like all at once. There's no wouldn't matter what system he was on, it couldn't have he just had his he has basal rates increase like a half a unit now, more than half a nice coming up on doubling his basal rates all in about 48 to 72 hours. Just wild. But the mom's saying, Well, what do I do? And I can go back and look at this information. We'll talk about how to get it and give a good guess about where to set the basal. I mean, I wouldn't normally like nudge basal more than, you know, point oh, five or point one on the pod. We only had to change it, like point 4.5 in a single day, which once we did that went from cruising in the three hundreds and stressed and bolusing all the time just trying to get them to everything settling down to the 90s again, so within a few hours. So it's a definitely useful information.

Scott Benner 22:26
How do you do that? How do you look at the information and say, Hey, normally I would turn this dial very slightly to be careful, but in this situation, I feel very comfortable moving at this because what? Because I saw,

Kenny Fox 22:38
yeah. So the iob overnight is one of them. And I think one of those things that's helpful is that I try to keep a pretty simple basal profile. I on the podcast before, we were using one basal rate. And I, you know, I've come to learn that that is a little more common with the younger kids, but also more common with, like, mild honeymoon. We were out of like, major honeymoon, for sure, but having slight variations in your basal rates. Totally fine. People shouldn't feel bad about that. I used to be a pretty big proponent of one, just to kind of get people to simplify. And I think keeping this simple as you can is good. And so when things change, I just kind of changed all so that's the first thing I do. Is pro Tesla. She's got, I'll explain this a little bit, but I have some like normal stuff, but we've only got one rate, maybe two rate, maybe the night and a day rate. And you kind of play around with that looks like. But when I find a pattern that works for Tessa, it's about a point one an hour difference. She uses, like a one and a half units an hour. It's a lot, but so like, a 10 20% difference or something between night and day for her has been working in the last few years. And so when I look at this data, I'm going to talk about, I'm just to make the change everywhere. All the rates change when I look at it overnight. So here's how I do it. In loop, it's modeling insulin pretty well six hours, nice even like small decay rate. It's got a pretty accurate representation based on the like, if you open up the paper inside your insulin vial and actually look at the graphs in there, it shows the insulin last six hours, and loop uses a pretty close line to that. And so what I'll do is I'll just grab the bottom section of night, scout the lower graph, and just slide backwards and look at the history, and we just look at, you know, how the night went, especially, you know, 345, AM, multiple hours away from food or anything else you might have messed up with the fat and protein and whatnot from dinner, and see where everything settles out. And look at how much insulin on board there is as you go across that line. If you're pretty flat and have consistently, like, positive insulin on board or negative instant on board, you'll find that there's generally around the same number kind of across that line. For example, the kid I was helping with earlier had over a unit on board just and he's like, high at like, 170 and just constantly over a unit, and whenever it would get under that, his blood sugar would go up. And so what we do is we can use that information to say, Okay, well, obviously the basal is not right. So how much insulin is this? How much more we have to move the basal up to make this? Instead of one unit on board, how about zero units on board? Like be nice and flat and level. So. And so we just take the kind of average iob in units and divide it by the length of time that insulin lasts, which is the DIA duration of insulin action at six in loop. So we just take the iob and you divide it by six. So an easy example is point three units of insulin on board that's keeping you level, but usually probably a little higher than your correction range. Divide that by six, and you get a unit per hour. You just divided units by hours, and so you get a point, oh, five unit per hour, basal rate change that you should make. And if you make that change, that point three units will actually turn into zero insulin on board, and you'll be level and probably more likely down into your range. And if you're seeing negative, you just add the negative in front of the answer there, and that means you need to decrease your basal rates by point oh, five units per hour. It works out pretty well in the case of this kid with like, one 1.2 ish insulin on board was at a point two change in insulin needs. So that's, I mean, that's a pretty dramatic change that would take some guts to modify without a lot of experience, but instead, you can supplement that experience with math. So yeah, point two unit per hour basal change. So we bumped his basal rate up, and then Bolus a little heavy, because the insulin on board isn't real, right? The insulin on board says he's got a unit, but that's really should be, you know, your new kind of zero set point. So you Bolus little extra to get him down. And as Luke turns the basal off to get him down, the numbers sort of like fix themselves, the iob becomes a little more accurate. And then, you know, within a couple hours, he's down in the 90s, instead of, like the 170s when he woke up. So then you can go about the rest of your day with more confidence. And in his case, he kept needing more and more insulin as the day progressed. And then you could see it in the nighttime numbers for sure. And then you get a nice number again. You make the modification increase the basal rates, and then the next and the rest of the day is, you know, mostly good till the evening, when he's starting to need more again. And so he did his three days in a row. For Tessa, it's usually like kind of a day, and then hold that for a day or two. And then we're done times a week. And then, you know, maybe it'll change back down or up, but you get some consistency. Sometimes you gotta change it every day. Sometimes it's, you know, a week or two without having to make a whole lot of change. But that's basically the math that gives you. It's the only real objective thing you get with the data. The rest is kind of art. You're gonna be tweaking carb ratios and ISF and dealing with activity and counting food is difficult, but the basal stuff is pretty objective. When you look at that information. Do you work with adults ever? Yeah, I've had a couple of adults that I've helped this year trying to figure out my course content. They've had a lot of, lot of fun, lot of learning, and it's been great. Naturally, the caregivers ended up coming to me, because, similar to you, we're parents, that's what we do, and we talk from a perspective without trying, because that's what, that's our lived experience. But yeah, I get I get both.

Scott Benner 27:43
Now you were just talking about how to make this adjustment. Are you planning on just taking people for coursework, or are you going to do a la carte too? Can someone get a hold of you and just say, like everything's upside down here? I don't know. Why? Could you just figure it out and tell me? Why? Do

Kenny Fox 27:58
a quick look? Yeah, I've done that. That's kind of been my MO. Throughout my time in the DIY space has been someone asking for a lot of help and to get all the information and context. You know, maybe they'll, they'll reach out to me, or I'll say, Hey, if you want, you can send me your night scout. We'll take a look together. I'll ask a couple questions around, like activity and other stuff that may not be obvious, and it within a few minutes, I can take a good stab at, you know, doing this math and a few other adjustments to get people in the right way. I don't know if I'm going to be offering that as a service, kind of standalone, probably, but most likely to be the course. And then I'll have a I'm going to create, like a little support group on the back end that's pretty affordable, so people get through the course. If they want to keep hanging out for not too much. We can hang out and, um, go over that stuff regularly, but I'll probably open up the doors for just a quick check in. And I don't mind people messaging me occasionally. If I have space, I'll, I'll message them back, but that time is going to become a little more, a little more limited. And the other thing is, I can, I have a couple of videos on loop and learn right now, and I'll put a few more on my YouTube channel in the near future that are just me talking through that exact scenario, somebody sending me something, ask them a couple questions and make some changes. So again, none of it's hidden. It's all it's all up there on on the YouTube. So you can kind of see me talking out loud with someone on the phone, usually a parent, and the adjustments we made. So yeah, yeah. Well, I

Scott Benner 29:19
mean, there are going to be some people who definitely just want to understand and the course, makes a lot of sense for that. And I wonder if the people who are just really flustered, if you could unfluster them a little bit, if that wouldn't open up some mental space for them to say, hey, you know what? I could learn more about this. Like, maybe just get out of the hurricane long enough to, like, settle yourself and think All right, now let's figure out how not to get back in the hurricane again. But I don't know if it's possible to do the figuring while you're spinning is what I'm saying. It

Kenny Fox 29:50
helps. It does help. I've seen it help people. I That's why I just reach out sometimes and help people, because they are spun up so much they can't take in any more information. They're. Fighting the system. They were maybe fighting it before loop or something big happened, like these basal rate changes, this puberty stuff kicking in, and now they they feel like loops been great for years, and now they're sideways. So it's definitely something I'll be looking into. You guys can pay attention to my website and see if I offer that. Right now, I'm just focused on trying to get the course out the door, but it's definitely I love meeting people and hanging out for a bit and putting them on the on the right way, so they feel like they can walk away and have things a little more sane, so they can start to make more mild adjustments, right? Yeah, it's been fun.

Scott Benner 30:29
Okay, do we have more in this section? Or can I ask a disjointed question before we move forward?

Kenny Fox 30:34
I would just highlight a couple things in the basal just so people know if they have kids with low basal rates. I remember doing that being the point 1.1 5.2 those kinds of things. And with this kind of exacting math loop does with the insulin on board. It expects zero insulin on board to make you level. And sometimes your kids just live between the rates their actual basal needs are just between what the Omnipod can deliver, which is a benefit to something like a tandem or something else where they have smaller increments, you can step up the basal. So if you guys are in that boat, just like give yourself a little bit of break, use the numbers the iob to help guide you, and just pick on which side of the of the fence you want to be on, on the slightly heavy basal or a slightly lower basal. And just try to maybe adjust the carb ratios and other things to kind of compensate knowing you're either heavy on the basal or light on the basal, it's a tricky spot to be in to get it just right, considering loop kind of really wants it to be exactly right. It's not very forgiving in that sense. So I think that's important to know. I was going to ask you a question about this. One thing I find challenging lately, as test has hit puberty, more near 11. You had mentioned before that sometimes Arden would get real sensitive in the evening, going to bed. I experienced for the first couple times in the last few weeks, like just a big drop, a big it looks like you collect a bunch of negative instant on board in loop terms, where blood sugar just drops and falls out, and we treat it. And she comes back up, and she goes back to sleep, and then she's fine, but it's just crazy. It's like, almost like she didn't need any insulin for like, a half an hour or an hour. Did you ever experience any of those weird drops? I hadn't had those in my six years of doing this until just recently. I

Scott Benner 32:14
don't know how to explain them, other than it feels like when she closes her eyes and relaxes her insulin needs go down. So

Kenny Fox 32:26
I don't know the whole night, though, right? I think you've expressed it's the whole night, though.

Scott Benner 32:29
Arden uses a different basal rate from bedtime until she wakes up, right? Yeah, and if she sleeps in, then that's the only time you have trouble, because the the new basal rate comes on for like, general days, you know, the day she wakes up. But if she's suddenly like that, I don't have a class, I'm gonna sleep till noon. I almost have to remember to get up in the morning and do it like I'll do a Temp Basal through night scout and take her basal down to another level for a few hours, and then hopefully I notice when she wakes up, because I want it to go back to where it is as soon as she's awake. So to be honest, I don't exactly know, but to me, that's what it feels like. There are things that I've seen in throughout this time that I just trust now, like, here's an example of one, if your blood sugar stuck a little high and you go make a number two, I expect your blood sugar to come down afterwards. I don't know why. I don't even think I care why. I just know that I've seen that so many times it happens. I mean, Arden's a young person living in the world. She's got anxiety and stress like everybody else, and I expect that part of her settings are due to that. And I expect that when she closes her eyes and relaxes, that her needs change drastically, pretty quickly as soon as she falls asleep. The problem with a 20 year old is they don't just like go to bed every night at 10 o'clock. I found myself like I can't turn the basal down too early in the evening, because what if she sits up till two in the morning? That's a different problem, right? So I look a lot at the when she goes to bed, and the insulin on board. Even though you've explained it to me in the past, I think somewhere in here, I'd love for you to explain again, how you use the insulin on board number to fix a low blood sugar. Like, how do you know based on negative iob that this many carbs is what? Anyway, we'll get to that. But like, let's not forget to get to that. It's a note I made. She goes to sleep. She seems to relax. That happens. I think the same thing. When people say they get in the shower and their blood sugar goes down, I wonder if the hot water doesn't just hit the back of their neck and they just forget about their worries for a while, and suddenly they've got more insulin than the adrenaline and stress. Yeah,

Kenny Fox 34:38
I've, I've appreciated that more. I used again, used again, used to be kind of like, oh, we always need a lower basal rate during the day than we do at night or a flat one. But I have seen working with people more intensely that I even have a friend as an adult, same thing, going to work, going to school, raises their blood sugar. They just need more insulin as a result of what I can only imagine is. Stressed. My daughter, Tessa, got the same problem when we moved across the country just in August and started a new school, and she was super amped up to go to school. I think she was just excited to have a different school. She's kind of partially hybrid home school before now she's going to public school and middle school, right? And she just needed more insulin, you know, for the first few hours of the day, and then she would get off, you know, we're not the bus, so we get her from school, and then her blood sugar would kind of drop. So definitely, and it's like gone away, that that impact has disappeared, yeah, as we've gone through the school year. So it's definitely, there's definitely other things to pay attention to that you got to watch out for. I have a question for you real quick, though, does Arden need the same increase in basal on the weekends, or is it just

Scott Benner 35:38
school days on the weekends or school days. Yeah, her basal, her No, her daytime basal is seven days a week, so whatever her level of life is, it's pretty consistent with her. I mean, I'll joke, like, not just joke, but you can see her walking to a test because her blood sugar just like, like, if she leaves her dorm room and she's going to a test, I watch her blood sugar start to rise. It can go from 80 to 160 and the algorithm jumps in and it's like, Hey, what's going on? And it'll like, hold at 160 now my inclination in the past would be like, let's Bolus. But what I've learned to recognize is that when the test is over, it comes back down on its own. So,

Kenny Fox 36:21
yeah, that adrenaline or something like that, that's causing that rest. I

Scott Benner 36:24
wouldn't ask her to touch that. It's just a benefit of using an algorithm that you you know, because, you know, without that algorithm, you wouldn't just be 160 it would be 300 you know, like it would just keep going, because it's, it's pushing, it's pushing with basal, it's pushing with boluses, etc. It's magical. Kenny,

Kenny Fox 36:42
yeah, it's nice to have an algorithm, I kind of call put a lid on it, right? So even with that, with Tesla, when she has basal right knee changes overnight, or this growth spurt thing we were talking about earlier, yeah, he was 170 which is obviously a problem, if the target and loop is like 100 but what would it have been if you tried to sleep the whole night. You know, without that, with just a regular pump or shots or whatever, making that adjustment would be very difficult to do. I wanted

Scott Benner 37:07
to go back to one more thing, that if you are listening and you have a smaller child who's experiencing overnight growth spurts like what I just said might sound crazy to you, because your kid might go to sleep and their blood sugar shoots up all the time, but Arden's beyond that. Now it is really interesting. The thing that you mentioned earlier about basal rates, because I can even though it's been years since we recorded those episodes together, I remember you advocating for one basal all day long. And I don't know if I said it out loud in the episode, but I do remember thinking, Well, that's easy for you to say, because your kid hasn't hit puberty yet, I

Kenny Fox 37:43
think you did. I think you sneak it out, or maybe it was after the call or whatever. But yeah,

Scott Benner 37:47
you know, your bigger picture understanding has to evolve, as you know, if it's a kid, growth spurts happen, I mean, but also could just be weight gain. If you're an adult, you gain 20 pounds, like a lot of these things are going to change for you. I just saw something really interesting the other day where, when Arden would make the trek home from school and drive herself, her blood sugar, she I noticed her having to Bolus a little more. But the other day, she made the trek home, and my wife was with her, and my wife, I think she suckered my wife into driving and like, she didn't need as much insulin for the ride home, because, I think just the she wasn't, you know, hold on to the steering wheel, staring at the road, trying not to die, like, you know, like it's just it was more relaxing to be in the other seat. So there's a lot of stuff that's going to impact your insulin needs.

Kenny Fox 38:35
Maybe, maybe when it starts settling and she's driving, you'll feel like she's matured in her ability to drive. It'll correspond, right? I

Scott Benner 38:41
don't know she's a good driver. I just think she might be a fairly aggressive driver.

Kenny Fox 38:47
Nice, nice. Yeah. I mean, I've seen I was counting through my messages, like, a year or two ago, and I think I have more than 600 different people or more that I've like, gotten messages from in Facebook over the years. And so, yeah, since those episodes, I've seen a lot more graphs, a lot more ages, and then experienced more too with my own daughter. So it's definitely, like, opened it up. But you know, the idea of keeping it simple is definitely guiding for a lot of people. Hey,

Scott Benner 39:12
let me jump in here and ask you a question with opening up box in the loop house. Calm, you're not a doctor, I guess is my statement. Like, so like, how do you set something like this up? Like, what, what was the back room to getting something like this set up? A little

Kenny Fox 39:24
bit of concern. I definitely have a lot of like, notices that say, Hey, I'm not a doctor. Everyone understands that. And when I'm going to be talking about whether it's one on one or with the course, I'm always talking about how this is what I do for my daughter, this is the and then we'll talk about the data. I don't get into the code, but I do reference the algorithm, so part of it's just strictly teaching math and function. And I'll reference some, you know, studies and things like that, just to look at, like the facts. And then I'll tell how I apply it to Tesla's life and the numbers we just talked about and why that math. Works, and so I might make suggestions, say, if this was my daughter's graph, or I've seen something like this before with my daughter when she was that age, if it if it applies, I might change something like this based on the information we just described. So I'm definitely trying to stay clear of saying you need to change this. But this is why the emphasis is on educating people how the system works, and then how I tend to apply it so people can keep up. Because I do find that, in general, my drive to do this lately has been, I just feel like I'm not working quite as hard as some of these other people that are trying putting in more energy and effort into looping and getting worse results. And I don't think that's fair, and I think I've settled on, I worked on dialing back my own involvement, and we do just a couple things that with you understanding builds on. But the couple of things is, wake up in the morning, scroll back, look at night Scout, try to see if we need any basal changes, or if she's starting to run higher. Then I check to see if her pods leaking first, and we address that. And then, you know, we just avoided a catastrophe for the rest of the day, or running higher or running lower. And so it really only takes a minute, maybe less longer if you have to go, you know, change the pod, yeah, but we do those things. And then the rest of the information I can just glance through the rest of the day, maybe end of the day, take a look at the meals, and we'll talk about how we adjust meals a little bit. But I kind of have a certain order. I go through the settings and prioritize those, but the big ones, the basal every night, if it's just a couple minutes. Once I started doing that and making the adjustments, ever since I was on the last podcast four years ago, I've just gotten better at it. If I can teach people to do the same thing, I think they'll be able to put in less effort and get better results, or at least the same results with less stress, they'll know what to what to change. That's one of the feedbacks I've gotten from people is, hey, how do we feel at the end of this? Like, your numbers may not have improved dramatically at the beginning, but the amount of energy and effort it takes to get those numbers is significantly less. You're like, No, I know what to change now. I know right. Basal, I know that's a carb ratio, and I can make the change. And then we adjust, and we move on, rather than mentally, like mulling it over in your head for way too long, trying to figure out what it is. Yeah, that's really what a lot of people get out of the initial modifications, is just knowing where to start. It's interesting

Scott Benner 42:12
to hear you talk about it, because you sound like me talking about making the podcast. There's a way I do it. I don't know. It just works. Here it is. I don't care. Try it yourself. You know, take some of it, take all of it, do whatever you want with it. I do get the same kind of responses back. It's great, like, so in the end, you've, you've got this compendium of information in your head, and you're just going to share it back with people and and let them try to put it into play and see what they do with it. I think it's awesome. So yeah, this is

Kenny Fox 42:36
exactly like the podcast is trying to zero in on loop and and slightly more technical, just so I feel like I can talk objectively about it, and people can make their own decisions. I love it. It's a fine line to walk, but you're my inspiration, Scott.

Scott Benner 42:49
People need the help. Like, they just do, you know, we went from just fast acting insulin and in a pump, you know, however many years ago, and people would just go, like, I don't know what's happening. Like, it's all over the place, like, you know, nobody helps. Doctors don't help you. Like, you know, then that's your hell. That's you go live that life, and you say to yourself, like, well, that's just diabetes. I guess this is what it is. And then that's the level of torture that you now live with every day. And I came along and said, like, I don't think that's right. I think you should maybe move some of these settings around. Learn how this insulin works a little bit, and then these algorithms came along, and it's great for the people it works for, but for everybody else, you know, they used to say, well, that's just diabetes, and now they say the thing doesn't work. Like, you know, I bought the thing. You told me it works. It doesn't work. And now they're just, that's their hellscape, and it goes on forever, like, people need to understand how insulin works, no matter where they're using it. And, you know, I think this is awesome. I'm really excited that you're that you're doing this. Do you think we stop here, call this an episode and move to the next thing? Or do you think we keep talking? I'll

Kenny Fox 43:55
add one more thing, and then, yeah, we can probably go on to, like, food in a different one. I think one of the things you mentioned here is like clarifying things for people, looking at the all the variables that exist, I think with loop, loop is unique in that it's trying to model everything. Is just trying to you, just tell it, and it trusts you. And so it puts the settings out there, and it calculates everything with a fair amount of accuracy, as long as you, you know, do your part. There are other systems that try to handle the fudge factor, which is great, try to help the fuzziness of all the stuff you're entering. But what's cool about loop is, once you settle on like you get basal rates kind of dialed in. It seems to me, when I'm talking to people about this, that it kind of clears the fog. What people say is, Oh, I see so many more things now. So they level their basal rates out, kind of find what works, and they understand what the basic pieces of the data they're seeing in loop is like, Oh, well. Now I see when there's a bad pump site. Now I see when activity is causing a problem. Now I see when fat and protein is causing the problem. I found the same thing for me. Is once, you know, you talked about fat and protein, and we had pretty good settings, that was like, Oh, now I know why there's a rise, you know, 345, hours after a meal. So instead of looking at a meal on a graph as like, oh, well, there's two hours. I don't the meal seemed fine. I don't know why we're going high now and now, as you can see, those pieces, once you understand what the variables are, and you get really good basal. It sort of clears the fog, and people can now know what those things are very quickly, without too much energy, and they can just fix it. They can address it. We can add more carbs or fat and protein or whatever we'll talk about that later, but that's the clear and the fog thing. People need the help. I think because of that, there are systems, DIY systems, that are working on adding layers on top of those basic models to help with that fuzziness, to help to the point where maybe you don't even have to enter carbs, like with trio and all that kind of stuff. But I think to start with loop helps you learn. So either you can learn it by listening, you can learn by watching the videos, or you could try loop out for a little while, and it'll force you to see variables that maybe you didn't quite see so clearly before that have been talked about on the podcast all over the place, especially in like the pro tips and those kinds of things. And you'll just be able to see them working and then be able to address them without really spinning your wheels a lot. So I think that was that's been helpful. The way loop is designed, it really externalizes and draws the picture of all these other things that you can then see. So

Scott Benner 46:22
I really enjoy talking to you, because you do a very good job of contextualizing the thoughts in your head. Whereas I can tell you that by watching night Scout, I've learned a lot about diabetes, but I don't know that I can tell you what, like, I watch the graph, and I look at the graph and I go, Oh, I think the pods going bad, or, you know, like that kind of stuff. It didn't happen the other day, like, I said to Arden in the middle of the day, she's home, and I was like, I don't like this pod. Something's wrong with a pod. And she's like, it's fine. Leave me alone. I was like, Okay, fine. I pinged her a couple times during the day. I was like, Look, that Bolus was too big for what just happened here, and it didn't move. There's something wrong with the site. The site's not right. Blah, blah, I got such a begrudging text from her. A couple of hours later, my pod just errored, and I was like, do I be an adult here? How do I handle this? Exactly? And I just responded back, Scottie knows. I mean, I guess I could really, like, talk it through, but I don't know mathematically. Like, what did I just see that told me that, but I can just tell you that things were happening. There were Bolus is happening and basal adjustments happening, and the results were not matching my expectations. And I was like, this has got to be a site.

Kenny Fox 47:31
Yeah, there is a lot of that. For sure. I have the same kind of thing, and I'm working on trying to articulate what it is that I'm seeing. But part of it is just, I think everyone else is pretty sharp at picking up those things. Once you can get the basal pretty good, like, Oh, now you have more consistent. We'll talk about meals next time. But once you get consistency in your meals, then you when you lose it, like something's wrong, exactly we discussed, like you're, yeah, there's a big Bolus, but it just didn't move. That's strange. And I see the same thing when the pod site. And I get pushed back. Now that my daughter's 11. She's like, I don't really want to change it. So I'm like, Well, looks like there's some staining around the the tape on the on the pod, it's probably leaking. Well, can we just run it for a while? Sometimes we do, right, but at least I know what's wrong once, if she ends up high. Okay, well, we need to change it. And, you know, yeah, let's Bolus it and get it back down. And it's not confusing, it's annoying, but it's not confusing, and I let her make that decision. So

Scott Benner 48:24
yeah, okay, yeah. Well, we'll get to that, because, like you said, once you can clear out some of that noise, everything comes into focus much easier. So we'll do that in the next one. Thank you.

This episode of The Juicebox Podcast was sponsored by us med. Usmed.com/juice box, or call 888-721-1514, get started today with us. Med links in the show notes. Links at Juicebox Podcast com, thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juice, box. Are you an adult living with type one or the caregiver of someone who is and a US resident? If you are, I'd love it if you would go to T 1d, exchange.org/juice, box and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation and you want to do something right there from your sofa, this is the way t 1d exchange.org/juicebox It should not take you more than about 10 minutes if you or a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu. Hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording, wrongway recording.com, you.

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Scott Benner 2/13/25 Scott Benner 2/13/25

#1432 Carter's Tzield Story

Jaime, shaped by lifelong T1D, dives into Carter’s Tzield treatment.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Friends, we're all back together for the next episode of The Juicebox Podcast. Welcome.

Jaime 0:14
Hi. My name is Jamie. I am joining today to talk about my son Carter's experience using TVL,

Scott Benner 0:20
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. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink. Ag one.com/juice, box, don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's Juicebox at checkout to save 40% at cozy earth.com Are you an adult living with type one or the caregiver of someone who is and a US resident, if you are, I'd love it if you would go to T 1d exchange.org/juicebox and take the survey. When you complete that survey, your answers are used to move type one diabetes research of all kinds. So if you'd like to help with type one research, but don't have time to go to a doctor or an investigation. T, 1d, exchange, org slash juice box. It should not take you more than about 10 minutes. This episode of the juice box podcast is sponsored by us med. Us, med.com/juice, box. Or call 888-721-1514, get your supplies the same way we do from us. Med. This episode of The Juicebox Podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management, imagine fewer worries about mis boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox

Jaime 2:09
Hi. My name is Jamie. I am joining today to talk about my son Carter's experience using T deal. I have had type one diabetes since I was three years old. I was diagnosed in 1983 so those were the days of no blood test meters at home. So I've seen a lot of changes myself in diabetes treatment over the years. I have two healthy kids, and I'm trained as an epidemiologist. Growing up with diabetes sort of motivated my interest in working in the healthcare field. How old

Scott Benner 2:40
were you when? When 1983 was happening? How old were you? I was three, three. Wow. Yeah, I could figure out how old you are now, or you could tell me, which would you prefer? I am 40

Jaime 2:51
I'm 4444 Okay, thank you.

Scott Benner 2:55
All right, so you're the type one in the family. Married. I'm married. Okay, so there's a four person house, that's what we're talking about. We

Jaime 3:05
have two households. So my son's Dad and I share custody, and then I'm remarried. His dad didn't have any history of of type one in the family. My aunt has type one diabetes on my dad's side. Okay, my mom also has Graves' disease,

Scott Benner 3:20
Okay, gotcha, you just have type one. There are any other autoimmune for you? No, no, all right. How do you manage what technology do you use?

Jaime 3:30
Sure, so I probably use everything there is. But for quite some time, I've used Omnipod over 15 years, and I was excited when omnipot Five came out, and I tried that, and I did not like it, but I really didn't want to stop the, you know, non wired pump. So right now I loop

Scott Benner 3:51
and I love it. Okay, you didn't like what about Omnipod five wasn't for you?

Jaime 3:56
I don't know. I have very different insulin needs at certain times of the day, usually around 3am and 3pm I would have a much lower basal rate, or, you know, or around the 3am and the 3pm for a period of time. And Omnipod just somehow could not sort that out. And I ended up with highs at certain points of the day and lows at other points of the day. I don't know. I adjusted the settings. I couldn't seem to sort it out. I didn't like that. You couldn't change the basal. And I exercise a lot, and I was really comfortable with Omnipod, where you could say, like, a certain percentage decrease, a certain percentage increase, but then you had to turn off the automation. I don't know, with loop, you can keep the automation on and turn on those overrides, you know. So

Scott Benner 4:39
you like having more control with the overrides and everything, yeah, yeah. But the tubeless nature of it meant enough to you that you weren't like, I'm gonna go try a T slim or something like

Jaime 4:50
that. No, I would not. I just, I don't know, never had it. Don't want it. Gotcha, all right, yeah.

Scott Benner 4:55
And then you are wearing a G 6g, 7g,

Jaime 4:59
Six. My son has wore a g7 a few times, and we haven't had a great experience with g7 so far, so I'm sticking with the six. Okay,

Scott Benner 5:07
excellent. All right, so how does your son end up having an experience with T Z? Like walk me through that process. I

Jaime 5:15
knew about screening for antibodies for quite a while, and my son, zad, and I had decided we weren't going to do that, because I figured I would know when he gets diabetes, and there was nothing to do about it for a long time. And then I heard about T Z yield, I think I heard about in the Facebook group. And then I I'm on LinkedIn. I'm connected with a lot of people in the life sciences and med tech industry. So I started seeing posts coming up on LinkedIn, and I'm like, Okay, well, he's yield to her. Like, now we can do something if we find out he's going to get diabetes. So let's do the screening. So I ordered the kits, and then I left the kits in the closet for months. It's like, yeah, I gotta do that kit, but I don't want to do it today. I don't know it's interesting. Like, I've talked to other people, they say they do the same thing, like, you can't actually sit down and do it because you almost don't want to know, yeah, is that

Scott Benner 6:05
it is, what slows you down is that you're just like, Oh, what if it's like, what if they do have antibodies, that's the vibe. Yeah,

Jaime 6:12
yeah, it's a strange block. But anyway, there was a long weekend in January, I think it's Martin Luther King weekend. I was like, Okay, we're gonna do it this weekend. So I sat my daughter down, and it is hard to get the blood out of the finger into that tube, and it went on and on, and we finished hers. She's like, Mom, that was terrible. What do I get for doing that? Like, you can have some ice cream, you

Scott Benner 6:32
know? So you might get diabetes, sweetie, hold on a second. Yeah, just hold on a few weeks. So, and your son's looking over from the corner, going, I'm okay, thanks.

Jaime 6:45
Yeah, exactly. So I packaged it up in the shipping package, and I noticed when I was packaging it up that I put it in the wrong container. I put Ashley's in Carter's container, and you could tell, because of the IDs on a study form. And I mean, this is sort of funny, because I'm an epidemiologist, you're supposed to be, like, protocol driven scientist. Oh my gosh, I can't believe I did that, right? I knew that the study wasn't going to accept them because they're mixed up. Like, that's not how a study works. So I was like, All right, you know, it's too late. I can't call them. I'm just gonna assume we're going to have to do this again, and in the meantime, I said I'm just going to do a fast like a random blood sugar, because I want to see it be normal and I'm going to feel better for the rest of the weekend. So my daughter's like, again,

Scott Benner 7:35
there's no blood mommy.

Jaime 7:39
So I did hers. She was 85 I did Carter's. He was like, 150 something, and they had both eaten lunch at the same time, and it had been about two hours since the meal. And I was like, now I know the screening guidelines for diabetes actually have done research in diabetes earlier in my career. I don't right now, but you know, and I looked up the guidelines at that moment, and I'm like, This is not good, but it's not terrible. So the next morning, I'm like, Hey, Carter, we gotta do a fasting. Alright, Mom, how

Scott Benner 8:10
old is this point? By the way? He's

Jaime 8:13
1414, okay? And at the time, she was 11, all right, I did his fasting, and the first one came back, 126, I'm like, we're doing a second one, something again in the 120 wash your hands. Yeah, right. I know. I'm like, Oh, no. You know, most people with type one are like, that's not too bad. But for screening purposes, you do not want to see something above 100 fasting, yeah. And so I'm like, you sure you didn't eat anything, even when you

Scott Benner 8:41
know your meter might be off a little bit, and you start going, like, okay, let's give it 15% and then you go, Oh, it's still high. Yeah,

Jaime 8:48
yeah, I agree, but still not. I'm not flipping out. I'm not like, oh. So I sent a note in my chart to his pediatrician, and I said, I just did these fasting numbers. Can you please order antibody screening, because we need and another blood test fasting. And she wrote me back and said, I'm going to order the A, 1c, and fasting, we won't order the antibodies right now. The message said, we'll save him some blood. I'm like, No, take all his

Scott Benner 9:15
blood. We won't it's not looking to do it twice, yeah, the

Jaime 9:19
next day, we go to the fasting lab at the actual lab that came back 111 and the A, 1c loaded in my chart. I think it was the next day. Maybe it took a day for it to load, and I saw that it loaded. And at this point I'm 80% thinking Carter has early type one diabetes. Yeah, right. It could be some of our explanation here, but I'm 80% thinking it. So I hovered on that screen. I'm like, Oh my I just like impending doom. When I clicked on it, right, yeah. And it showed 6.4 and I was like, oh, like, oh, no, you know.

Scott Benner 10:01
I knew then, like that moment you're describing Jamie. I had that moment in a 24 hour pharmacy. I stood in front of the meters, and I had the conscious thought, if I never leave here, Arnold Arden will never have diabetes if I don't leave this space. You know what I mean? It's an interesting I understand that. Yeah, today's episode is sponsored by Medtronic diabetes, who is making life with diabetes easier with the mini med 780 G system. The mini med 780 G automated insulin delivery system, anticipates, adjusts and corrects every five minutes. Real world results show people achieving up to 80% time and range with recommended settings without increasing lows. But of course, Individual results may vary. The 780 G works around the clock, so you can focus on what matters. Have you heard about Medtronic extended infusion set? It's the first and only infusion set labeled for up to a seven day wear. This feature is repeatedly asked for, and Medtronic has delivered. 97% of people using the 780 G reported that they could manage their diabetes without major disruptions of sleep. They felt more free to eat what they wanted, and they felt less stress with fewer alarms and alerts you can't beat that. Learn more about how you can spend less time and effort managing your diabetes by visiting Medtronic diabetes.com/juicebox I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now, because that's how long we've been using us Med, US med.com/juice, box, or call 888-721-1514, US med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omnipod, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over 1 million people with diabetes since 1996 and they always provide 90 days worth of supplies and fast and free shipping us. Med carries everything from insulin pumps and diabetes testing supplies to the latest CGM, like the libre three and Dexcom g7 they accept Medicare nationwide and over 800 private insurers find out why us med has an A plus rating with a better business bureau At US med.com/juice box, or just call them at 888-721-1514, get started right now, and you'll be getting your supplies the same way we do. So

Jaime 12:50
then she wrote, right away, wrote the pediatrician, said, I've sent a stat order to endocrinology. You know they'll be calling you to set up the appointment immediately. I called Endo. So he's in a very restrictive health plan, like an HMO and a small hospital network. Okay, I know a lot about health insurance, because you have to when you manage prior authorizations with type one diabetes, but his plan, it's his dad's plan, and it's a great hospital network, but it's very restrictive. And in a sense, I didn't mind, because the doctors here are very good, but you can't they usually won't schedule that appointment until the referral is approved. And I'm like, take it first appointment. Like, give me the first appointment. They're like, well, actually, we have one tomorrow at 2pm but you know, you may not be covered because your referral isn't approved. I'm like, I don't care. Just self pay. Just write me self pay. We're coming in tomorrow, so we tell Carter he was at his dad's house. His dad's like, I'm gonna tell him, you know, the results came back and we need to go see a specialist. And, no, actually, it's a little

Scott Benner 13:52
different. Hey, you got a good ex husband. How'd that happen? Most of them would be like, Oh, we get along very well, yeah. He's like, I'll take care of this is a bad thing. I love my kid. I'll tell him, like, Wow. I was like, That's really impressive. No,

Jaime 14:03
and we're all communicating back and forth, I mean, the whole time. And it was actually, I'm very proud of how we did that. Everything was decided together with conversations and discussions. And yeah, no, that day we told him, you're gonna need, that's right, you're gonna need to see a specialist. And he broke down. And my kit Carter is so flexible. Yeah, everyone says, hey, where do you want to go to dinner? He's the only one who wants to go to this one place, and everyone wants to go somewhere else. He's like, That's fine. Never about anything. He's just flexible. He doesn't get upset, yeah, and he got really upset, really, really upset. And I cried. His dad cried, he cried. And we didn't even really know what was going on at that point, but we did sort of know, you know. And it couldn't calm down. It was awful. I said, you know, trying to say some positive things, you know, trying to explain the uncertainty. It didn't help. I'm like, you know? Why? I can go take a shower. Sometimes it helps people calm down. So he did. He sort of took a step away from the conversation, and he calmed himself down. And the next day, he was fine. I mean, he wasn't having a meltdown,

Scott Benner 15:12
right? He wasn't thrilled, but he wasn't then we got it,

Jaime 15:15
yeah, yeah. Then we got a call from the doctor's office, and they said, You guys need to go to the hospital, and we're like, what? And they said, well, any potential type one, the protocol is, you go to the hospital, and I sort of get it, because, you know, most type ones aren't diagnosed in stage two, like he could be in DKA, right, if he's a probable type one. So anyway, we picked Carter up, surprisingly, from school. He didn't know that. Then we were going to go to the emergency room. So we go to the emergency room. They do a whole bunch of tests. And I had read, I was up for hours reading about T Z yield and how we were going to get qualified for T Z yield that night, right? And at the hospital, like, don't do another A, 1c, or or fasting, or OGTT, don't

Scott Benner 16:01
do it, because if he, you need the number they had already, yeah, yeah. I gotcha,

Jaime 16:05
yeah. I'm like, I need that 6.4 if he, if it had been 6.5 it's possible he wouldn't have been eligible. I don't know for sure, but that's the qualification cup point. No one in the trial was above anyone, right? So they didn't. And, you know, it's fast, whatever the random came back high again, and they tested them for celiac that was negative, thyroid was normal. Did a whole bunch of tests, and they ran the antibodies, and they let us know they won't come back for two weeks. And the doctor said, you know, we can't know for sure, but basically, we already know he has stage two type one diabetes. He's eligible for T Z yield. We don't do tea field at this hospital. That same day, we had an appointment member with the at, actually a different hospital, the pediatric endocrinologist, we got the referral to. And I'm like, well, we might as well meet them, because they're probably going to be the ones that figure out the T field situation, not this hospital doctor. So we left and we went to see this other doctor who

Scott Benner 17:03
she's like, Oh, you didn't like this one.

Jaime 17:06
No, I'm no, okay. She She said, Well, you know, it's possible Carter has type one diabetes, but it's also possible he ate a lot of sugary things over the holidays, and that's why his ANC is elevated. Wow,

Scott Benner 17:21
that's a misunderstanding of the human body. Yeah. I was like,

Jaime 17:26
what I mean at that point? I'm like, this, this is our doctor, oopsie,

Scott Benner 17:31
like I knew she's wrong. Are you sure you just didn't have a Mars bar and then eat ice cream and then got a six over a six

Jaime 17:42
days and days every three hours. I mean, what like?

Scott Benner 17:46
So let's say I ate a bunch of sugary stuff and my body still hasn't regulated it. What do we call that? Hmm, let me think. Let me think. Is that diabetes? I don't know. It might be.

Jaime 17:59
Oh, you know, I know kids get type two, but like, he's slim, you know, I

Scott Benner 18:05
Well, how about you have type one? Yeah. I mean, like, come on,

Jaime 18:09
come on. And so I'm like, Well, why was the hospital telling me? Like, this is what's happening. I mean, we're 99% sure, and you're telling me something else that doesn't make any sense. So she leaves the room. She said, I'm going to call the hospital like, okay, so wait. She comes back in and she says, Well, the hospital and I differ on our opinion here. You know, that's all I can say at the time. We won't know for sure until the antibodies come

Scott Benner 18:33
back. Yeah, but I'm super excited to misdiagnose your son, put him on Metformin and watch him and go into DKA. Can't wait to get this going. I love this part of my job. How often does this happen? You know, I don't know. We

Jaime 18:45
get in the car. I'm driving him back to his dad's, and Carter's like, oh, like, I guess it sounds like I might not have diabetes. Yeah. Great.

Scott Benner 18:53
Way to go, lady.

Jaime 18:57
I also said to her, will you let us know the minute those antibody tests come back, because they're going to be in a different system, they don't go into member or two different systems. They don't go into the Yeah. She said, Well, we'll have an appointment in three weeks. I'm like, no, no, no, no, not three weeks. We the second that lab comes back, I need to know, well, I guess you can keep calling me off. I'm like, oh boy. So she's like, the systems don't connect. So then I'm trying to call, where am I supposed to call the hospital emergency room? Like, to get the lab so I I'm like, Okay, I need to get on the my chart of the hospital, because then if I'm on that one, I'll see when the labs come through. And now you're welcome to California law about health records for teens I cannot access his labs. I'm blocked the state of California. Well, this is this hospital's interpretation of the State of California doesn't allow me to view Carter's medical information, so I won't know when they he's

Scott Benner 19:54
14. He could take care of himself,

Jaime 19:58
not only that, Scott, I'm like 10. Mind, then I'll make him an account, right? Or have his account. And I, I was on the phone multiple times with the hospital, like people that manage this record system, and they're like, No, the children can't have access either. They're minors. You don't understand.

Scott Benner 20:13
He's not old enough to have this. He can't have it, and I can't have it. That's great. What kind of system is this? That's great.

Jaime 20:24
So that I call, I find the name of the doctor on the outpatient record. I'm like, I'll call his outpatient office somehow, just to make sure I

Scott Benner 20:31
real quick. Is it Dr Bombay, by any chance is that the doctor's name? Does anyone have a Am I too old? Like, does anyone get my bewitched reference? Right now. It's not a crazy witch doctor. No, no, okay, never mind. I'm sorry. Go ahead.

Jaime 20:45
So I called that outpatient doctor, and they're like, well, he doesn't have a record in the system because you were seen in the emergency room. So I don't know, I can't send a note because there's no record. I'm like, you know, almost crying off on. I'm like, listen, someone needs to be watching for the labs. Like, who's watching for the lab? So that I get the labs, please? I

Scott Benner 21:04
love that she's just willing to wait like, three weeks. Like, what was it going to be a gender reveal? Were you going to, like, hit a pinata when you got there or something? Like, What is she thinking about? Yeah, anyway,

Jaime 21:13
I don't know. So annoying, and I got so annoyed. Then I'm getting annoyed about California health laws. I mean, I was annoyed about enough, you know what? I mean, yeah, after we found out it was actually the day after the eMERGE, the emergency room visit and that annoying post doctor visit, I was like, Okay, I need to figure out every step to get Carter tea sealed. I felt like a warrior. I'm like, it's going to be hard. This is a newly approved drug, right? And it's very expensive, and we're in this limited plan. And from what I can tell, both of these hospitals in the plan will not allow us to get they don't have T cell they can't administer it. It's a 14 day infusion. They don't do it. So I'm like, Okay, so we're gonna have to go out of network. How are we going to do this? Where are we going to go? So I called, and I said, Listen, I called the Health and I need to speak with someone who knows about prior authorization for specialty medications. I need to speak to an expert. And they just connected me with one. And this woman was so nice. She stayed on the phone with me for 45 minutes. We needed an out of network, referral to the facility that could administer the drug. That person who was going to administer the drug had to write a stat prior off, which should have a three day turnaround time. Then, because it was out of network we had, oh, and we needed a referral to that out of network facility with a specified and she told me what had to be in the referral note, like it has to say that we cannot do this at this facility. So that's why we're referring out of this facility, right. There would need to be a letter of agreement between the facility and the health plan, documenting the financial payment terms, because it was out of network. You can't figure that out afterwards, because it's so expensive, so all those things needed to be in place. I'm, like, I got it. We're going to make it happen. I'm going to make all those things happen. And I just, I was so I couldn't stop thinking about getting Carter tea deal. What do we need to do to get teased? But we're we can't do anything until we get the antibody results. Oh, I had to find the facility. So I knew someone at this other facility, nowhere near where we live, and a physician, because I know I know them through looping. I messaged him, and he said, Yeah, we do it here. I'm like, Oh, thank God. So he referred me to the doctor at that facility who did T field. We got an appointment very quickly. I actually wrote the referral letter from that remember that doctor who thought Carter might not have diabetes, I told her what needed to be in the referral letter, the out of network referrals, and I don't trust that she's she's going to know what to do over there, I dropped it off in person like, hi, I need to see this handed to someone who's going to hand it to the

Scott Benner 23:58
doctor case. So I don't know that you're a nutcase. I think you you recognized along the way that there's just too many there's too many pain points, there's too many possibilities for this to go wrong, and then somebody just either drop the ball or just tell you, Oh no, it doesn't work, and not really know the answer. Can I tell you something just real quickly, hold your spot in your story. Okay? You want to hand it to somebody and see them. Hand it to a doctor. Okay, I have to sign something for my bank, and they sent me an email, and it says, Please read this and then sign it, and you open it up and there's nothing there. So I emailed back, and I said, Hi, opened up your document, but there's nothing there. You know, sorry, they resend it, of course, it's exactly the same. I send it back. I say, I'm sorry. It's the same. I opened it up and there's nothing there. I've also now tried three different browsers. That doesn't matter, there's nothing there. They send it back again, no explanation, no like, nothing. Just. Here's a new email. I try it on my phone, it doesn't work. I tried it on an iPad, it doesn't work. I email them back. Now I'm sending them screenshots. This is what it looks like when I open it. Thing that you want me to do isn't there, and she just sends it to me again. And I responded back, and this time I said, whatever her name was. I think I was like Lynette. When I open your document, the thing you want me to review does not exist. I cannot see it. I have looked on my computer, on three different browsers, on an iPad, on an iPhone, it's not there. And she responds back, just click the boxes and hit accept. And I responded back and said, You want me to sign a legal document. But I don't know what it is that doesn't seem like a thing I'm going to do. Here's my phone number. So this morning they called me, and she says, Hey, we just need you to sign that. And I was like, Yes, I know I've been going back and forth with Lynette, but as I explained to her, and I went through the whole thing again, now I'm speaking to a second human being. She says, Well, hold on, we'll resend it to you. And I went, please do not I said, Please, please do not do that. By the way, Jamie, I'm gonna just admit this to you. Okay, because I think it adds to the story, and it happens to be true. I was in the middle of my morning constitutional while I took this phone call. Okay, now I'm like, I'm like, Look, I hold on. This has been going on for two weeks. I go over it with her. No matter where I open it, it's not there. Here. Do you have an email address? I do. Hold on a second. I email her the page. I said, are you looking at that? She said, Yes. I said, That's what I see. There's no information there. And she goes, I swear to God. She goes, just click on the things and hit accept. I said, I'm not signing a legal document that I can't read. First. She goes, Oh, that makes sense. Can you come by? I said, I live 45 minutes from you. I will not be stopping by. And she goes, okay. And I said, if you want, you can mail me a paper copy of it and I will sign that and send it back to you. She goes, Why don't I just tell you what it says? No. I said, You want me to let you read me a legal document, and then me just assume that when I click on these buttons, that's the legal document I'm agreeing to. And she goes, yeah. And I went, you think that's a thing I'm gonna do? And she goes, No. I said, Would you do that? She says, No. And I was like, Okay, now this is a thing, by the way, that someone else had to sign. I'm helping my son with something, right? This is like, very parse, but I'm co signing on something for him, right? And she goes, Well, your son signed it. And I said, he's an idiot. I'm not going to do it, okay? And she's she, and she goes, what? I'm like, He's 24 he'll click on anything you tell him. And I said, Why don't you take this opportunity to send this problem to your IT department? Maybe they can get it fixed. And she says, Well, we've never had this problem before. And I said, it's more likely that you've never sent it to someone before who was like, I don't think I should sign something that I can't read. Yeah, and this has been going on for two weeks. This is signing a PDF with a bank.

Jaime 28:05
Either they're gonna have to get in the car, you're gonna have to get the car.

Scott Benner 28:07
No, no, this is not my point. Jay, that's not my point. My point is those people work at the hospital too, and they work at the and they work at the insurance company, and they work and all I could think while I was doing it was I genuinely I started thinking over the things in my life that involve another person or another entity, and how many times does it actually go well, like smoothly, like the person on the other end understands it? And the answer is incredibly infrequently, you know, right? Yeah, and now you are in the situation where you're like, I'm I'd like to try to get my son this drug protocol that might push off his type one diabetes, you know, diagnosis for God knows how long. And I don't want to leave it up to Lynette at the bank, right? Like, so, yes, when you said to yourself, I was nutty, or whatever you said, I don't agree with you, I think you were probably the exact right level of interested and dedicated. So that's why I stopped.

Jaime 29:05
I mean, I wasn't screaming or crying, you know that's and even then, if you're worried about your kid getting diabetes, you can scream and cry, in my opinion, yeah, I wasn't. I mean, I'm

Scott Benner 29:16
so sorry. You're at the doctor's office. You're holding the document. What happens next? So

Jaime 29:20
they take it. They they're confused. But, you know, no one else just pops up there demanding things like that. But I don't feel totally confident. Then I'm sending my chart messages. Have they seen the file? How quickly is the referral going to be sent below? Like, could you write me back within the next 24 hours? The thing is, this is a time sensitive treatment, right? And I had no idea like but the insurance require another blood sugar check, and then he progressed, and we're too late or something. You know, there's just a lot of unknowns. And this person at the health plan, I won't say her last name, but her first name is Heather. I just in my entire I've had diabetes for 41 Years, and I've dealt with so many prior auths, oh my gosh, especially when everything's gone through medical benefits and not prescription benefits. First of all, that's what prepared me to know what I was doing here, and to recognize that the system is going to be completely messed up. You're going to have to track every single step of the way. But I had this friend, really, at the health plan who checked everything. Oh, yes, I see it in the system. Oh, now it's moved on to the right, and you're going to hear back from this within two days. Hi, Jamie. I just heard back. Here's the result, here's the information, because a lot of stuff would come by mail instead of right, right. Just like a godsend. She even messaged, how's Carter doing after the treatment, just like she's like my friend at this point, Heather. You know, if you have any questions about billing afterwards, I just love this woman. Heather's a good one. If I was just upset, I would call Heather. I'm like, Heather, I can't I'm still waiting. I'm very upset. She's like, it's gonna be okay. Wow. So Oh, finally, at the doctor's office, they're like, we're gonna have someone call you when the antibody results came back. This is the person who's going to call you, blah, blah, blah. I'm like, okay, great. So it was a resident who, that's who we had seen in the hospital, who called me with the antibodies, and he, about a week and a half later, had, that's how long the test takes. Had four antibodies positive, and so he was eligible. You have to have two or more. So everything just sort of worked well for a while. We got the out of network referral approved. We went to the third facility, virtually had an appointment, went over all the questions about T Z yelled Carter during this whole thing, emotionally, is doing fine. He's like, Yeah, we're just trying to see if we can get this drug. And I had a very frank discussion, very long, like trying to understand his feelings, making sure he understood all of the risks and benefits of the treatment. Because his dad and I were like, we want this. There was no question, right? I read the trial results, I read everything about that drug. I read the full label. I understood there were small risks of certain bad things happening, but very rare, usually tolerated really well. But we, I told Carter all of this, there's like, a 1% chance you could have this really weird side effect, that they're going to be taking labs to check it, and you know it's going to delay, but there's not a guarantee it's going to delay. So it's possible that we get this infusion, and it doesn't, it doesn't delay. That could happen, and this is the average delay that was seen in the study, but some people had more of a delay, and some people had less of a delay. What's the average? The study of teas yield was patients who were in stage two, type one diabetes, the people who were in the control group developed diabetes on average in two years. But that's the average. That's not like, Oh, you're going to develop into some were six months, some were five years, right? The average of the control group who didn't receive T yield was two years. The average of people who received T yield was four years. So the delay, it's not a four year delay. It's a two year delay on average. So you won't get the diabetes in two years, you'll get it in four there's a lot of variation. That's just the average, and that's what they're allowed to say on the label, because that's what was found in the study, right? Oh, so I had this in depth conversation with Carter. He asked them questions. I'm like, it's really your decision. You're 14 years old, you know, you don't want to do this. California

Scott Benner 33:19
says, and we're not, I can't see your records, but you're not old enough to see them either. But anyway, we're gonna let you talk about this. Go ahead. What do you think? Did he talk it through with you? Like, what was his process?

Jaime 33:31
Yeah, he asked a few questions. He wanted to know. Like, how does the infusion work? You know, you say infused, they don't. There's actually two options. You can have sort of a permanent thing put in your permanent, I forget what they call it, similar to what you get for cancer treatment, like fistula, maybe, or, I can't remember what it's called anyway,

Scott Benner 33:51
they can put a port in and then every procedure,

Jaime 33:53
yeah, right. And then you don't have to get stuck every day. Or you can, you know, get an IV every day, and you have a choice there, and they'll go over that more at the hospital. And after the whole conversation and discussion, he's like, Well, worth a shot. And that was it. I love it. That's like, Carter's flexible attitude is worth a shot.

Scott Benner 34:16
That's excellent. So he does it. He ends up doing it. Well,

Jaime 34:20
then we get to the real stick, sticky point. Okay, the letter of agreement between the facility and the health plan, everything that went through, all said that was the last thing we needed. And that negotiation went on and on, and I was getting no updates. First, the doctor from that facility, where he's going to get it, was communicating with me by my chart, it's in progress. So like, two days later, I'd be like, Okay, is it done? Jamie, all I can tell you is that it's in progress. I'm like, can you connect me with the person who's actually working on this at the facility? No, we manage the communication with the patient, because we're the doctor. I'm like, That's not acceptable. So I call the infusion center. I want

Scott Benner 34:55
to say also the way he's the way he's managing it is by saying they're telling me it's in progress. Yes, that's probably all they know,

Jaime 35:04
too. The doctors not doing anything. It's billing. People managing this, right? So I call the infusion center, and I get some nurse and they're like, oh, yeah, I know that case is going on, and they're working on it, but you know this, it's really expensive. They got to sort out all these costs that the whole therapy could end up costing a million dollars. I'm like,

Unknown Speaker 35:26
a million dollars. Did

Scott Benner 35:28
they say it like in that cartoon? 1 million. Was it like that or no,

Jaime 35:34
no, it was like a horrified sound. I do believe this went on and on. Finally, I did get connected to a billing person? They're just saying the same thing. I'm like, well, we met again, and we're supposed to meet in two days, and this went on for three weeks. I'm like, what has happened? What have you decided? Are you making? Please explain the progress you're making. Well, we're just meeting. We're just meeting to go over the points. I'm like, This is nuts. So I contacted a friend of mine who's a health attorney, and talked with her for like an hour, and she gave me some tips about what to say, and I said them. Basically, there's a state agency that you can send complaints to when care is being delayed inappropriately, if you think it's inappropriate, right? So first you have to file a grievance with the health plan, a grievance with the facility. And then once you've done that, you can report to this state agency. So they had, like, the billing person's like, manager who it was a very senior title, VP of blah blah blah at the facility, ended up calling me one one day because I was so annoying. They're like, please, don't worry, this is in progress. It's going to be resolved soon. And that was right after I talked to the lawyer. I'm like, listen, I do not believe you that this is going to be resolved soon. That's nice that you're telling me that, but this is what's going to happen if this isn't resolved by Friday, I'm filing a grievance with your facility. I'm filing a grievance with the health plan. And then after the grievance, it's going to go to the state agency for investigation, if it's not done by Friday.

Scott Benner 37:06
Used all the magic words at once. Used them all up.

Jaime 37:09
Yeah, used them, yeah, yeah. And then that's how Teasel got approved. The next day, I got a call. That is it? 24

Scott Benner 37:15
hours later, yes, yeah, I love peanut butter sandwiches. Ah, yeah. No problem. Here it is. Turns out it's not a million dollars Crazy, right? Here you go. Oh, their job to say no to see if you give up, you know.

Jaime 37:31
So then we rented an Airbnb, and we went up there and we got tea sealed. And, I mean, it was smooth sailing. We just got the infused. He didn't want a permanent thing in him. They used something called the J tip on the insertion to numb the area. So he said he didn't even feel when the infusion was going in Nice. He did have somewhat hard to find veins, but they have a special it was a pretty advanced hospital where he got the infusion, and so they had everything. They had some special team that could find, hard to find veins, and he was totally calm. And it was, I look back at it like a medical vacation. We went to a nice area in the morning. We went to the hospital. We played poker, mostly during the infusion. And I didn't get to spend, I don't spend time like that with Carter, like he's 14 years old. He's doing his own thing a lot of the time. It was hours days of just meeting Carter. I was there for the first 10 days, and then his dad came up for the last four and I came home, we did that. And then the afternoons, he felt fine. We went to museums. We went hiking. It was amazing. Nice.

Scott Benner 38:34
That's excellent. After the that process happens, he gets the 14 days of infusions. What's the follow up? Like, like, how do you keep track of this? Did it work? Is it working? Like, agree, how long until you just forget about it and just hope it works for as long as it does, there's

Jaime 38:51
actually no indicator. You can't tell, like, oh, is is it gonna work? There's nothing you don't, like, get a test and they're like, Oh, it worked. It's gonna delay. You just keep monitoring the blood sugar. So his a 1c in January was 6.4 it was done about six weeks after the infusion again, and it was 5.4 with a normal C peptide. Now, the other thing about stage two, it could have been the impact of T seal, but also stage two sort of goes up and down like your your insulin levels get better, get work. Yeah, it's not necessarily, apparently a linear thing, but we're thrilled with the 5.4 he's also taking, I did some research on vitamins that might help delay so he takes those. And his doctor definitely recommended the follow up doctor that we're seeing here now, we found a really good one, and I like him a lot. So he takes fish oil and vitamin D, as recommended by the doctor, and then he also takes zinc and a B complex with C. I decided the C and the Zinc because of immunity. You know, you don't want to get sick like that's part of what kills the insulin cells. You get the flu, you get. Yeah, a cold, yeah, right. Those are sort of to try to keep so he takes those and I trying to limit the carbs. The doctor also recommended a lower carb diet. Some research that may be helpful. It's not super strong, but we didn't really drink, you know, juice or soda. But those are also you there's no sugary beverages allowed, so

Scott Benner 40:20
Well, you might as well try everything you can think of, right?

Jaime 40:25
Yeah, and he wears a CGM, like, one cycle a month, and because it could just boom progress, right? And you don't want to end up in DKA, so that's why you keep doing the a one CS every three months. And he wears a CGM, but he doesn't have to wear it all the

Scott Benner 40:39
time. What's the timeline on this from the time you thought, hey, he might have diabetes, until the infusion started? And how long has it been since the infusions were done,

Jaime 40:50
the end of January, when it all started, and then the infusions were mid March?

Scott Benner 40:56
Wow. You've accomplished all this basically in the last eight months. Yeah, it's been a lot. I imagine he's doing great. Yeah, excellent. Your company was good with you taking time off to go away, yeah. So I took

Jaime 41:09
FMLA, okay, so because it was more than five days in a row, I guess it would have been sick time only less than five days. But because it was continuous for that long, I just had took FMLA, and so I was able to do that. So part of it was unpaid, but that was okay for me, right? Well,

Scott Benner 41:25
the big parts like they, you know, not that they're just gonna fire you, but you know you've got your job when you come back and you know they can't. Oh, yeah, yeah. All that 10 days is pretty short, but FMLA is pretty cool about what it protects people from, especially when you're It is, yeah, fighting an illness like that. Have you guys had any conversations about diabetes now? Or are we, like, just gonna act like it's out of sight, out of mind for now? Like, where are you at with that?

Jaime 41:52
So especially when we were doing the T field infusion, it was like, a lot of focus on diabetes, right? We're here to prevent diabetes or delay diabetes, and so it was just on our minds a lot. So during those 14 days, we had a lot of conversations about diabetes. It was probably pushed more by me. I'm like, I want to get some of this info out there, you know. And one of the most interesting conversations we had, we talked about, like, symptoms of low blood sugars. And by the way, he does have some low blood sugars, but he feels no symptoms. So I'm a little puzzled by that, but that's the doctor said, Yes, you can have more lows in stage two type one diabetes, as well as the highs, because your glucagon production is a little bit off. Your body's releasing too much insulin at certain times. So, but for whatever reason, he feels no symptoms of them. Okay, I don't know, we talked about the insulin pump, like I showed in my loop, you know, showed, hey, this is what I do, and this is how the screens work. And I showed him night scout. Here's some of the data I look at to see how my trends are doing. I'm like, but there's lots of different options out there. And, you know, for many years, I just use needles. Or it's like, I think I want to use that thing. It's cool. You can control it from your phone,

Scott Benner 43:00
you know, like, Wait, it's got an app I'm in,

Jaime 43:05
right? Can I play? The one conversation I really wanted to have with him was about, you know, when teens developed, I Well, really, anyone there can be, like, a rebellious stage or a time period where you're not going to pay attention, and for whatever reason, it's my personality or how my parents raised me, or what I've never had that I never was like, Oh, I'm going to eat this and forget about it. I mean, make mistakes, whatever you forget. But I was never overtly, I'm not going to manage this closely. I was always like, this is very important, and I want Carter to feel that way, right? But how do I make sure that he feels that way? How can I encourage him to feel that way? So I just posed the question to him in this conversational way, like, hey, you know, sometimes, especially teenagers, if they get diabetes, they they don't pay attention to it, and they maybe they don't take their insulin, and they get really frustrated or mad about having diabetes, and they stopped paying attention to it. Like, what do you think about that? And it just allowed us to have a conversation about he's like, why would they do that? I'm like, Well, I don't know. Why do you think they might do that? Well, I guess just because you don't want it and maybe you can ignore it. I'm like, yeah, absolutely, it makes sense. But what's the implication of doing that? Right? That was one of the most interesting conversations I had with Carter, and one of them that I felt was really important to have. Okay, yeah,

Scott Benner 44:32
well, He'll either have it happen to him and he'll be like, Oh, this is the thing my mom and I were talking about. I still don't feel like taking care of this. Or, yeah, it'll creep up and he'll think, oh, okay, yeah, this is a thing to look out for. I'll get ahead of it somehow, and hopefully he'll be able to

Jaime 44:48
it's interesting wearing a CGM, because he can see how certain foods, you know, affect blood sugar. Obviously, when he gets type one, he'll need to take the insulin to match the foods, right? Right, but it's funny, the worst blood sugar, I actually texted his dad. I'm like, hey, what Carter eat at like, three o'clock yesterday? His dad said, blueberries. I'm like, blueberries, sugar. When Carter came back, I'm like, hey, that's fine. Did you notice how your CGM spiked up? He's like, I didn't notice. Like, okay, well, the worst was, like, 3pm the other day you were eating blueberries. He's like, Oh, yeah, I ate the whole container. Also,

Scott Benner 45:23
I am not looking at the CGM, in case you're wondering, right? Well,

Jaime 45:26
his high alarm is off. What's he going to do about it? Right? But it's just interesting to learn that. And so we have a new role of pairing carbs with protein. I'm like, you want to eat the blueberries, you got to have a piece of cheese or the nuts or something

Scott Benner 45:41
to slow this down a little bit, fair enough. And he, and he's, and he's flexible about it. As you go,

Unknown Speaker 45:47
yeah, he seems to be, yeah. Can

Scott Benner 45:49
I ask you? I mean, you're the type one, right? So, and you're of the parents. Do you have any feelings of guilt or strange, like psychological impacts from what's happening to him.

Jaime 46:03
I don't feel guilty at all. I had a thing happen where I was feeling so bad, just bad that Carter. This was happening to Carter, and it was when he got really upset that week. He so he does his own laundry, and I, I did his laundry that week, and he comes home. He's like, Mom, why did you come and dads? He's like, Mom, why did you do my laundry? I'm like, Well, you know, you're, you're getting diabetes. I just, I just want to do something, you know, extra for you. And he's like, Well, you have diabetes too, Mom,

Scott Benner 46:34
you should have said, yeah, do my laundry. Why are you helping me? Like, why have you been doing my laundry? I think the question here is, how come you have not been helping me with the laundry, right? So okay, that was interesting. I get your feel

Jaime 46:45
guilty i And also, like, when I think about my diabetes, I mean, I hate it. I wish it was gone. I'd be thrilled, but I wouldn't be who I am without growing up with diabetes. I wouldn't know who I would be. I it's part of me like it's who I am. And yes, I would get rid of it in a second, but that's how I feel about my diabetes. And I think the reason I don't feel guilty is a little bit because of how I feel okay about having my own diabetes. You know what I mean? And I don't actually feel that Carter will have complications. I have none. I feel very healthy. I'm very active. It's because I take care of myself really carefully and maybe a little bit of luck. I don't worry about Carter's physical health. I worry about his mental health. And I feel that growing up with diabetes now, in a sense, is very, very different than it was when I grew up with diabetes, because of all the constant monitoring we didn't have that. You had no idea what your blood sugar was running around like, you felt low. You ate two candies, and off you went again. Like, so it wasn't in your mind. You were also

Scott Benner 47:54
using regular and mph, right? Regular

Jaime 47:56
and mph, yeah, not too many shots a day. Like, in a sense, it it was in the background more than I think kids and parents anyone with type one lives today. I don't know. And maybe that's just me. Maybe that's me, I don't

Scott Benner 48:09
know. Let me offer a different perspective. You got diabetes at a time where they expected your life was going to be shorter, and this was the best they could do for you, so they didn't really pay attention to it. And then you got lucky, because at the end of the 80s, when the faster acting insulin came, you got scooped up. But if you would have been diagnosed in 1963 what you'd be saying right now is completely different. You know what I mean,

Jaime 48:31
that's true, yeah, that's true. And somehow, I was treated at Jocelyn Diabetes Center as a kid, so I had the best treatment there was in the country, right? Yeah. And

Scott Benner 48:41
still, the best treatment there was in the country was, shoot this in the morning, shoot this at night. And if you get dizzy, have a piece of candy, right, right? What I was going to say then is, the rest of it is, I've seen this over years. I mean, people who are kind of like, you know, have had type one for a longer time, or got diagnosed long ago, or, you know, had a kid that was diagnosed back before there was monitoring and everything. And they always say, like, they say exactly what you said, Oh, we just ran around. If we got dizzy, we ate something. It was fine and blah, blah, blah, but you don't really know if it was fine and it wasn't fine. Yeah,

Jaime 49:15
I'm sure we were high and we were low, but it didn't affect our mental capacity. You see, yeah, maybe yeah, gonna cause complications later on.

Scott Benner 49:23
But Right, right. There would be some people who might call that blissful ignorance. But now you have the opportunity, sense, yeah, yeah. Now you have the opportunity to, if you want to manage this out to the nth degree, if you want to, and then at least it puts it in your hands, and you can decide, I think that's, you know, the option is there for people who can't handle it for reasons of, you know, stress or whatever, they'll find a different way to manage but I like that the opportunity is there for the people who want it. Yes, yeah, that's all. Anyway, I think that's interesting, by the way. I didn't mean to say that. I think you should feel guilty. I. Was just, I've spoken to people who do, and I was oh, no, yeah. I know. I don't. I do feel very I felt sad, yeah, no, of course, yeah. The stuff I feel sad about for my kids, you know that aren't a life altering disease. I still feel sad for things all the time, you know, experiences that they have, but I was like, Oh, I wish I would have went differently for them. Or, you know, I wonder why this couldn't happen. Or, like, Yeah, I mean, that's just being a parent. That part's that ain't going away. Is there anything that we haven't included in your story that we should have? I want to make sure that this is a nice, tight bow for you, and everything's here. I think we covered most of what I wanted to talk about nice. Well, do you want to, like, flip back around for a second and give people a little more? Because when you first signed up, you signed up to talk about FMLA. Oh, yeah. What did you want to talk about? About that? Like, because we can include that here in the last couple minutes.

Jaime 50:52
So I use FMLA for Carter's treatment, right? But I have both type one diabetes, and then I have a neurological disorder called dystonia. Meant a lot of years I had terrible pain in my neck, but I had scoliosis as a teen, you know, founder and screening, I had an injury as a teen my neck, a sweating accident, right in my neck, and then I had a car accident in my early 20s, when I was in college, and about six months after the car accident, terrible pain. And for years that I'd go to the doctor, this pain is so bad and like, well, your muscles relax and take some Advil, go to pt. It didn't, it wasn't making any improvement, like, only a very small improvement. And finally, after this, having this pain for like, 15 years, I was diagnosed with dystonia, which is a very rare neurological disorder, and there's a treatment for it, Botox, and the other similar medications, similar to Botox, that's injected about every 12 weeks into the muscles by a neurologist. For years, my neurologist told me, I don't use it for diabetes, but I just want to explain the situation so other people understand how they may be able to use it for diabetes, for ongoing, chronic health issues, right? I don't feel the need to use FMLA for diabetes, but for my neck pain. For years, my neurologist told me, Jamie, what's going to reduce your neck pain the most is working less at the computer. And I would just sort of laugh, like, that's funny, right? I'm the primary breadwinner in my family. I make two thirds of the income in my family. It was just a funny thing to me, like, what are we going to do move out of our house if I work less than a computer,

Scott Benner 52:23
you know? Yeah, maybe we could eat every other Thursday.

Jaime 52:27
I don't know. I just, I never did it. And then the pain was getting worse, and I was felt like it was really affecting my mental health to be in pain. So, yeah, standing at the computer, I stand and I sit, but the end of the day is the worst, because I've been there for eight hours, you know? And then that's when you interact with your family and you're in a bad mood because you're in pain. And finally, I'm like, You know what? I'm going to try to work less. Now, the type of job that I have, no one works part time. No one, right? It's not an industry where I work for a big publicly traded company, I have a pretty senior job, senior director level. You can't be like, Hey, can I work part time? They'd be like, What are you talking about? No,

Scott Benner 53:09
you could quit or go to hell.

Jaime 53:13
I mean, no, your job's a full time job, but FMLA covers 12 weeks per year of leave, and you can use it intermittently. So I talk, you know my doctor again, Hey, Jamie. I'm like, You know what? Yep, let's do it. He's like, Well, I really think it should be two days. I'm like, that's not going to cover that. I can't take two days a week because the FMLA is going to run out. So you can take one day off a week every year and use FMLA. Okay, so I'm like, well, write it for one to two and off we go. And I talked to my manager, and my manager said, you know, they just referred me to an outside company, you know, reviews the FMLA form. Here's the form. And I debated that too, Scott for so long, just even doing I'm like, I felt like a failure. Like, why can't I work? Why can't I manage this and work full time? And right? Am I limiting my whole career? Like a lot of my identity is, is associated with, like, doing the work that I do. It's very important to me. I like it a lot. It's like part of who I am, you know. So I almost felt like I'm failing, or I'm failing or not able to progress in this important way, like maybe this is going to limit me in the future. But I just ended up deciding I don't care. I can't be this uncomfortable all the time. And so that was it. It was approved in one day. And I don't work on Fridays. Yeah, my calendar is blocked, and that's it. So, you know, for diabetes, it would be the same thing. You can also use ADA for diabetes, because it's covered as a as a disability under ADA. So if you need accommodations in that way. Right? As I understand it, FMLA actually has slightly stronger protections. If all you need is is just one day, which is what I'm using right now per week. You can use it by hours. You can use it to they have to accommodate. If you have to take your kids to a doctor's appointment at 2pm they have to let you go, you know, yeah, you have to. If they're not letting you go, you use FMLA, you have to, right? I've had no pushback at all. And every six months, the form gets filled out again, and off we go. Well, it's interesting.

Scott Benner 55:28
I appreciate you sharing that as well. Thank you. Yeah, this was lovely. I appreciate you doing this. Have you heard from other people who have done t, z yield, like, has the process been as disjointed as yours was?

Jaime 55:40
So actually, I should there's a Facebook group called Tea sealed families, okay, and it's grown a lot. There were a few 100 people in it when I joined in January, and it's grown by hundreds. It's in the 1000s now, I think. And so you can join there and ask questions that people are really helpful about, you know, answering them. People post their their pictures of their kids and the treatment, and, you know, say how the treatments going. People do have trouble. I think I had a lot of trouble because of the type of health plan that we were in. So why is there so much trouble with this treatment? It's an infusion. Endocrinologist, don't do it. Infusions. There's no infusion an endocrinologist does. So this is like, the first time of this type of treatment for the entire specialty. You know, that's weird. It's also 14 days in a row, and most infusion centers are closed on Sundays. They've got to figure out some way around this Sunday closure, which isn't always easy to do. So I don't know. The drug has some challenges in terms of administration and how it works, yeah, yeah.

Scott Benner 56:45
Well, hopefully as time goes on, they'll stream better streamline it. Yeah, that's interesting. Okay, all right. Well, hey, Jamie, thank you so much for doing this. I really do appreciate it. Yeah, thank you, Scott. Well, it's my pleasure. Can you hold on for a second? You thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about Medtronic mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology for the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link. Medtronic diabetes.com/juice box. Us. Med sponsored this episode of the juice box podcast. Check them out at us med.com/juice box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med, hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Are you starting to see patterns? But you can't quite make sense of them. You're like, Oh, if I Bolus here, this happens, but I don't know what to do. Should I put in a little less? A little more? If you're starting to have those thoughts, you're starting to think this isn't going the way the doctor said it would. I think I see something here, but I can't be sure. Once you're having those thoughts, you're ready for the diabetes Pro Tip series from the Juicebox Podcast. It begins at Episode 1000 you can also find it at Juicebox podcast.com up in the menu, and you can find a list in the private Facebook group. Just check right under the featured tab at the top, it'll show you lists of a ton of stuff, including the Pro Tip series, which runs from episode 1000 to 1025 Hey, what's up? Everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording, doing his magic to these files. So if you want him to do his magic to you wrong way recording.com. You got a podcast. You want somebody to edit it. You want rob you.

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