Scott Benner 1/29/21 Scott Benner 1/29/21

#434 Splitting Long Acting Insulin

Jenny Smith in the house!

Jenny and Scott talk about the possibility of splitting basal insulin for type 1 diabetics using multiple daily injections.

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

Scott Benner 0:00
Hello friends, and welcome to Episode 434 of the Juicebox Podcast. Today's show is with Jenny Smith, Jenny and I are going to talk about long acting insulin for those of you who are on MDI. So insulins like love Amir lantis, tresiba, stuff like that long acting, which Jenny corrects me about because I want to call it slow acting. But Jenny is older, and she's had diabetes for a long time, so she remembers insulin, it was slow acting. Anyway, let's get started.

My friend Jennifer Smith holds a bachelor's degree in human nutrition and biology from the University of Wisconsin. She's a registered and licensed dietitian, a certified diabetes educator and a certified trainer on most makes and models of insulin pumps, and continuous glucose monitoring system. systems. I didn't say the Ask the first time and most just pretend like but and continuous glucose monitoring systems. She's on the show today, to help me talk about long acting insulin for people were using multiple daily injections. Now if you're pumping, we still, we talk a little bit about the ideas of how basal insulin works and how to create coverage for different things. So I don't think the conversation wouldn't be valuable for you. But this one was definitely done with people who are injecting in mind. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. Now after all this, if you'd like to contact Jenny, you can find her at her real job at integrated diabetes.com.

I'd like it if you could consider supporting the good work that's being done by the T one D exchange, your participation will take just a few minutes. But the impact of your kindness will last forever. Because the T one D exchange is looking for type one adults and caregivers who are us residents to participate in a quick survey that can be completed in just a few moments right from your home, on your phone or your computer. And after you finish the questions which are very simple, I think it took me maybe six or seven minutes to do them. You'll be contacted annually after that just to see if there's any updates to your information. But other than that, there's nothing left for you to do. And this is 100% anonymous, completely HIPAA compliant. And it never requires you to have to see a doctor or go to a remote site. But it does allow you to help with the research being done around type one diabetes. The T one D exchange is building the most robust Type One Diabetes data platform in the United States. And it's using it to drive meaningful research and innovation in treatment prevention and hopefully one day a cure. With their partners, they work to increase patient access for care resources, to promote education, and advocacy for policies that help the Type One Diabetes community, these things lead to better, longer lives. For everyone living with Type One Diabetes. If you can take the time to do it, please visit them at T one d exchange.org. forward slash juice box. Thank you very much. Jenny, I want to talk about slow acting insulins for people using MDI. Because I always tell people that the difference, the main difference between pumping and not pumping is well, if you're pumping, you don't have to inject yourself a bunch. And if you're pumping, you have access to extended Bolus features and manipulating your basal insulin from turning it off to temporarily putting it up or down. And to me, those are the real differences between pumping and MDI. I don't see a bunch of others,

Jennifer Smith, CDE 3:56
the dose two from the standpoint right? I mean, in terms of especially a little little are really sensitive, if all you can do on MDI is half a unit. Or if you've got really good eyeballs, and on those half unit syringes, you can get a quarter of a unit which I can can be done if you but it's again, it's not exactly right. But I mean, if you're somebody that can take point 05 or point one, and it turns things around for you, then MDI is not going to ever allow that

Scott Benner 4:30
right. And then thinking specifically about being an MDI patient and your slow acting insulin. So let's list them because I'm not I can do the old ones Lantus. levemir. I know tresiba because people seem to love that but there's another one right?

Jennifer Smith, CDE 4:46
Oh, so not so. You mean long acting?

Scott Benner 4:49
Yes. I call it slow acting. You call it long acting?

Jennifer Smith, CDE 4:52
Yeah, it's long acting. And yeah, there. You're right. There's Lantus is old left Amir to jail

Unknown Speaker 5:03
to jail was the one I couldn't see. But

Jennifer Smith, CDE 5:06
then there's also you know, Basil glar, essentially, which is like Lantus.

Scott Benner 5:11
Okay. They changed that they changed. Okay.

Jennifer Smith, CDE 5:14
Yeah. So those are the those are the main, long acting sort of 24, what they call 24 hour acting.

Scott Benner 5:22
And if I put you in charge of the world, and you had to give people long acting insulin, which brand would you give them?

Unknown Speaker 5:29
Oh,

Scott Benner 5:31
you should have saw the pressure on your face when you were given free rein over the world just now. You're like,

Jennifer Smith, CDE 5:36
Yes, it was. Like being told that I get to be like, controller of everything. Yeah. Just insulin. That's that's not as fun. But I think that there are there are two, I wouldn't really only just pick one. I had to only pick one. I'd probably picked receba. Okay, honestly, second line, I would still go with the age old lantis. Okay, I really would. And I think that lantis to Jao probably would be kind of like, right with each other. And this is from both like this, his professional opinion in terms of what I've seen with all the people that I've worked with. And then really, fourth in line would really be more like 11 year. Okay. So I mean, by no means am I saying if you're on the level of your and it's working for you, that's bad or whatever, again, you're a diabetes. Is that what works? Well, it

Scott Benner 6:33
works works. That's no trouble at all. Yeah, what I started to run into this is going back a long time, this is this is Time Machine going back. Arden's using. They started on Lantus. It burned her we moved her to 11 year lever mirror didn't burn, we were all good. A little while in dardennes diabetes, I started seeing what I thought it's funny now because people have glucose monitors. They're like, yeah, it's so obvious, but it wasn't obvious back then, when I had a freestyle meter, it looked like it came out of a bubblegum machine and a bunch of needles, you know. And, and so I started thinking, I'm seeing Arden back then I thought of it as being insulin resistant. But her blood sugar's going up about 18 hours after I would inject her level mirror, right. And so I start, I'm online trying to figure it out. And again, for people nowadays, online back then was not the same thing online now is, and I come across Jenny, I don't I've never told you this. I know I haven't cuz I've never said this on podcast, I came across a web forum that should have been password protected. That wasn't where a where pharmaceutical sales people talk to each other. Okay, so there's a bunch of farmers A long time ago, this was a long time ago, I found this web board where pharmaceutical sales people talk to each other. And I found a thread where they were lamenting that the slow acting insulin that they were selling doesn't always last 24 hours, the way the label says it does.

Jennifer Smith, CDE 8:03
Say that, for that particular long acting. It's probably at least 90 if not more percent of people cannot use it once a day,

Scott Benner 8:15
once a day. And so that was a light bulb for me. And I was like, Okay, well, then what do you mean like so now I'm sitting there by myself. I don't have a podcast, I listened to her anything like that. I'm not reading anybody's blog. And I'm like, What do I do if it doesn't last 18 hours. And then I was like, What if I give her some of it? Every 12 hours. And that's the first time I split. Arden's love a mirror. I couldn't get a doctor to tell me to do it. I couldn't get anybody to tell me to do it. And, you know, so I started off with 5050, if she was getting four units a day, excuse me. If she was getting four units a day, I put two in in the morning, and 12 hours later, I put two more in. And then I started being like, Huh, like at night, she's staying stable. But during the day, she's a little high. So it's like, let me try two and a half in the morning, and then two at night, and I just kept messing with it until I got it right. And it messes with your head a little bit when you first started because your picture this 24 hour clock in your head, you're like where do I stop? And what's that going to do to success? You worry so much about it when you go to do it. But splitting that insulin absolutely was a game changer for Arden. And do you and I want you to tell me how you talk to people about splitting so and you would you wouldn't split receiver right because receiver actually seems like it makes it like 18 hours or a day and a

Jennifer Smith, CDE 9:40
hacker actually trusts eba from I mean if you pull out like the pamphlet details and all that kind of stuff. I mean it's a 24 hour acting insulin but the action profile is a true 24 hours at a minimum meaning many people know that it does last longer than that 30 hours, 36 hours, which also in terms of like dosing allows a little bit of leeway. Let's say, You were always really strategic about making sure you took whatever basil it's with, let's say it was love Amir once a day or lantis once a day at like 10pm. And it had to be 10pm every night or you notice like you did that after that it was just all out of luck because it was gone, or it was dissipating. Right? Not so much with Chris Eva, you could have leeway on erring on the side of later. If 10pm was your dose, but you didn't get to it until midnight. For the most part, you could be pretty okay or you would be pretty okay being sort of delayed in getting to taking it. But that's not really the case with like your lattices and your love Amir's. So for splitting like 11 year in terms of what we usually do, when it's really evident in data, kind of like you were following, even with the sort of rudimentary stuff,

Scott Benner 11:05
paper a pen and a little, I wish you could all see the meter. It was just like, it felt like it was gonna fall in half sometimes.

Jennifer Smith, CDE 11:13
Plastic carry, I mean, they're all plastic, but like, this was really like, not like that. Yeah, yeah. But you know, you we look at data and we say, Okay, this is clearly not serving you well. In fact, a good like basil sort of evaluation on like 11 year would be when you dose it, and you think you've got the timezone where it's dissipating in use, just don't Bolus and eat after that and see what happens to your blood sugar. Right? That's a really good way to analyze about the stoppage point, which then would give you more detail to splitting it, we do still try to do about a 12 and 12, in terms of hours in, you know, break. So morning, 6am, evening, 6pm, or whatever you want to do like that. We start with a 5050. Unless there's very definitive data, again, that shows a time period of the day with a lot more sensitivity and a time period where there's a lot more resistance. So let's say once we start splitting with 5050, the overnights are like, God, you're dropping, you're dropping, there's I gotta feed and feed and feed and we're in the daytime, you need more like you saw, right? So then we would really probably do more like a 7525 kind of thing more in the daytime, less in the evening or opposite, maybe less in the daytime and more in the overnight, especially if growth is a potential issue or there's stuff that's causing rises overnight. So the breakdown, we start with 5050. And then we go ahead with looking at records to see how to adjust it. Yeah.

Scott Benner 12:46
And in this again, to be clear, this isn't something you would do with anything other than Lantus or levemir.

Jennifer Smith, CDE 12:53
Correct. And for the most part, even Lantus, most, maybe not even lentils don't really need to split lantis, like that.

Unknown Speaker 12:59
It had

Jennifer Smith, CDE 13:03
in little doses, sometimes it becomes necessary, because the smaller the dose, the less lengthy the extension of use to a two to a true 24 hour gotcha. And same thing with a baseline basal insulin, that's a very large dose, we see large being more than about 40 units at an injection point. While you might take it once a day, you know, 8pm at night, anything more than about that 40 units in one pop, we split into two injections, gotcha. If you're taking 60 units, 30 units in one hip 30 units in the other hip or butter leg or wherever they're kind of putting it because that big depot under the skin. It's a lot. But

Scott Benner 13:51
is it true that those two those those insulins go under the skin they crystallized and they kind of melt away? Is that the functionality of it? Or am I

Jennifer Smith, CDE 14:01
wrong? I guess in terms of chemistry, that's kind of a way to look at how it doesn't get all absorbed, like our rapid acting insulins do like, you know quite right away or so to speak. Um, it forms more of like a solid like crystal, I guess.

Unknown Speaker 14:15
Yeah. And then and then it just sort of gets used slowly.

Unknown Speaker 14:18
That's not a bad way to describe it.

Scott Benner 14:20
I made that up years ago for the podcast or for the blog. And I just couldn't I was trying to explain it to somebody one day I'm like, just imagine it goes inside it kind of isn't liquid anymore. And then it just slowly kind of melts away and gets used up over time. It's time like throwing water

Jennifer Smith, CDE 14:34
hot water into the air on a really freezing cold day it crystallizes and then I probably

Scott Benner 14:38
could have just had time released now that I'm thinking of it, but then we will visual is more fun. It is more fun that way. So the reason I bring all this up is because watching people manage with MDI and getting this in their head that hey, I put that in now that's gone. I don't have to think about that anymore. Like that. It's it's, it's it's another avenue for me to watch people under represent how important their basal insulin is. And I guess then if I'm telling you what the real difference between pumping and not pumping is, is the ability to change your basil on the fly, day after day or segment after segment is kind of huge now I'm not a big proponent of having like 1000 basil programs, I'm I try to keep them pretty close, and manage everything else with with boluses. But there just can be no doubt, especially if you're a hormonal person, a woman who gets her period a little kids who are growing. I'm watching at times, like, like, I'm something it's a little exasperated right now and kind of blown up to make the point. But Arden is trying birth control pills to regulate her period. So poor Arden's period is not great. It comes, it literally doesn't stop, like in the last 60 days, Arden, you know, she hasn't had four periods, but she's had four episodes of bleeding that have lasted at least 11 days. So she gets 11 days, a five day break, and it comes right back again, right? So we're trying to regulate it with the birth control,

Jennifer Smith, CDE 16:15
not like a lot of women do that,

Scott Benner 16:17
please, whatever works, whatever makes her feel better, I'm good with. But the point is, is that we introduced more hormones into her body. And I watch her Basal needs change significantly. And I think, what would another person do? Like what do people do when they're on MDI and their I don't know, they're shooting five units in the morning. And that works for them, right? And then all of a sudden, something happens that puts their need up, it's kind of the last thing they would think to do is give themselves more basil. If they run empty, I think I think they'd be like injecting and injecting trying to stop highs and everything and just think, oh, why am I getting high diabetes? You know, instead of that?

Jennifer Smith, CDE 16:57
You're just the dose? Yeah, totally an MDI, which is what I had to do in terms of the same scenario as Arden when I was on MDI. And I had my period, I had to take about 20 to 25% more insulin in the days before it started, right, in order to calm down the impact of those hormones.

Scott Benner 17:22
100%. Like, it's well, but here's what I see the fear from people, which I don't not understand. How do they know how much? Because once they put it in there, it's in there, right? When I do it with a pump, I just go, I don't know, turn it up to this. If that didn't work, little more, was that too much? Take it away. But once you make the decision, I usually get five, I'm gonna put in seven, you can't take it out again, you know, it's in there. And that's got to be the piece that stops people from making the adjustments, don't you think? Like, that's the fear part that gets to them?

Unknown Speaker 17:57
Yeah, I mean, in general,

Jennifer Smith, CDE 17:58
depending on why you think the increase is coming. There's a general idea of about how much you might need more. So for a woman again, in that time of the month, typically somewhere between about 20 to 40%, more baseline insulin is needed to calm the impact of those normal monthly hormones that are cycling. For things like an illness, you know, like a nasty cold or whatnot. Most people need at least 25% more insulin on a basil level for an illness. So having some parameters to start with, for known situations, can help give you I guess, a math equation to figure out how much more to add in this scenario. If it's just like, oh, today, I'm running higher. I wonder if it's going to happen tomorrow. I need a little bit more data than just today. Don't be like, Oh, I'm running, you know, 70 points higher. I'm going to add four more units to my Lantus dose tonight. See if that helps, it is not what I would recommend doing.

Scott Benner 19:08
Yeah. But you have to you have to incrementally move. And it's just I feel for people who have that. Well, once it's in there, it's in their fear. Because I remember the first time somebody showed me an insulin pump, the first thing I thought was I can manipulate basal insulin. That was my most excited idea about pumping. I'm sure Arden did like not getting shots, but that's what I was thinking about. And it just so Okay, so you might need to split lava mirror, you don't think you'd need to split lantis tresiba can last much much longer. So it's on a different cycle. Here's a really out of left field question that maybe you're gonna tell me I'm an idiot on. But now that we have this conversation, I started thinking instead of splitting the lever mirror, should I have just shot less every 18 hours? Would that have worked in that scenario?

Jennifer Smith, CDE 20:01
If you were, I mean, if you gave less in an 18 hour time period,

Scott Benner 20:08
would it have made it this far? Maybe not, maybe I would have to shoot the same amount every 18 hours. Right? Let's see, back then I didn't think about and this is kind of the next little bit I want to talk about here. And I'm gonna keep it all in one episode. Back then I wasn't thinking about timeline. So we've talked about it before. But I kind of segment Arden's management in my mind into timelines. So there's a 24 hour timeline that I step back and look at that, to me is how I figure out basil. And where I see whether or not I've Pre-Bolus Well, or chosen the amount of insulin for food while But then I also think of timelines of meals. So in terms of how long is food going to be in our system? And where is it impacting or along the way. And so there are times that I change the impact of the insulin through the timeline of the meal. That's just sort of how I think about it. So there's a bigger timeline, that's 24 hours, then there's a smaller timeline that to me begins with a Pre-Bolus. And then any kind of fat or protein rise that I'm going to see. And then when the insolence out of her, those are sort of the two kind of ways that I think about it. And just now while we were talking, I thought I wonder if I couldn't have manipulated that basil insulin. Instead of thinking of Arden as a 24 hour timeline, what would have happened if I thought I was like, sure, whatever

Jennifer Smith, CDE 21:27
you did, and I think in hindsight, and that's the reason I wouldn't have, I didn't kind of comment on doing that. Because it, it becomes a little bit harder than because that 18 hours is always changing the time of 18 hours. Right, right. I mean, if you're going from taking it at six o'clock in the morning, 18 hours from there,

Scott Benner 21:50
what I really even think to do it, then

Jennifer Smith, CDE 21:51
would you even think I mean, you'd have to if you really did think it was definitely 18 hours and the dose was right, because the time in that 18 hours was spent in target along with the boluses. And everything was jiving the way that it was supposed to. It was after 18 hours that everything went sort of kakui. Yeah, then sure you could dose every 18 hours, but then you really have to be on top of setting a reminder that says this is 18 hours, this is time to dose.

Scott Benner 22:19
Yeah, it doesn't lend to what I'm saying doesn't lend to the idea that time is kind of artificial. Like you don't realize that till you really think about it. Like you're just running your life by a clock because we've all agreed to do it. Yeah. And so. And I'm thinking of it as a person who pumps insulin into his daughter, not as a person who shoots it anymore. Like what I really think too, like you said, 7am would turn it into what, like one in the morning or something like that, like what I'd be like, Hey, you know, well, probably not. But it still was an interesting kind of like exercise to consider just now like, like, I'm not saying you should do it. I've never done it. I can't stand behind this idea at all. It just kind of popped into my head as we were talking about it. Yeah. So okay. So when you're using tresiba, as example, your timeline, your macro timeline isn't even 24 hours. It's longer than that, but you still shoot it every 24 hours still

Jennifer Smith, CDE 23:16
give it every 24 hours. Exactly. Which again, in terms of use, I don't have a good amount of people who are using it because the majority of people just don't want to stay on MDI so long anymore. They just don't. I have I've had to in the past year women that I've worked with through pregnancy, who are MDI, and did it through pregnancy, and they were actually 11 mirror users, okay? Because it seemed to actually work better in terms of that dosing adjustment strategy gave you more

Scott Benner 23:57
flexibility to give

Jennifer Smith, CDE 23:58
more flexibility.

Scott Benner 24:00
Gotcha. How often do those people's levels change? Like how often are they their level are going up or down frequently?

Jennifer Smith, CDE 24:10
Specifically in pregnancy Yeah,

Unknown Speaker 24:12
those two Oh yeah, a

Jennifer Smith, CDE 24:13
lot. A lot. A whole pregnancy.

Scott Benner 24:16
All right. Now this is the eye you're losing me I've lost the ability to make eye contact with me while I'm talking now Jays The only person I look at long interview well while I'm talking but I'm so far in my own head thinking about like different timelines and overlays of influence everything like I'm just but and I know that sounds like probably nerdy and too deep. But I didn't know you could be nerdy about using insulin but I now learning it's possible that I am. So but there's a way to layer it on there that creates all that and and even thinking about that receive a piece like really think about that for a second. You shoot it every 24 hours, but it lasts longer than 24 hours meaning that somehow when you initially shoot it, it's got some sort of A ramp up period. That's because the beginning of the new shoot and the end of the old shoot are working together, kind of overlapping. And then there's a middle section where the new shoot is the only thing happening. And then the new shoot leaves a tail that you overlap with. Oh, that's good. I love that. I don't know why I like

Jennifer Smith, CDE 25:19
it from the couple of people I've worked with with tresiba. One of the times of day that most people have trouble with, of course, is the morning, right fasting time, breakfast time. So if you're taking your trusty bus in the morning, you have a potential for actually improvement in the aftermath of like a breakfast because you have that if there is for you, that like window of time where you've got the new one going in and ramping up, and the old ones still potentially dissipating out. So a bit of a layering effect there.

Scott Benner 25:56
I was talking to someone recently, and I said, Look, you don't have to do this. And I was like, I'm not saying you should. But I'm wondering if I was you? Would it be interesting to get up every night just for a week at 3am and shoot your your long acting insulin then to see if that quells the feet on the floor and the rise in the morning? Because you're getting up. All this is hitting you that insulin goes in. It's not working yet. But what if you just and I was like, obviously, it's not a long term fix. But if but if you were on a pump, I would say to you, four or five o'clock in the morning, I think you should ramp your basil up to get get ahead of this thing. I was like, I wonder what would happen. I wonder if that person ever did that.

Jennifer Smith, CDE 26:39
And they were inject they were? Yeah,

Scott Benner 26:41
yeah, they were empty house like just tried for a week to see what happens like set the set the dejection up, put it off the side of the bed, set an alarm. And then shut your eyes and go back to sleep and see what happens. I was like, just for an experiment. But you know,

Jennifer Smith, CDE 26:54
I think that's actually kind of one of the reasons that I'm so it's really hard for me to sleep in. Because from whence I was diagnosed. I mean, I had really, really old insulin. I mean, I had what was el insulin, the cloudy mix it up, you know, regular insulin. And that was even more than our current long acting insulin. That was very much you were on a time schedule. It was take it at this time, eat at this time have snacks at this time, because this is the action profile of the insulin. You have to meet it with food, correct?

Scott Benner 27:32
Yeah, there's no there's no other option. So you think to this day you can't sleep in because you're used to getting up to give yourself

Jennifer Smith, CDE 27:37
I really think that's it. I mean, in high school. And then in college, I mean, I kind of offset it in a way I never, I never didn't take my insulin on time. But I would set the alarm, get up, take my basal insulin, and then just go back. Once I was on like Atlantis, you know, I couldn't I didn't necessarily do that with my L or my lenti was what it was called. And my regular because I mix those in a syringe. So I didn't ever do that. But I did do that with lambdas because I was like I want to sleep in so I just I would take it and then go back

Scott Benner 28:20
to this pandemic lockdown stuff. I have lost all semblance of understanding of what time means. Nothing matters anymore. It doesn't matter. The other night. I was it was last night. I was putting the podcast together and I got done. Put it online. I was like I'm gonna watch TV. I looked up on like, it's midnight. Like, what am I doing? It didn't even matter. We're eating it odd times a day. No one cares. No one knows what day it is. It's like it's I know,

Jennifer Smith, CDE 28:49
if I didn't have a calendar to go by every single day. I wouldn't remember what day of the week it was either.

Unknown Speaker 28:56
Who would even know? Like,

Scott Benner 28:59
even it's almost been in the house for like the rest of us. I think we're on 10 months now. Like more than 10 months. I I don't know somebody asked me like what would you do if this was over right now? And I was like go to an island. Yeah, like just get on a plane and fly somewhere warm and sit down for a minute just you know, to see something different. I don't even know like but that was what it reminded me of when you said that. Like I sometimes the kids get up they do something for a couple hours. They go back to sleep again. They get up again they're Arden's done school at 1230 in the afternoon. Like why are we getting the kids out of bed at 630? If like, if nothing matters. I don't understand anything. It's just I if I sat here and told you the number of television shows I've watched to completion in the last 10 months. It's embarrassing. It's embarrassing. I off the top of my head Friday Night Lights. I've rewatched mash. Mash it was like 11 seasons the whole thing like the whole damn thing. Friday Night Lights on Halfway through new girl now, I just watched a reality show where glassblowers competed in a competition. I loved it. These are not things I would normally watch on television. Now,

Unknown Speaker 30:13
if you watch the Have you watched the tattoo one?

Scott Benner 30:17
No, but I will know that you said

Jennifer Smith, CDE 30:19
it's interesting. I can't remember. I think it's on Netflix. But yeah, it's a whole. I've only watched a couple of them with my husband. But yeah, it's a competition between like the top rated tattoo artists being judged by one of the judges is some big like, movie, not movie music. I can't remember which band he's in Tommy Lee.

Scott Benner 30:43
I'm guessing

Jennifer Smith, CDE 30:44
anyways, these tattoos are like amazing. Phenomenal, like, amazing.

Unknown Speaker 30:49
But there you go. There's

Scott Benner 30:50
a new one that was last blowing. I was like, this is fascinating. Like, I'm just I watched the watchman. I swear, I should sit down and make a list. And I'm always doing something else like I am. Like, I watch while I'm cooking. Or even while I'm working. It's on a different monitor or something like that. I don't

Jennifer Smith, CDE 31:07
really sit idle and like, I don't

Scott Benner 31:09
remember the last time I did that. But even that bothers me. Like, it's not that I'm all for like laying around watching television, but nothing. And then I never feel like I'm getting anything accomplished. Which is another horrible feeling. And I know this is bad. Like we need to, I want to take my vaccine and I want to go back and go somewhere. Yeah, I'm gonna get a vaccine. I want to go outside. You know, here. In this time, I've taught myself to smoke BBQ. make pizza dough, so that I can actually make a pizza like better than the one you would get at a pizza place. I bought an oven to make the pizza dough. And because I couldn't get my oven to get hot enough jet. What else am I gonna do? And somebody just bought me like a little beginner drone for Christmas. I'm teaching myself to fly a drone. Why? I have nothing else to do. So I'm trying to do something

Jennifer Smith, CDE 31:57
with sourdough to

Scott Benner 31:59
No, I. But I think about it.

Unknown Speaker 32:05
conversation about thinking about it.

Scott Benner 32:07
I think about it. But there's so much going on that I don't understand about starters and like live yeast and everything. I but trust me, this goes on six more months. I'm gonna teach myself how to build a brick wall next. Like I wonder how how do you do this? Like, I don't know what's up. And and to top it off before you go. A deer dropped dead next to my house the other day. Like went up into my land

Unknown Speaker 32:31
had a heart attack?

Scott Benner 32:33
I don't know. It went up in my landscaping laid down under a bush and died. Like you watched it happen. No, I walked outside. And I was taking down Christmas lights on the patio. And I'm like looking forward rolling lights up. And I look away and then I can hear the voice in my head Go was that a deer? Like, like, Look again, and I looked back and there was a deer laying under a bush. Now I'm staring at it. That doesn't seem like something I've ever seen before. Hmm, that thing's dead. So I go over and I'm like it's dead. Now what

Jennifer Smith, CDE 33:05
it was, was it still warm when you prodded?

Scott Benner 33:08
I don't think it was warm, then. So luckily, it's been cold outside or probably we would have noticed it was dead sooner. So I call the township and I'm like, Hey, what do I do? And they're like, well, we'll come get it. But we can't come on your property. And I went, but

Jennifer Smith, CDE 33:24
you had to drag it to the curb. I almost said

Scott Benner 33:25
to her, I make podcasts like I don't know if you understand who you're talking to right now. So yeah, I had to get a piece of rope, tie it up around its legs and drag a deer across my front yard out to the side. I don't know what else is gonna happen in this pandemic. But I would like it all to end because

Jennifer Smith, CDE 33:42
you don't live any wooded places like they would have gotten. I mean, this isn't deer hunting season. Shot just

Scott Benner 33:49
died under the bush somehow there's a pathway that goes behind all of my neighbor's backyards, where they make it from one piece of like woods to the next and they just walk through. And this one just I said to my neighbor sees me, you know, humping a deer across my front yard. And he goes, Hey, what's up and I was like, Hi. And and I said, you know, if this thing would have given up 50 feet sooner, this would be your problem. Like cuz he just made it over the property line. I was like, anyway, I feel bad for the deer. Then I had that problem. I was like, Oh, this poor thing, you know, but then there was another part of me going I think they carry ticks. Like get along. So I'm like, Who am I? I don't belong in this conversation. You know,

Jennifer Smith, CDE 34:33
typically do but not this time of the year.

Scott Benner 34:38
How would I even know that? That's ridiculous. All right. You have to go right.

Unknown Speaker 34:43
I do.

Jennifer Smith, CDE 34:44
realize we were like out of time.

Scott Benner 34:46
That's fine.

All right. I hope you enjoyed that. And if you're still here, I want to be completely honest with you, the next couple of minutes are going to be me talking about the advertisers. If you've been wanting to check one of them out, stick around, and I'll tell you how to do that. And if you don't, okay, you can go now. But first, let me thank the T one D exchange, and ask you again, to consider adding your voice to the work that they're doing. Remember, you want to be a T one adult, or caregiver who's a US resident, who has a couple of minutes to answer some simple questions that will go a long way towards helping everyone living with Type One Diabetes, check them out at T one d exchange.org. forward slash juicebox. There's links right there in the show notes of your podcast player. And of course, there's links at Juicebox podcast.com, if you forget how to get there. I also want to thank the rest of the advertisers, even though they don't have any ads on this episode. That's how much I feel good about them. And I'd like you to be able to get to them. So if you're looking for that Dexcom g six continuous glucose monitor, if you are using insulin of any kind, if you're a type one, you're a type two, go check it out. dexcom.com forward slash juicebox. And don't forget, if you get your health insurance through the Veterans Administration, the United States Veterans Administration, if you're a vet, I guess that's what I should have said if you're a US vet, go check them out. For sure. I think you might like the coverage that you find, but everyone has an opportunity to get a Dexcom g six by going to dexcom.com forward slash juicebox. There's a little bit of information you fill out and Dexcom is going to get back to you. If you want an absolutely terrific blood glucose meter, I suggest looking at the Contour Next One, and you can do that at Contour Next One comm forward slash juicebox contour makes an easy to use incredibly accurate meter that does not take up a lot of space in your pocket or your bag. Arden's been using it for quite some time. Now it is easily the most accurate, and handy meter she has ever had. What's next, let's see, Oh, I know. The Omni pod tubeless insulin pump, it is an insulin pump, it doesn't have any tubing to get caught on doorknobs. And also, because it doesn't have tubing, you don't have to take it off. It's self contained. You can swim with it, get involved in all of your favorite activities, take a shower, all the things where to pumpers would have to disconnect and you know likely have their blood sugar's go up because of it with Omnipod you won't have to on the pod would be thrilled to send you a free no obligation demo of the on the pod that you could actually try on and where to give it a little test drive of your own. It's nonfunctioning so don't worry, it's just for to get the feel, you know, my omnipod.com forward slash juice box, fill out the information, watch the Omnipod demo show up in your mailbox. I'd also like to remind you about touched by type one. It's a diabetes. org that does amazing things for people with type one. And all they want the whole world is for you to know that they exist. So check them out at touched by type one.org. They're also on Facebook, and Instagram. And of course my daughter carries the G Vogue hypo pen with her wherever she goes. Check it out at G vote glucagon comm Ford slash juice box. Okay, that's it. I have a little bit of time left, I want to thank you for listening for sharing the show with others. If you're an endocrinologist that recommends this podcast to your patients. Hit me up. I'd love to have you on the show. You could even be anonymous if you wanted to. What else? Thank you for the great ratings and reviews that you leave on Apple podcasts. And wherever you listen. And if you're listening online, please find yourself a podcast app. They're free. They're handy. Get in there and Subscribe, subscribe to the Juicebox Podcast. Oh, last thing. It's like the end of January. There's two more days left in January. And if it's not January 2021 anymore, you can stop listening now. But if it's still January 2021. And there's like a day or an hour or something left, download a couple of episodes for me, please. I'm right at the edge of milestone for this month. And I would just just try to push a little bit new meaning like go back and find a couple that you were like Oh, I didn't mean to listen that one downloaded. Or now's a great time to start with the diabetes pro tip series if you haven't, or the defining diabetes series. These are strewn throughout the podcast. I know the diabetes pro tip episodes begin at Episode 210. I gotta be honest, I don't know where the defining diabetes starts. But you can just search it right there in your podcast app, just defining diabetes and they'll all pop up and you can see them all I'm just blathering on now. I should hit stop but I don't even know what I'm gonna do with the rest of them. I think I might watch one division tonight.

That is the extent of my Friday evening. There you go. Now you know the excitement. I don't want to get off because I don't have anything left to do. I like talking to you guys. Thanks so much for listening. be back next week with more episodes of the Juicebox Podcast.

#433 Diabetes TrialNet

Carla Greenbaum, M.D. Returns

Carla Greenbaum, M.D., chair of TrialNet returns to the podcast to discuss research and type 1 diabetes risk screening. Get your FREE screening kit here.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to Episode 433 of the Juicebox Podcast. Today's show is sponsored by Omni pod makers of the Omni pod tubeless insulin pump, and they'd be happy to send you a free no obligation demo, all you have to do to get it is go to my Omni pod.com Ford slash juice box. And if you are looking for the most amazing continuous glucose monitor that I've ever seen, you're looking for the Dexcom g six continuous glucose monitor. And you can learn more about it@dexcom.com forward slash juice box.

Today we're going to be hearing from a returning guest, Dr. Karla Greenbaum, who happens to be running things over there at diabetes trial net. I really enjoy talking to Carl, I didn't realize how much I'd missed her until she got back on she's a real easy way about her. And I find it enjoyable to speak with her. So she'll be on in a moment to tell you all about trial net. But let me just tell you what it says right on their webpage trial net.org. Imagine a future without Type One Diabetes trial net is an international network of leading academic institutions, endocrinologist physicians, scientists and healthcare teams at the forefront of Type One Diabetes Research. We offer Risk Screening for relatives of people with type one, and innovative clinical studies, testing ways to slow down and prevent disease progression. Our goal is a future without type one diabetes. All right now let Carl explain to you what all that means. But trust me, this is not just some dry like oh research, you're gonna want to hear this. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please always consult a physician before making any changes to your health care plan.

Dr. Carla Greenbaum 2:06
I do want to say that, you know, me personally, I'm in the wrong generation. I don't really do a lot of social media. I don't do any stuff, really. But I get reports from the team all the time. And they're always highlighting, like who do people listen to? And you guys are there all the time? It's really, it's pretty cool. What you've created. I think it's pretty amazing. Actually,

Scott Benner 2:26
no, I I still I mentioned trial net all the time. When I'm talking. You know, especially when you're talking to parents who have you know, or prospective parents who have type one, but don't have kids yet. I always ask them I'm like, you know, would you look, you know, what would you think? I've gotten very, very thoughtful answers on both sides back from people. Yeah. But anyway, I guess like, let's just start with, just, you know, obviously, I'll do a lead up to it at some point. But sure, just tell me who you are. Give us your credentials and tell us about trauma.

Dr. Carla Greenbaum 2:58
So Carla Greenbaum, I direct the center for interventional immunology, and the diabetes program at benaroya. Research Institute here in Seattle. And I also am the Chair of diabetes trial net.

Scott Benner 3:15
And you've had this job for quite some time now. Right?

Dr. Carla Greenbaum 3:18
I have good. I've been involved in trial net. And actually, it's preceding study that diabetes prevention trial since the early 90s. And trauma, it started in 2002. And I was Vice Chair for a number of years, and then I've been chair, I guess I should remember about six or seven years now. Wow. That's terrific.

Scott Benner 3:37
So tell us tell me, I guess the the overarching goal of trial net is like, what's the Yeah, what's the thing? Yeah,

Dr. Carla Greenbaum 3:46
that's a good way to start that So first, maybe just say that, you know, what is trial debt? Right. It's, it's NIH funded your tax dollars, international clinical trial network, whose job is to save beta cells. And we do that both before diagnosis to the idea about prevention. And we also do studies, you know, after diagnosis to save whatever beta cells they're left. And, you know, I always think about that that's really the mission. But the secret to what we really do, or the hint to that is in our name of trial net. We're all about doing trials, that's our essence. That's what we're all expert in. And that's what we really, you know, aim to achieve.

Scott Benner 4:29
So if, you know, so I guess on some levels, you need people's samples who already have diabetes. And you also like, I know you tested my son. Long time ago now about eight years ago, my son got tested and did not have any, any bodies that that indicated that he might have Type One Diabetes one day. And we had to go into his my daughter's endocrinologist office to get trialnet drawls, is that still how it all works?

Dr. Carla Greenbaum 4:59
No, it's complete. difference was a great question. So maybe I should step back for a minute and just put the frame around this. So trialnet screens people for the risk of diabetes through our pathway to prevention study. And you can think about that as the funnel, it's the way to test an awful lot of people to find the few people who are unfortunately likely to develop diabetes, because that's really the people that we want to try to see if we can stop or delay the disease. So the first step is this pathway to prevention, which is screening. But as you're talking about, you know, in the old days, you have to go in and get your blood drawn, and you had to go into only a selected number of places. But now, you actually can get tested by going online and doing a consent online and you'll get a kit sent to you. You could test your with a kid at home, you could do that at home, and you put it in a kit, and FedEx comes and picks it up, and it's all free. So that is really a huge difference from sounds like when your child was screened A number of years ago.

Scott Benner 6:04
No kidding? How long? Have you been able to do it that way?

Dr. Carla Greenbaum 6:07
We've been doing that now for a couple of years. I would say of course, during this year of COVID, it markedly increased. So certainly during this past year, I'm guessing don't quote me exactly, but at least 60. But up to 70% of all people being screened are being screened by doing this online, simple home delivery system.

Scott Benner 6:26
Does it cost anything? On my own?

Dr. Carla Greenbaum 6:28
No. Well, it costs your tax dollars, but it doesn't cost you to participate.

Scott Benner 6:33
I just think that's really important piece, I just ignore what I pay in taxes every year trial net is free.

Unknown Speaker 6:38
Exactly, exactly.

Dr. Carla Greenbaum 6:39
But that's that that's really an important thing, right? We are NIH supported. And all the work that we do is free to any participant, not just the screening, but the follow up, you know, consultation with people who are experts about diabetes and diabetes risk. And all the monitoring, we do to look to make sure whether people are progressing in their disease or not, and participating in all the trials all that?

Scott Benner 7:05
Well. So if I'm making up things now, but if I, I send my you know, if I have type one diabetes, and my brother's like, well, I want to see if I'm gonna get it, we find out he's got some markers, and how many markers are there?

Dr. Carla Greenbaum 7:17
Yeah, that's a great question. There are up to five antibodies that are associated pretty reliably with Type One Diabetes. And so trial that will test up to all five, we don't test all five right away, we test two and then depending on those results, we will test on others. But that's what we would know, people who have only one antibody, they just come in on an annual basis to see whether or not or they come in to provide another blood sample to see whether they are developing more antibodies. Because everything we know now suggests that it's really having multiple antibodies that really puts the individual at risk for progressing. So that's our, our main group that we're looking for it Atlanta, buddy. So

Scott Benner 8:01
if I have multiples, so my friend yes scenario has multiples is what are some of the ways that you try to slow the progression down?

Dr. Carla Greenbaum 8:11
Well, the first thing when somebody has multiple antibodies is that we asked them to come in to do a test to see where they are on that path, right? whether their blood sugar's are still completely normal, or whether there's anything already abnormal, because that tells us which clinical trial that might be eligible for. So currently, we are running two different clinical trials for people that have multiple antibodies. One is using a drug called a bad acept or redsea. And that trial has been going on for quite a while now. And we're actually anticipating having the results of that trial before the end of 2021. And the second trial, the one that we're still recruiting for is using a drug called hydroxychloroquine, which has nothing to do with COVID. For the purpose

Scott Benner 8:59
of our study, we now all know what it is.

Dr. Carla Greenbaum 9:01
So yeah, we now would, but the good news is it is an oral medication that people can take. And so people who have multiple antibodies, and have normal glucose can be in this study. And the idea is to figure out whether hydroxychloroquine can slow or delay people progressing to getting diabetes. And it's a really interesting drug because it's been around for more than 50 years for totally other purposes. But it is now widespread use for people who live with arthritis, which of course, is another autoimmune disease like diabetes. And that's true in both kids and adults. So there's lots and lots of information about this drug. And all of that suggests that it could slow disease if it's given early on. And so that's why we're doing that study. And that's ongoing right now.

Scott Benner 9:52
Is that medication, what is what it does centered around inflammation.

Dr. Carla Greenbaum 9:56
Yes, yes. So to a certain extent hydroxylase When works about me how to explain this, there's different of course arms of the immune system. And one of the early steps in autoimmunity we believe is what we call turning on the innate i na te immune system, which is like your immediate response. And this is what we think hydroxychloroquine interferes with. And it's why we hope it can slow the disease.

Scott Benner 10:27
If If a person has multiple antibodies, is it? Are they definitely going to get Type One Diabetes at some point? Or is that not

Dr. Carla Greenbaum 10:36
the case? That's a great question. Because, as you know, this whole notion of stages of diabetes, which means that once you have multiple antibodies, and you have normal glucose, you're at will be called stage one diabetes. And if you have multiple antibodies in your glucoses, are not quite normal that stage two, and stage three is what we used to call new onset diabetes. And that whole framework was really based on all the studies that do suggests that unfortunately, once you have multiple antibodies, it's extraordinarily likely that you will get clinical type one diabetes. Now the important piece that people often miss, it doesn't tell us when you're going to progress to getting type one diabetes, some people may live with multiple antibodies for a long time, and other people will get diabetes in a short period of time after the antibodies appear. So it's the antibodies that tell us who to test further to see who's going to be getting diabetes sooner to see about who could be in our trials. Gotcha.

Scott Benner 11:43
And this is just a point where I mentioned we're talking about type one in case,

Unknown Speaker 11:47
yes,

Dr. Carla Greenbaum 11:48
type one diabetes. And, and, you know, I should say that the, the study that tronic conducted, where we showed that one of the drugs that we tested lism ab could slow progression in people that were at risk for getting diabetes. You know, half the people who had received the placebo, got diabetes very, very quickly, within two years. So when I say that just having antibodies doesn't tell us how long it takes you to get diabetes, it's really having antibodies and doing these other tests that we can help give you information.

Scott Benner 12:22
You know, I have to say that I've now interviewed a number of people who have gotten it in their 60s. Yeah, and I feel like, a decade or two ago, someone would have told you that was impossible. Yeah. But yeah, just I've just talked to too many people who who've had it happen. And and I think at this point, now, if I should have made a flowchart at one point in my life, I've probably spoken to somebody who's been diagnosed at every age between one seriously between the newborn and like, in their mid 60s. So yeah, nobody ever. I mean, don't get me wrong, there's, you know, there's sweet spots, it seems like where people like, you know, they're all like, always, like, 28, or just getting ready to go to college, or, you know, like, there's, there seems to be, I mean, this is very unscientific, but there's there seems to be some sweet spots where it happens. But I, I've had somebody say, every age that I can think of, so

Dr. Carla Greenbaum 13:14
you're absolutely correct. So what you talked about the sweet spots is what we what we talk about by modal distribution, that's a fancy science word, which basically says, if we look at when people get diabetes, there's sort of the group of people, they get it really sort of pre puberty, kind of six to 10 year old range. And then there's another blip around puberty, that people get it. But then we do know, people like you found right people get diabetes, it also Type One Diabetes at all stages. What we don't know, for example, is somebody let's say they have just one antibody. Now, people with it, we test to only have one antibody, we know about 20% of them, will develop more than one antibody after about five years. But we don't know if the other 80% will eventually get multiple antibodies, or will develop diabetes with having only one antibody decades later. We you know, because we haven't followed people 60 or 70 years, right? We don't know that for sure. Wow.

Scott Benner 14:22
What about having other autoimmune like if you have a different autoimmune issue and have an antibody? Does it change your your odds?

Dr. Carla Greenbaum 14:30
What changes your odds is your genetics, right? So your genetics is what sets up any autoimmune disease. And if you have another autoimmune disease, that means you have the genetics that puts you at potential increased risk. But once you have multiple antibodies, diabetes related antibodies, the genetics don't seem to matter that much. So it really the genetics tells you, who's going to give you who's going to have antibodies Not who's going to progress once you have antibodies. Milan, go, I'm sorry, I'm sorry.

Scott Benner 15:04
No, I didn't mean to stop you, if you have something else, thank you,

Dr. Carla Greenbaum 15:07
I was just gonna say that's really why trauma focuses on screening relatives, right? Because we know that's a genetic screening test. If you have a relative with diabetes, that means the genes are in your family more concentrated. And if we screen, you know, we will find about one out of every 50 relatives will have multiple antibodies. It is true that people who never had a relative will get diabetes, but we'd have to screen 750 people who do not have a relative to find that one with multiple antibodies. That's interesting.

Scott Benner 15:42
Let me ask you this. If Can I pluck two people off the planet who are married, and we screen them and find out if their children have more or less of a chance of having type one?

Dr. Carla Greenbaum 15:53
Hmm, not really, because the genetics give us I think what we call a fertile field, right? They give a probability. But they're not like genes that cause particular kind of breast cancer or Huntington's chorea. In other words, monogenic diseases, right? They don't, they don't say you're going to get it. So we could give some ideas, but we can't give enough information. We know some genes that are associated with getting diabetes, but there's a lot of people who have those same genes who never will. So genetics alone doesn't help us. On the other hand, as I mentioned before, we do know about what happens in relatives. So if you're an identical twin, the risk is very high. If you're a child of a father with diabetes, the risk is higher than if you have a mother with diabetes. So we do have that kind of subtle information.

Scott Benner 16:48
Are you learning about? How does diabetes skip generations? Or? Or is it just random? You know, Scott,

Dr. Carla Greenbaum 16:56
it's so funny how often people ask me? No, it does not skip. So that is not true. I don't know why people get that idea. I hear it all the time. But

Scott Benner 17:10
it's just anecdotal. Because probably what you just said is you're more likely if your father has than your mother has. So yeah, maybe your father has it. You have a daughter who doesn't have it, who then has a son who then does have it and then it makes it feel like it's skipping agenda.

Dr. Carla Greenbaum 17:23
Yeah, yeah, you're right. I mean, I don't mean to be No, no, I don't mean to be polite about it. But in general, No, unfortunately, that's, again, why we screen first degree, family members that his immediate family will screen people up until age 45. Where second degree, we actually only screen to age 20. Because the rest becomes lower. The further genetically you are from the person with diabetes.

Scott Benner 17:53
After the obvious goal of helping people who use screen and find what are other goals of trialnet, like, what else am I helping?

Unknown Speaker 18:01
Mm hmm,

Dr. Carla Greenbaum 18:02
great question. So one of the things is that we're helping is that we are providing hope and support for people, right? If you have somebody with diabetes in your family, you know, you are worried about other people in your family. And most the time, you'll get pretty good news, right? Because only about 5% of people will have antibodies. But if somebody is antibody positive, you know, we're kind of there for them. Right? It's like, when a physician has to give bad news to anybody. This is bad news to let people know that, you know, unfortunately, now you have multiple antibodies, but we're there to monitor and follow them carefully. And, and provide opportunity, and to have them prepare if that diagnosis will occur if a trial is not available for them. But on a broader scale, what we provide, and what participants provide to everybody else in the future is, every bit of data we get from any study we're doing is really laying the foundation for the future studies. So trial that was based on some of the studies that were literally started in the 80s, where we studied every family member we could find to measure everything we possibly could. And that's what led to this whole notion about what what predicts risks. So we learn about the Natural History of the disease, we get a better understanding of who's more likely to respond to certain therapies. You know, we really learn a lot from everybody who participates.

Scott Benner 19:33
Yeah, it's, I find it encouraging and whimsical to think about that somebody started something in the 80s that's helping somebody in 2021. Yeah, and I can see how also somebody would think that and go, Oh, great. So they'll figure this all out. 10 years after I'm dead, but but but you really are in. What it reminds me of is that I interviewed somebody who works at NASA recently. I ended up asking what does it feel like to be involved in something that you may never see the fruition of your work? And I guess I feel drawn to ask you the same question.

Dr. Carla Greenbaum 20:11
Well, I'll have to throw in a famous Tom mutek, saying for the Jewish tradition, we're towards the Hasidic story, which basically, somebody goes to this old man who's planting a tree, say, What are you planting the tree? For? You're not going to see it happen? He said, Nope. But my grandchildren will. And that this is all about, you know, thinking beyond myself, and thinking about the future. And that's what we do. I mean, all researches this way, we all have little, little pieces in this puzzle. And you know, the cliche of standing on someone else's shoulders is what we do. So I must say that I'm super excited in my research lifetime, how much has happened, right? We went from not knowing what could predict. And now we can predict. That was like, we couldn't do that before. We went from not having anything to do about it to now we have a therapy that's now been shown to stop diabetes. Now, in fact, there are seven different therapies now that can alter the disease course in diabetes seven. There Were None that long ago. So it's a little piece of the puzzle. We haven't gotten to the destination of curing diabetes yet. But boy, we've made a lot of changes.

Scott Benner 21:29
Yeah, I always imagine that. That the end goal for all these different things like you can use curing diabetes as an example. But the end goal for something, I imagine will never be reached the way the person in the moment now thinks it's going to be reached. Yeah. Do you find that you learn things along the way that reframe your thinking about how to reach that end goal?

Dr. Carla Greenbaum 21:55
I love that. That's a great, that's a fabulous way of thinking about it. I

Scott Benner 21:59
think, Carla, I don't even smoke weed. I just came up with that. I was

Dr. Carla Greenbaum 22:02
just gonna say that's like, totally, you know, 60s thinking now I'm teasing. I would say the answer to that is, whereas much of science progresses in increments, right, where we build on an observation somebody made. And we test that further, we build on another observation. There are certainly times where there are paradigm shifts, right? where somebody came up with a whole new way of either looking at the same data or has a new tool to measure something differently. So you're right. I don't know what the future of this is going to look like. I hope there are clever people in the future, who will, you know, change the paradigms a little bit and advance things even further.

Scott Benner 22:49
Yeah, it just, it makes you feel inside. If you're being whimsical, that one day someone will be able to say, Oh, you have an antibody in your, in your system that you don't want, we'll just take it out. We'll put this thing. Hey, kills it, you know,

Dr. Carla Greenbaum 23:03
you know, like I said, I'm old enough to know, when the whole idea when, when Amazon was first starting to sell books online. You know, I live in Seattle area. And I was telling and there was an opportunity to invest. And I was telling my husband, that's ridiculous. No one's going to give a credit card to somebody online.

Scott Benner 23:22
Well, I yeah, I don't know that people understand. It's funny. We were just talking about this in my kitchen, the other day where I was explaining to Arden, how quickly technology like builds on top of itself. Yeah. And you know, I stand around with my kids who are 16 and 20. And I told them the story I said, you know, when I was 13, I bought the most advanced consumer computer that existed. And I was like, I took it home. And I bought a book, a book at the bookstore that had code in it, I spent an entire day of my life. Looking at the book, typing in this code, he went on forever and ever and I got done. And I pushed Enter, and nothing happened. So I went back and I read the book and looked at the screen, and it took me hours upon hours and I found my typo, and I fixed it. And I pushed enter and a stick figure did one jumping jack on the screen and stopped. And I have to tell you, it was the most amazing thing I'd ever seen in my life. Alright, let's get into these ads and get back out quickly short episode short ads. The Dexcom g six continuous glucose monitor will show you the speed and direction of your blood sugar in real time. It will stop you from having to do finger sticks to know what your blood sugar is. And it will allow you to make decisions about insulin and food in a more precise and targeted way. And those decisions can easily lead to more stable blood sugars. Just imagine knowing how to balance your insulin against your food or seeing a small Lo come up and not over treating it with food because you can kind of watch it happen say, let me just try drinking a half of this juice box instead of the whole thing. This is amazing. On top of that, you can have up to 10 followers so somebody can be wearing the Dexcom g six and share their blood sugar's if they want with up to 10 followers. This is for Android or iPhone. And it's fantastic. I can get my phone out of my pocket right now and tell you what Arden's blood sugar is. And it is 119 and it's stable. I can see it's been stable for quite some time, that quickly if Arden's blood sugar leaves the range that we've set, which interestingly for this is 120 or 70, I'll get a little alarm and a beep beep Arden's blood sugars going above 120. And then we make a small adjustment to her insulin and bring it right back again, there are almost countless ways that you can use the information coming back from the Dexcom gs six, why don't you head over to dexcom.com forward slash juicebox. And take a harder look at it, see if it isn't something you think you might enjoy. And if you're a US military person getting your insurance through the VA, I think you're going to be super happy with the coverage. So you guys should head over to there's a quick little form to fill out and Dexcom we'll get right back to you and a ton of information that you can look at on your own. Speaking of forms to fill out, if you go to my Omni pod.com forward slash juice box, you can fill out a short form that will result in an Omnipod demo coming directly to your house. There you are a loved one can try it on and wear it and see what it would be like to wear a tubeless insulin pump not to be connected to any tubing or controllers and still get the delivery of insulin that you deserve meaning bezels while you're bathing while you're swimming during activity, being able to fine tune that basil insulin right not just inject it once a day and hope for the best. But be able to create basil programs like I don't know I want point five an hour from midnight to 6am. But at 6am I want it to be point seven or whatever you're in control of that. You're also in control of temporary basil increases and decreases extended bonuses and all kinds of ways to help with your insulin delivery to again be more targeted to your needs. Plus, it's tubeless. So you're not going to get wiring, wiring, you're not going to get tubing caught on doorknobs, dresser handles, or have to take it off to babe swim or be active or do adult activities. My omnipod.com forward slash juicebox get that free, no obligation demo sent to you right now let's know what I'm saying free, no cost to you. No Obligation means you don't like it doesn't matter. That's risk free in my opinion. There are links to Omnipod Dexcom and all the sponsors at Juicebox Podcast comm right there in the show notes of your podcast player or you can type them into a browser, my omnipod.com forward slash juice box dexcom.com forward slash juice box. And while we're talking about links, don't forget that they're not a sponsor. But Carl is here today sharing the news. So trialnet.org

a stick figure did one jumping jack on the screen and stopped. And I have to tell you it was the most amazing thing I'd ever seen in my life.

Dr. Carla Greenbaum 28:38
Yeah, well, I would say that, you know, the advances that happened in science are obviously not as touchable for the average person. Like all the technology has changed our world. But But if you look back with a little bit of a broader lens, the difference between what science has brought to healthcare and medicine now versus when I was at med school, which wasn't that many centuries ago. It's night and day. Yeah. And so I really do believe in science.

Scott Benner 29:08
I have to tell you that when when my son was two, so we're about 18 years ago, I'm 49 let me do the math real quick. I think that made me like 36 or 37 ish in there. Maybe 47 Nope, nope. 27 or 21 There we go. My appendix almost burst. When my wife was a child, she had terrible ear infections. And when my daughter was two she got type one diabetes, and you can go back in time not that far and make the case that all three of us would have died. We wouldn't be alive today, you know without just yeah, basic things that have moved forward. Yeah. Yeah. Really fantastic. And yeah, it's just I've always been thrilled to tell people about trial that and I and and then we get into that space right where Yeah. I do believe that people need to understand the benefit of finding out that they have the antibody. Yeah, because I get afraid that when people hear about it, they just think, well, I don't want to just worry, like, wait for the other shoe to drop. And I've also heard people thoughtfully say, guests on the show. Listen, I have type one diabetes, I've had it for 30 years, there's nothing wrong with me, I have a very normal life. And my kids could have a normal life too, if they had it, except the idea that you could maybe take a pill that could exponentially slow the, the onset down or even stop it. I mean, that's, that, to me, is where the exciting part is?

Dr. Carla Greenbaum 30:31
Yeah, I mean, I, I again, look, participating in research is not for everybody. And it's really hard to do it when you're making decisions for your children, for example, as compared for yourself, right. On the other hand, you know, all the money in the world is not going to bring progress if we can't have people participating. So every single person who stepped up to participate, just is accelerating our ability to test new therapies and to find new things. And, and yet, I know it's, it's a challenge. I guess, the only other comment I would make is that research in other areas where families have one child with a chronic disease, for example, has well documented that the other children in the family are wondering about them getting it as well. So sometimes parents say, I don't want to scare my other child, I don't want them to think that they might be at risk, what we know from all sorts of other studies that they're thinking about that anyway, whether they're saying it out loud or not, right. You know, and, and the other thing is that, you know, going back to the 60s, you know, knowledge is power. So I think, when people know that they're antibody positive, there's obviously a sorrow and grieving process around that. But it's such a wonderful opportunity to be able to prepare. And to, to not have to, you know, end up in the hospital with DK or something,

Scott Benner 32:00
no matter how many people I speak to, who are mis diagnosed type two and eventually find out their type one. Yeah, they all, I think I really mean all of them eventually say, it is better to know, than to struggle, or to wonder if they use words very similar. I've never heard anyone say, you know, I would have liked to have gone on thinking I had type two diabetes, when I really like one. And I'm just a big fan of that, like, in my mind, a bill comes whether I think I can pay it or not. I opened it up to find out what it is. Because now at least I know, you know, staring at the envelope closed it, you know, you can't you don't forget it's there. You just putting off the inevitable and maybe, you know, I don't like you know what, maybe I opened it up and realized, Oh, my God, I paid too much last month, this is a freebie I get the whole month of thinking I wonder bills paid already, you know, just yeah, to me. mindset. Yeah,

Dr. Carla Greenbaum 33:00
let me let me throw out a number for you, you know, for you and your your people listeners to think about this, that there's about 40,000 people that are newly diagnosed with Type One Diabetes every year in the United States. If three of each of them had on average, three relatives, that's like 120,000 people, right, which would be 3000 people that would be identified potentially, who have multiple antibodies. If we had that group of people regularly, we would be able to do all the trials much more quickly. And we get the answers much more quickly. That would help everybody

Scott Benner 33:39
people who hopes ever again, I have to say not to mix my apples and oranges here for a second. But I support the T one D exchange. And I sometimes struggle to explain to people why that's important, like, you know, to say to somebody like Oh, they you know, they took data and may and that helped the ADA bring down the a one c guidelines for children. And he hear that and it could it could be very easily you can hear that and go, like, why does that matter? But it but it you know, but it does matter? Because when the ADA says, Look, this should be a target, that every endocrinologist in the country reframes their idea of health. And, and even though it's a slow, you know, it's like, it's like turning, you know, turning a battleship. Eventually that means that everybody gets more targeted information about how to manage their blood sugar's and, you know, everybody can't listen to this podcast. I wish they could but and I know what happens when people listen to their, to their variability in their agency and their overall health, like having good information and good tools is the answer. But, but doctors, they take their marching orders from somewhere else, like largely, and so that's a hard thing to explain in a soundbite. And I think maybe you suffer from that sometimes to trying to say like look, you know, if this many people times this many people, what do you think? 1000 more people, you have no idea how helpful that information would be to help everybody. But now we said it. So now they just have to believe it.

Dr. Carla Greenbaum 35:09
Well, you'll just have to say it three or four more times, because that's exactly the point. I mean, it's, we need people to help us help them. That's really what we need. And, you know, our job is to do the best studies we possibly can. And to do the best we can to support people who are volunteering, you know, for participation. But we need people to participate. That's for sure. Carla,

Scott Benner 35:33
aren't you just gonna take my blood and make a race of lizard people and invade?

Dr. Carla Greenbaum 35:41
Listen, I think there is among the various, the tremendous tragedy that COVID has brought to the world. You know, there have been quite a few silver linings. And I think one is a little bit more insight into science, and what science can help and offer people, you know, was much more in the so called public square than I think it's been in the past. And I hope people see that the number we actually were involved in running one of the we were a site for the Pfizer vaccine trial this past year. We had more people wanting to volunteer for that than anything we've ever done. And I, you know, reflected on that. Why is it? It's because people saw it as an emergency. It's imminent, and people saw it as a public good. They saw how terrible things were and felt that they could contribute to making it better. Yeah. So maybe what we haven't explained clearly enough to people is that contributing is how it's going to make it better. And diabetes.

Scott Benner 36:39
Yeah, it doesn't take that much effort. I mean, honestly, I had to go into an office to do it that day, and it wasn't that big of a deal. And now you're saying I just went to your site. So I go to trial, net.org. And then I want

Dr. Carla Greenbaum 36:52
to participate. Now,

Scott Benner 36:54
I see that. And then oh, it's easy. I hit click Sign up. And there's it says you can get an at home test kit, visit a quest diagnostics, or labcorp. Make and that's it. Okay, so this seems pretty simple. And you put pictures of cute children on there, which is always a smile for a website?

Dr. Carla Greenbaum 37:15
Well, you know, we do have an awful lot of people have participated over the years that are really passionate and eager to tell their story. So we'd like to do that. And we anticipate doing that quite a bit more coming in the next quarter. Yeah, we'll have a whole new campaign where we're telling people's stories and why they participate and what their experience has been in trauma.

Scott Benner 37:35
That's excellent. It really is. I don't know. I don't know how to get through to everybody. Like, you know, I there's times I just think, like, just Just do it. Let's go do it. Like even, like, quick, let me ask you a question. If I wanted to help the, this is gonna sound crazy, because you probably isn't gonna work out the way I'm thinking of, but if I want to help the overall cause, but I don't want my results. Can I do that? No, because it would be medically unethical for you to know something about me and not help me.

Dr. Carla Greenbaum 38:07
Well, it just doesn't help me as much, right? Because we already know, if we got your blood sample, and you had antibodies, we already know what that means. We're not gonna learn anything from that gotcha. What we need is for people to be ready to be in studies to see if we can slow or delay the disease. So I appreciate the sentiment. And I should say, if you lived in Seattle, we would love to have your blood because we do an awful lot of work here, just a better ROI Institute to use blood samples from people living with diabetes, to understand the disease. So we're not running a clinical trial like trial meadows.

Scott Benner 38:43
But if I wanted to just drop off some blood at the institution, that separative trial that I had type one diabetes, I could do that.

Dr. Carla Greenbaum 38:50
Yeah, we have. Well, you don't just drop it off. But yeah.

Scott Benner 38:55
No, Carla, in my mind, I roll up to the curb, and I just toss it out the window. And

Unknown Speaker 38:58
yeah.

Dr. Carla Greenbaum 39:02
It's a little more than that. But yes, we, the reason why we some of the trials that we conduct, we have decided to do because of what we learned from studying blood samples and people living with diabetes. I gotcha. So, you know, all these different ways that people who have diabetes can contribute again, it's not really what trialnet does, in terms of people living with diabetes. But we do learn from samples all the time. Well,

Scott Benner 39:32
it's an amazing thing, like the work you're doing is it's astonishing. And I do think I do think it'll come to to some or a lot of good one day. I am you know, I have to say that for me being the parent of a child with type one I live, like diabetes won't be cured in my lifetime. I hope it will be like I always have the hope, but I prepare like it won't be because I get super afraid for People who have that feeling like, Oh, don't worry, they're gonna fix it soon. I don't have to take care of myself right as well. I'm always worried about that balance a little bit. But yeah, but that's what kind of struck here. Like, I wouldn't be surprised if I turn the news on one day. And some guys like, yeah, I used that CRISPR. Turns out, you just do this and this and,

Unknown Speaker 40:17
you know.

Scott Benner 40:19
And at the same time, if Yeah, I know, I'll never know. But I tell you right now, if I send somebody to try and get through this podcast 100 years from now, kids don't have Type One Diabetes anymore. I hope I can feel that wherever I am. Because Yeah,

Unknown Speaker 40:32
oh, I love it.

Dr. Carla Greenbaum 40:34
I love it. I love that sentiment. And I, you know, I would say that we do rely on people like yourself who are passionate, not only about helping people with type one diabetes, but sharing information. I think that's, that's really why the type one community is so amazing. do appreciate that kind of work.

Unknown Speaker 40:53
You have to scale it.

Dr. Carla Greenbaum 40:54
Before we leave. I should tell you about our new study, though. Is that okay? Do we have a minute?

Scott Benner 40:58
What are you kidding me? Yeah, I'm busy or something? It's, it's COVID. I'm just gonna stay?

Dr. Carla Greenbaum 41:05
Well, I've got backup calls. But we're okay for a little bit here. Listen, as I spent this whole time, right, we're all about doing prevention, right. But one of the other pieces that Tron that is now doing is looking out at different types of therapies that different companies are starting to think about developing. And we're going to those companies, and we're saying, Look, trialnet can do these studies for you, we can help move it along, we can bring it from the early steps to the next steps to the next steps. And so I'm really excited about this new study. So it's a phase one study. Phase one means first time the drugs ever been to get given to people. And it's just there for testing to make sure it's safe and helps us select what are the kinds of doses we want to use, right for the bigger trial. But this phase one study, if the results are good, is what's going to lead in the future the next step to prevention. So for this study, this is looking just for adults, because phase one means again, only first time and people so we don't give these therapies to children. And we're looking for adults who were within four years of diagnosis. And we're going to be giving them a therapy that I kind of call a designer drug. So it's a designer drug for diabetes that we're testing in this group of adults. So if people particularly people who live near a town, that center, that would be really great. And again, you should be able to read about that on our website as well. New onset studies under new onset studies. Top Bolus this study, spell it to ppl II. Okay.

Scott Benner 42:49
Well, I will make sure I'll put links to everything in here for that. Okay. That's excellent. I'm glad you told me about that. Yeah, I mean, just makes sense. Right? You're doing the work already. And yeah. And they're looking at the same things. You might just Well, I have to say that I had a gentleman on Dr. Millman. Yeah, you don't you know, Jeffrey,

Dr. Carla Greenbaum 43:09
I know of him.

Scott Benner 43:10
Okay, I had him on a couple months ago. And one of the things that it came away from that, that I came away going, Wow, that's crazy. Is it how much more science scientific minded people are now sharing what they learn. And it's, it's become less about, like, we'll just, you know, we'll, if we get it, it's ours. And it's more about, you know, about people being able to dig into other people's research into the labs, helping labs and everything. And I, you know, I really do forget the, the actual, like specifics of what he said, but he left me with a good feeling. You know, if somebody is having a good idea over there, and someone's having a good idea over there, and they're not talking, it seems like a like a waste of time. You know, so

Dr. Carla Greenbaum 43:53
well, you know, there is this, you know, old image of a scientist, you know, locked in their dark laboratory and, you know, never talking to everybody, but certainly clinical research is 100% us network, right, a collaboration I mean, trauma that has hundreds of sites, 1000s of people that are involved in making this work, so it's really all about communicating with others and, and building bridges. So sure, well, isn't Millman isn't no minute wash you He is to get you Yeah,

Scott Benner 44:21
yeah. I I forget why I ended up having him on but something he said something he said on Twitter or somewhere I forget where I saw it. I was like, I'm gonna come on the podcast. And he was just delightful. And, and what he talks about was just very aspirational.

Unknown Speaker 44:36
Yeah, I think that

Scott Benner 44:37
one of the things he said was like, is like the thing we're doing right now was just was just unheard of a short time ago like this just this is something that nobody could have even imagined. And, And that, to me is exciting. The idea that things are exponentially growing and scaling and

Dr. Carla Greenbaum 44:52
right and the cool thing is that a scientist like himself, who's developing new therapies will be able to something like That takes those and Testament people. That's why I'm saying it's, it's like, you know, it's a village, right? It's a whole community of different people using their skills and interests, who then pass that idea along for the next day. That's what it's all about.

Scott Benner 45:17
Hey, huge thanks to Omni pod and Dexcom for sponsoring this episode of the Juicebox Podcast. Find out more about that on the pod tubeless insulin pump at my Omni pod comm forward slash juice box and of course, the Dexcom g six continuous glucose monitor, you can learn about that@dexcom.com Ford slash juicebox. You can get your free T one D Risk Screening from trial net at trial net.org. And you can also find out about those other studies. Just the way Carla told you about. Why don't you check it out at trial net.org. That was pretty good. Right, Don? I did everything I need to do here.

Let me take a minute to thank everybody again for the great ratings and reviews even leaving on Apple podcasts. And wherever you listen to the podcast at thanks so much for sharing the podcast with other people for joining the private Facebook group, which of course is always free. Everything about the podcast is always free to you checking us out on Instagram, or wherever else you follow along. Let me just put this feeler out. If you're an endocrinologist who recommends the show to people, I would love you to come on and talk about that. You could be completely anonymous if you wanted to. I can't offer a voice changer. Although I don't know that I can't figure out how to do that. But you could be anonymous, I would love to hear from an endocrinologist that suggests this podcast to patients. So if you're that person, reach out, find me. I'd like to know more. There's going to be one more episode this week. And then next week, there's going to be an after dark. And what else I have a lot of really cool episodes edited. Which 1am I going to give you next week? So I think this weekend maybe Sarah

Unknown Speaker 47:21
maybe

Scott Benner 47:23
mirdif maybe gallon, maybe gallon this weekend. Next week. And after dark with Josh and Sarah later in the week. I think that's what I'm going to do then there's a how we eat coming up next the two weeks from now. And another after dark coming in the month later. That's what I'm gonna do. Yes, I've just talked myself into it. Now let's see if I can remember what I said the next time I go to put up an episode. Anyway, thanks so much for listening guys. I love making the podcast for you. Thank you for listening means the world to me. I'll talk to you soon.

#432 Bolusing Brothers

Tula and Beans

Katie is the mother of two boys who have type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends. Welcome to Episode 432 of the Juicebox Podcast.

Today's show is with Katie and Katie has two sons who have type one diabetes, and they were diagnosed pretty far apart. So she has an interesting perspective about being a young mother with a type one and a more seasoned mom with a type one. I think you're gonna really love this episode, Katie's excellent. And I really enjoyed having her on the show.

Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin.

If at some point after this you'd like to find Katie and her boys on Instagram you can their bolusing underscore brothers.

This show is sponsored today by the glucagon that my daughter carries g vo hypo Penn. Find out more at G Vogue glucagon.com forward slash juice box. The juice box podcast is also sponsored by the Contour Next One blood glucose meter. You can find out more at Contour Next one.com forward slash juicebox easily the most accurate and simple to use blood glucose meter that my daughter has ever had.

Katie 2:00
Hi, I'm Katie. I live in Bloomington, Minnesota. I live here with my husband. We have been married for almost 10 years going next month I married my high school sweetheart. We have two kids. Caleb who is 12. He was diagnosed with Type One Diabetes when he was four. And Micah who is three who was diagnosed about two weeks before he turned it.

Scott Benner 2:22
Okay, I'm gonna write this down because there's two things happening and then I'm gonna get messed up. So Caleb and Caleb right.

Katie 2:30
Yep. Caleb.

Scott Benner 2:31
Is 12 diagnosed at four. Yep. And give me the second one again.

Unknown Speaker 2:36
Micah Micah,

Scott Benner 2:38
who was recently diagnosed right?

Katie 2:40
recently. Yep. So it was like his one year anniversary and January.

Scott Benner 2:45
Oh, wow. And how old is he now?

Unknown Speaker 2:47
He is three,

Scott Benner 2:48
three. He's cute, too. Just assuming you know already. But he's adorable. So I know you through Instagram. Is that right?

Unknown Speaker 2:58
Yes. Yep.

Scott Benner 2:59
What's your handle on Instagram?

Katie 3:01
It is bolusing brothers. So b o l u s i n g underscore brothers.

Scott Benner 3:07
What made you start the account.

Katie 3:09
Um, I started that account after Michael was diagnosed. And I was looking to be more connected with the community that I use community, I had my own, I still had my own personal one. But that I would post things there. And a lot of my friends and people just didn't know what I was talking about. So I figured, why not branch off and try to find a community of people who can relate to what I can do.

Scott Benner 3:31
What I know about you initially had an account, and it was it was about you and your family. And all of a sudden you start talking about bolusing and things and they were like, I don't know.

Katie 3:40
I think there was a time where I posted something and I was like at the end of his appointment. I was like no appointment times two. And they're like, what endometriosis? I was like, No.

Scott Benner 3:50
Is that what the jumpsuit? Do you have endometriosis? No.

Unknown Speaker 3:53
That's not what I meant. But okay.

Scott Benner 3:56
So then the other account makes sense. Yeah. What? So you're, you were initially looking for contact with people? Did you find it?

Katie 4:03
I did. I think after starting that, I just put like a post of my family. I was like, This Is Us. And I'm just looking forward to meet people. And everybody was just really welcoming. It's just kind of grown from there. But I've met so many different people from all over the place when it's like I need help. Or if I just need to vent. It's just so much support that I just love. That's cool.

Scott Benner 4:25
That's great. So you got what you wanted out of it. And and you're giving something back probably whether you realize it or not just kind of sharing how things are going. I want to know. I guess you're you're interesting because you have two kids and one's been diagnosed for so long. That the technology that he started with, right that Caleb started with, it's got to be different than what Miko started with.

Katie 4:49
Yes, so it's kind of up Sorry,

Scott Benner 4:51
no, no, I was just gonna say tell me first about how it started with Caleb.

Katie 4:54
So Caleb, Caleb was diagnosed as four so just like preschool. So at that point He was just like really, really sick for a long time where it kept going. I was like undiagnosed, like, every time you want to say was, he's got the flu. He's got this. He's got everything besides diabetes. So he got to the point where that started in, like November. And then by December, he was really sick, to where he was lost all the weight was really skinny. He couldn't see straight, he was like always falling over.

Scott Benner 5:27
So he was in DK,

Katie 5:28
he was in full DK.

Scott Benner 5:30
And it took about a month or five or six weeks to figure that out and coach him. So you kept going back to your general practitioner, and they kept saying it's this it's this and trying different things. And it was the prescription always wait allowed to get better?

Katie 5:43
Yes, yeah. Yep. Oh, and it was kind of like a crazy time because my husband was working three jobs at this point. And I was working too. So there's a lot with my mom, okay. And my mom was like, I'm taking him in. I think he has diabetes. And I was like, I kind of slacked it off that she was just like, crazy. Like, I didn't know anything about type one. So I'm like, diabetes, are you sure. And crazy enough, I got a phone call while I was at work from the doctor sitting with my mom. And she's like, you need to leave right now. Your son's being taken to the hospital, and you need to go right now. Wow.

Scott Benner 6:15
And did she say for? Like,

Katie 6:17
your diabetes? Yes.

Scott Benner 6:18
So I was gonna say were you first more shocked that your kid had to go to the hospital that your mom was right about a little bit? I would love to be in that moment. And in your head, just to hear the like, dammit, she was right. She was right. Was that now Why does my kid Why does my four year old have diabetes? Like what is that? What was your understanding of diabetes at that point?

Katie 6:38
Honestly, I didn't have much of a nice thing besides like, type two, so are just like things associated with like diet and weight. And I'm like, okay, it's fine. It's healthy. What do you mean, he has diabetes? I didn't have any concept of like the pancreas and everything that goes into type one. I didn't know.

Scott Benner 6:54
I don't know. I wouldn't blame you. Any. Now in hindsight, any people in your family with other endocrine issues?

Katie 7:02
Not that we know of my husband doesn't have any. And I only have a relationship on my mom's side. So if there's anything going on my father side would not

Scott Benner 7:09
you wouldn't know, man. Yeah, I'm adopted. So very frequently, when people ask questions like that, I'm like I have, I have no idea. To tell you, I'm as far as I knew, the first person in my family. starts here. So and it hasn't been it's not good roots to the tree so far. years from now, my children's children are gonna look back and go, what was wrong with him? Exactly. All kinds of things. Well, okay, so there's nobody to really lean on. So you're starting fresh. And you and your husband have like you said, you work a lot. So what happens then to Caleb's care? Does it go to your mom, mostly does it fall to you? How do you handle that?

Katie 7:50
Well, when he first started out in this journey, it was my mom. So I took time off. And I stayed with him like he was at a hospital for a week. So I stayed there the entire time. My husband was in and out. But when it was time to go back, he would go and bi moms. Okay,

Scott Benner 8:08
so she had him during the day, where I guess if you're working that many jobs, it's not just nine to five, right? You're,

Katie 8:15
for me, it was a nine like a nine to five, but my husband, it would be a 16 hour days off pretty long. Gotcha.

Scott Benner 8:22
Okay, so he's okay. So even when it wasn't your mom, then it was mostly you?

Unknown Speaker 8:27
Yeah. And

Scott Benner 8:28
did it? Did it eventually grow? Or has your husband sort of stayed? Like, did you guys like, Go look, you go make money? I'll take care of the diabetes are how have you? broken? Yes.

Katie 8:38
Yep. So as time went on, he still kind of works a lot. He slowed down, but I only work one. So I go. Right now I currently work in the same school club goes to so we go to school together, we leave school together or home. That's nice. I

Unknown Speaker 8:51
just nice.

Scott Benner 8:51
I have to tell you, if I could trade 16 hours worth of work every day to not think about diabetes, it might feel like a fair trade to me. Is that all I have to do to get out of this?

Unknown Speaker 9:03
A little up?

Scott Benner 9:05
Probably doesn't think so. But I put it does. You know, that's, it's really interesting. But I listen, I think it's reasonable. For care to be in one person's hands more than the other because of the nature of it. Just it's difficult to pass it back and forth, and back and forth. And we still lose track. Just the other day, I went to the store to go grocery shopping, and I came back and I just walked in the house. I was like, does anybody see origins blood sugar, but me? Am I the only one that sees it? Am I the only one that cares? I'm like, flipping out. Like everyone obviously cares, right? And I hear like, I didn't hear beeping. I didn't hear beeping. I'm like, it's beeping. And you know, and her blood sugar gets to like 180 it's not the worst thing in the world. We get it back down. But my wife goes, Well, you didn't tell me you weren't gonna pay attention to it when you left. And I thought, well, that's reasonable. You know, so she's got this idea in her head. She's working. And she's thinking he's got it. And then all of a sudden I leave and just comment, it felt like comments. Like, I'm not in the house anymore, you know, Could someone else do it, but because of the share, it's not like I'm really disconnected from it. So I was like, Alright, you know, I didn't say anything. You're right. And, uh, so the next time I left, I was like, I'm leaving now. Could anyone pay attention to this besides me, please? And, you know, everybody looked at me really, like kind of snotty sounds like, Alright, I understand what's going on. But no, I think it's a good idea. And that's mainly, so tell me about Caleb's. Like outcomes in those first, you know, I guess, 567 years in there, where they where you wanted them to be, where were the struggles that and wherever the, you know, wherever the, the good parts?

Katie 10:40
Well, when we first started out, we were doing okay, I wouldn't say we were doing great. It was I was a lot of overwhelmed with like, all the information and everything. And I didn't really seem to, like figure out everything that worked. But he, we went about like six months before he got on Omnipod. Which was nice, because he really hated the injections. That was really hard. But we went through this like spiral of just like burnout, burnout for years, it was very unhealthy, very stressful for him. And for me, here's a one See, I believe, when he started out was higher, and we were able to get down to like an eight. But for at least like a good three to four years. I couldn't break anything underneath a ton.

Scott Benner 11:26
Okay. So for the first three or four years, you couldn't get under a tent and you were working like you're not. You weren't just like this will be fine and not attention to it. Right. Right. Right. So describe that a little bit like what what did those days look like when, when that was going on? You wake up in the morning, did you test right away like habits like seriously, like start to finish? How did the day go?

Katie 11:48
So when it would be like a weekend or a day he was with me? It would be wake up test for breakfast test before meal. So the directions are doctor's test before meals, or if he's not feeling well. And that's pretty much what I would did. So it'd be before breakfast before lunch before dinner before bed. And then in between if he didn't feel well.

Scott Benner 12:07
Did you have a feeling that this wasn't the right thing to do while it was happening? Or were you just thinking you were bad at it? Like, you know what I mean? Like, what's the feedback that what's the feedback feel like when it doesn't work?

Katie 12:17
I felt like I was bad at it. Like I have the directions from the handle. And I'm doing what they're telling me to do. I'm testing I'm correcting and bolusing when he's getting in, or when he's eating something. But the outcome is always he's not feeling well, and he's high in the ANC is always high.

Scott Benner 12:35
So from your perspective, the only thing you can figure that's wrong is you because you're doing all the things you've been told to do. That's terrible. And I and it does weigh on you right. Like, people call it burnout. But it's the overwhelming feeling, especially as a parent, and you know, maybe I'm taking that back, whether you're an adult with type one or a parent of someone with type one. It's this feeling like you're just a failure, just constantly failing and failing and failing. And and it's got to be you because some guy in a white coat, right? Like who went to school longer than you did. And people call him sir and doctor and stuff like that. He told you what to do, or she I feel badly for you. And I felt the exact same way. I just thought this is me. I'm doing this wrong. You know? It turns out you're not though. So what was the first like light bulb moment for you that led you away from that?

Katie 13:24
It wasn't until his brother was diagnosed. It came to a point like building up so when his brother was diagnosed that last like year was really tough. I had the newborn wasn't a newborn, but I had a new baby him and it came to a point where we weren't on a Dexcom at this point quite yet. We tried like an earlier version of the Dexcom. And he hated it. So getting him on that wasn't gonna work. He wasn't convinced he didn't want to go on whenever again. And then he would eat and not Bolus he would hide it. He was sneaking food, he wouldn't test his fingers. He wouldn't do any of those things. Yeah. And so it was kind of like me trying to control diabetes in the dark. What do

Scott Benner 14:09
you think leads to the sneaking Do you ever does hindsight ever tell you did you see something happening? Or do you think it was just the the unrelenting You know, this isn't working because I don't know about you, but I have a hard time. Back in the day. I had a hard time pretending everything was okay when it obviously wasn't and everybody knew it wasn't you know what I mean? Right? Right. Which which did you go for? Do you go for it's all fine. Don't worry about it or were you more honest.

Katie 14:34
I was more honest. Like it really did frustrate me and I would just tell them I mean if you want eat the snack, eat the snack but we have to do something about it. I don't know if he kind of felt like he didn't want to be bothered with it. Like this is what we're going to be doing every day. We'd go to the end oh you know with that agency and it was always bad news all the time. So you're always getting like beat up I think both of us between all of that just kind of gave up. Did you

Scott Benner 14:58
did you feel like he Where did you begin? Give him any perspective for what it really meant. It's so hard at that age, like you're thinking four to nine, basically, we're talking about in that range, right? Like, how does he like, how do you tell him like, this is really bad for your health? Like, how do kids quantify that? You know what I mean?

Katie 15:13
Free and I don't know, if he fully did. I mean, we would talk about different people are different, like outcomes that could happen or just even comparing it to how he felt. Because they mean days where he'd wake up feeling like crap and would throw up and all that's just related to his blood sugar. So it wasn't because he was sick. And I'm like, if you don't want to feel this way, we have to get on top of it. Wow.

Scott Benner 15:33
It's interesting. Interesting, it's the wrong word. It's overwhelming for me to hear that. Because, you know, I think of you now, like, I don't know, you know, you, but I'm aware of your face. And I know what your children look like, you know what I mean? And, and we, we talk back and forth sometimes and and to feel like your son was so high that he was vomiting is like, his feels crushing to me a little bit that like that happened to you? You know? Yeah. And, and I can't imagine being in the moment, because you're standing there going, this is not okay. And yet, we don't have any real answers. Now. Do you not have answers? Because I don't know what I want to know. Like, when you go back to a doctor and tell them that, how do they respond to you,

Katie 16:19
we would go through is like kind of like re education, but it's like the same pieces of information. But one of his, his nurses, she has her son is like a year older than Caleb and her son is a type one. And she's like, you really have to get this Dexcom. So it was like the newest version. And she kind of just talked him into it. And this was like leading up because at this point, this was what maybe she'll lie. Right before so July 2019. Okay, we were preparing for Caleb to go he was going to go to Kenya for an entire month with my husband and family. So I'm saying here diabetes lady who manages everything is staying in the States. And they're going so his, the nurse was just like, you should really sign up for this. And that was like the stepping point right there was getting that prescription for that.

Scott Benner 17:10
Were you out of your mind that he was going away for a month without you?

Unknown Speaker 17:13
Oh, my gosh, well, yeah, a little bit, I think

Scott Benner 17:17
I would have been like, but he doesn't. He's been working. He didn't know anything about this and not for nothing. I don't appear to know anything about it either.

Katie 17:25
Going away. And it was crazy. Cuz he was my husband and my sister in law both came to like appointments building up to that to get all their questions answered. And everything, tried to be squared away the best as possible for sending him?

Scott Benner 17:37
Yeah. Let me ask you a question that might be a little more unpleasant. And don't answer it if you don't feel like you want to. But have you ever cognitively thought that you're treated differently? For having brown skin in a doctor's office? Do you think there's the the Hey, they those people, quote unquote, don't care as much about their health as other people because I've heard a lot about that lately, that there's there's actually data that says that doctors might subconsciously believe that brown people don't care about their health as much. I don't know where that would come from. But have you ever seen that?

Katie 18:10
I have, not necessarily in Caleb's diabetes experience, or even my cuz i arendal is actually Middle Eastern. And she's a very sweet lady, and she gets us in our stands us. But thinking back to like experiences I've had personally, I have definitely seen that. For example, when I had Caleb, I was 20 1920. And my husband and we're not married yet. And when I went into labor, I feel like we're treated differently in the hospital. Caleb was born with an issue that I can't even name to this point where he has spent a week in the nick you. They kind of were like we were brushed off and people weren't giving us information. I feel like it was treated based on the fact that the way we looked the fact that we were young, unmarried couple and the type of insurance we had, yeah, and I remember like my sister in law was a few years older than us like going in and like yelling at these nurses and yelling at the doctors like about this issue and how they're adjusting and treating us.

Scott Benner 19:07
That's a tough I mean, that is you were like 20 years old. That's it? Yeah. I don't know how to stand up for yourself when you're 20. In that scenario, you don't mean like you need kind people to say, it gets so simple, isn't it right to look and say there's some unmarried young people here having a baby who's come out, and it's having an issue? we could we could lift them up here. You don't I mean, like we could, like common sense voices for them. We could point them in the right direction. But it how much of that feeling of over being treated differently? I wonder is you really being treated differently? And how much of it is you feeling like that imposter syndrome, like you don't feel like you belong there because I've had that feeling in my life to do you know what I mean? Like, my wife and I got married pretty young. And I remember being in a furniture store. And we had an apartment and we wanted a sofa and we had money. For a sofa, and we stood and stood, and salespeople just walked past us and walked past us. And no lie. I've never told this anywhere before. I took out my credit card and held it up over my head and said, I have money and I'd like to buy a sofa. Can someone help me? That's literally how I got somebody to help me buy a sofa. And I don't have any issue with my color that, you know, in that way. And it was really, it was crazy. I was like, Oh, my God, they don't assume I'm serious. Didn't mean like that, or that. I don't know what they didn't think. But they just avoided us. like the plague it was, you know, not the same thing. But I remember feeling then moving forward, that we weren't serious players in like an adult life, if that makes sense. Yeah, and it takes a while to get past that, then, especially if people are gonna keep treating you that way. I just I was really was really interested. And I'm glad to hear it. It doesn't exist with your endo. But your endo also has a different perspective, I guess. Yes. That's that's really something. I wonder if it happens, despite the color of the doctor. Like, I wonder if it is a systemic issue. Do you know what I mean? Like that? That's the feeling. I don't know. That's very strange. That did you ever feel like you weren't interested in your own health?

Katie 21:19
No. Like, if I'm there, and I'm paying business, like No, that's not it.

Scott Benner 21:25
Right? Right. You're not disinterested? Right? So. So the key here, it seems to me is that somebody on the other end, no matter what the scenario is, has to have the compassion to walk you through something no matter who you are on the other side of it. You know, I mean, your interest level like that, because there are people who are just overwhelmed and decide to write off their health because they don't feel like they can do it. But you could reach those people if you worked at it and tried, I think, yes. And so what was it was it seeing the Dexcom is that what brought things into focus for you see and data. g Volk hypo pan has no visible needle, and it's the first premixed auto injector of glucagon for very low blood sugar and adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about, all you have to do is go to G Vogue glucagon.com forward slash juicebox Jeeva shouldn't be used in patients with insulinoma or pheochromocytoma. Visit g Vogue glucagon.com slash risk. When you're using a blood glucose meter, you want it to be accurate, you want it to be easy to use, easy to read, and easy to see in the dark. And if you had a Contour Next One blood glucose meter, you would have all of those things. Arden has never used a meter that is so accurate, or so simple to carry with you. It's tiny, but not so small that you can't hold it. It's simple, but yet does everything you needed to do. And if you want it can connect to your phone by Bluetooth. And you can use the contour app to do even more. But you can find out about that at Contour Next one.com forward slash juicebox. While you're there, you'll also be able to find out about their other products, their test trip savings program, and you may even be eligible for a free Contour Next One meter, you'll find out when you get there at Contour Next one.com forward slash juicebox. YouTube can simply and affordably use the best meter that Arden has ever had. And last but not least, to support type one diabetes research and studies that are helpful to people living with type one including you. All you have to do is be a US citizen and have type one or a US citizen who is the caregiver of a person with type one. And in just a few minutes. You can add incredibly important answers to simple and easy questions right there from your sofa right on your phone or your tablet and help Type One Diabetes Research to move forward T one D exchange forward slash juicebox. Alright, let's get back to Katie.

Katie 24:23
Seeing the data for Caleb started putting a focus seeing that what's going on in between those checks are even when he wasn't checking, but it was still problem. Still problem. We had a problem. But it was like a problem from the time where he was at my house the time he left. So problem at home problem my grandma's problem at school school is a big issue. The nurse throughout elementary that was an awful, awful experience. So just like seeing all of that building up. We're already like in a tense mess when his younger brother was diagnosed Wow. So

Scott Benner 24:58
you slap the seat GM on him to go on the trip. I do think I want to find out how the trip went. But but but now you see everything that's happening now it's not just this random mess. It's an actual mess you can look at right? Yes. Yeah. And then your other kid gets diagnosed?

Unknown Speaker 25:14
Yes.

Scott Benner 25:14
Oh my goodness. Did they make it to Kenya?

Katie 25:18
They did. But Kim was not on the Dexcom yet. Okay, you didn't actually get on like a proof to everything and tell. So we started that process in July, I think July and he didn't get that Dexcom till December.

Scott Benner 25:31
Okay, so the trip had happened in between them. So it was really just business as usual while he was born. Wow. Pumping or injections,

Katie 25:40
pumping stuff. So we've been on the Omnipod consistently since six months into his thing, right? And, and,

Scott Benner 25:46
and so and I don't mean this as a judgement, I really am asking, at any point, did it feel to you prior to Dexcom his blood sugar's high, insulin makes you lower. He should have more insulin did that ever? Like

Katie 26:02
it did it did but I had this constant fear of insulin, like I was drilled in my head that if I give him too much, my kid's gonna die. Or he's gonna have a seizure. I'm have to dig out the glucagon and give him a shot. I was really afraid to give him too much. Or even change the settings in that talk.

Scott Benner 26:20
So the fear Got you. That's reasonable happens to a lot of people. And so were you trading so you weren't unaware of what high one season? High blood sugars we're gonna do to him long term? You were aware of that as well?

Unknown Speaker 26:33
Yes. Okay. Yeah. So

Scott Benner 26:34
you were just sort of trading? One for the one for the other. Yeah. Like, I always think of it. I know, this is like more of it. But I always think of people who jump out of windows to avoid fires. Right? You know, like, just just sort of like, well, this is gonna kill me now. And this is gonna kill me later. I'm gonna go with later. And you know, it's just a it's a, I bring it up, because I think that people could see it as an excuse. But it's a coping mechanism, and a survival instinct. Right? You know, it really is. And so fears is good enough reason is any so Okay, so how did the data stop you from being afraid?

Unknown Speaker 27:11
It did it.

Katie 27:14
I would call it out. And I was constantly emailing his team. And it was always correct. Two hours, correct. Two hours. So I'm doing that thinking that I'm making a difference, right,

Unknown Speaker 27:24
but I'm not.

Katie 27:27
But it was just kind of like a whole bunch of series of events that led us to making the change. I think that that was that. But then, Caleb was also right around the same time where Michael was diagnosed, Caleb was scheduled to do a GI stem test, because he hadn't grown in about two years. Okay, so no, wait, no hype, just kind of plateaued at the same.

Scott Benner 27:51
Yeah. And it's funny. So they want to do it. What test then

Katie 27:54
is called a cheap gh stem test growth hormone stimulation test,

Scott Benner 27:59
I would think they would want to give him more insulin so that he could. Okay. Yeah, but I hear you. So that test happens. I'm assuming that led to what? Nothing?

Katie 28:10
legia there was nothing wrong. Yeah. Diabetes.

Scott Benner 28:14
Yeah. What I mean, it's like, I don't know if people don't understand this or not. But, you know, you need that insulin, that's important. And it slows down other functions of your body. And if you look back, I don't know any of the details on this. Somebody not use any of the words, but a long time ago, people who had diabetes would not they would call it not thrive, right. Like they wouldn't grow or gain weight or anything like that. But it really just was they didn't have enough insulin, you know? Wow, that, so how big was he then when you got that test? You remember? Um,

Katie 28:49
I don't it's kind of black. But he's, he was about he's shorter than he is. Now. Let's say that he's, he's put on a good like six pounds since then, since we've kind of made a turn around and he's definitely put on height.

Scott Benner 29:02
Okay. And in how much time?

Katie 29:06
So if we go back to when we actually started, like making big changes, it's about a year.

Scott Benner 29:13
Okay. Let me share this with you. It's gonna come up in an episode eventually, but I don't think I've ever said it anywhere. When we found out Arden had hypothyroidism, so she wasn't getting enough, you know, of the hormone that she needed from her thyroid. Arden was five feet. Was she five, one or two, and weighed 75 or 80 pounds. And now I think we're three years later. Arden is 571 30.

Unknown Speaker 29:47
Wow.

Scott Benner 29:48
And I think if we don't figure out that she has hypothyroidism, she doesn't get a chance to grow. Right and I just I listened. I'm obviously not a doctor, but it seems to me that when your body is struggling like that, Other systems close down? Yeah. And and that's it, but I can't even tell you. She's one of the tallest girls in her school. Wow. You know, and she was one of the smallest people you'd ever met in your life like, no lie. She was out recently, well, before all this, she was out with my wife in a store that my wife said she bumped into somebody who used to coach Arden and softball, and they're chatting. And while they're talking, Arden realizes what's happening and walks up behind my wife sort of stands over her shoulder, but doesn't interject. She just stands behind her. And Kelly said that the conversation went on for minutes after that, until the guy went, Oh, my God, is that Arden. And she was taller than the guy. And like this grown man, and he had, he's like, I had no, he said, I just kept thinking, I wonder why this person is standing behind her while we're talking. didn't even ask her. So I'm excited to see you know, where your son gets to? It's Yeah, it's exciting. Are you bigger people? Like, are you tall? or,

Katie 30:59
um, I'm about five, four. And I think my husband's like five, eight, so we're not the tallest. But right, it'd be nice to see if he gets somewhere closer, even taller.

Scott Benner 31:08
I think the goal actually at that range, like the goal ends up being right like 5758. And then if they're going to be tall for your family to get to 510, something like that. That would be nice. I know, my son's pissed that he's not taller and blames me. I know, he's, I know, he looks at me, he thinks it's his fault. Yes, my wife is tall and all the men in her side of the family are very tall. So he's probably right. But again, I'm adopted. So I can just say it's not me. It's somebody else that we don't know. Okay, so I want to try to get the idea straight here a little bit. Okay. As you're trying to figure out Dexcom and you're starting to get the information back with Caleb. Yeah, mica comes online as a type one as well.

Unknown Speaker 31:53
Yes.

Scott Benner 31:54
Is it the I can't do this, the two of them feeling like what really, like, propelled you forward? Do you think do you think you just took a little while to figure out the Dexcom? Is it a weird coincidence that they happen at the same time or no?

Katie 32:06
No. Well, with mica, we had him tested through trial net.

Unknown Speaker 32:10
Okay, so,

Katie 32:12
so I knew so we were playing the waiting game for almost almost a year it didn't even even reach the airplane. We were testing him on a weekly basis. So building up with all these background things with Caleb happening, we're just playing waiting with Micah. So when Micah I noticed his blood sugar took one like fasting one, it was like 200 I immediately knew something was Sun was up. So we got into Caleb's endo and he pretty much told me you know, you have a year you have about a year with the with all those antibodies you have about a year before he gets it. So the waiting game goes on that 200 they diagnosed him that day, which is really weird because we were seeing an endo that Caleb used to see when he was diagnosed the same and always seen them and seen in the hospital. Okay, and that endo was the one we were squeezed into super mica. And they ran the agency I think Mike his agency was a like a nine. So like, I didn't need the doctor to come in and tell me anything at that point. We could have went home, but

Unknown Speaker 33:19
we're good. We're good. Let's go for a little bit and then we'll get going.

Katie 33:24
Yeah, so but it was January 17. The same doctor not in the hospital but in the clinic telling me that Micah had it which is the same day and doctor that told me that Caleb had it so it's like this little devil moment

Unknown Speaker 33:39
wait the same day?

Katie 33:41
January 17. May 17 2019 versus 2013 Wow, same doctor which we don't even see on a regular basis ever

Scott Benner 33:49
anyway that's weird if I was you I would never go into hospital on that day to get

Unknown Speaker 33:53
no

Scott Benner 33:56
I got shot like I'm waiting till tomorrow nothing good is gonna happen on this date and anywhere near Oh, doctor. Oh my god. Oh, sorry. That's Well, okay. So his is a nine Caleb's is still high

Katie 34:12
kills like a weapon or even like a 12. At this point. He's going up

Scott Benner 34:15
the other way because the food around you thinks you're not even able to keep it where you were keeping it. I got it.

Katie 34:21
Okay, no. And then I remember I had to continue work that day. We were short staffed. I came home after picking up my kids new prescriptions gave him his Lantus and he's screaming and he's crying at this point, which I don't blame him. You know, it's a whole different thing. And then I turn around and go in the kitchen. And there's Caleb, eating dinner without no Bolus, no checking anything and it just sent me off. I remember looking at him, and I kind of lashed out a little bit. I just remember telling him like, this is what you're going to teach your brother. This is what we're going to do. Are we going to do this for the rest of your life for my life, For his life, this is what we're gonna do. And I remember handing mica after my husband. And I was like, I can't do this. And I went down into the bathroom, and I closed the door and I turned on the ceiling fan and I just cried, like I curled up on the bottom had like a good ugly cry. It wasn't even like a, it was like a full breakdown. I think at that point, I just snapped, like, everything I had spent. And I think that went on for like, a good 30 to 40 minutes. And then I that was just like that aha moment, like, I'm not doing this anymore. I'm not gonna start it with mica, and I'm not doing this with Caleb. Okay. And that was a moment when I wanted to take an initiative that if I wasn't going to get help through the doctor, like I was gonna go and look and find it for myself.

Scott Benner 35:41
So I'm wondering, do you think that you just reset an expectation? Like, this is what we're going to do? And I'm wondering to how much of that because if I'm not sure how well I'm doing the math here, but uh, Caleb's 12. How old are you?

Unknown Speaker 35:58
I'm 32.

Scott Benner 36:00
So you had them when you were 20? If you would agree now at 32 you were a kid when you were 20? Right? Yes. Yeah.

Katie 36:06
Only not mature quite yet there? I

Scott Benner 36:08
don't think so. Is it possible that you start being a parent, not as an adult, and then it feels more like a collaboration like you don't mean like, there's this moment when you have to, like, I use my son as an example. He's a nice kid. And he's bright, and but sometimes he's gruff, and short. And I let him do that because too, he is. But every once in a while, I'll be like, Hey, I, what are you doing right now? Like, great, talk nice. And he's not like that all the time. Do you know what I mean? Like, it's every once in a while, it ends up being honestly, if he's exhausted, or tired, or he's just played for hours, you can't walk up to him afterwards and say, Hey, how'd it go today? Because he's gonna be a girl, you know, but and most of the time, I understand that, but but every once in a while, I stopped and I go, No, no, this is not how we talk to each other. And forget me, don't talk to people this way. Like, you're gonna end up with some girl who will put up with us. And that's not going to be good for you. Because nobody should put up with us like talking, you know, speak. And, and I think there's just a moment when you, you feel you feel like your job. I felt like my job was making my kids happy when I first had them. And then as you get older, you realize your job really is to direct them and to and to do the thinking for them that they can't do. And I just wondered if you got trapped in that in the beginning, so you know,

Katie 37:28
I think so. I think cuz I mean, I wasn't just that, like Mike and Caleb have two different life's like two different parenting experiences. Yeah. And I think when Caleb was little, like, I just wanted to make him happy. And I think I didn't put my feet down as much as I should have.

Scott Benner 37:51
Well, it's a Caleb got like the Ooh, wow, you got pregnant parents? Exactly. And Micah got that, hey, this is working out. And we're gonna have another baby parents. And yeah, we're gonna stay married and make a family. Those people right. Yeah. Now, you don't see that about yourself when you're young. And you're and you're, and that's happening to you think oh, or have a family now. But really, everyone else is looking at you going? I wonder how long this will last? You know, and for most people, it doesn't last very long. And you just end up being too, you know, intelligent, reasonable people who want to make a family and keep doing it. That's really interesting. Don't have a third baby.

Unknown Speaker 38:27
Oh, no, we're done. Back

Scott Benner 38:29
kiddo. Get like back it'll get like, old tired. You just like I don't care what happens?

Unknown Speaker 38:36
yourself.

Scott Benner 38:37
Whatever. Yeah. So to you, you basically walked up to Caleb while he was eating and said we can't do this. This isn't what we're gonna show your brother. You went in and did what you did. I know. I've been on the other side of that before those three boys sat in that kitchen. They were like this. Oh, yeah.

Unknown Speaker 38:57
Yes, she

Scott Benner 38:58
seems really upset. Did you come back? More of a? I don't know. Fierce. How did you come back up the steps. I guess.

Katie 39:07
I came back. I was actually calm. And I was like, we're gonna try something new. I don't know what that is. But we're gonna do it. And I think Yeah, we'll just skip. So it's like, Okay.

Scott Benner 39:19
I don't need her getting into this and being upset and yelled at me. So I'll just do whatever she says. But isn't that interesting? Because at any point along the road, I guess you've had to live with that. At any point along the road. You could have gotten that you could have done this. Yeah. But it took this other thing to happen.

Katie 39:34
Yeah, it's kind of like, in a way I know. sounds awful. But I feel like mica things happened for a reason. And maybe it took my gut getting that diabetes to shake, shake me shake me awake to take that control.

Scott Benner 39:48
Well, I mean, at those agencies, if you want to use that analogy, his diagnosis could very well have saved Caleb's life honestly, you know, because you guys weren't, you weren't getting it, and then you got the CGM and you had that That very there's some people talking about getting a glucose monitor then being overwhelmed by the information. Is that how you felt? At first? Okay. Yeah. And that's because you didn't have any tools you didn't know what to do with the data once you had it. Right. Yeah, that's that that really is. That's still a gap. Right? Like you can't you can't just be have all this thrown at you suddenly, cuz you already struggling. Now you're struggling with numbers you don't understand. That's not good. You know? What did you already well, what did you go figure out? It's time to find out.

Katie 40:32
So at this point, what we're in January, January, I started just like looking at things. So in my head, I was like, I can control his blood sugar if I limit the carb intake. Okay, so I was starting to look up like different things about I didn't fully consider doing like, keto or super low carb. But I started challenging Caleb to have less carbs, especially during the day. So when he is not with me, let's put a cap on how much he's eating for lunch, or because my mom would pack his lunch. So I would talk to her about what what's in his lunch today? Can we keep it under 40 grams of carbs? What about breakfast? So we started there, and I started seeing a small difference, but it wasn't slight. So maybe he was hanging around 300. Now he's hanging around 250.

Scott Benner 41:11
Okay, for me, but still a move? Mo Yeah, little cause and effect, you're saying at least.

Katie 41:17
Mm hmm. And then I remember, like going on Pinterest, I think it was Pinterest, and I was looking up different recipes. And they came up with grit, like a different group. I don't quite remember which group it is. But they're very, like intense about being very low carb and finished, intense. And I was like, well, maybe I should try this. But in my head. I was like, if I push Caleb this way, this could have a negative effect. Because he's already at an edge. I don't want to take away food and things and have him have another negative relationship with the day.

Scott Benner 41:48
This was just too far. The other way. This was your eat an egg. Now don't eat anything. Have a sprig of lettuce like it was Yes. Okay.

Katie 41:56
And then when I'm so switching up these recipes, I had an ad or like a picture of someone posted of your podcast.

Scott Benner 42:03
Oh, cool. This is the part I love. These are my favorite parts of the podcast good.

Katie 42:06
Yeah, I just saw. I saved it. I saved that in a little little board thing I had for a diabetes. And I kept it moving for a couple more weeks. But I was I had idle time, which I usually didn't have much, especially while Mike goes like, smaller. And I turned it on and I had Listen, I think it was your most recent episode. At that time. I think it was Katie and the old man. Okay. And listening to this teenage girl talk about how well she was managing her diabetes. While I'm over here struggling as like a 30 year old woman. Thank you, man wait for her. But I was like a light bulb went off. Like people actually can do this. And they're living and finding their story isn't my story, right? Something's up.

Scott Benner 42:52
Yeah. How do I make this match better and make it make sense? Hey, in that episode, I was the old man, right? Yeah. I seriously couldn't remember for a second. I was like, did we do like an interview with her and a father? Is that like, I wouldn't call someone else. Oh, this must have been about me. I really, but it's interesting, that that had so much impact on you. And as you were talking about, I thought, I don't remember that. All I can tell you is that from the title. I must have listened to it and felt like an old person talking to a young person. And that's why I call it that. And but she did a remarkable job of of handling herself. Yeah. And and that made you think like how this kid can do it? Like, what am I doing? Like, I gotta be able to do this right? Don't you think she'll be thrilled to hear that when this comes out one day? Oh, look what I did. So that's very cool. And so did you delve in Then did you start listening from live? Did you go back would you do?

Katie 43:48
I started like my, that process. I was gonna start from the latest and then go backwards. But I remember I messaged you. And I was like, Hey, I just discovered your podcast and I laid out my situation a little bit and then you messaged me back which I was shocked. Because I was like, podcast, people message people back, which is

Scott Benner 44:05
a thing. Like I remember your story making me feel very sad, which is what got me back quickly. And yeah, here's the trick for people if you must know, children with big agencies, or adults that sound like they're about to, you know, close their eyes and fall off a cliff. That gets me pretty right in the heart. Just so you know. So. Okay, so, okay, but then what? And

Katie 44:26
that was me both of those things. Maybe I was like,

Unknown Speaker 44:30
a bit of a mess is what we're saying.

Katie 44:34
And then I remember You shot me a message and you said start with these episodes. So that's where I started. So what's the different pro tips ones that you had at that point? And then like the ones about like insulin and just like resetting? Mm hmm. So I started there and I started taking notes. But the one thing you had said that will just make like a bit of a difference was Pre-Bolus Singh. So as soon as I got that message, that's what we did immediately. That day was starting 20 minutes set a timer, Mike is is 10 because he Flores with turtle. But doing that. And then I just remember having a conversation with him. I was like, Hey, we have nothing to lose. This was about spring break for school at this point, I was like, give me a week. See how you feel? See if it's something we can do. And just trust me, do you trust me? And he said he did. And within that week, we had seen numbers from that 250 inch cluster that 200 to higher 100. And to him that was like a win. Yeah, right. We're making process. So he we were all in at that point. Cool.

Scott Benner 45:39
He must have felt when did he start feeling low at like, 150?

Katie 45:42
Yes. So that was the conversation. So just like, just try to tough it out. I know, it's just your body adjusting, we just have to give it time. If it gets out of control, then we'll worry about getting some carbs in there. But that's really cool. It took a while for him to get that adjustment to be able to sit at like 80 and feel okay,

Scott Benner 46:01
right? Well, I mean, there's so much to it. Like you can say the steps. I think it's why the podcast is is valuable is because it's easy to say like I'll tell you right now, like here it is. Get your basil right, then Pre-Bolus. then learn about glycemic index and glycemic. There you go, you're done. Right. And so the problem is, is that there's a lot around those three ideas. And it's not as easy as just being told you know it, it's not, hey, listen, here's the steps for getting out of this room, stand up, turn the knob pull the door towards you like it is that but you know that you can you can imagine when someone says to you. Okay, so you started Pre-Bolus. And he went from, like, into the higher hundreds. That gets you excited. And you're like, what do we do? So what was the next step, but you keep doing what

Katie 46:44
I do. So then I was listening to like the bezels. And so that was a scary moment for me, right? Because I already had a few of insulin. So I'm gonna change something and said, I've never changed anything in the pump, without the doctors. So I remember listening to that episode, I was like, You know what, I'm just gonna do it. I don't think it's gonna kill him. So I'm just gonna do it. And once I started this, like that, that basil pro tip episode made all of the difference, Miko was a little bit easier. You still had him winning. So his was a little bit easier to get down. But Caleb, I would set the basil, I'd watch it for a couple of days, study it and make changes. And within like, a month, month and a half, we would see such a big difference in like his clarity app. Yeah, I remember there was one day we had like a family get together. I think this was June. So by June where he had hit like, 98% in range. Wow.

Scott Benner 47:35
And what's your range set out again?

Katie 47:37
for him? We had it set from 70 to 140.

Scott Benner 47:41
Wow, that's really great. That's exciting. Wow, good job. Congratulations. How did Caleb feel once his blood sugar got low and stable?

Katie 47:52
He was fine. And he was so excited. Like he would be so proud that that was it. And then you would see some of the other things that came with those high blood sugar starches. So like, he used to be really aggressive or kind of short. Um, I can't say for school, because that was summertime. But as we went into the fall, like his focus, his grades, his things, everything about him change,

Scott Benner 48:15
okay? Just the end, and for the better in your mind. And

Katie 48:19
the better. Okay, the better way better. All different kids.

Scott Benner 48:22
I know that I once got this some private note from a woman. And in the course of the note, she admitted that I used to just think my daughter was a bitch. Those were her words. And, and she's like, she's not. And you know, it took me, it took me finding a podcast to figure that out. And you know, that, I always think of that, because I feel like, like, you know, just for the same for you, like you could have had a relationship with your son for his whole life, or he's not really being himself, and you feel like this is who he is, you know, and that's just not something fair on it is just every level. Wow. What did the doctor say?

Katie 49:05
So let me see. So he didn't see her. I seen her right before we had to start the journey. And then we seen her in August. So I'm off for the summer. So we work this entire summer portion, working on getting it down. And I remember we went in, and then they ran my guess first I think what Michael was like a six. So he went from like the nine to a six. Yeah. And then Caleb's came in. And I think he was what like seven? Well, it was he was down there. And then like the look, he started, he lit up instantly. When because that's the first part we started. They take the agency, then they take you off to the wait for the doctor.

Scott Benner 49:41
Right, right. Yeah, that's how are supposed to.

Katie 49:43
And so when the doctor came in, like she was smiling, and she was just like, I had to make sure that when I printed this out that I had the right last names on here, because this is not what I see. Right? Especially like I double checked a few times before I came in, to make sure that I had printed out the right All

Scott Benner 50:00
right, right. I have to tell you, um, hold on one second. My wife asked me a question. Sorry. So I get them the mica thing. She might have seen that and just been like, oh, the kids honeymooning. This isn't reasonable. But she sees Caleb's. And is he is he from an 11? To a seven or attend to us? Yeah. Wow.

Unknown Speaker 50:22
Did you

Scott Benner 50:23
get the talk? Like you're making him love a lot talk? Is that the next Oh,

Katie 50:28
she was just like, onboard. She's like, what are you doing? Tell me everything. What? What changed? Wow, what changed? Because the last time I seen you, you were struggling. We were getting ready. Like I was setting up an appointment to see like the diabetic psychologists do everything like you are in a whole different space, what's going on?

Scott Benner 50:48
There, we're gonna send them to a psychiatrist,

Katie 50:51
like our family, like the therapy for like burnout, because we were just not getting anywhere.

Unknown Speaker 50:55
Right. Wow.

Unknown Speaker 50:57
And

Scott Benner 50:58
Geez, you were close. See? It's interesting, because you were close to if you go to therapy, then not that you shouldn't have. But if you do now, that's like now you've said, this is the problem, right? Like we burn out. If we can't do this, that's a problem. This problem needs to be fixed. And you start putting effort into fixing what you think is the problem. But the problem is just a side effect of not understanding how the insulin works. Right. Oh, wow. You were close to falling off a cliff there that you might not have gotten back up from? That's really interesting. Wow, this makes me feel nice. I'm happy for you. Yeah. This is very good. Wow, how long ago was that?

Katie 51:43
So that was so that initial one that was last, I guess. But like this last we had a telehealth one. What was it in March? Okay. Caleb is at oh my gosh, 5.8. Wow. And it comes to a point now where when she comes in, for the thing, she asked me, is it okay, if you want to change this Basal rate? It's okay. Are you okay? If we change these things?

Scott Benner 52:08
Let me just ask you, your thoughts on this. A little bit has to be, I don't want to say embarrassed, right? But there's got to be a part of it. It's gotta be like, Wow.

Katie 52:19
It's funny, cuz she's just like, I wish I could just bottle up what you do and give it to my other patients. And I was like, suggest the podcast.

Scott Benner 52:27
Yeah. Tell her I can talk them up and sit in a corner? I'll tell them for sure. Yeah, seriously, I like that, that makes me feel like I would love to. I would love to be able to do that. I would love there to be a talk at a hospital. And I could just give that first hour, answer some questions and then point people towards the episodes that would support it. I don't think that everybody would get it, get it right away. But I don't think that that many people would not get something from it. You know what I mean? You're always very kind online. Like saying, like tagging me and stuff. And I really appreciate that. But it's because it gets then I get the watch. Like you just talked about. Your son had diabetes, basically for eight years. For seven of them. He's it's just a disaster. Like, it really isn't. Things are going completely wrong. You take the bull by the horns when when Mike is diagnosed, and really you change everything. Like it's easy to sit here and be like the podcast, the podcast, but you decided to do something. And then you found something. It could have been something else, like you could easily be, you know, somewhere else right now saying like, Oh, thank you. I mean, obviously, this is the best place. That's not what I'm saying. But, but as long as you find something that's, that's really wonderful. Do you I want to know how it's changed your life. Like personally,

Katie 53:53
personally, at first, I was a little stressed because I was constantly kind of obsessing over looking at everything, but now I feel like even though diabetes is such a big part of my life with two diabetics and everything that goes into it, I don't think about it as hard. Like when I see a blood sugar rising, it doesn't stress me out as much because I know I can get it back. Right? I know that even if because those days like I'm not a super ninja yet. There's days where Caleb might get to a 200 if I didn't nail something but instead of being that old person that I was where I would wait two hours, like I know I can get it back and I get it back quickly.

Scott Benner 54:31
Yeah. Arden's blood sugar goes up and down. And we deal with it the way we deal with it, you know, as best we can last night. You know, we're all just sort of feels like we're all just laying around the house at this point, you know. So, like, both of my wife and I are able to work from home which is really lucky. And, you know, artists, it's summer vacation now. So last night, I think I said around like seven o'clock, I think our washers going which is just No, I had this conversation with my son where he's like, what's the big deal? I'm like you don't understand. Like, no one wants to buy a washing machine. It's just the saddest thing to do with your money, you know. But I, I felt like I had to go out to a store to look at a couple of them. I tried to do it online as best I could. So I laughed and Kelly's like, would you grab some soup and bring soup back for everybody? And I was like, Yeah, whatever. So I brought the soup back. And Arden's blood sugar was great, like, for a long time, you know, after the meal and everything. But she started to get low later at night, like, I think 1130 she started dipping down, and we thought we stopped it. But we didn't. And so we were kind of trying to just nudge it with some carbs. But we were trying not to give her too much. And then finally, she had to have a few more. So there was a moment in their blood sugar kind of dipped down into the 60s, and we got it back up. And now I'm trying to get it back up without it getting, you know, high. And I did. And I can remember being you and thinking, Oh great. She's low. And now she's going to be high. And I'm going to be up all night. And then that all starts to like build on itself and you get upset and anxious. And then there's no way they don't feel that you know, but last night, I was just like trying, we were joking around, like you know, and and fixing your blood sugar. She asked me for a little ice cream, like little frozen ice cream cones. They're probably not really ice cream. But you know what I mean? They're, they're in the freezer. And we came I came up in the top of the roundness of the cone was offset on the cone itself. So it was way off to the side. And I handed it to her. And she said my ice cream cone appears to have Spina Bifida. And I went wide. And then we like I was like, oh, there's something up with it. Like we're like nudging the top of it back again to the center. And then she ate it and leveled out exactly where I thought, you know, her blood sugar's 103 right now 12 hours later. So it does get easier once you have enough experiences over and over again. So you really feel like you're sort of in the beginning of it, but you're doing Did you ever limit carbs? Like you're talking about a one season a fives?

Katie 57:08
Um, so no, I don't like when we did that plan. I kind of let it go. Because I felt like he was pushing back. So he gets what he wants. See? Wow,

Scott Benner 57:16
that's so cool. And he can maintain this with grandma just as easily as

Katie 57:20
Yes, because well, now at this point, like he doesn't go karma so much in Marcos. He's now in middle school. And I work at the same school. So we go and we live together. So it's a lot of text communication. And mica goes to daycare. So when well, pre COVID he went to daycare, but she'll text me and sometimes he'll kind of a little but for the most part, it's not that you were

Scott Benner 57:43
able to handle the daycare to do text with them is that I handled? Yep. So

Katie 57:47
she'll text me back and forth. her grandma does when she's got him too, because he kind of splits between a couple days a week daycare a couple days a week, grandma

Scott Benner 57:55
got it. Dexcom Dexcom is amazing. All the pods amazing. I love Arden's meter, you know I that's why they're all advertisers. But if I could take text messaging as an advertiser, I would tell you that it's an amazing diabetes tools, just being able to text with somebody and have more immediate interactions so that you can kind of stay fluid with the blood sugar while it's doing what it's doing. It's trying to be variable, and you can stay with it. I'm very happy for you. Anything that we didn't talk about that you wanted to? This was really great. You were nervous, right?

Katie 58:28
I was nervous. I it's kind of funny. I don't do well talking to adults, even though I work with middle schoolers, and they're super judgy. And I'm fine with that.

Scott Benner 58:37
Do you imagine this means that I'm not really an adult? I'm perfectly comfortable. While we're doing this, I realize what you're saying. And I hear you. I'm sort of like a child. No, seriously, did we miss anything?

Katie 58:50
I don't think so. I just want to say that, you know, if you feel like you're in that spot of burnout, just get help. I feel like I should have gotten help a long time ago before all of this. But once again, everything happens for a reason. And guess where we're at now.

Scott Benner 59:06
I have to agree with you, I guess wherever and when you're struggling. I was saying the other day to some By the way, the entire time we've been doing this. I've been looking at Katie and there's a giant trolls that are behind you. And I have not been able to not see it for like an hour. And at first I was just like, what is that? And then I started figuring out I'm like, but it looks huge.

Unknown Speaker 59:26
Is it huge?

Katie 59:27
It is huge. This is our random room down here. And it's an office and a twice storage place.

Unknown Speaker 59:34
It's really big. And the sun's coming through the windows hairs all lit up. And

Katie 59:40
it was funny because it was just storming a little bit before we got on it was like pitch dark and stormy. Yeah,

Scott Benner 59:47
I I'm sorry. It was what I was gonna say is that I really believe. Obviously, nobody's perfect in any walk of life, right. So while you're running around day to day feeling like I'm doing great. There are things you're doing that are not right. Right, like they're or they could be better or, you know, I sometimes think, you know, in interpersonal relationships, you feel like, oh, we're good. But the other person might be thinking something. And there's a better maybe there's better than what good is, and we don't know, we get really comfortable with where we are. It's hard to talk to people, it's hard to ask for help. But this is just it's such a big deal. Like you can't, you really just can't ignore things and, and be and you know, your numbers are bigger. So they sound kind of more crazy 10 and 11, or whatnot. But the truth is, is that if you're a one c sitting at, I don't know, at an eight, or seven and a half like you, there's better. And it's not that it's not it's not any harder to be seven and a half, or eight and a half. It's no no, it's not it's not a ton more work to be six and a half versus seven and a half, like I mean, look at you. You're in the fives from 10. It's, it's insane. I really, I don't even know what to say. Like when you said that. It's crazy. Congratulations, I guess.

Katie 1:01:08
Thank you. Honestly, I would have never thought that we would be here. So it's such a good feeling to know that we can do it. And then as my boys get older, that they'll be able to do it.

Scott Benner 1:01:19
I'm glad. I'm really glad for all of you. I'm I hope we stay in touch over the years because I'd like to know. I'd like to maybe get one of those. Get get one of those kids older and get them on the podcast in a couple of years. And I'd love to know about that. It's really interesting. It really is. Can you hang on for a second? I have a question for you. That has nothing to do with this podcast. Okay, good. Thanks so much for coming on. I really appreciate it.

Unknown Speaker 1:01:40
Thank you for having me course.

Scott Benner 1:01:41
A huge thank you to one of today's sponsors, g Vogue glucagon, find out more about chivo hypo Penn at G Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL Uc, ag o n.com. forward slash juice box. And of course the Contour Next One blood glucose meter. Check them out with the links that are in your show notes of your podcast player, or there's links at Juicebox Podcast comm if you can't remember Contour Next one.com forward slash juice box. And of course that T one D exchange is that T one v exchange.org. forward slash juicebox.

Thank you so much for choosing the Juicebox Podcast. I'll be back soon with more episodes just for you. And a special shout out to all of you that take the time to put up those great reviews and ratings wherever you're listening. And of course, a special special thanks to everyone who shares the show with someone else. You're helping it to grow every day. It's absolutely fantastic of you to do and I could never say thank you enough.