#390 Nuanced Rose Garden

Chris is the father of a young man living with type 1 diabetes.

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

+ Click for EPISODE TRANSCRIPT

---

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 0:11
Friends, how are we? How are you? Who's we? Friends? How are we? Oh, I have no energy to re record that. So let's just keep moving. Welcome to Episode 390 of the Juicebox Podcast. Today I'm going to be speaking with Chris. He's the father of a child with Type One Diabetes and he does an absolutely marvelous job about discussing this subject about discussing the subject does an absolutely marvelous job discussing the subject but this is what happens when you let me do this on a Monday morning. Anyway, don't let my marble mouth influence how you think the rest of the episode is going to be because it's going to be absolutely spec donkey Lois tacular. Understand. And Chris very quietly does a job here today that he didn't realize he did. This is a very good episode. 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. We're becoming bold with insulin.

This episode of the podcast is sponsored by the Omni pod tubeless insulin pump, you can go right now to my Omni pod.com Ford slash juice box to get yourself a free, no obligation demo of the Omni pod sent directly to your home. do that now and a pod experience kid will be waiting for you in the mailbox. After that you can try it on and see what you think. The show is also sponsored today by the dexcom g six continuous glucose monitor. And you're going to want to go to dexcom.com Ford slash juice box to find out more about that amazing device. There are links in the show notes and to Juicebox podcast.com to these and all of the kind sponsors of the podcast. Now let's get the Chris. Here. Ready?

Unknown Speaker 2:18
Hello, everyone. My name is Chris. I'm the husband to Amanda stepped out of Alyssa who's 19. My daughter Emily is nine and Cameron who's our 12 year old with type one.

Scott Benner 2:30
Okay, so you and your wife have three children together and then you're the stepfather to one other Is that right?

Unknown Speaker 2:37
So Alyssa is our oldest She is my stepchild. And we have two others, Emily and Cameron to others.

Scott Benner 2:44
Sorry. Okay. three kids. type one in the family at all.

Unknown Speaker 2:51
Not on my side. My mom has type two that she developed way later years in our life. Amanda's my wife, Amanda, her uncle has type one. He had type one when he was a little boy, since he's been a little boy.

Scott Benner 3:07
Right? So there's a pretty clear line there. Was it one of those things that people expected or? Not really?

Unknown Speaker 3:16
Not really. I mean, as we missed all we missed every sign that was there. The way it kind of started was we we were sitting around the dinner table one night, and we looked at Cameron and said, Wow, he's looking kind of slim. Maybe he's going through a growth spurt. And he was drinking a lot of water. And Amanda drinks a lot of water just because she's active. And we just thought maybe he was being a responsible kid. And he ended up losing he lost about 10 pounds over the course of a month, which we didn't learn. We didn't learn that till his diagnosis.

Scott Benner 3:54
Yeah, no. I mean, how would you? It's tough. How old was he?

Unknown Speaker 3:58
He was 11 at the time. So today's actually his one year diversity. So 325 19 was when he was diagnosed.

Scott Benner 4:05
Oh, well, congratulations. So a year is a big accomplishment. Good for you. It is it's gone by quick. Oh, wait, you see how the rest of them go by? Well, you know, it's interesting. Let's kind of jump off of that for a second. What is different today than say nine months ago?

Unknown Speaker 4:24
stress level stress level is very much reduced.

Scott Benner 4:30
Do you think it's just the time that did that? Or like what do you think got you to that spot?

Unknown Speaker 4:35
I think it taught I think time was all of it. I think it was it was getting comfortable with making decisions. It was getting comfortable that not every decision was going to end to a to a better consequence. Okay,

Scott Benner 4:50
so everything just felt dire in the beginning.

Unknown Speaker 4:53
Yeah, it was scary. Yeah. I mean, I was I was absolutely frightened when it happened.

Scott Benner 5:01
frightened that in the short term, there'd be a problem in the long term. Can you kind of put into words what it was you were worried about?

Unknown Speaker 5:10
I just had no outlook, right? I was I was sitting here thinking that every every level of normalcy, normalcy was going to be taken away from us that, you know, he wasn't going to be able to do sports. How are we going to get through injections and constant finger pokes and watching his diet, all of those things were just huge concerns. I

Scott Benner 5:31
remember feeling like, there was a regular life that most people got, and a messed up life that some unlucky people got, and that we got that one. Like, in the very beginning, and sort of, from a youthful perspective, I guess that, you know, I always think of that old song, like, you know, what is it that at some point in the course, it's I never promised you a rose garden, or whatever that is, like, you know, right, but but when you're young, you just sort of feel like, Oh, I'm gonna go to school, I'm gonna learn something, I'll get a job, I'll meet a person, you know, maybe we'll buy a house or make a baby. And then you know, the kid will go to school, and I'll buy a couple of cars and save up a couple of bucks, and I'll get old, look at a tree and drop that. And that's how it's gonna go, you know, like this kind of just kind of idea, like idea of what a long life looks like, with a family. And then when you really start meeting other people, and talking to other people and seeing what's happening to them, you recognize that, that really, nobody has that, for the most part, you know, anybody who gets that is just, that's random. That's the, that's the random, right? The that nothing really went wrong the whole time. You know, that that's the 1% not the, not everybody else. So you know, everybody gets a thing and, you know, art and got diabetes. And, you know, we just were like, Alright, well, let's figure this out. But yeah, in the very beginning, I remember feeling like, oh, some people get a good life. And some people don't, we don't, you know,

Unknown Speaker 7:03
well, and this was another step of just tragic events, somewhat to us. are life changing events, I guess I should say. So, Emily, who's nine, she had wilms tumor when she was four months old, which is a kidney cancer. So she had to she had to lose a kidney and go through 26 weeks of chemo. She's all good now, other than not having one kidney, right. And then Amanda, my wife had, she had a brain tumor a couple years after that, which she is 100% in grade as well. But just, this was just another having Cameron have his diagnosis, just like, what's next?

Scott Benner 7:43
Yeah, I would imagine after those stories, that it's hard not to, like wake up in the morning and think like, is this the day my foots just gonna fall off? You know, like, what crazy thing is gonna happen? Wow. So your daughter? What was that called that with her kidney? It's called wilms. tumor

Unknown Speaker 7:59
wi lmsw. tumor. And she was

Scott Benner 8:01
very young when she had it.

Unknown Speaker 8:03
She was four months old when it was picked up on a wellness check and sent us straight to children's that our local one of our local children's hospitals for a scan. Wow.

Scott Benner 8:15
And is that something they they couldn't remove that? So they just took the whole kidney?

Unknown Speaker 8:20
Yeah, it was attached to the kidney. So the only safe way to get rid of the tumor was to take the kidney with it.

Scott Benner 8:26
Now, if she does that make her I don't know a lot about cancer, I guess thankfully. But does that make her in? She they consider that a cure? Is it remission, like how did they talk about it? It's their follow up to it.

Unknown Speaker 8:39
Yeah, so they considered once she was five years. free of it. She was in remission. So we would go back. And you know, initially, after it happened, you'd go back every three months for a new scan, and bloodwork and then it would stretch out to six months, then it would stretch out to a year. And then once she hit five years, it was official, you're in remission. You could come back, you know, every couple years, just to check in with us. I see. And that was it. And how old is she now? She's now nine,

Scott Benner 9:12
nine. So this is this is a long time ago. Do you still think about it? all the time? Yeah, I can't imagine that. It would be I just feels like it would be impossible to just forget.

Unknown Speaker 9:24
Yeah, that was that was tough, you know, and then getting through that and then getting to getting to Amanda and her her brain tumor and getting through that. That was That was tough because I was sitting there thinking, you know, I'm gonna have to rape you know, what could happen with this? Right? So,

Scott Benner 9:41
how old was your wife when that happened?

Unknown Speaker 9:43
You know, it was 2014 so

Unknown Speaker 9:47
she's, she's 44 down, okay?

Scott Benner 9:53
Anything like that in her family like this cancer run in her family.

Unknown Speaker 9:57
Um, not to my knowledge, interest. Single enough my mom, my mom's at like, she's 84 now. Yeah. And she had a brain tumor when I was a little kid. I obviously there's no correlation between the two of

Unknown Speaker 10:09
them. I don't know, Chris, maybe you give people a brain tumor. It's possible.

Unknown Speaker 10:14
It's possible.

Scott Benner 10:15
I don't think it is. But you're the only you know, the only thread I see between those two people not knowing much about your life. Sorry, I don't think most people would joke about brain tumors. And I'm not joking about brain tumors. I'm, I'm literally calling you a mush.

Unknown Speaker 10:32
Yeah, well, I know once you once you move past these things, you know you definitely in Cameron's another side of that. I mean, we've moved past and yeah, we're, we're getting on with life.

Scott Benner 10:42
So anything you can do, right? I mean, what do you like it? Yeah. What do you do you sit around and just wait for something bad to happen, you know, it's either going through or it's not and in between now and then or never, or a lot of days that you get to enjoy. So, you know, in your house avoiding the Coronavirus

Unknown Speaker 11:00
are Yeah, exactly. Are you

Scott Benner 11:01
sequestered?

Unknown Speaker 11:05
Yes. To some extent. So we live in Washington State. Okay. You know, this is kind of where it started. We live south of the Seattle area about 50 miles and I'm fortunate to work from home right now. Okay. kids are out of school. So we're, we're staying put as much as possible.

Scott Benner 11:23
Yeah. Are you making out? Okay, we're doing all right, actually, so far.

Unknown Speaker 11:28
Yeah, we're doing okay. I mean, kids are doing great. I mean, you know, endless, endless games a fortnight for Cameron and Emily doing whatever she's doing plus mixing in some school stuff and some outside activity. I think. I think the the the kids are definitely faring better than the adults.

Scott Benner 11:43
Yeah. I, I feel that

Unknown Speaker 11:45
they don't stir crazy. Well, they're not

Scott Benner 11:47
worried about paying bills. So correct. Yeah. Correct. They've got that they've got that for them. My kids are on a personalized sleep schedule. At this point. They just go to sleep when they want to get up when they want to. They're getting their work done. It's like odd at odd times of the day. I passed my son at midnight last night. I'm like, What are you doing? He's like, I'm getting a shower. Like, yeah, this seems like the perfect time for that. So

Unknown Speaker 12:09
yeah, you know, I've, uh, you know, through all of this, I think I've, you know, I've kind of learned to stay away from the news as much as I can. I just, I don't I don't have the capacity to take all the all the all the bad stuff. So I, I kind of shelter away from that a little bit. Would it hit you hard if you if you

Scott Benner 12:27
got a daily dose of what's happening? Do you think it would be overwhelming? I think so. I think

Unknown Speaker 12:35
I get I get more concerned, you know, after everything I've ever that our family has been through of, I get stuck in the what could possibly be next? And I don't want to be there.

Scott Benner 12:43
Right. Right, right. Well, I think the good news is, is that if you're a healthy person, you know, you have a better chance of maintaining a healthy situation, if you do get sick, you're got a better chance of overcoming that illness. And you know, your, your son's doing great with his diabetes, right? Like, you're, you're definitely one of those people. I know. Because you're communicative with me. And you know, from online, obviously. And I feel like I've watched you figure this out and stay focused on it. In an impressive way. I know, I've never said that to you, I would have no, I would have had no reason to say said that to you, but you're interested work, you work hard at understanding the diabetes. You don't. You're not not impacted by it, but you don't let it get you down. And you're always looking for more information. I think that's just a perfect way to be. So

Unknown Speaker 13:38
yeah, and that's kind of how this all started. I mean, when when, when I talked to you the very first time, what I was ultimately looking for, at that point was just I wanted to surround myself with, you know, people that have the knowledge that could help us do this as best as we could. Yeah. And, and that's why, you know, Jenny Smith's in our life right now, I just, I we had our, our monthly Skype meeting yesterday. And she's gotten us to a good place. And the the, the juicebox Facebook group has just been I mean, I've never been a part of a Facebook page that just had a group of people that just undeniably wanted to help each other. It's just, it's amazing. I, you know, it's so funny. I don't usually record twice in a day, but I just finished with Jenny like an hour ago. And that Facebook group came up. And I told her how there's times,

Scott Benner 14:31
I do my best to look at it. And you know, but it's not a it's not a conduit directly to me, I just, I get in there as much as I can. And there are times I'll see something, and I'll think, Oh, this is the answer to that. And I'll go to type it in somebody already typed it out. And I'll just like, I'll just like like it and like, you know, be like this. This is what I would have said, uh, but I told her there's also times when I look and I think oh, that's, that's more thoughtful than what I was going to say. I just realized that he used to talk all the time about people come into the diabetes community, they learn what they learn. And they go back and live their lives, which is incredibly valuable. But it's also very cool to see a small band of a couple of thousand people stay back to say, you know what worked for me hear this, or you should consider that and I should knock on nine pieces of wood. But never judgmental, not snarky. Nobody's, uh, you know, once the like, start a flame war, like, I keep thinking like, This can't go on like this forever. But maybe it can, you know, maybe if you get the right people together, and you're, and they're, you know, comfortable. And then the new people come in who need information and feel like I'm in a place where there are people here who know better than me, I'm going to sit quiet and learn. Maybe that's the right mix. And because I do agree, it's working, like incredible. I mean,

Unknown Speaker 16:00
I mean, boy, I really hope so. And, and I can, I can tell you that I was right, about the time that camera was diagnosed, I was I was just mentally burnt on social media. And, you know, Facebook in particular. And I was I was, after Cameron's diagnosis, you know, you sit in the hospital for five days, I mean, he was in, he was in DK when we got there. And we were in the ICU for three days. And I just, I just started doing research. And I reached out to a couple things, and I got these just all of a sudden, I just getting these these private messages from strangers, that were just offering help and assistance. And, you know, one of them had led me to you and hopefully I would have found the podcast anyway, but just people just jumping in and wanting to do nothing, but you know, share and not dictate, but share what it worked for them and, and things to go look into. I was just and then find it. And then once you started that group, I'm just I'm re energized. And and there's some toxic groups out there too. I mean, I got into a some type of an online altercation on Facebook with with on a on a group that that I won't say, but she was chastising me because we were on a CGM so early. She says, you know, you really need to be, you really need to learn diabetes for a year before you start getting on technology. And I was I just I, I couldn't fathom what she was trying to tell me because I understand. I've been around people that had type one. And I seen their struggles of the constant finger poking things and, you know, the shots and the stresses of that. And I guess maybe we're I don't know if there's a term for it. But we're maybe one of those, you know, new new generation diabetics, like Cameron's had one injection of insulin, since he started on his on his own his pump. Back in middle of May, last year, he's only had one injection. And he's scared. I mean, he doesn't want he doesn't want to have a needle. He doesn't. You don't want anything to do with it. Mm hmm. And so I guess the point of my story was, is that the the podcast is absolutely refreshing. And it's great. I love the people that are over there. And I love that they help out. But like I said, there's just there's some toxic groups out there that are just not don't seem like they're given really good information. And I've, I've subsequently, you know, deleted myself for most of them. Yeah,

Scott Benner 18:34
it's tough when someone has come up through a generation of doing something. And then the next, like you said, like a newer generation has different tools. They're having different outcomes. They're having different experiences. I always try to put myself in the shoes of the people who came before and think. Would I sit there if I was them and think, are these new people they're having like, what like they just what they just put on a pump and a CGM listen to a podcast and they have a one C and the sixes, like, That's not fair. I struggled forever. You know what I mean? And, and the or the idea of like, you have to really live in the, you know, in the battle, so you can understand it. I get the overall idea behind that. But that was something people used to say when pumps were available, but not CGM. Right, and so like you really have to understand the ebbs and flows of how your blood sugar works. Okay. I don't know what that has to do with how I deliver my insulin First of all, but I do think it's, it's a reasonable statement, except it used to take years to learn. And now, you know, if you had a CGM on you could probably figure it out in a week. You know, and and that's got to be hard to hear if you were one of the people who had to spend years because the tools and and the direction were different. And having said that, Jenny and I just spoke at length about how most doctors are still teaching like it's 1986. So, you know, it's a very weird space. You have to be careful where you get your information from, I guess

Unknown Speaker 20:14
it's interesting you say that because, you know, we part of the, you know, being in the hospital for five days, as you get a, you get a diabetic educator that comes around, and they really teach you the very basics of diabetes. Yeah. And if we left the hospital with the types of strategies that we were taught there, and nothing against them, because I know that they see so many people. And you can't, not everybody can get the advanced course at that point. But if I was still invoking, and those types of strategies that I was taught when we left the hospital, I don't even want to know where Cameron's a one c would be right now. I mean, he was he was 11.8 at diagnosis. And he two weeks ago was 6.7. And, and I think with with a ton of improvements still available to us. There's a lot of good road ahead of you still. Absolutely. And I don't I don't think that I don't think we'd be anywhere near a 6.7 using the strategies that we were taught in the hospital.

Scott Benner 21:11
I Oh, yeah, I think it bears repeating that, you know, a year into Arden's diagnosis, I was frequently crying in the shower. And her a once he was closer to nine than it was to eight. And I did not know what I was doing. I constantly felt like I was killing her either today or, you know, tomorrow. And I was listening to what I was being told. And my daughter goes to a good hospital. You know, I mean, we're not we're not in the middle of Podunk somewhere, you know, hoping that the guy at the general store who's also the barber understands diabetes, it's, I was at a real place and I was doing what best practices dictated. You know, 15 years ago, I,

Unknown Speaker 21:55
I was telling jetty, we went to our into appointment. And our endo is great. She's absolutely fabulous. And but she hadn't she had nothing for us. I mean, she didn't have any changes to recommend or anything. She thought we were doing great. Right. And, and we moved on.

Scott Benner 22:13
That's cool. So you're using Jenny now to fine tune is that which because six seven is pretty great. So yeah.

Unknown Speaker 22:23
One of the one of the challenges that I'm still struggling with is I think I'm, I'm, I'm sort of still in reactionary mode. Like, I don't I don't dose off of any history, I dose off of what, what some what feels right. I mean, there's some, there's some card counting in there as well. But, you know, I would say looking at Cameron's diet. I mean, there's you know, there's there's less than there's there's less than a dozen meals that are on, on repeat. I look at every meal, I look at those meals and I basically dose and based upon what, what feels right at that time. Yeah. And sometimes I'm right, sometimes I'm not. But you know, we have to there's, there's an occasional bump in nudge that has to happen, or there's an occasional Temp Basal that has to that has to be adjusted. And I think that's what I could get a little bit better at. And that's kind of what I need a Jenny for was, I needed Jenny for advice on how to manage Cameron's blood sugar's and it just really having somebody that could be there to look at the data and say, and just be another set of eyes. Because for a while there, and I think I messaged you a while ago when I was struggling. And it was I feel like I'm just I think this is this was an episode earlier on. I feel like I'm like this plane just flying over dropping insulin on Cameron with no regard to what it's doing to him. Because I couldn't figure it out. And once I got the bazel, right, and that was that was the biggest thing. And I've heard you say this in different Jenny say it so so many times. You got to get the bazel right. And once jetty helped us get that bazel, right. That's when things really started to click for us. And Cameron's eight one c went from I think he was seven, four. Right, before we started with jetty. And then he went to 6.7 on this last one. And I think that, you know, Jenny and I are gonna keep working together, but I think we're gonna, we're gonna continue to improve,

Scott Benner 24:18
I have to tell you that. In the episodes, I can, I can obviously see how many times episodes are downloaded. And in the pro tip episodes, the one they're all pretty close to downloads, you know, I mean, so, you know, we the first one, and the third one, you know, have about as many downloads as the 10th one and the 15th one in the pro tips. But the one episode that has less and it's measurable, is the basal episode. And I'm at the point where I want to run around with a bullhorn like yelling at people like you got to listen to me. It's the basal insulin like stop Ignoring that, it's it's everyone treats it like, like it's just not important. dictionary mean like it's it's it's the whole thing. Nothing works without bazel. No one believes that and I wonder how did they make it that far with that feeling? Like is everybody is it all reactionary in a way that, but listen, when I miss a bolus of a meal, I see my blood sugar go way up. But I don't think like, Is it the difference between micro and macro? Like, is that why Jenny's helpful even like, because while you're so busy, like just drilling down on the small things, Jenny's able to step back and see the big picture, and then talk you through the big picture. I think that's it. I think that while you're in the fight, you don't I mean, like, while you're in the foxhole, you're worried about getting shot, not worried about the geopolitical ramifications of the warrior fighting, I guess is the way to think about it. Yeah, in a way that nobody will relate to. But But, but But seriously, like, you're so busy in the fight, you can't see the war,

Unknown Speaker 26:01
I guess. I think we I just got tunnel vision. And I felt like I wasn't making any improvement. Because it was just constantly it was it was it was all about the bazel. It was because the bazel wasn't right. And nothing that I did, would produce good results, because because we didn't have the Basal where we should have. But you

Scott Benner 26:21
heard me say that on the podcast, and it still didn't. Am I right?

Unknown Speaker 26:25
Oh, absolutely. I just couldn't, I couldn't do it on my own. I couldn't find the bazel. I couldn't find it on my own. And once Jenny gave me the basis from it, and I've probably created two or three more bazel programs. And the other thing I've learned is, it's an It's It's not every day is not the same. There are adjustments that got to be made. I mean, this morning, I was looking at, you know, Cameron woke up it, he woke up at 131. And I was like, Yeah, I think I can make an adjustment. Because what Jenny saw yesterday, when she looked at Cameron's data was there's a certain point in time somewhere around 4am, that he starts to just kind of slowly drift up. And, you know, and then I go back and look at the data. I'm like, Okay, well, you know, let's, let's make a, let's make a small adjustment here. And we'll, we'll see what happens tomorrow. And if that doesn't work, then we go back and make another adjustment for you. So it absolutely I needed someone I just couldn't do it. I just couldn't do it by myself anymore. I just got to a point where I needed that extra set of eyes to point out the obvious, which was the bazel

Scott Benner 27:30
right. Now, I know I I was giving a talk recently, and I just set up and I was like, Listen, guys, I could just tell you, it's timing and amount. Okay, I'll see you later. You're gonna be like it, but that's but what's the rest of it? And I think even when people hear timing and amount, they think bolusing, but it's the bazel needs to be timed and well measured as well. It's you know, so I'm helping Arden's friend right now. And we, you'll hear she's going to do an episode you'll hear what happened to her, but she had a significant improvement quickly, and then got yelled at by her doctor. And that scared her mom who re changed her settings and her blood sugar's went right back to the way they were. And, and, you know, when I finally, because I was following her CGM, I let them go for a while. They're not my family. I'm not in charge, you know. But I finally texted, I was like, Listen, you know, if you want the success you were having, you got to go back to this. And these three bazel rates, you suddenly have that I can't make any sense when I'm looking at them seem like they're set up to keep her higher, not lower. And so let's go back to one basal rate and start over again. And, you know, we did that and took us two days. And I just looked at I literally while you were talking, you made me think of her I just looked at her 12 hour graph. And we're good. It's amazing. But yeah, you know, again, when you're that's me looking from the outside, it's not them because they were trying they weren't not trying at home, you know what I mean? So yeah, this is it's super important.

Unknown Speaker 29:08
We got a long way to go. We you know, we got a long way to go because I want Cameron to be at that place where, you know, he's, he's comfortable with doing sports and activities. So there's still a lot there's still a lot for us to learn. It's school time is one that's been challenging for us. And it was interesting because there was a there was someone that had posted something in the in the podcast, Facebook chat, and Cameron. His blood sugar goes up as soon as school starts. And as soon as school gets out at two o'clock, he plummets. And it's social, those Yep, stress. So those are areas where we're we're still working on trying to try to figure that out. So Jenny's Jenny's going to help us some more with that. Unfortunately, you know, sports has been canceled. I really need a Jenny for that as well. football was getting ready to start for Cameron We last year he did all of his sports he did. He did baseball, he did football.

Unknown Speaker 30:07
And we were able to manage through those.

Unknown Speaker 30:11
But we needed a little bit more help.

Scott Benner 30:13
Yeah, there's nothing wrong with it. I'll tell you that since you know we've all been locked in our houses now. All in second, I'm going to tell our new Bolus even though this thing goes up what anything Arden's blood sugar has required significantly less insulin, since she's not going to school. Arden gets good grades. She's reasonably popular, she has friends. There's nothing about school that is a burden to her, other than she doesn't particularly like it. And she's using significantly less insulin now that she's not in school.

Unknown Speaker 30:54
So it sounds very similar to what's going on here too.

Scott Benner 30:56
Yeah, it just, it could very well be for a lot of people. And I don't think it's something you would think about, you know,

Unknown Speaker 31:05
I've been, I've been filling pods with probably 20 or 30 less units the last two weeks.

Scott Benner 31:12
Well, it's significant. I had to move Arden's bazel down, I had to move, I had to move a lot of settings, and, you know, take take insulin away. And it took me a day and a half to figure it out. Because I went the wrong way at one point. Excuse me, and I had to dial something back again. But you know, it didn't, it didn't take long. And that's something it's interesting. I hear you actually, in a half an hour have made me proud of the podcast and made me feel bad. Not on purpose. But let me let me tell you why. Because I know the answers are in the podcast. But I can't be there with each person to say, hey, that thing you're hearing, that's not the right, you're taking the wrong thing from it. You know, to me, like I really wish I really wish everybody could, like, you know, as I'm helping Arden's friend or making an adjustment to ordens thing, or listen to Jenny, talk to you, like every person with diabetes deserves a day and a half with a person who can just look at their data and go hey, this is this move this here. This is why nobody deserves to like struggle along like this. And I it makes me makes me a little sad that I mean, that's reality, I guess right now.

Unknown Speaker 32:26
Yeah. And, and we're absolutely fortunate. I mean, I'll be straight up honest financially. It's okay for us to use jetty. Yeah. Insurance won't, insurance won't pay for it unless I can get the window to say that it's required, right. But I'm not ready to go there yet. So I'm going to do it as long as we possibly can. I'm going to learn as much as we can. And keep moving forward. I think. I think everyone should leave the hospital with a CGM, and they should leave the hospital with a prescription to go listen to to some podcasts.

Scott Benner 32:58
I got a beautiful note from a CDE last night from Australia. And she said that she teaches from the podcast every day. Every day, she talks to people she talks to them about the stuff that she learned listening to the podcast. So

Unknown Speaker 33:14
a few a few episodes behind.

Unknown Speaker 33:18
I think it was a do hard things. I think that one took a toll on me. So I slowed you down a little bit. it slowed me down a little bit. So I got to I got to catch up.

Scott Benner 33:27
A long time ago when I was a young boy, my parents bought me a remote controlled car. Now this was in the 80s. So technology was you know, dicey. This car had a controller, and the controller had a long wire. It was wired to the car. So as the car moved, I had to walk with it. So was it remote control? Not really, it was controlled. I guess remotely from the car but you know not didn't give me any real freedom to pick that car out for a ride and really see what it could do. That is sort of how I think of the on the pod. It's a tubeless insulin pumps. And because there's no tubing, the pump, the site that is on the body is not connected back to a controller. You see what I'm saying? So you can go run free, live your life jump over hills made of dirt. This is how I imagined I was going to use my car until it ran up the hill and then flew into the air and the wire ran out of you know slack and it just yanked and came back. But that won't happen with you. If you try the Omni pod because it's not attached to a controller. This is very, very, very important. It's also important because you can keep it on while you're swimming, taking a shower activities. All places where tubed insulin pumps often require removal and you need Insulin 24 seven, not just when it's convenient. You can try this for yourself because on the pod we'll send you a absolutely free. Zero obligate, do you hear my voice obligation sent absolutely free, no obligation demo of the pod today, go to my Omni pod.com forward slash juice box they have that sent to you right now. No Obligation doesn't cost you anything yet Can't go wrong. In this scenario, let them send it to you figure out if you like it. It's that easy. And you know what else is easy? Huh? Did you see that coming? I bet you did. The Bolus that aren't in just made from macaroni and cheese for her lunch. I know most of you hear macaroni and cheese and think, no, I can't do that I've tried and that makes blood sugar's 400. And it stays like that for hours. And it's just impossible. Except Arden's blood sugar is 119 actually started at 140. She got a little rise, we're not sure for what Dexcom said, beep beep. We put in some insulin, the 140 started to come down. As it began to move. It wasn't even falling yet. She said, I'm going to have macaroni and cheese. So we made macaroni and cheese. We Pre-Bolus for it. We were properly aggressive with the insulin, able to wait until it was time to eat, meaning I was able to balance the action of the insulin with the impact of the carbs. Because I could see Arden's blood sugar on her Dexcom g six continuous glucose monitor, I was able to make an accurate bolus for a food that most of you think is almost impossible to Bolus for. But it isn't not when you can see the data dexcom.com forward slash juice box Get yourself a G six right away, as soon as possible. Have macaroni and cheese again, without a blood sugar that ruins your day and makes you feel like let's be honest, makes you feel like crap. There are links to all of the sponsors in the show notes of your podcast player, and at Juicebox podcast.com. But you're looking for my omnipod.com forward slash juice box to get that free, no obligation demo today. And dexcom.com forward slash juice box to start with the G six. The results had and these examples belong to us. And yours may of course vary. But I like your chances much better with rock solid technology than I do without it. Okay, we're gonna get back to Chris now. A lot still to come.

Unknown Speaker 37:48
I thought one thing that would be interesting to share and I think this is you know, the, the the Miss signs. You know, kind of Cameron's story of of how this went. You know, he he was drinking lots of water. He looked like he was slimming out. We went he went to a baseball game. My daughter's boyfriend had a baseball game and then they decided to go to dinner afterwards. And Cameron decided he wasn't hungry. And so he didn't eat dinner that night. The next day I had him. We were going to Supercross and Cameron was so excited to go to Supercross. And he just he looked tired. He just didn't look like himself. And we got on the train. We got to Supercross and we had to walk from the train to the stadium. And we had to stop multiple times because he had it. He was trying to catch his breath. Yeah. And I couldn't figure out why he was exhausted. And we went in we kind of did the whole little, you know, walk through the pits thing and, and you know, Cameron said he's a huge football fan. And and one of the one of the writers Pitts was marshawn Lynch in camera. You know, he Cameron just adores marshawn. Lynch. And he wasn't even excited. Wasn't even excited that he was there. And I have a photo of Cameron that I took. And he doesn't even just I don't know if you could tell in someone's face that they don't look right. But you can tell in his face that he didn't look right. going back and looking at those. Those photos now. Yeah. And we got done with our pet walk and the race was getting ready to start. So we went and sat down. We watched the first race and we had a conversation. He wanted a snack, and he wanted like some type of ice cream and, and then a minute later, he said that he didn't want it. And then a minute after that. He said, Hey, I think I want some ice cream. And I said, Kevin, you remember the conversation we just had and he just kind of looked at me and he said, No, I don't remember. Yeah. And he had water with him and he said that water was tasting funny. And I said okay, he says Can I can I have a soda? And I said sure we don't. We don't drink a lot of soda in our family. So we walked up the stairs and bottom of soda. We went back and sat down and then he said he needed to Go to the bathroom and we were one race into this and, and I said, Cameron, are you okay? And he said, No. He said, I'm just I'm really just not feeling good. And I said, well, let's, let's get out of here. And he says, No, I feel bad. I know you wanted to come and I wanted to be here. I feel bad. And I said, No, I said, we're, we're getting out of here. Mm hmm. So we we went to the trade walk back to the train, same thing just exhausted. You know, he had to stop a couple times. We got on the train. And you know, I had the the big plastic, you know, clear stadium bag that you take in that they require you to take, and I started emptying it, and I put it on my lap because Kevin says, Hey, Dad, I don't think I'm gonna say much on the way home. And I know what that meant. That meant, hey, my stomach doesn't feel good. I'm gonna focus and try not to get sick. Yeah. So I took that bag out. And I'm like, Alright, just in case the inevitable happens, right? I'm gonna be somewhat prepared for this. And we're halfway back, you know, to the parking garage from the train station or on the train. And he just unloads and, you know, I catch as much as I can and kind of inconspicuously clean up as much as I can. And we get off the train. And I tell the, I tell the security guys, hey, you know, my son got sick, and he threw up on the train. He's like, I don't worry about it happens all the time. So I got camera cleaned up, we got him in the car. And you know, he slept the whole way home.

Unknown Speaker 41:21
You know, it was it was late. When we got home. He went to sleep. I checked on him in the morning, when he woke up and said, Hey, are you feeling bad? He said, he said, I'm okay. He said, Can I have some toast? And I said, Sure. So I made up some toast. He laid around most of the day, just not feeling good. And then, you know, a little bit after lunch, I said, Hey, you know, what's hurting? What do you what do you feeling? And he said, is lower right hand side is lower right side of his stomach was hurting. And, you know, first thing I thought was, you know, maybe, maybe appendicitis. So we ran them over to the urgent care. And, you know, I told the urgent care, Cameron, you know, as a, as a younger child, he had, he had some constipation issues. And he said, You know, I don't the urgent care doctor, so I don't think that's it. He said, and I'm going to do a couple other tests. We, he did a couple stretches with him and said, You know, I can't really rule out appendicitis, he said, but I can't do anything about that here. You got to take him to the Children's Hospital. So I called Amanda and I said, you know, hey, we're going to the Children's Hospital. So we go there. And, you know, we sit for a few hours and wait, finally, get us back there. And, you know, the doctor comes in, looks at looks them over? and says, Well, I think we're gonna do an X ray. So does an X ray. And determines that Yep, sure. Enough, you know, Kevin's Kevin's backed up. So they do you know, they do their wonders. And and, you know, by that time, it's like, you know, it's nine o'clock at night. And you know, Kevin's not having any, I mean, we're laughing about it, because he's, you know, he's got to keep getting up and going to the bathroom. And he just, he doesn't want he doesn't think any of this funny, right? And no blood test, right? And what I've learned from this, just all you needed was the simple blood test. Yeah. So we were discharged from the hospital, and he's exhausted, we're driving home. And we get into bed, probably a little bit after midnight. 4am comes around, and you know, I watched him, you know, I'd wake up every it felt like I wake up every 20 minutes, and I'd look at him just to make sure he was alright. And I'd see he's breathing super fast. And it gets to about 4am. And he wakes up and I said How you doing? He said, I'm okay. He said, I'm going to I'm going to go to the bathroom. And he had climbed in a bed with me and Amanda went and slept with Emily. And he came back and I said, I said You're right. He said, Yeah, I'm okay. He said, Can I have some water? so sure. So I went, got him some water. And then about 10 minutes later, he was having, he said he couldn't breathe. And he was having just tremendous pain in his stomach. And I looked at Amanda and I said, you know, we got two options here. we'd throw him back in the car and running back to the ER we call 911. And he just said, Dad, I can't breathe. And so I said, that's it. I'm calling 911. So waited, you know, waited a couple minutes for them to show up. And they came in and checked him over. Because heart rate was at 180 beats per minute. They said he was getting 100% oxygen, but he just kept saying he couldn't he couldn't breathe. And so they called the Children's Hospital right then and they said you need to bring them in. So they said, Do you want to take them or do you want us to take him? I said, Well, why don't you guys take and we'll probably get the fast track. And so they said, Well, can you can you pick them up and carry them out? I said sure. And what I picked him up, Scott, I could not believe how easy he was I either had superhuman strength at that point, or this kid was I mean, he was super light. Yeah. And I couldn't, I couldn't figure out why. So they got him in the hospital. Amanda went with Kevin in the ambulance and I met them there soon as we got out wheeled down the corridor there and then the different emergency room doctor comes out and says is he diabetic? and I, we said no, not that we're aware of. And she said, he's presenting signs like he's diabetic. And she says, I have a test that will prove it. And we're looking at each other. And I'm like, there's no way this kid's diabetic, right? And she comes back and says that his, his blood sugar is 640. And then at some point, I don't remember if it was at that point, but down the line, they determined that he was, you know, he was in DK. So, you know, talk about, you know, missing the signs, right? We, we missed all of them. Yeah. I'm wearing I'm wearing a juicebox sweatshirt right now. And on the back of it has all the signs, and we missed and that was where the rough start have the rough part came in for us as we just we went into this level of guilt, like, Oh, my gosh, we we missed this. Right? how did how did we put him in jeopardy? And we had wondered how long I mean, we'd go back and thinking that How long had this possibly been going on? But there were little signs where he would eat and he would get sick? And and we're just wondering if maybe this this had gone on for some period of time? Yeah.

Scott Benner 46:07
I think I think you're telling a story that a lot of people can relate to. It really is. It's how I felt how Kelly felt like, how did we not see this? You know, Arden was Baba dead by the time we got into hospital. Yeah, you know, it just in hindsight, everything makes sense. You know, like,

Unknown Speaker 46:27
it's just that blood test, just that blood test. All we needed right the night before.

Scott Benner 46:32
Yeah. And they sent him home. And if you wouldn't have, if you would have taken what they said to heart just been like, Look, it's okay. Or maybe if he doesn't say I can't breathe. Maybe you maybe you can continue to persist without It's alright. You know, it's gonna be fine. You know, what I'm interested in at any time in this process? Did your thoughts get really dark? Did you think God he has cancer too?

Unknown Speaker 46:55
Yeah, interestingly enough, when we got the diagnosis that he was diabetic, I was relieved.

Scott Benner 47:01
Yeah. thought maybe you might be. Yeah.

Unknown Speaker 47:04
Well, I was I was relieved. Thinking about, you know, Emily. And and, you know, he had had previous stomach issues, like, you know, just to see if something more serious going on. Yeah. And I was relieved that he had, I mean, who could say they're, they're relieved that their son's diabetic. But at that moment in time, I was relieved that we knew what was going on with him. Because for the previous couple of days, I was like, what's going on with my little boy here? Yeah,

Scott Benner 47:27
right. No kidding. Arden could barely, like she couldn't even like Shuffle Along. By the end. She just, you know, we'd stand her up. And she just stood there.

Unknown Speaker 47:37
Now she was she was a couple years old. She was two

Scott Benner 47:40
years and a few weeks. And, you know, find

Unknown Speaker 47:44
it a little bit. What is it? Was it hard to see this? I mean, do you think it would have been harder to see the signs and an infant or younger?

Scott Benner 47:51
Yeah, it's insane. Because it now I look at the pictures of her. And during that time, and I think, who in their right mind doesn't look at this kid and go, Hey, that kid's got to go to the hospital. Yeah, like just it's she was I described her before she like air. She was like a, you know, a heroin chic model. She was like, you could see her ribs and she was just, she had clearly lost weight now on a 19 pound frame should last, you know, a couple of pounds. But it's a it was a lot on her. You know, like vacant eyes. You know, peeing constantly, for no reason. It's just bizarre how, again, micro and macro, right? Like when you're in the fight, you don't think diabetes? Like you don't think that you think why is my kid thirsty? Why, you know, why are they paying a lot like nobody and nobody sits you down? When you have a baby and goes, Hey, by the way, here are the side. You know, here's the things look for, for all the possibilities that could happen to you while you're raising this kid. But that those things don't seem dire enough to do something about to a lot of people is telling and that you can get to a hospital or a doctor and they still not figure it out. That's ridiculous. You don't I mean,

Unknown Speaker 49:03
what what what I mean, I don't understand why regular the regular blood testing isn't part of you know, just checkups

Scott Benner 49:10
with kiddos. I think I you know, Adam Edelman was on the show a couple days ago or last week now and he was nice enough to come on and explain the Coronavirus to us but he's, he's my kids pediatrician, too. And he'll describe you I'll ask him next time he's on to describe this job. But you know, his job is to you know, look at what's happening and say, okay, I've been seeing this in the community right now those symptoms normally point to this. And that's how we'll we'll move forward. You know, I mean, he's you know, that's that's how it's done that's what being a doctor is you know, it's not we all watch Dr. House at some point. So you think like, you know, that you say hey, my kids paying a lot and, you know, some genius like snaps in is like, Oh, you know what that could be it's not how it goes. And because the decay progresses so quickly at that point, you don't have a lot of time to figure it out. You know? Yeah, but

Unknown Speaker 50:07
the hardest part. You know, Amanda and I one night, we, you know, it was it was really, it was late really late or really early in the morning, Kim or what it was in the hospital. And I remember we just, you know, we had this big, bawling cry fest over this. And that was the last time that we ever, I feel like that was the last time we were ever sad about Cameron having diabetes, and then we just move forward after that. But the hardest part was him laying in the hospital bed, and All he wanted was something to drink or something to eat. And Hey, buddy, maybe tomorrow, right? And I had to do that for two days. Maybe tomorrow was

Scott Benner 50:42
bringing his blood sugar down.

Unknown Speaker 50:44
Yeah, well, they were bringing his blood sugar down and trying to, you know, clear that clear as DK out. Yeah. And that was tough. And then, you know, somewhere around third day, you know, they were able to get him up. And he was having a hard time walking. And we never figured out why he had to go to physical therapy for a period of time after he left, because he looked like he was walking on invisible high heels. And we don't know if that had something to do with the diabetes diagnosis, or if it was, you know, from laying in a bed for multiple days.

Unknown Speaker 51:14
But he he struggled with that.

Unknown Speaker 51:18
And then, you know, we went home, and everyone, everyone in the car had tears in their eyes when we left the hospital. Mm hmm. Maybe except for me, because I was trying to be the, you know, the tough dad at that point, right. But I think there was some there was some genuine fear about what his life at home going to be like with diabetes. And we got home, and we unsettled. And you know, we were inundated with these books and these charts. And I don't think we made it two hours before we called the hospital line and said, Hey, we don't know what to do here. Right. And we just continue to move through a couple days got better. You know, Cameron went back to, you know, playing video games online with his friends. He missed a spring break last year with all this going on. And then, you know, we started before we left the hospital, we started looking into the technology. And one thing that was nice about the hospitals and in the packet that we got from the the educators was, it was a Dexcom pamphlet. And it basically you fill it out and you add it to them and they send it to a rep and they figure out how to get you on a CGM. And the next week, and this happened by mistake because they didn't even pre authorize it with our insurance. But the day the next week after we came home from the hospital, this box shows up that we didn't ask for and it was a G six. And it was the receiver for the G six and you know all the parts that we needed. And we we call the office and they couldn't get us in for a little bit. So we we waited, I think it was it was three weeks, excuse me was three weeks to a month before we got them on the CGM. And while the meantime that was going on, I was already trying to get an insulin pump going. We did pump trials. And we did the first trial we did was a was an omni pod dash. And then the next one was going to be one of the two pumps and Kevin's like, Nope, not doing it. He said I'm not doing it, I'm not gonna have tubes. So we proceeded with the dash. We, we ended up having to fight for it. And this is my other message to everyone to I see all these people online that that say, you know, we can't get dash, and maybe unfortunate but I just got to the right people on my insurance company and just said, Look, this thing, he wears this thing for three days, and he it gets thrown away and he puts on a new one. I don't understand how that could be considered as a durable medical equipment, right, it needs to go as prescription. And luckily, I got to the right people. And they my insurance company wrote an override to their policy. And, and we now we don't have to ask me that dash since middle of May. Yeah, last year.

Scott Benner 54:06
There's a it's interesting, because another insurance company would see it the exact opposite way. They'd be like, that's horrible medical, that can't be farce. It's just ridiculous. And then the companies have to fight through that mess. And then when people can't get them, they're like, it's the company's fault. You know, like, Well, you know, they're working within the system and the system is bipolar, you know, they mean like, one one minute at once one thing and, you know, go to another company once another thing, so,

Unknown Speaker 54:32
and I think that's my message to is you know, the the pump companies are doing everything they can through the channels, but sometimes it just takes you to be, you know, diligent and try to get to the right people and try to you know, really explain what you what, what you need and, and that's just that's what this was really all about. This is, you know, part of why I reached out to you early on after I learned is just I wanted to, I wanted to provide the best I could for Cameron Yeah. And I wanted him to have the best, the best things that he that he Could have and you know, I, I can't wait for the next piece of technology. I think any, any type of looping situation would be very helpful for, for our situation with school time and just everything in general. Yeah, I know it'll never be just plug and play. But you know, I mean, I'm excited for what's in store for him to make his life easier. Do you think that

Scott Benner 55:25
you would you you're using dash now would you go to horizon when it comes out this the day that we can Oh, gotcha. Okay, so you're up for all that?

Unknown Speaker 55:34
Oh yeah, absolutely. I mean, I've watched with some of the other I've watched some successes that people are having on other systems and, you know, I, I, I listened to, I've listened to all the loop episodes, and I even considered at one point about trying to go back to the older pods and trying to loop right, I just, I couldn't, I couldn't get my head wrapped around it. And it seemed like just a lot of extra stress that I didn't feel like I could afford. So

Scott Benner 56:00
sounds like you're doing really well. That's what I wanted to ask you to is that, you know, we told him, you know, a really great story about, about being diagnosed and all that but a year later here on his first, you know, anniversary of his of his diagnosis. Yeah. How's he doing?

Unknown Speaker 56:16
He's doing great. And, and, you know, and I think I think this is, you know, one of the challenges that some faces I've seen, you know, his, one of his school nurses was, she was absolutely condescending to us, because we hadn't released him to do all of his own work, right, do all of his own blood checks, administer all of his own insulin, and I'm sitting here thinking that kids 11 years old, right, he he gets he has to do this the rest of his life, if I have to be the person to make the decisions right now that I'm okay with that. And, and honestly, Scott, he, he knows how to he has a device that he checks his blood sugar with what he needs to Yeah. Kevin's a type of child, he's, if he had to do it, he could do it. But he doesn't do as dex changes, and he doesn't do his pa changes. Could I teach them to do it? Sure, I could. But I'm somewhat of a little bit of a, I don't know, I kind of want to hold on to that responsibility of, of, I have to take, you know, I want to take care of him. And I want to help him out. I want him to learn and we express to him how important it is. But at the same time, I don't, I don't want to feel I don't make myself feel bad. Because he can't do it all on his own. And I refuse to let other people make me feel bad for that too. Cameron wants to be as normal as possible. He he doesn't. He didn't go back to school. And he didn't announce that he has type one. Maybe irresponsible. He didn't tell us coaches that he has type one. Because we have control. He is under control. We are with him all the time. We don't leave him at football practice. He he has this fear of not wanting he wants to be like everyone else. And there's been a couple of times at school where, you know, he's had a pot alert, and he's had a dexcom low go offer or high alert go off. And he's mortified when that happens, because he doesn't want the extra attention. He has a plan that, you know, he can take his phone out, and he can do whatever he needs to do during a school day. He won't do it. I bought them an apple watch so that he can see his blood sugar. So he didn't have to take his phone out to look at it. He just wants to be like everyone else. He doesn't want to be singled out. Do you think that that's

Scott Benner 58:28
sustainable? forever? Or do you think he's gonna have to get a little more comfortable with people seeing and I don't know that half is the right word. Like maybe he never will I listen, I've over the years, I've seen Coldplay with three or four kids who have type one diabetes. And I can tell no one knows. Like, I pick it up because I'm watching what's going on. But I'll say to call him like, you know that kids got diabetes, right? He's like, Yeah, I saw him do something. And I knew he goes, I don't think anybody else knows. And he's never said it that anybody? Yeah. And he's like, so I don't even I don't even talk to him about it. But I but that's, you know, Cole doesn't have diabetes, but he's grown up here. And he's like, I can see it. But it's kept very, very quiet. And he's like, there's He's like, I saw this one kid, check his blood sugar ones. And he's like, dad, he's playing with like a 220 blood sugar. And I'm like, a probably afraid it's gonna get low, and he's keeping it high. And that even made my son like, sad, dude. I mean, like, he's like, he doesn't need to do that. Right. And I was like, he doesn't, but he probably doesn't know how. And, you know, we eventually went out to dinner with that kid and his family and I spent like, three hours in a restaurant explaining everything to him. But he, we approached him like he never would have, you know, he wasn't he was us going along with it. So like, there's part of me that 100% understands exactly where you're coming from. And as an observer, I wonder how sustainable it is over a lifetime. But I also don't think that it'll stay that way. I think that as a As time passes, and as your son has more experiences, you know, one day he's gonna have to do something in public and nothing's gonna go wrong from that. And he'll be like, Alright, that wasn't too bad.

Unknown Speaker 1:00:12
Yeah, and I would say he doesn't. He's not afraid. Like, he'll go out and you know, rock his CGM on his, you know, on the back of his arm in the middle of summer heat. Yeah, that doesn't bother him at all. He'll test his blood sugar if he needs to. That's That's not it. There's just that there's that little piece of him from being around civil or being around friends that he just hasn't reached that level of comfort yet. And when he get there, sure, he will see as he gets more confident with his type one, he will I think he just, he doesn't want to be perceived as different

Scott Benner 1:00:44
than everyone else. And in this moment, there's no need for him to feel that way. And so I like so what you're doing is perfect. I mean, listen, Arden can swap her CGM and her pump all by herself. She doesn't need anybody's help. But still, when she does it, she's like, Hey, you want to help me with this? Because, you know, she's 15. And

Unknown Speaker 1:01:05
what the hell

Scott Benner 1:01:06
you don't I mean, like, it's, it's, it's not a, it's not a great thing to have to do. And it's nice that somebody has your back while you're doing it. It's you know, and if I'm, if someone's not around, she just does it herself. It's not a it's not a it's not like, Oh, my gosh, I can't change my pump. because no one's here.

Unknown Speaker 1:01:22
You know,

Scott Benner 1:01:25
I just think that there doesn't need to be a rush. To 1,000,000% independence.

Unknown Speaker 1:01:33
That's my take. And, you know, I, I've I've seen, you know, both are both sides of the argument. You know, one side is, you gotta you got to make it theirs, and you got to make it make it theirs right now. And I just, I haven't gotten there. I don't know why it can't be a blend. I don't

Scott Benner 1:01:50
know why everything in life is a zero sum. proposition like everybody does, that. It's always this or that. No one ever says a little bit of this and a little bit of that. Not so bad. You know, like we do it in sports, in our politics, the way we talk about our kids with diabetes, the way everyone wants everything to be a zero sum policy. And that just is, it's lazy. Really, you know, like, there's nuance, like, there's nothing wrong with living in the nuance a little bit.

Unknown Speaker 1:02:20
Yeah, I know, we're just we're trying to keep life as normal as we can write in, maybe it's our maybe it's our new normal, but you know, life for him is his life for him is not much different than what it was before. Other than you got to check your blood sugar every once in a while, you may have to go drink half a juice box or eat for gummy bears to keep your blood sugar up to an elevated level. Or you gotta you gotta raise your bazel up for an hour or you need a right. You know, you need a you need a correction. But for the most part, it's it's pretty normal.

Scott Benner 1:02:54
Yeah. I think that I think it sounds like you guys are well on your way to something great. So I couldn't find fault with what you're doing. I think it's, uh, I think it's personal. And I think it's, you know, your son, and you know, yourself. And, you know, as long as you're not playing scared, I think you're good. You know,

Unknown Speaker 1:03:13
yeah. And I and I think that's, you know, that's where our, that's our grateful This is to you is, you know, you gave us that you gave us that mentality to not be scared, right, or gave us the courage to not be scared. You're not going to get it right every time. And sometimes you just you have to deal with what's put in front of you. And that's maybe given a, you overcorrected. And maybe you got to give a little bit of juice. So you got to you got to have a free stack to get back back in range. I appreciate

Scott Benner 1:03:46
that. Thank you.

Unknown Speaker 1:03:47
And I and I think one of the biggest things that I have learned is my gosh, Lowe's, Lowe's for us, Lowe's are better than highs because when he gets high and he gets stuck, I mean, and you're sitting there and every year, you're laying in bed, and he's he's in the two hundreds and every you just you keep giving him you know, you you extend his or you run his bazel up and you give them a correction when you can and you just sit there and you look at it and it just doesn't move. It's so frustrating over Hey, man, you got to go eat for gummy bears, or you got to write have a couple of Smarties or you got to drink apple juice box. I would much rather be in that position. Although I don't really love the low alarms going off in the middle of the night because sometimes that just scares the heck out of me. But uh,

Scott Benner 1:04:33
I just said the Arden last night I was like, Listen, she had spent the better part of a day. She got her period right now. And usually during her period, she runs like fine, but she's been a little off for this period of time. Right? And yeah, so we had our bazel really jacked up the keeper at like 190 and as we got at the start coming down, I said okay, we You know, we've broken whatever dam has been holding us back here. And I said, there's going to be a moment where you're going to need to eat something. So I sent her a text. I was like, Listen, if you have a small snack right now, it's going to stop you from getting low. And she didn't respond right away. And I just responded to her. And I said, Listen, if you don't do this now, later, you're gonna have to eat more than you want to. I was like, so at 104, diagonal down, coming down from a 190 that's been stuck like that for, you know, a day. I'm like, this is it right here, like right here, like, do it right this second. And I recognize that that sucks. You know what I mean? But it's gonna happen anyway. It's gonna, it's just gonna be it's gonna be 20 minutes later, and you're gonna be 65. And you're gonna have to eat, and you're gonna get a little lower, and then it's gonna come back. I'm like, why not just just do it now, like, be ahead of it a little bit. And she actually, like, stopped what she was doing and came down. And I was like, oh, wow, that might have made sense to her. But I'm probably gonna have to say that to her a million more times before that becomes part of how she thinks. Because she's 15. And she's a kid. And Yep, she's learning, you know.

Unknown Speaker 1:06:11
And, and we had we had one the other night where we couldn't you know, Cameron was staying like one night, he was just stuck at one night, he would not move. And I decided this is the second time I've done this, I waited a little longer than I should have. And I just changed this pot, I just abandon that spot where it was, yeah, changes pod ranas bazel. We always run as bazel. As soon as we change this pod, we do 95% for an hour is kind of our mo is our rhythm. So we read at 95%. I gave him a correction. And he went, he dropped pretty darn fast. And it was it was good. And we caught it. And we didn't we didn't run it back up. But that was that was one thing I've learned too is don't don't sit on it and just wait for it to get better. If it's not getting better. Just change it out. Yeah,

Scott Benner 1:06:59
do something. Now I just did that with Arden's friend yesterday, I was like, I know your pumps, good for like, 10 more hours. I was like, but I think if you blow if you just dump it right now, I think you're gonna be okay. And sure enough, an hour later, she was back to where she wanted to be. And just wasn't quite getting her and so on the way she had to, you know, in the, in the 70, you know, hour or whatever it was of, you know, the time it had been on So, right. It's just, you know, it's all about insulin, I I say it a lot, I try to say it a lot when your pump site isn't acting the way you expect it to, you know, you can you can hang on a little bit. But once it's proven to you that this is the best that can do now you have to make a decision, you know, I mean, like, This site is not working the way I want it to anymore. What am I going to do next? And I always think of that as when the insulin stops reacting the way I know it should, then I start becoming suspect about that.

Unknown Speaker 1:07:56
Yeah, and those are, those are things that you only learn with confidence, or you only learn with time, you know, we're still we're learning lessons all the time. You know, we we've had a, we've had a Dexcom issue the last couple days. And we I did what she told me to do, I just I just calibrated it a few times and it gets settled down.

Scott Benner 1:08:15
Yeah, so beat it to submission. Did you?

Unknown Speaker 1:08:17
Somewhat Yes. The one before that we couldn't beat that one into submission. But we did beat this one into submission and in fairness to dex calm and Omni pod, I mean, they have been so good to us. I mean, I've read these, I read these things online about people saying, you know, how horrible their customer service is I Scott, I haven't had one bad experience. And I've called in a dozen pods. I've we've had, you know, plenty of CGM errors, not plenty. I mean, we've had, we always get 10 days. And we've we've had reasonably good luck. We've we've had a couple issues. But every time I mean, yesterday, there was a box that showed up that they overnighted us to new sensors, because we were having an issue. Yeah. And ami pods been nothing but great. I have nothing but good things to say about these people. They've just been nothing but fabulous to us.

Scott Benner 1:09:04
Yeah, I think it's a I especially now right now, while companies are moving their customer service back to people's houses. Basically. I like how someone's like I held forever today. And I'm like, yeah, did you hear about the quarantine? Like, yeah, what do you expect it that, you know, a company's like a magic entity and you'll somebody will jump off and be like, well, they should be prepared for this. Like, come on. You know, what do you mean? Like, like I should have, I should have a perfect though. contingency plan for the for the moment where the whole world has to go home and stay there like no one thought that was gonna happen, you know? And now what happened and I bet you next time there'll be a plan, you know, so no one's perfect.

Unknown Speaker 1:09:44
It was it was an hour and I think, you know, I knew it was gonna be a long wait. And I expected that so i i called Dexcom. And I put it on speakerphone. I went about my business for an hour, 40 minutes and the lady got on the phone and you know, she apologized for the way to say it's fine, you know, I mean, I expect Get that Listen, I'm gonna make it.

Scott Benner 1:10:01
I'll make a criticism at Dexcom right now, and I hope they listen to it. You guys have made a couple of bucks over the years, I'd like to see some more money put into that hold music, how's that? I can, I could sing that little tune in my head, I'll be able to sing that tune. And I don't spend time on it's just it's been for a decade now. It's that same little rhythm like somebody just think a couple bucks into changing the music up. I really appreciate it. That's my event. There's more

Unknown Speaker 1:10:28
if that's if that's not if that's not bad enough cameras endos. Hold music is the exact same. And when I was on the phone with Dexcom on hold the other day Cameron's like, you got to turn that off dad that music is horrible. It really is.

Scott Benner 1:10:41
I mean, honestly, I'm sure they're not thinking of it. You know what, I'll tell you what you want to know what a good company Dexcom is, hold on a second. I am gonna pull up an email here that I just got from Rick Doubleday the other day, you remember Rick came on the show? Oh, yeah. And we were just talking about things were going on. While I was talking to him. I told him that I was in the middle of, you know, I got the phone call from Dexcom about our reorder. And the guy told me that you know, after a benefits, investigation, art and stuff would come out. And I stopped at the end of the call and told the guy Hey, investigations, it's like a, it's a too harsh of a word. I'm like, there's a better word you should, you know, you should, you know, find a better way to say that now, okay. I told that guy, um, he has no power. He's the customer service guy. But, you know, I happen to be, you know, interviewing Rick the few days later, and I mentioned it to him. And I don't know, like, there's sometimes I say things and I'm like, no one's listening to me. You know what I mean? Like, I'm just talking out loud. But literally, two weeks after I interviewed Rick, I got this note from it says, and this is a personal conversation, but I don't think he'd mind. It's just this, Scott. I hope all as well. I don't have an update on this other thing you asked about. But I did want to let you know that we took your comments to heart on the term benefits investigation, we've updated the language to benefits update, it tested really well with customers appreciate the heads up brick double that. And so, you know, he could have I mean, he could have Yes, me to death and gotten off the phone. But he's like, Alright, somebody's saying something. It's a person, you know, I trust and, and that makes sense to me. And then they did something about it. And it probably didn't take that much effort to do something about it. But there are a lot of places who would have been like, Yeah, whatever. And, you know, just let it be. So now when somebody called, they won't be told that their benefits are being investigated, which can I'm not a real I don't know what the word is, like, I'm not a I'm not a soft person, like a lot doesn't impact me. Do you know what I mean? Like, I don't hear things. I'm not always running around, you know, virtue signaling and telling people you

Unknown Speaker 1:12:55
shouldn't be doing

Scott Benner 1:12:55
that. That doesn't sound right. I don't feel that way. But I heard benefits investigation, I thought, hmm, seems like you're looking into whether or not I've done something wrong or not. And, and that's it. So now it's benefits updates. The next time somebody tells you there have a benefits update. That's because, you know, somebody was paying attention to how you feel and I think they don't just pay attention to me. I think they pay attention to a lot of their customers. So I think feedback, feedbacks good.

Unknown Speaker 1:13:23
I think they do I mean, look at the look at the outage and how they responded to that.

Scott Benner 1:13:27
Yeah, yeah, there's a site now where you can go to literally track how dex comms what, what their status is, right? Which was not something that that existed until, until somebody said to them, hey, it would have been nice to, you know, to know how things were going and they boom, they fix it.

Unknown Speaker 1:13:46
The one thing that's really for us, the CGM. At least it's been so important. I mean, the last, we've had some issues the last I'd say three weeks, maybe off and on. And we've also had some good success too. But the one thing I've learned is when that CGM is not, it's not working right. You learn how important that CGM is. I mean, yeah. And so don't help me. Take away anything we have. Don't take our CGM, right. Yeah, I love Cameron probably wouldn't say that, because I don't know he would like to insulin injections, but petsy jams really been important to us now. I agree.

Scott Benner 1:14:21
All right. Well, Chris, I really appreciate you doing this. I know we had to put this off once and I appreciate you being flexible about it. Thank you.

Unknown Speaker 1:14:27
Now we we can under emphasize how important that that everything that we've learned has been to us. I

Scott Benner 1:14:35
appreciate really, we really appreciate it. I it's it really is my pleasure. I will not be humble for a second. That's probably making people laugh. But I I really do appreciate you saying that. And it means a lot to me that the podcast struck you and your family the way I intended. So I'm just very glad for you that it did.

Unknown Speaker 1:14:56
Yeah, we appreciate it a lot. I think without the podcast, we wouldn't be where We were we wouldn't have found Jenny. I mean, maybe we would, but it wouldn't. It wouldn't come. Let's

Scott Benner 1:15:03
just say, Chris, I fixed it for you. And it wasn't gonna work out the other way. I don't know why we're being so kind other opportunities and possibilities that we don't know exist that are not clearly I'm the best person. Like, let's just say that I think it's easier that way.

Unknown Speaker 1:15:18
I will. I will not fight you on.

Scott Benner 1:15:22
If anybody wants to leave an episode. No, I won't say that. I'm going to get a bunch of other people. But I would like a review that just says Scott's the best.

Unknown Speaker 1:15:30
Yeah. I haven't even asked you yet. I don't think you've even i don't i don't think i got got you to say the word at all during this podcast

Scott Benner 1:15:38
delightful. It's water, water. Oh. Well, I do have I have a bottle of water right in front of me. And I know, that's not how everyone says it. And, you know, you all enjoyed those rocky movies. So leave us alone. Okay. It's a it's how we talk here. I don't know what to tell you. I'll tell you what I do hear a lot from his people on the West Coast who used to live on the East Coast, that say that listening to the podcast makes them feel at home because of my atrocious grammar and other problems

Unknown Speaker 1:16:07
with speaking.

Scott Benner 1:16:08
It is true by the way the West Coast, especially California, and, and right up into Oregon, Washington State all in there, you really don't have an accent. It's just it's, it's, you know, it's the language sort of the way it's meant. You know, they mean, mentally. We've all bastardized that by being around for so long. But um, you know, listen, you just, your coast isn't close to where people came in from Europe. So

Unknown Speaker 1:16:36
you know,

Scott Benner 1:16:36
you got a bad whole 3000 some mile trip at a blended out a lot of people by the time they got to California.

Unknown Speaker 1:16:47
Well, hopefully, hopefully at some point, we'll all be traveling again. And it'd be great if we could get you out this way to, you know, teach them teach them or some of the things

Unknown Speaker 1:16:54
that we've learned and be very cool. I hope

Scott Benner 1:16:56
so I'm looking forward to it. Hi, Chris. Thanks so much. Hey, huge thank you to Chris for coming on the podcast and sharing the story that his family is experiencing with Type One Diabetes. Thanks also to Dexcom, makers of the G six continuous glucose monitor. And of course, the Omni pod, the tubeless insulin pump that my daughter has been wearing since she was four years old. Go to my Omni pod.com Ford slash juice box dexcom comm forward slash juice box links in your show notes links at Juicebox podcast.com. Hey, why not even hit up the other sponsors T one d exchange.org. forward slash juice box. Contour Next One comm forward slash juice box touched by type one.org g vote glucagon.com. forward slash juicebox. Support the sponsors support the show. During the episode, Chris mentioned the Facebook group. That's right there on Facebook, which makes total sense. That's where you would put a Facebook group, you're going to want to search for Juicebox Podcast type one diabetes, it's a private group, you have to answer a couple of brief questions about yourself just to make sure you're a real person that you can get in there and start having the experiences that Chris spoke about. Give a great diabetes practitioner, or are you looking for one, you should check out juice box docs.com. And when you get there, you're going to find a list of great doctors that have been submitted by listeners like you. You have a great doctor, go to that same link juicebox Doc's dot com and send it in to me. I'd love to add it. I'd love to add your great experience to the list so other people can find those experiences. And of course, if you're looking for those diabetes pro tip episodes, they begin at Episode 210 in your podcast app, but if it's too far to scroll back, go to diabetes pro tip.com to get a feeling for what episode you're looking for. It's also a great way to share the pro tips with other people. Thank you so much for listening. I genuinely appreciate your time. I'll be back soon with another episode.

---

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#389 Dexcom CEO, Kevin Sayer

Fireside Chat

Dexcom CEO Kevin Sayer is back to chat about type 1 diabetes.

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

+ Click for EPISODE TRANSCRIPT

---

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 389 of the Juicebox Podcast. I have a treat for you. Let's welcome back the CEO of Dexcom, Kevin Sayre. Kevin and I are going to have a pretty chill about 30 minute conversation where we go over a number of things that are going on at Dexcom. It was really was nice. And Kevin and I have talked to each other so many times, it just felt easy. And I think that reflects in the conversation.

This episode of the podcast is not sponsored by anybody. So there won't be any ads. Just a few reminders. First reminder, the T one D exchange, once you to join their registry, T one d exchange.org. forward slash juicebox. You've heard me talk about it on other episodes, get in there, find out what it's about. It is not an ad t Wendy exchange has not bought an ad on this podcast. I do however, get you know, a couple of bucks for every one of you that signs up. So if you're looking for a way to support serious Type One Diabetes Research, while you know kicking a couple dollars back to your friend Scott T one d exchange.org. forward slash juice box. Here's some other stuff. You're looking for a great doctor to help you on your journey with Type One Diabetes, where you have one to share with other people, please go to my page juicebox docs.com, give a penny take a penny, give a doc take a doc, let's build a great list for people to use. And if you're looking to share those pro tip episodes with other people, you can of course send them back to Episode 210 of the podcast where they can start. Or they can head over to diabetes pro tip.com. The pharmacy for veterans. That's new. And that

Kevin Sayer, Dexcom CEO 2:09
is new for us.

Scott Benner 2:10
It seems very comprehensive for who it's helping.

Unknown Speaker 2:14
It is okay.

Scott Benner 2:16
How does it work? What what so any veteran goes into where How do they do that.

Kevin Sayer, Dexcom CEO 2:21
The VA system is one of the largest health systems in the country. And as a population, one in four veterans ends up with diabetes. And and so this is a group that really, we felt could use our sensor. The coverage is very similar to Medicare with respect to its intensive insulin users who get to CGM now on multiple daily injections or a pump. But the fact that we can now they can get it through their pharmacy channel rather than all the DMV paperwork that that many of our patients have to go through. As we work on simplifying a distribution channel, this was a great win for us. And we think a great win for veterans.

It'll be great for that group.

Scott Benner 3:06
And if I'm looking correctly here, you don't to get coverage. I'm seeing need to have diabetes, you require insulin, an insulin regimen of more than three injections a day or an insulin pump. Yeah, so it's low level here. Yeah,

Kevin Sayer, Dexcom CEO 3:24
it's low level and there is no copay. That's great. They just go get it. That's amazing. Yeah, it's a really good arrangement.

Scott Benner 3:32
Excellent. And that's just any. So veterans listening will know what a VA pharmacy is, or is there a way

Kevin Sayer, Dexcom CEO 3:38
they will know if they're on a VA health plan? Yes, gotcha. They'll understand that

Scott Benner 3:43
that's really astonishingly exciting. Especially because it's not just I think it's easy to think of veterans, right as older people, but there's plenty of people who are much money.

Kevin Sayer, Dexcom CEO 3:54
There's plenty of people in that system.

Scott Benner 3:56
Yeah, no kidding. Oh, and there's a link here. I'm gonna. I'll link to it so that people can go right to it. That's excellent. That is really exciting. The last time you were on, we talked a lot about COVID, bringing Dexcom sensors into hospital situations. And that seems to be growing from there. Can you tell me where it's gone?

Kevin Sayer, Dexcom CEO 4:18
Yeah, I can. You know, we were contacted by more than 200 hospitals and we've got into more than 100 of them in various degrees. bringing new technology to a hospital is never simple. And bringing new technology to a hospital pandemic, isn't. That's even a bigger challenge. We've learned a great deal. I tell you, the first learning is why our product will function and do very well in that environment. You know, in the beginning, and one of the reasons we didn't have a labeled indication there is if you go way back in sensor days, there were interferences that could cause the sensor we had an acetaminophen contraindication For example, which we don't have anymore, we have an interference layer on our membrane. So there was a perception that these things wouldn't even work in the hospital. And the FDA, in all fairness wanted us to do some more work, we'd spoken with them about hospital indication, for years, do some more work to make sure that that interferences didn't cause the sensor to be wildly variable. But when you had several hospitals back east, where diabetes and COVID were converging, and people had good knowledge on the diabetes side, we were getting flooded with phone calls. And I believe the FDA was getting flooded with phone calls, too. So we got that non enforcement, discretionary non enforcement waiver, go do this, we will let you go play in the you know, go be in that market and see what we can learn. And it's got the experience when we started, you know, based on the phone calls, it literally looked like our entire inventory has been going to the hospital because people wanted so many sensors. And then as we started getting through this, you're training ICU people to do something, use a product that we designed for patients to use in their homes. And, and so we had to figure out how to make it work in that environment, we purchased a whole bunch of phones, because the hospital doesn't have fun playing around and they don't want their healthcare professionals carrying around their own phones, with patients data on it. So we purchased phones, to get the data to the cloud, then you've got the whole internet and connectivity issues in hospitals, because they have very strict HIPAA requirements. And so we've walked through all those things to get everything figured out. And what we've learned is our product can have a big impact, it cuts down on pp. Significantly, it cuts down visits in the room. Now the care professionals don't have to go in the room of the people with diabetes and stick their finger, it really can be used to eliminate one of the things that can advance the disease, because if your body is fighting high glucose values, and oftentimes these patients it was in the foreign 500 range. Combined with respiratory issues, your immune system can't fight both. It just can't. And so if we can eliminate the diabetes, variability from it, that is very helpful. We need to get this data from the hospitals to show what we achieved here. And what we've learned. We want to take it, we want to build a file, we want to get back to the FDA and say, you know, this is what we've learned here, what are our next steps in creating a hospital application, the other learning on our so that's why we have the registry, we wanted an organized manner where data could be kept private and secure. Hospitals would be comfortable getting data to us. And we can compile the registry and then go to the FDA and say this is what we learned. This is the data we had this is the profile the patients. This is the compounds they were on when they were in the hospital. Here's how quickly they got out all those types of things and use it as a base. We think CGM in the hospital could provide wonderful benefit if you walk around a cardiology ward. And and and ask how many these patients have in particular type two diabetes as they get older. The numbers are pretty staggering. If we can control the diabetes part better. I mean, I've been in IC use, where if a patient has diabetes, there's 48 finger sticks a day. So a nurse has to walk in, stick their finger 48 times a day, every half hour, all night long. We put a CGM on that patient voice. They count much time and money that saves the system. And not only that, let somebody do the job they they signed up to do give care to patients rather than

Scott Benner 8:49
just checking and checking,

Kevin Sayer, Dexcom CEO 8:50
just checking and checking. So we think there's a really good opportunity here and we'll learn from the registry registry, what we're learning from our experience. I had to just shut my phone off. I'm sorry. And we'll be good. So it's, it's pretty exciting there. You know, there's good stories. And you know, one doctor told us a story about a patient who they were about to ventilate, but when they got under control with CGM, they didn't have to. It was the high blood sugars causing the patient could fight off the corona if they weren't trying to fight their high blood sugars. And I think there's a correlation to all these things.

Scott Benner 9:30
Well, I have a personal anecdote, I guess that I've never shared on the podcast before but my father, as an older man had congestive heart failure type two diabetes, but he fell and just kind of slipped off a chair actually and gashed his his shin badly enough that it wouldn't heal and he ended up in the hospital where I watched them ignore his blood sugar. Like it just wasn't a factor in his care. And he did. In fact, he passed away about a week later and You know, I realized he was not in great health to begin with, but he was not, you know, he was not on death's door prior to cutting his leg. And once he got into a hospital setting, I would tell him, I'm like that they're not they're not managing your diabetes. And he's like, they say, it'll be okay. They want it to be high. They don't want me to get low. And I couldn't talk him out of it. I couldn't talk him out of believing that his his body's ability to, to heal was directly related to you know, was compromised.

Kevin Sayer, Dexcom CEO 10:28
Yeah. Yeah, I had a very similar experience with my mom, she had a heart valve replaced and literally she couldn't leave the hospital because her blood sugar's were so high that because the heart valve operation didn't work base, the stress and anxiety in her body from that surgery. That's what they they couldn't fix. And I'm sitting up there. As I think it was right after I started, not long after I started Dexcom. I'm sitting there going, I can fix this. But yet I couldn't. And so I think someday we have a really good answer here.

Scott Benner 11:05
Yeah, no, institutionally, I think that this has a significant possibility of changing the way minds work around blood sugar management, while people are in the hospital.

Kevin Sayer, Dexcom CEO 11:15
And Scott, my other learning here, and this is, you know, this just goes to Dexcom. And how we work, we need to create the proper experience in the hospital for the caregivers. And for the patients. We are all about the experience for the customer and for the patient. And and one of the big learnings is taking a product that's meant to be used by you and your daughter at home. And and day to day isn't necessarily the same workflow, and visualizations and communications, as one of the one the hospital and one of the challenges. I've given the team after this experience. And with this registry, let's create the right thing. Let's create the right experience for this environment. So the product can be used when you create the right experience. No one's going to use the product even it's perfect anyway. Right. And so I think long term, that's another thing that comes to this, we will create the absolute right. Right experience for that environment.

Scott Benner 12:13
I'd also be interested to see how those two different uses end up feeding each other, like what will you learn in the hospital that will help the home user? What will you learn at home that helps the hospital use that? Yeah, I think that would would prop itself up?

Kevin Sayer, Dexcom CEO 12:28
I agree with that. Yeah.

Scott Benner 12:31
Okay, so I wanted to ask you, then about you guys are doing something with the University of Virginia about research, but I don't understand what it is.

Kevin Sayer, Dexcom CEO 12:38
That's okay. I'm happy to answer that question. You know, the week acquired a company called type zero back in 2018. They're the group who developed the and control study. And then the the algorithm, the control IQ algorithm used by tandem in that system. And the scientists, some of the scientists who were part of that remained at the University of Virginia, and there's a lot of knowledge. And a lot of great thought there. As far as what we could do in the future with diabetes. We felt the thought and the skills of these of these scientists at that university, combined with the people we had in Virginia would give us a great opportunity to create more tools for our patients in the future. And we wanted access to those guys. And we wanted to make sure that the group was funded, and really could continue to work with us. So that that's why we signed the agreement really, is to continue to develop more tools for our patients.

Scott Benner 13:35
And so they're just going to its research center, then like

Kevin Sayer, Dexcom CEO 13:39
three, its research center, and we will do research and develop, develop future applications for our technology with them

Scott Benner 13:45
for type one and type two, I'm guessing. Yep. Okay. That's where it

Kevin Sayer, Dexcom CEO 13:50
is open to where whichever directions, they think they can help us or directions that we would like to go.

Scott Benner 13:57
That's excellent. Well, I guess you guys are pretty busy in house doing what you're doing. And so this is sort of just another avenue, right?

Kevin Sayer, Dexcom CEO 14:05
You know, what, there are a lot of smart people out there who are trying to solve these problems. And to the extent we can have good relationship ships with them, and we're bigger now. I mean, there is some advantages to size five years ago, I didn't have a million dollars a year to commit anything to university. Now we do, right, and so and I don't even know what the financial terms are, I'm speaking a bit out of turn, right. And all that but but you know, where I'm headed, we really didn't consider ranges like this because we were so focused on managing our cash and everything. So through size and scale, we're able to do more and I think this is a really good investment on our part. We look we think there's going to be great things come out of this.

Scott Benner 14:45
Excellent. That's exciting. Okay, so 2020 as we all know is not been very exciting. Everyone's excited to get to 2021. I just for so many reasons that aren't aren't worthless thing, but I'm wondering what that Users should have to look forward to coming up.

Kevin Sayer, Dexcom CEO 15:05
Continued innovation, continued growth and support, I think our technology pipeline is, is still incredibly robust. So what we have coming. And what we have today, I mean, you know, let's not forget, we're only two years into GE six of these devices usually have a life cycle longer than two years. And we made a commitment to go faster and accelerate that lifecycle by moving to G seven, where literally every component of the system is different than what we do did with G six. So we'll continue to improve GE six, we have algorithm updates, we are, you know, looking at finer things like updating the share system, that user interface over time, we'll continue to refine that experience, we're very focused on G seven, we're back in the clinics, we're not giving g seven timelines, because I just can't give our playbook to everybody. But in the short term, g six really gets a lot of good things. And I think another one of our big efforts is just improve access for patients. I had a call yesterday, you know, and I get emails as you do, and most of my emails from patients do not relate to the product. Other than we'd love the product, it's I am having a hard time getting this and this guy was a hospital administrator. And he'd been in health care for 30 years. And I said, You know what, I'm gonna take this one and spend a little time on the phone. And it was a great conversation. And, you know, he said, I don't know how, and he was late in life, having used the product, I don't know how anybody would even manage this without it. I it's beyond me. So we want to create that experience and get more people access to the system. And his problem was very simple. He's on this auto ship plan every 90 days and insurance only let him order exactly 90 days later. And if if for some reason he runs out of sensors, even if they all last 10 days, he's days without. And, you know, he wanted to ask how are you going to solve that problem for me and we had a great discussion about it. He understood rise Kevin from and we we got them taken care of and gotten injured. But I think more access, getting to more people continuing to technology pipeline. And just, you know, having this needs to really become the standard of care, not just in the US but everywhere. And I think we've made great advances in us, we're looking at our international markets, how do we get more visible and more access in in more international markets, and I've personally challenged, the team must go be more aggressive, let's go get more people on this technology, because once they use it to God, they don't. Their lives are changed forever. It's 100%. True,

Scott Benner 17:59
I my first thought when you were talking was will the marrying for like, you know, control IQ on the pod five, that kind of stuff. Will that cause the insurance companies to believe that there can't be a lapse in me having a sensor right, because now my pump. Also, you know what I mean? Like is connected that the other thing is to I am, you know, as humbly as I can say this, I'm really very good at diabetes. And then if you take that data away, I become very average at it pretty quickly. And it's not that my daughter goes from you know, an average daily day of like 5581, c two a 12. But suddenly, we can't be as aggressive with meals as we'd like to be we can't be as fine with bagels as we'd like to be and then everything starts drifting the wrong way. You get very up and down. And before you know it, you feel very lost.

Kevin Sayer, Dexcom CEO 18:52
Well, I liken it, what kind of COI B with no data. Yeah. How could you possibly run a company without knowing where we are? right and so I don't need to know where we are we five minutes so I I can take peaks a little a little later. But no, I you can't you couldn't. And I you know, the insurance companies It is really interesting is as I talk to some of these guys they are so there are so many brilliant people there. But as you look at the hundreds of thousands, if not millions of people they have to take care of then you get down to the number of people that use our sensor. Yeah, absolutely. Gee, if I'm approving this pump that's dependent on the sensor, we shouldn't be waiting, we shouldn't have any problems. But by the time you get down to the number of people that is versus the number of people they take care of. Yeah, it's it's really hard for them as business people. Just to understand how all that works. And and I we've looked at models, Scott So I'll give you a perfect example. What if we sent an extra box to everybody just so that never happens? And you know what happens if I do that? They just use the box instead of place to next order. Oh, okay, most of them. And then then we run out anyway. And three months later, we've got that problem. And we sent a free box of sensors that cost us money that we didn't get revenues for, that the insurance company didn't have to pay for. And so I have come up with every mathematical model, and Chen, our marketing organization would tell you, I'm somewhat relentless on this. And I really haven't come up with anything simple.

Unknown Speaker 20:43
So you run into

Scott Benner 20:45
the failings of people. At some point,

Kevin Sayer, Dexcom CEO 20:47
you run into the and the failings of us as a company and the failings of our distributors, and the failings of drugstores and the thing, the biggest problem is getting this to people in an efficient, easy manner. It's almost, I would love to say we have it down. And we're a lot better than we used to be. We've made tremendous inroads here. But there's there's still more to go here and and you know, are pushed to the pharmacy to get this thing covered. As a pharmacy benefit. In most places

Scott Benner 21:19
you made me we, I'm sorry. Yeah,

Kevin Sayer, Dexcom CEO 21:22
we had, we now have more of our new patients come through the pharmacy than come through the the other channels now, which means they're giving it to the drugstore, and the copay at the pharmacy level. And James can get you the we can get the exact numbers, but a large percentage of I want to say 30% has zero copay. Oh, wow. If we can get him to that channel. So we have done our best as a company to make it more accessible and, and literally, that access been willing to compromise on on pricing. Because if our patients can get it easier, happy, guess what, they buy more, they're loyal and everything is good. It makes perfect business sense. Now

Scott Benner 22:01
I've seen incredible, you know, strides from you guys over the years for certain it's funny you you were talking about what would happen if I just gave everybody an extra box, you made me think about a buddy that we had in our 20s, who was always stressed out about not having money. And so I came up with this idea of us all throwing a little bit of money into a bank account for him. So that he had a cushion to take away that stress. Then we did we collected about 500 bucks, all of us and we we we put it in his bank account, and he spent it.

Unknown Speaker 22:30
And I was like, oh,

Unknown Speaker 22:33
we're trying to take your stress away.

Kevin Sayer, Dexcom CEO 22:35
Human nature.

Scott Benner 22:36
Yeah, it's just how it is? I think so. I really do. Oh, before I forget to mention this, and we run out of time, it's such a small thing. But a number of people asked me to tell you that the the process of ordering overlay patches is not probably as seamless as you hope. Yeah. So so I won't have

Kevin Sayer, Dexcom CEO 22:55
that on.

Scott Benner 22:57
Yeah, that was it. Nobody really I said, Hey, Kevin is coming on. They're like, tell them we want that overlay patch link to work better. And I was like, and everything on the UI side is great.

Kevin Sayer, Dexcom CEO 23:06
If this is your toughest user group question for me, man. It's over people. If you're listening to this podcast, you can do better than that

Scott Benner 23:14
come up with better questions. No, they, they just all seem kind of a happy accident. I mean, listen, not for nothing. Everybody wants to know when the g7 is coming. And I think that that ebbs and flows online, when someone discovers an image of it and reshares it as if it's, it's a new idea. And then it kind of gets everybody lit up again. But I agree with what you said earlier, I have a hard time arguing with you. I'm using g six with Arden. And it's been terrific. And it's been

Kevin Sayer, Dexcom CEO 23:42
it's a spectacular product. And we've tried to address in G seven, all the things that we can make better. But it's g six is really good. You know, I was talking I was reminiscing a bit the other day, as you look at the things we brought to market, the Dexcom in bringing connectivity directly to the phone and all these integrations the way we designed g six, you know, we made a commitment back in G five Scott and you appreciate the technology, we put a processor in the transmitter to whereby all we're sending to that phone app or to your pump or whatever is the number. So we can integrate across multiple platforms, we can communicate with multiple devices at the same time. The thought that went into some of these things, delayed technology for a long time. But we think we're gonna give the patients the opportunity to have the technology and the things that they want to sharing. Uh, you know, I got my first email on sharing data three days. After you remember the g4 receiver I've heard I don't remember what we call it, but the g4 receiver that would talk to the phone. Sure. And I mean three days into that I got an email from somebody saying we'd save their life. The proactive alerts and a lot you know, the the low glucose soon alarm. I think the numbers like 4 million patients have acted on a low glucose soon alarm and avoided a low glucose value, right at some point in time in the night. Those are our four main instance. Those are big innovations and big changes, and we'll continue to bring those to market. So yeah, again, listeners, don't sleep on Dexcom will be there.

Scott Benner 25:27
Well listen, if you're making me think of two things. So the The first thing is, and and maybe I can take your challenge up here. I could do a a focus group online. And then bring it out like this. If you want to hear people's ideas like do you just want to hear people's ideas? Or do you think you've had the advice that I

Kevin Sayer, Dexcom CEO 25:46
hear quite a few of them? Yeah. But I'm not averse to. I don't know if I'd want to do an online or have a discussion. But I am happy to address anything on a podcast like this. Yeah, we have, we have spent a lot of time listening over the past couple years. I'd like to say we're a lot better than that than we used to be. We used to be a bunch of scientists. Yeah, figuring out this is what we can do. Now our scientists, in addition to our consumer, people become listener. So we do a lot of focus groups and listen, but if you I mean, we could talk about that offline.

Scott Benner 26:21
But I'll bring it to you. I can go on Facebook and get everybody's thoughts and then just dump them in your lap. And inundate you with them if you want to.

Kevin Sayer, Dexcom CEO 26:30
My favorite user discussion was with an 11 year old who for his vacation came to San Diego, parents from San Diego, he had three pages of notes on a legal pad. He had questions about the chemistry, the chemicals used in the membranes. He had studied this so much it was it was an awesome us morning, I was blown away. That's cool. Why this kid? So Well, listen, and if you have some to bring me I happy to, we may or may not address them all, but I'll certainly listen. No, it'd be.

Scott Benner 27:00
It's interesting, I think just to hear, like, you know, down to the smallest idea. For instance, like people are like, I'd like to be able to set like a different alarm for a different time or I need a different tone sometimes or just the just the idea of what make wood in a perfect world make their their experience better. Maybe some of them are addressable, and maybe some of them aren't. But it might be something you haven't thought of. I am going to let you go. But let me ask you, because you said something a second ago about the chip being able to talk to more than one device, which leads me to ask you about right from the transmitter to Apple Watch. Because that is something people ask me about a ton.

Kevin Sayer, Dexcom CEO 27:37
That project is not going as fast as we wanted our Bluetooth radio is needed to evolve an Apple Watch technologies also evolved a bit, I think with I'm very confident will be there with G seven, I don't know where that progress is G six wise or with the next generation watch. Next, something, we'll just have to get back to you on it. It is moved, it's moved back on the list, because we've just had to deal with some other mainly getting g7 ready to go and that Bluetooth has taken priority over the direct to watch connection. Yeah, I bet I get it. I get and I get why people want it. There's a lot of complexity there. Because that watch has to be charged every day or every other day. And then the question is, what do you do for loosen alarms while the watch is charging? And what is it going to talk to? And there's some things we have to work out?

Scott Benner 28:24
Yeah, I think that's been a through line through a lot of things we've talked about today is that there's more going on, than maybe the average person would expect. It's not just so easy to throw Dexcom into a hospital and let them use it, etc.

Unknown Speaker 28:35
That kind of No, not at all. Yeah,

Scott Benner 28:37
well, I appreciate this, Kevin very much. Your time is always well appreciated by me. So

Kevin Sayer, Dexcom CEO 28:43
hey, thanks for having me again. Of course. I'll see you soon. You bet. Bye Bye. Take care.

Scott Benner 28:50
I always enjoy talking to Kevin and find out what's going on at Dexcom. Big thanks to him for coming on the show. Here's some other stuff T one d exchange.org. forward slash juice box. Go check it out. I joined the register. You can too. If you're a US citizen, and you have type one diabetes, or a US citizen who is the parent or caregiver of someone with type one. And you can jump right on. I answered every one of their very simple questions in less than 10 minutes, you could do absolutely the same. Just check it out. See what you think T one d exchange.org forward slash juicebox. Their research has brought some pretty amazing things to light for people with type one diabetes, and I would not be talking about them if I didn't believe in what they were doing. Don't forget again juice box docs.com if you're looking for a great doctor, or you'd like to suggest one to one of the other listeners of the podcast, and of course those diabetes pro tip episodes are right there in your feed. They begin at Episode 210. There's also for new listeners or people are just jumping on All of the Ask Scott and Jenny episodes are defining diabetes episodes. If you're really looking for management talk, this is where you go diabetes pro tip, defining diabetes, and ask Scott and Jenny, I think all of the other episodes are absolutely terrific. But if you really want to dig down and look at management talking about insulin, that's where you start. Look, I have a little time left here, so don't begrudge me if I tell you that, while this episode is not sponsored, there are sponsors of the podcast that you could visit and there are links in the show notes of your podcast player at Juicebox podcast.com. If you want to find out more about the Dexcom g six continuous glucose monitor, get a free no obligation demo of the Omni pod tubeless insulin pump find out more about g volt glucagon the Contour Next One blood glucose meter and touched by type one.org. And I already mentioned to you on the exchange. So anyway, look, I put this episode together for you on a Friday night. So don't don't hassle me. Let me just get out there and click on the links. Help me out a little bit, though. Wait, I'm back. There was something else? Hey, sorry. I apologize. I the abrupt stopping and starting may have been confusing. You should check out the private Facebook page. For the podcast. It's really something else. I'll let you decide if that's true or not. But it's called Juicebox. Podcast. Type One Diabetes. It's a private Facebook group has over 6000 users right now. And it might be the nicest place online to talk about type one. Really proud of the people that are there. Boom, boom, boom. Oh, you're loving the show. leave a review. I was a good one. Right on Apple. Right? Five stars say something really heartfelt. Nice. Spell all the words, right? Because it means less when you make a typo. I don't know why. But when you're reading like us a really great review. This person really loves us. Oh, they spell three words on? Yeah. Geez. Not as great. You don't mean just proofread it. I know. Now I'm asking you to leave a review and proofread it. But I mean, that's pretty much the minimum effort on that, don't you think? What else there's got to be something else. It's late on Friday night. spent the whole day putting together a bed for art and my knees hurt. I was like on the floor in the garage. And I gotta be honest with you. I feel like I'm gonna really feel it tomorrow. These are not your problems, but they are mine. And I am the one talking to the microphone. So I pretty much get to do whatever I want.

What else should I be saying to you guys? Hey, follow me on Instagram, too. If you uh, you know, if you're on Instagram, it's at Juicebox Podcast. That's pretty much it. You know, one last thing. A lot of people listen to the podcast online, which is cool. Like, if you want to listen on my website is fine with me. It's just, there's so many easier ways to do it. So I thought I'd go over them very quickly for people who end up listening to the show and don't know a ton about podcasts. First of all, if you have an iPhone, you just open the podcast app from iPhone search Juicebox Podcast, and then subscribe to it. Now be careful make sure you get Juicebox Podcast type one diabetes, because after this podcast got really popular. A lot of people had the idea to call their podcast that Juicebox Podcast they're trying to trick you into listening to their podcast, but don't do that. Listen to mine. Juicebox Podcast type one diabetes, search it right there in the app on your iPhone. The app is called podcasts. So it can't be that difficult to find. You can also listen on Google Play. We're brand new on amazon music. You can listen on amazon music now. Pandora, Pandora, people like Pandora, right? Stitcher, I Heart Radio, you can even say to Alexa to play the show. Oh, and Spotify. Right? Spotify is a place where a lot of people listen to things. So that's a place you should know about to in honesty, pretty much any of these applications that you've ever heard of. You can find the podcast and please remember, especially Android users who have to use a lot of third party apps for podcasts, you should not have to pay for a podcast app. Okay, there are good ones out there that are free. Actually at the top of Juicebox Podcast calm. It says subscribe and listen for any podcast app. As you kind of scroll through the different things you can click on. There's one that says subscribe on Android. And that just takes you to a page that shows you a ton of different podcast apps for your Android phone. podcast addict is very popular with people I hear people like pod kicker. Anyway, there's a lot of different players pick one don't pay for them was my point. podcast app should not cost money. This should never cost you any money. Spotify said actually, too, for those of you living overseas. Ghana, I think is an India based app. Starting to get some listeners there, so hey, Andy, what's up? You can also listen on player Fm radio.com and Deezer. I don't know what these are is, but I'm on Deezer. Alright. And these are the places you could listen to the podcast. Yeah, that was that was lame, lame, but I enjoyed it. And anyway, find the show on a podcast player and subscribe. It really is the easiest way to listen unless you love listening online and then Okay, do that. I'm not stopping you. It's cool. But you know, podcast players keep your place while you're listening so you can come back to shows it's a lot easier. Is that it? Alright guys, I'll see you. When I see you. Which will be sometime next week. We will be more episodes, the Juicebox Podcast. Thanks a lot for listening. I really, genuinely appreciate your time.

---

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#388 Playing Jax

Tori is a D Mom to a young child

Tori is Jax mom and she's here to talk about their life with type 1 diabetes. 

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

+ Click for EPISODE TRANSCRIPT

---

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 388 of the Juicebox Podcast. Today, I'm going to let you listen in on a conversation that I had with torey. She's the mother of two kids. Both of them are very tiny. One of them has diabetes. And here's the thing about Tory, and she doesn't know this. So this is going to come as a surprise to her. Almost every day on Instagram, Tory shares one of her son's Dexcom grants with me. And she's gotten so good at managing his diabetes, that his graphs sort of helped me believe that the podcast works. So while it's possible that I might be your cheerleader, the one who's telling you you can do it, like go ahead, try something Tory sort of mind. It's the interaction that she provides. And honestly that all of you provide, that helped me believe that the podcast is valuable. It's not an echo chamber. If somebody's talking back. I always very much appreciate seeing Tori's message. And I don't think I've ever told her that. So Tory, thank you. And people should follow Tory she's Tory tackles too. On Instagram. It's got some cute kids. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin.

This episode of The Juicebox Podcast is brought to you by the Contour Next One blood glucose meter. You're going to want to go to Contour Next one.com Ford slash juice box to check out the meter that Arden loves that I love. We all love it. It's the bomb diggity Contour Next One comm Ford slash juice box. Have you ever considered supporting people with type one diabetes by lending your information to research? super simple to do at T one d exchange.org. forward slash juice box. It's a quick and easy from your home right there on your phone simple way to advance Diabetes Research and support the podcast. I'll tell you a little more about it later in the show.

Tori 2:37
My name is Tori and I have two kids and my toddler is a type one diabetic.

Unknown Speaker 2:43
Okay.

Scott Benner 2:45
The toddlers how old

Tori 2:46
she is 21 months on March 2.

Scott Benner 2:49
Okay, we're not gonna use his name. So we're just gonna. We can if you want I just felt like you weren't.

Unknown Speaker 2:54
Oh, no, his name is Jack's.

Scott Benner 2:55
Oh, all right. Never mind that everybody. jack is a toddler. 21 months old. Yes. And he has had type one for how long?

Tori 3:04
He has had type one.

Do the math for me. I think nine months. Um, he was diagnosed in May right before he turned one a week before his birthday.

Scott Benner 3:16
May 2019.

Tori 3:18
Yes. 20. Yes.

Scott Benner 3:20
Pack ahead. Are you ready? Is it 2019? Or 2018? You're right.

Tori 3:23

2019. He was born June 2018. Just last year. Okay. Yeah.

Scott Benner 3:28
So we know each other because of Instagram.

Tori 3:32
Yes, I actually came across your podcast too, because the night that he was diagnosed, we'll go into the whole diagnosis story whenever but, um, I was sitting there crying in the hospital room and I someone told me to join a Facebook group I posted in there, what should I expect going into this with a baby with diabetes? And someone mentioned to follow your podcast. So literally day one, I found your podcast and it was actually quite funny how the training differed from what you were saying. And so I'm sitting there like with two totally different rules, I suppose of how to do things. And I was like, This is so confusing.

Scott Benner 4:19
Was it was it? Was it scary or confusing? Or like what did you think in the, in the in this first month?

Tori 4:25
Well, at first I wanted to go with what the hospital was saying. Because I was like, well, his kids 15 now. Yeah, she was diagnosed really young. But, uh, you know, he's he's a baby. Like, I can't Pre-Bolus that's not

Scott Benner 4:40
also I'm a stranger on a podcast. Listen, yeah,

real quick before you go anywhere. Is there a fan running behind your anything? It's noisy.

Tori 4:50
can make the air conditioner just kicked off?

Scott Benner 4:54
Yeah, you're not allowed to be comfortable while we're doing this.

Unknown Speaker 4:57
Can you hear me better now?

Scott Benner 5:00
Did the fan stop running on the air conditioner? If so, try speaking. Okay, well, we need you're wearing some sort of noise cancelling headphones. So when you don't speak, I don't hear anything. So I'm gonna have to wait till you're into a sentence to know for sure.

Tori 5:14
Okay, cool. Yeah,

Scott Benner 5:16
yeah, no, I've been able to hear you the whole time. Just there was a noise behind you. So we're gonna see if it's going away. And

Tori 5:22
I wanted to listen to the hospital telling me what to do. First and foremost, because they saw the kid they were listening to our day to day lives. And I was like, well, this is this is the hospital. They deal with us every single day. And I'm just going to go with what they're telling me for the first little bit. And we didn't have a Dexcom yet, obviously. So, um, I was doing the whole letting him eat, subtracting what he didn't eat, and then giving him his insulin. And then when we got the Dexcom, I saw how often really let

Scott Benner 5:58
Tory listen to sound still there. And I really want to talk to you without without it.

Tori 6:02
Yeah, so it's all just gonna get edited out.

Scott Benner 6:04
It's hard to know. Depends when I listened back to it What I find interesting. So let's figure out what's going on. What kind of headphones you're using? Apple? Are you? Are they wired or wireless? Why? Okay, you're on your phone. Is your phone on Wi Fi? Yes. Okay. Are you near any other cell phones or stuff like that? Yeah. Okay. Were you in a room with the door closed? Yes. Are you still there?

Tori 6:37
Yeah, I moved into a bedroom. Okay.

Scott Benner 6:39
Nothing on because you sound better now. So it's interesting. Okay. Cool. All right. So. So I'll recap and we'll keep rolling. So you're in the hospital. You you go on Facebook to ask for people just opinion of like, what should I expect? I've got this little baby who's got Type One Diabetes all sudden, you're younger mom, too. Is that right?

Tori 6:58
Yes. I'm 28

Scott Benner 7:00
Oh, I was trying to make you younger, and you like not really 28 you should have been like, 100%. I'm a young mom. I'm 28. So but but so but your first baby? And yeah, by the way, you look younger. So congratulations. Yeah. And so you get conflicting information. Right away. There's a guy talking to you through your Apple headphones, that saying one thing, the hospital saying another thing? Initially you think maybe the difference lies in the ages, his daughter's 15. My kids, almost the larva Still, this is probably the difference. But what did you find moving forward?

Tori 7:38
Well, so we get the ducks calm after three weeks. And, and they really rushed it because we had a trip to go to Seattle that we had planned like six months ahead of time. And so and we live in Atlanta, so I was like, Oh my god, we're gonna be traveling on a plane across the country with a diabetic baby. Like I don't I don't know. We know. I need that next column. Where you live in Atlanta? Yes. Am I seeing you in two days? You are. I'll have the newborn with me.

Scott Benner 8:06
Oh, that'll be lovely. This is This has never happened to me before. I feel like I have triplets. You know, but okay.

Tori 8:12
But yeah, and so with all this, I'm also 20 weeks pregnant when he's diagnosed. So I was very emotionally unstable. And so they rush to get the Dexcom to me as soon as possible and get like the it approved, because it's not going to prefer you know, babies right away. And so we get the Dexcom. And I go, Okay, so I've been listening to this podcast, I'm gonna, I'm gonna just do as a hospitalist told me before, but I'm going to see what happens now that we just put the sticks Come on him. And he spikes to like 400 after a meal. And we weren't checking his blood sugar until the following meal, because they were like, you also can't have carbs next. So cheese sticks and beef jerky. And that's it. So um,

Scott Benner 8:57
so you know, he was eating and then three or so hours you didn't really check blood sugar, you know, put counted the carbs, but the insulin and if he got hungry in between, he stayed with lower carb stuff.

Tori 9:08
Yeah, yeah. And so I go to feed him his lunch next. And you know, I've been watching the effects calm, and he starts to make a downward trend right before his meal. So that's where it was getting to a point where if he was 180 when I gave him his insulin, and then by the time his next meal, he was 160. I figured Oh, my goodness. Yeah, like, that's a perfect ratio. But he was going all the way up to 400 or so hanging out there for two to three hours, and then he'd come back down ever so

Unknown Speaker 9:44
gently and yeah,

Unknown Speaker 9:45
man. Right,

Scott Benner 9:46
right. Where you felt like oh my gosh, I must be doing really well with this. He's.

Tori 9:51
Yeah. And so I would call the hospital and tell them what was going on. And they're like, Oh, he's perfect. He's perfect. He's perfect. But then when we got the dexcom on I immediately take it into my own hands. I was like, No, we're gonna we're gonna start doing it Scott's way. And so ever since then it was we went to our first

Scott Benner 10:12
story. Don't jump ahead, you're doing really well. We're not telling them the first 10 minutes on while you're doing Hold on a second. needs a little showmanship here. Hold on a second. Let me let me say this to you. So when that's happening, right, like there's this giant leap up and then a giant leap down. And then they say, You're doing great. Did you think that can't be possible? We're not doing great, because look how high his blood sugar's thing for so long, or was there confliction in you? Like,

Tori 10:42
well, I just stopped calling.

Scott Benner 10:46
Okay, so my next my next question is, would you say now there's any honeymoon type of function happening? Are you? Are you completely?

Tori 10:55
I actually think that this week, like the last two weeks, we've gotten out of the honeymoon phase, I really truly think so. Because I've had to put so much more inflammation.

Scott Benner 11:06
So and so this is super interesting, man. Because, yeah, your graphs are. Your graphs make me feel like, I don't know what I'm doing?

Unknown Speaker 11:16
No.

Unknown Speaker 11:18
Hold on a second.

Scott Benner 11:20
And so I've always wondered with somebody who has newer diagnosis, such a baby, like, you know, as far as size and age, was there, some honeymooning going on and so you think there was, but yeah, it's gone away, and your results don't look any different?

Tori 11:36
Well, so basically, when we were hunting, meaning I would time it out really perfectly, where I would give him his insulin, and I knew that he would go low. And because I was being pretty bold with the insulin, um, I would make sure that he didn't have a spike. And then right when I knew that he probably go low, it would be snack time anyway, so he would get a fruit stack or pieces of Apple, and just like, you know, typical things that a toddler would eat. And he was able to eat that to fix a 75 blood sugar and bring it up to like, 100. So,

Scott Benner 12:14
so you were doing something that I think is, is brilliant, and I've done it myself, and I didn't just call it brilliant, because I've done it too. But I think it's it's a longer look at things, I guess, step back look. So you're, you're putting in enough insulin at a meal to not only keep the meal from spiking, but you're in some strange way with the tail of the insulin Pre-Bolus in his snack.

Unknown Speaker 12:37
Yeah,

Scott Benner 12:39
yeah. Yeah, that's good. Good job. Right? Because, because he's a little kid. And so he is snacky throughout the day. Mm

Unknown Speaker 12:47
hmm. Right?

Tori 12:48
Oh, for sure. I mean, he, the whole thing too, with them not wanting me to Pre-Bolus was because he is a baby. And a lot of toddlers have a problem with finishing a meal. But we did this thing called baby led weaning where I never did pre race with him. I literally just fed him what was on my table from six months on. And so he doesn't have texture issues, he can eat an adult sized meal so easily. So he gets his own meal, and we Pre-Bolus it at a restaurant, and he eats the whole thing. So it's very, I mean, hopefully that sticks because he's not verbal yet. And so he can't tell me what he wants and what he doesn't want. And I just kind of feed him and I go quick, you have to eat this i Pre-Bolus. Um, but he he's so good about food. So when the hospital was telling me like, No, you literally cannot Pre-Bolus until he can tell you like, I'm gonna eat half that sandwich. And I'm sitting there like, Okay, then

Scott Benner 13:43
even that seems strange, because my daughter, like you said, is 15 and she'll tell me sometimes super hungry, man, let's go for it. And then we put the insulin in and eight minutes in, she gets this look on her face. She's like, I'm just not as hungry as I thought I was. And, you know, so you find ways to trade insulin around and stuff like that, you know, I've definitely been in that situation where, you know, you put in enough insulin for 40 or 50 carbs. And it's, I don't know, four or five units when she was smaller. And her basal rate was like a unit an hour and you know, she'd have some of the food and then just be like, Oh, I can't do this anymore. And you're like, Alright, well, I'm just gonna shut your bazel off for an hour or two and see if trade just do what you just did. Right? Like trade the tail of the meal bolus for the for the bazel out in the future. Yeah, like how did you come? How did what led you to be able to think about the, the insulin like time travel for the lack of a better word, like like, because I'm always telling people, everything you're doing with insulin now is for later sometimes it's for five minutes, or 20 minutes later, sometimes it's for an hour later, sometimes two hours later. Nothing that's happening to you right now is happening because of the insulin that's going in right now. absorbed it really quickly and and to your credit, and I want to get too far away from this before. I say you've described yourself as very emotionally unstable. And I want to, I want to point out to people listening that emotionally unstable in first very. So when you're adding very to it, you're saying you're whacked out of your ever loving skull on the hormones, is that what was going on?

Tori 15:18
Yeah, I was very upset. But my little baby that had even turned a year old was, you know, diagnosed with something that was going to be for life. And when going through the pregnancy at 20 weeks pregnant, I also had a dog that was probably gonna have to put down soon, and that did happen. And my grandma was living with us who has Alzheimer's, and she passed away. So all dramatic things are happening while I'm growing a baby inside of me. And so when this happened, I'm a perfectionist. And I joke around that this was like, you know, life's a slap in my face, like, haha, perfectionist. Yeah. And so there was no other option to be better than to be perfect at this. And so obviously, you can't be perfect every day. But I tried my very best. Yeah. And so when, when they're telling me Oh, it's okay, if he's had 200. And he's staying there. Like, that's okay. He's a, he's a kid. listening to everything and reading when I was reading, I was like, that's actually not okay. Because why am I going to let him hang out at at 200 250. And that still be okay, and not that high. For, I don't know, 18 years of his life, like I, I'm not going to do that. And so while I, while he's under my roof, I want to make sure that he has all the same, you know, the same health as a non diabetic,

Scott Benner 16:55
right? And the best chance to sort of absorb the way of living that you're doing and hope that he takes it off with it. Yeah.

Tori 17:01
And then people are telling me Well, in order to have him be stable with blood sugars that a non diabetic would have, you have to go low carb, and I was like, well,

and I've ranted about this before, but

I don't want him to grow up with food issues, either, because he is diagnosed so young, that I don't want him being five years old at a birthday party having to eat, you know, stuff that I brought, when he can't, and he can't enjoy stuff that the other kids are eating. So it was such a big thing when I found your podcast that I was able to let him pretty much eat whatever everyone else is having, and, and just learn how to do it. Because one day he's going to be an adult at college, and I don't want him one afraid to tell me, Hey, I'm going out to eat with pizza, what do I need to do? And to not know how to do it themselves? Right.

Scott Benner 17:56
Now, listen, first of all, I think that, in my mind, the podcast is about using insulin when we're talking about management stuff. And so I don't care what you use the insulin on afterwards, it could be on a low carb lifestyle or a keto lifestyle, or just eating carbs or what anywhere in between, I just generally don't care. I just think that people should understand how it works so that they effect what they want to affect. I mean, they're, you know, I mean, listen, people have come on here who are low carb or keto, and they still talk about where they need their insulin for their fat and protein rises. And that means understanding how insulin works. And but at the same time, I understand what you're saying, like you don't want to, you're not trying to set up a scenario where your son is in a room with 25 people. And he's the odd man out although, yeah, like, that's just not cool. Absolutely should probably not say this, but my daughter grew up tangentially around a girl who was super fit, her whole family was really into fitness.

Unknown Speaker 18:58
And I don't

Scott Benner 18:59
find anything to be wrong with that. I wish I was fitter than I am. But when you stop and look back, she's a little weird. And she's probably she's probably not like, don't get me wrong. She's just, it's, and I'm not saying the difference bad. I'm just saying that they've gone over the ridge to the other side, like so I think there'd be a way to like, be fit and cool without being like somebody who, you know, if I get up at four o'clock in the morning, because I hear a sound outside, it's your mom running by in the dark with a little light on her head, like, you know what I mean? Like it's I don't know, like, I don't know, that might be judgmental. I'm just telling you that the way I've seen it shake out in front of them is that she's always more available to spotlight, if that makes sense. Like I'm joking in there and what I'm saying but this is the part I mean, like I don't care how fit they want to be again, I don't care if he keto or if you want to go for a run at four o'clock the morning doesn't mean anything but you might want to be prepared for the fact that the masses, whether they're right or wrong, We are going to look at your little side while you're doing that. And so you know, and so that's just the truth. It doesn't matter if it's right or wrong, it just is what's going on.

Tori 20:08
I have fitness background, and I used to do bodybuilding competitions. So that's also really funny because when they were teaching me about carbs and how insulin works, I already knew a lot about that not, you know, not the insulin itself, but how my body myself makes insulin. And so it was it was super interesting, because when he was diagnosed, people were messaging me like, of course, you would have a diabetic kid, you counted carbs, like 10 years long.

Scott Benner 20:36
Did you text them back? And you're like, this is not helpful or supportive at all?

Tori 20:39
Yeah, no, it was not helpful. I was like, oh, but like I said, my subconscious knew that I would have a diabetic child. So I've been training for it my whole life.

Unknown Speaker 20:52
So I was ready.

Scott Benner 20:54
So are you do you think that you're having the success you're having? Because he's such a good eater? Or do you think you could do it? Even if he was a little more pig? Like, can you imagine what you would do? In a scenario where you weren't certain what he was going to eat?

There is nothing like having a blood glucose meter that you can count on and trust. That's why I would like you to go to Contour. Next one.com forward slash juice box. And when you get there, take your time. And poke around. Sure, you're gonna see right away Arden's meter, the Contour, Next One meter, right there, big sticker on, it's like value pack, 40% more talks all about the test strips and everything. Here's some stuff that I can tell you from personal experience. The light at night is great. It's very holdable. It's just not a word, but it's small, but yet not difficult to hold on to is probably what I should have said instead of making the word pool holdable. Yeah, that's what I should have done. But you know what, let's just soldier on, shall we? Great light, very holdable, I'm sticking with that. test strips offers a second chance. So if you touch it in the blood, don't get it right the first time you can go back in without impacting the quality of the test. And speaking of the quality of the test, this thing is gold standard, accurate. Understand i'm saying is right up there. There's like good, better best, this one's best. Contour Next one.com forward slash juice box. This link is more than just a pretty face, there's real information here, you can go to the resource tab and find out about the contour diabetes app that by the way, pairs with your meter, you can find other products, there's other meters that contour makes you can looky loo through them if you want to. Personally, I like the next one. Contour. Next One. Also, it's possible you could be eligible for a free meter, that's under the meters and trips tab, there's even a choice card to see if you can save on test trips, there's a lot here, it's worth knowing, check it out. Even even even possible that you could buy this meter and the test trips, cash out of your pocket. And it might cost less than you're paying through your insurance company. I can't say for sure if that's gonna be you, but it's gonna be somebody. So head on over there and figure it out. One way or the other. This is the meter you want, in my opinion, Contour Next one.com Ford slash juicebox. I don't know if you remember the CEO of the T one D exchange was on the show a number of months ago, I had a very good feeling about him. And then they came back to me a few weeks or months later. I don't remember time, you know what I mean? And COVID I don't even know like what today is. But anyway, they came back to me sometime after that. And said, Hey, can you help us get the word out about our registry? And I was like, you want to buy an ad? And they're like, No, we don't buy ads. And I was like, ah, I don't know what to do that. They said, Well, what about we'll give you a little bit of money every time somebody signs up for the registry if they come through your link, and I thought, No, I'll try that. So I did T one d exchange.org. forward slash juicebox. Here's why I said yes to that. I know what your thing is for the money, but that's only part of it. The other part is there using this research to make real improvements in people's lives. People living with type one diabetes, and it's simple to do. It's 100% HIPAA compliant. It's absolutely anonymous. You can do it from your phone or your PC. I guess even if you had a Mac, you could do it from your Mac. In just a couple of minutes. I did it. Now you have to be from the US. So you either have to be the parent of a child with type one and live in the US you need to be an adult living with type one and before To us, but it's super easy to do. And it's worth it. A lot of goods come from it, I think a lot more coming. T one d exchange.org. forward slash juicebox. Contour Next one.com forward slash juice box. Links in your show notes. Links at Juicebox podcast.com. Okay, now let's find out the answer to this question. Can you imagine what you would do in a scenario where you weren't certain what he was going to eat?

Tori 25:27
Yeah, because we do have some days he's been dealing with typical toddler sickness for the last few months. I'm getting cold and coughs and so he's been a little bit on the pickier side. And so what I've done to combat any picky behavior is I have his fake foods, and every toddler has a safe food. And I will Pre-Bolus like half of what I think he's gonna eat. And if he does eat all of it, I'll do like a really aggressive, like post Bolus.

Scott Benner 26:05
No, no, I I this morning, right before you and I spoke Arden's blood sugar started drifting up. And I was like, Huh, what is this about? Because she was so super stable at 94. And I was just, this is working, I'd made a small adjustment to our baseline some the other day and I thought, Oh, my adjustment is so good. And you know, I was just like, right on, this is working. Then all of a sudden those 94 turned into like, one to one. And then she jerked. She was drifting off. And I'm like, What is happening? So finally, I texted her, I was like, Did you eat something? And she's like, she goes, Yeah, don't worry, I bolus for it. And I was like, Well, what was it and she goes, a Munchkin. And I was like, did you Pre-Bolus for and she goes, No, I was like, it's not enough insulin. So let's just put some more in, you know, and, and we're gonna find level here around 155 before she comes back down, which is cool, because she really tried something on her own to try to take care of it. That's I'm not like, I'm not. I'm not I don't that's great. Like, I don't care about that.

Tori 27:04
Yeah. I mean, that's probably been my biggest, my biggest like, fear grow. As he ages. I love that he's a baby. And I I've said before to people, I'm actually very happy that this happened, when it did. And, and it's crazy to think like, why would you want your baby be diagnosed, but, um, it just, I was talking to a friend of mine, whose kid I used to actually teach ice skating to. I used to be a figure skater. And he came over. Yeah, I was. And, and so she, her 10 year old kid is at the house. And she knows this all of axes here. will just the Dexcom and all of my, my needle stash. And he she's like, Oh my God, if I was diabetic, like, Oh my god, I would never eat again. Little 10 year old saying that. And I just thought to myself, like, Ha, that would be so traumatic to have, you know, him be so much older and him have to mentally go through that.

Scott Benner 28:09
And so I was like, these thoughts.

Tori 28:11
Yeah. And so I've thought to myself, like, wow, it's actually kind of a good thing. If he was going to get diagnosed at some point in this life that it got done when he was a baby. And it kind of scares me for when he gets older and has to manage it a little bit on his own when he's out and about and I'm listening to your podcast, I've kind of been like, okay, like Arden's doing awesome. She's, you know, she listens to her dad, like, baby ducks will do the same.

Scott Benner 28:39
Well, you know, it's, it's all you can sort of hope for, I think, it's sort of funny. I've been listening to a lot of physicists talking lately, so I'm gonna probably sound a little weirder than I usually do. But you know, we're all really just sort of really evolved ants, you know what I mean? Running around you know, one of you goes and gets the food one of you stays and builds the hill you know, some of you dig the holes like we all are doing like a different job. And we have life cycles. And you know, every once in a while you look down one of the answers going crazy right is running in 16 different directions and then it disappears away and probably wanders off and dies. And so there's just we're not all going to have the same level of success in life in in so many varied avenues of our life, right? Like you know, your health, your fitness, some of us are gonna lose our hair, some of us are going to do better at keeping a job. Some people are those people who are always an HR going I have a problem this is a problem you don't realize but you end up being a person who people go Yeah, we don't really want to hire you. And like and but you don't think that because on your side you have a problem. Like it's it's just we all end up being different types of people. Some people become addicts. Some people become addicts, not of their own. No issue like some people become alcoholics, some people never drink. There's all kinds of different ways people's lives are gonna go. And that's going to happen for people who have Type One Diabetes too. And so the best you can do is lay in Foundation, and tools, and reason. And then do your best to sort of Shepherd them towards that being something that's important in their life. Listen, I very well could end up at the end of this being the guy who had a podcast to help the whole bunch of people, and it didn't help his daughter. There's no, there's no way to know that, right? Like, there's absolutely no way to know if this is gonna work out for my kid any differently than it's gonna work out for somebody else's just because I understand it might not be the reason she understands it. I just don't I just do my best to see who she is, how she absorbs things, what she cares about where she gets lazy, all these things about her, and I'm just trying to take what I know and retrofit it to her. And that takes time. And that takes a lot of time. Right? I shouldn't I should not be listening to physicists talk about the nature of messing me up. Let me say something stupid instead? No, no. But the point is, is that some of you listening aren't going to end the way you want to end. But, but that doesn't mean you're not going to end the one the way you want to end because of the decisions you're making today. But that doesn't mean you can't change the decisions you're making and find a different ending. It's just more difficult. Boy, I don't know I there's part of me that wants to say it's more difficult when you're parenting because you're trying to infer what another person needs. And then there's also a part of me that thinks it's hard to do for yourself too. It's me, it's difficult one way or the other. But I think what's really interesting, what needs to be paid attention to when you're caregiving for someone else, is how often you take your feelings or interpretations of a moment and put them on someone else. Just because I feel like this in this moment. That must mean everyone around me is feeling this too. That's never right. You know what I mean? Like, like, see, you really have to want to dissect understanding the person across from you like, like, just, you know, it's, you think this is super important, this Pre-Bolus thing thing, and your kid just goes out, you know what, I don't care. And, and so, right. So and so you have to figure out, how do you make what you care about? Something they can care about? I don't know. It's just It's very, uh, I didn't think this was gonna go this way. Tory, I apologize. I just like Tories on Instagram. She's got this rad graph all the time. You You basically. So you know, when some people say like, Oh, yeah, people have flat graphs once in a while. That's the only time they share them. I feel like you send me a rock ass amazing graph. Almost every day.

Tori 33:02
He doesn't have spikes. I mean,

I today, for example, I'm looking at his graph right now. And he started his meal at 118 got ups like 150. And now he's back at 130. And you know, that's, that's high for us. nice and gentle.

Scott Benner 33:17
And listen to the second baby boy or girl? Boy, again, boy, you see? So here's what I don't understand. How is that kid's name? Not Scott, How did this get away from me? Exactly. I was counting on you being the one you know. You mean? Yeah, yeah.

Tori 33:32
After the first one that saved my first baby.

Scott Benner 33:36
I didn't save your baby. But I've just That's very kind of just saying like, I want to you eventually is going to be you know, I'm going to catch you in. What did you call yourself? very emotionally unstable. I'm going to catch someone in a very emotionally unstable moment. It's like the podcast guy. And and I'm going to get a kid named Scott one day, even though it's not a great name. But um, but anyway, I'm kidding. I had to make up for the physicists talk. And we're all just sort of evolved dance and etc.

Unknown Speaker 34:02
So yeah.

Scott Benner 34:04
Just say something stupid to keep this moving. Are you pumping or injecting? Or how do you get me

Tori 34:10
We are MDI stuff. Ah, see. And we had spoken right after he was diagnosed pretty much and I know you were telling me about the AMI pod, and I want to get it on him. As soon as possible. We're going through a little I'm trying to figure out a job change on that slide. And so we're not sure if we're wanting to spend all our money on our deductible just to start with a new insurance and then, you know, but I'm also very comfortable with them to get right now. And yeah, and so right now, it's just not been something that we are in dire need of um, I do see that we would have even more stable lines and it would become Even even better blood sugars, but right now he's doing really well. And he has been starting to pull on his Dexcom. And that's been very irritating. And I'm just afraid. Yeah, yeah. irritating to me. And so I don't want him to pull off the only pod so I'm just like a little little weary right now and being like discovering things on his body and his age.

Scott Benner 35:27
Hey, so what slow acting insulin are you using?

Tori 35:31
Basic bar? Ah,

Scott Benner 35:32
see people talk very well about those two new ones, which is what are they basically? I can't even say basic glar. We did. I did say it is the other one. To Seba. No. Yeah, there is that one. But I'm right. Those two that are kind of the newer fancier ones that don't. Yes, they seem to actually last more than 24 hours, not less than 24 hours.

Tori 35:54
Yeah, I believe so.

Scott Benner 35:57
Yeah. And so you're so you're getting a stability? A good base from your bazel to begin with? How much? Are we talking about? How much bazel does he get a day? two units?

Tori 36:12
He weighs 35 pounds.

Scott Benner 36:14
Yeah, he's a he's but are both your Is it fair to say that both of your kids are pleasingly plump. Is that a nice way of saying

Unknown Speaker 36:24
Yeah, yes.

Tori 36:27
Yeah, they both are like 99th percentile. Like, I mean, when that was the whole thing with Jack's like, we started seeing him lose weight. We were like, holy cow. Like this is a chubby baby like, this is something's wrong.

Scott Benner 36:40
Like he did someone put this kid on to CrossFit and I didn't realize it.

Tori 36:44
Yeah, like he was always eating. So I was like, I don't get it.

Scott Benner 36:47
How tall are you?

Tori 36:48
But yes, I am only five feet tall.

Scott Benner 36:51
Wait a minute. And how tall Jasmine?

Tori 36:55
Evelyn really skinny.

Scott Benner 36:57
Are the kids like 90 whatever percentile for height two or four? Wait.

Tori 37:02
Yeah, yeah. They're just big. Any, any giants

Scott Benner 37:05
in the extended family?

Tori 37:07
No, no.

That was that was a big baby, though. I was not. So I think that, okay, they're just big babies.

Scott Benner 37:17
Yeah, no kidding. That'd be interesting. I'm imagining, you know, when you're, you're like, 45. And you're out somewhere and the kids just like three feet taller than you and you just think you adopted them. You know what I mean?

Tori 37:29
Oh, for sure.

Scott Benner 37:30
Yeah. Oh, yeah. I have. I have a friend who's so short. She's just the shortest person I've ever met in my entire life, but her whole family is. And so with. Yeah,

Tori 37:39
my whole family is pretty sure. Yeah,

Scott Benner 37:41
that's uh, that's interesting. So how about diabetes in the background of either side? Do

Tori 37:46
Did you find any? No, buddy. Not a single person. I didn't even know about type one. I was bad. oblivia

Scott Benner 37:54
any other endo problems that you could find anything?

Tori 37:57
No, he was. He was so healthy. We had a perfect you know, hospital stay when he was born. He was born at 40 weeks and five days or six days. I was in do some four and five. So I was you know, full term. And then son. He was eight pounds, six ounces, very healthy. breastfed ate everything. No allergies, no health concerns and nothing. At 10 and a half months old, I noticed that he was a little constipated. And that was that was the sign that kind of started getting me thinking about things. So at a week before his birthday, I remember on a Monday or on a Friday, I called a pediatrician. I was like, Hey, can I get in the office on Monday? Cuz he hasn't pooped? So they're like, yeah, I mean, we can check and see if his stomach's hard and, and whatnot. So then I go in there and they go, Oh, he's just you know, a little blocked up I think just get him some prune juice and pure and puree now mind you, I'd never given this kid juice or even pureed food. So this was what got him into DK, I believe. So then

Scott Benner 39:18
you think the the the sugar from the burns is what pushed him away?

Tori 39:22
I think so. So well, that and on Tuesday, so the day after the appointment he was he weighed men on Monday, 29 pounds. The day after the appointment we went to do you have a Rita's Italian ice scenario? Let me know what that is. I love Rita's.

Scott Benner 39:39
So Rita's originated in Philadelphia, right where I grew up. My wife actually knew the family that started the company.

Tori 39:46
Yeah. So that morning, he'd been a little groggy and I remember telling my dad and like, I just needed to get out of this house. I'm way too pregnant to be dealing with this fussy baby. That's turning one Soon and I guess he's teething. But he's just he won't stop crying. So I'm going to go to the splash pad. It's really hot. It was a nice 90 something degrees and mid end of May. So we go to a splash pad and my baby's always been very, very happy. Just a hyper happy baby and he just wanted to stand there. He wasn't walking yet, but he was crawling and he would stand independently. So he's just standing there like, I don't like pie in the water and he just cried. So that I'm like, okay, whatever. We'll go to breeders and get some to Lottie and I'm giving him spoonfuls of that and I have a picture of me spoon feeding him in the stroller and looking back now I'm like, how did I not know? Because his eyes were sunken. And he had like these darks, super dark circles, and he just looked really emaciated. And I was like, something's wrong. I think he's just tired. Maybe he's not sleeping well. And then that night, he threw up is the first time ever if he had grown up. And so that goes, I don't I don't get it. Why is he? Why is he throwing out? What do you feed him? I was like, I mean, he had sugar today.

Scott Benner 41:17
Like how that immediately goes like, Hey, would you do to my kid? Do you give him some? Yeah. You're like, I did give him sugar. I actually gave him like soft serve mixed with water ice. So

Unknown Speaker 41:27
yeah, I

Scott Benner 41:28
mean, if I'm being honest, I'm really pregnant. I wanted him to stop.

Tori 41:32
Yeah, I wanted to give him a nice little tree feed. I felt like the slicker and the ice like it would move his gums.

Scott Benner 41:39
You're the only one that has to be pregnant, or excuse me constipated. You're

Tori 41:43
like, yeah, I'm pregnant.

I'm mind you. We still like he had prune juice and his sippy cup, and he wouldn't drink it much. But he then he started to like, get super thirsty and wanting to drink all of it. And so I'm like, That's weird. You didn't like it earlier today. But then on Wednesday, I'm doing I'm sitting on the ground playing with him. And he crawls over to me and he starts breathing really, really heavy. So I call the pediatrician. I'm like, something's wrong. He's throwing up. He's breathing really heavy. And he's very lethargic. And he doesn't even want to crawl now. And he just wants to sleep all day. And so she's like, Okay, come back tomorrow. And we'll see what's going on. And they didn't actually wait a minute or anything they just said. Let's have you scheduled to go to a gastroenterologist at Children's Hospital on Friday. So now we've gone Monday through Friday. With this, you know, baby that still hasn't pooped. He's now getting way sicker. And Friday morning at the gastro they weigh him. And he is and mind you like all throughout those. When Tuesday, Wednesday, Thursday, Friday morning. He's throwing up everything he eats. And so we're getting very concerned. And he goes, Well, there's nothing blocked in there. Let's weigh him. And he's 21 pounds. I lost eight

Scott Benner 43:09
pounds.

Tori 43:11
Yeah. And I remember holding him being like, this is this is scary. Like I was crying now. And unlike I don't know what's going on with my baby. And he goes, does he always look so his skin so modeled? And I was like no. And they go well, he's very, he looks very hydrated. I said, Well, that's impossible. He's always drinking water. And he's always being like he pees through snipers nonstop. So he's like, you just looked at me. At that point.

Scott Benner 43:38
Can I ask you do you have the it's a recent thing. So you might have the memory? Did it? Was there ever a voice in your head that thought my kid is dying? Or did you did you actually think that?

Tori 43:52
Yeah, on like Thursday, because he was just falling asleep in the highchair. I was feeding him some more Korean puree. Nothing ever said diabetes. I just thought he was dying. And so on that Thursday, I remember feeding him and he just fell asleep eating. And I walked over to my husband and he was like, um, I think we need to go to the hospital. And he was and he's very, no, no, no, he's fine. He just has a stomach. And I'm like, this is not a stomach bug. And, and so he kept on trying to reassure me like, everything's fine. But we're going to the hospital, you know, we're going to go see the gastro, they're going to figure it out. And I was like, Okay, well, that whole night, that Thursday night, he was just waking up full of pee full of thermoweb. And I was like, I don't get it. So then Friday morning. They tell us he's very dehydrated, and you need to go next door and get good the emergency room and get hooked up with IV fluids. So now we're like getting the runaround and we're like, oh my god. Like, what are you gonna find out what's wrong? And so I'm like, I'm not leaving this hospital until we know exactly why he's not having a bowel movement. And why he's, you know, so dehydrated, so to speak, because I didn't think he was dehydrated. Like first time Mom, I didn't realize this scan wasn't supposed to be modeled all the sudden. So then we get hooked up with the emergency room and they're trying to find a vein and his veins keep collapsing because he's so dehydrated. And there they have the whole IV team, pinning him down, he's crying, then he's passing out and then he's crying some more. And we're crying. And someone rushes in after they did a blood test. And they go, either of you diabetic. And we just looked at each other. We're like, no. And they go, well, his blood sugar is 360. we're transferring up to 50 right now. And they didn't tell me. They didn't say it in a very, like, bedside manner. They were just like, he's pretty sexy. We're going to pick you up. Okay. And then he just runs out. And I was like, What?

Scott Benner 46:00
What does that mean? Quick? I'm sorry to do this. Because Arden's text me Never mind the abbreviations. nvm, right. Yeah, all right. Sorry. Just got old there for a second. Like, it's an N and there's a V, and I forgot, it feels like there should be an M in it. Sorry about that. That is stupidly, like my daughter's diagnosis. Like your details are different. But the the salient points are the same. And so I'm assuming for many, many people, but yours went on for a while, like you didn't know and you kept taking him to places and they were just like, Oh, you know this that this that? What's that? When you go back home right after the fight, you want another thing? And another thing that isn't correct. I don't like that's a weird feeling. Right? Like that. Like it's gonna be okay. Like person in charge said don't worry. And and Whoa, but everything in you is kind of yelling like, no worry, this is wrong. It just there's nothing right about it's fascinating that they didn't see that I mean, a nine pound weight loss for 30 pounds is a third of their body weight. And born that that, in general, you would think that would put a person right into a hospital for a battery of tests. On that doesn't make that mistake. It just, it's unmistakable that like that. That's what should happen. And I like that your husband recognized Hey, it's hospital time, but it's gonna be fine. It's interesting. Yeah, he went into like, hey, Tori, don't worry. Just because the guy who's never once wanted to go to the hospital thinks we should go to the hospital. That's not a reason to get upset. But he was panicked, obviously, if that's what that's what he was considering to. So veins are collapsing. Nothing's working. He's completely dehydrated. What was his blood sugar when they figured it out? You know?

Unknown Speaker 48:01
360?

Scott Benner 48:04
oddly, not that high. Unless, unless it's been 360. For how long? How long do you think that have been going on?

Tori 48:10
Well, his a one C at diagnosis was 11.9. Okay,

Scott Benner 48:15
so quite a while.

Tori 48:17
Yes. So I try and go back and I try not to like get myself worked up over it. But I try and go back in pictures and try and see when it might have started. And I just can't tell because he'd always been such a happy plump baby.

Scott Benner 48:33
possible to that his blood sugar was bouncing around, maybe it would jump up stay up for a while. And then it may be his you know, his pancreas would be like, you know, come back online for a little while, bring him back down. Because the one thing I don't know. And I wonder how we could find out but in a in a if you could get a healthy pancreas, BOD in the body of a healthy pancreas up to 360. And I don't know like somehow like turn off the pancreas for a little while bring it up to 360 let it stay stable there. When you turn the pancreas back on. How long would it take a healthy body to bring a 360 back to you know at because that really is what you're talking about? You're talking about a body that doesn't have diabetes, that all of a sudden has it and then all of a sudden doesn't have it again while this pancreas is sputtering you know, to its demise. And and that's just very um, that's a weird thought I've never had before. But that didn't mean like I went because maybe he would bounce and stay there for a few hours and then come right back to normal again. Like maybe there'd be no way for you to notice. Really?

Tori 49:40
Absolutely. I believe so too. Yeah, I don't know. He never had a healthy diet or an unhealthy diet either. So I was very I didn't feed him. A lot of you know, snacks. Um, it was I was that mom that was like, Oh no, my kid will never have juice. That's horrible. So then when he was diagnosed, I was like, Well, I mean, I think he'll drink juice. And it's like, Well,

Scott Benner 50:11
turns out he's very sweet. And most people like it Arden, you know, interestingly doesn't like sweet things. Yeah,

Tori 50:17
yeah. So Oh no. Now Jax loves them because it's a hot commodity, and

Scott Benner 50:23
you're able to turn them around pretty easily.

Tori 50:25
Yeah, now now. He's all about it.

Unknown Speaker 50:29
Okay,

Tori 50:30
so horrible. I can't even eat in front of him.

Scott Benner 50:33
Do you ever do wonder about the baby? Do you?

Tori 50:37
I do a lot. Because, yes, we did not have diabetes in either side of our family that we know of.

And so we're very

uneducated on like, what type one totally means. And when he's diagnosed before he's even a year old. I'm like, Well, what does that mean for my, my other baby that I'm having? So throughout this whole training period at the hospital, I'm going What about this one? in me? It's gonna. And so they're telling me the percentages and stuff and they're like, you might not even have anything to worry about what the next one? This is just, you know, an anomaly. And I'm just thinking to myself, but why one years old?

Scott Benner 51:24
Did you? Did you try to like buy like extended warranty on the back? Like, listen, I usually I don't buy the warranty. I just figured, like, if I dropped my iPhone, I'll buy another one. You know, I never dropped my phone. I'll be okay, but I'm gonna get it on this one. If you don't mind. Where do I

Unknown Speaker 51:41
sign up for?

Scott Benner 51:44
Now, it's it's the, it's the so early in life thing that's shocking. Oh, I can tell you that. In the middle of July of 2004, my wife and I had bought a house. Maybe two years prior, we lived in a condo we were we lived in an apartment. She got pregnant, we moved into a condo, the condo like appreciated out of nowhere. So we ran away and sold it really quickly and bought what I kind of lovingly referred to as this East house in my town. Like just it was the only one we could really afford, right. But it was on an acre of ground, which is which is incredibly uncommon in my town. So our goal was always just keep doing better. And one day, we'll knock that house over and we'll build another house on this piece of property. But in the meantime, we were making babies and trying to make money and you know, all the stuff you do. And we had gotten, you know, we made Arden on purpose in October so her birthday would be in the summer, you've probably heard me tell that story. So we've got a summertime baby. We're gonna do a summertime birthday party, and we get her a pony for not not like we didn't buy her a pony. We got a pony came to the house and gave pony rides all through the party that was outside. And we were ruining our lawn, and we didn't care. And we were just like, this is like we got a house. It's outside, we got a summer baby. Boom. So I have pictures in my head and on my computer of my daughter in a dress, looking really excited and kind of scared riding around on a pony in the backyard. And maybe a couple of weeks later, she's standing on a, you know, at a beach vacation. He looks like she looks like an extra on the walking dead. Like, she just it looks like somebody's greater skin, took the weight out of her face, found the way to take the life out of her eyes. She could barely lift her limbs or walk around. And she was like quite literally dying right in front of me like your son was and I never thought of it that way. I never looked at her and thought kid seems like she's dying. I just thought, um, it's weird. She's losing weight or she's tired or she's sick or all the reasonable things that bounced around in your head. But then once that's over, it is one of the very next thoughts you have once you've got the diagnosis of like, no, that's not fair. She's so young. Or you know that that shouldn't happen to a young person, but stuff like that happens to people of all ages.

Unknown Speaker 54:28
Absolutely.

Scott Benner 54:28
Yeah. And I agree with your your assertion by the way that you know, while a person who's diagnosed that your son's age, who doesn't receive the care that you're giving him, that might not be a great thing that he has diabetes at such a young age because then if there are complications, they're going to happen sooner in his life, but but but to your assertion that he might grow up very well, not knowing a difference, and therefore unlike the people who you met, you know Maybe won't have a horrible version. That's your hope like and that that's a reasonable hope. It really is. I think you're doing such a good job. It's fascinating. Okay, no, that's fascinating because like, I can't believe you're doing it but fascinating because of how many people I hear talk about. I have a baby. This is so difficult, you don't understand. And I'm like, No, I do understand because I had a baby a diabetes, too. But But like, not a not a, you know, not one that you were counting their age still in months, but pretty close. Like, so I know. I know what it's

Tori 55:33
like to to makes me even, like more afraid because I have a niece who is newly too and she is so choosy.

Unknown Speaker 55:46
Yeah. And I just could not

Tori 55:48
imagine if she was diagnosed at at the age she sat down.

Scott Benner 55:52
Right? I please Do you have any idea how many times like I tried to make like a joke out of the fact that Arden was getting a shot like I'm like a it'll be okay. Like big smile on my heart, my heart inside completely broken. And I'm just like, it's gonna be fine, big smile. And then she'd be like, look at me and laugh and then just take off.

Tori 56:11
You know, he's starting to do that. Now. You're starting to do that, where he sees me prepping the needles. And I I'll get the pen in my hand. I go, you ready? You ready to eat? And he he smirks at me? And then he runs around the Capitol quick. And I'm like, no, no. And I throw him over my shoulder and I pull the diaper down the shot on the butt. I'm like, well, when he you know, is too heavy to get thrown over my shoulder, you probably need to get that point

Scott Benner 56:35
there. So that hit so there by the way, is a is an experience. A lot of people don't have the one of like actually being able to hold a person while you're giving them a shot. Yeah. Or, you know, as Arden got bigger, there were times like she'd run up on the sofa. And like, you know, and she tried to get away and I'd like, you know, crawl after, and then I'd like get her. And then there's then then reality comes into play. You're holding a needle. And yeah, and they're swatting around like, like no, and and you think it for me, at least one of my most panicked thoughts was, what if the amount of insulin I intend to go into her isn't what goes in, what if she bumps the plunger while I'm trying to get near or she pulls away sooner. And now the next what I felt like was like, now the next three hours of my life are going to be wrapped in even more uncertainty. Because

Tori 57:28
so happens a few times. We were trying to train my parents to be able to do all the diabetes care while I was in the hospital with the baby, the new baby. And so I'm 38 weeks telling my parents, hey, you need to know what to do so that we can be at the hospital giving birth. Yeah. And and not being wondering, you know, hey, how much do I go for? And so so I have my mom, giving him a shot. And she first off doesn't take the cap off the needle and she like goes to give it to them and like what are you doing? And and now now I'm holding taxes are like, you know, strong and and, and Jax is trying to whittle away from me and I'm like, take the cap off and she's like, okay, okay, am I gonna poke myself and I was like, take it off. And then she doesn't dial it. And I'm like, Oh my god, you have to dial it. She's like, You're making me nervous. But I was like,

Unknown Speaker 58:36
You're making me nervous.

Tori 58:37
You're making me extremely nervous because I'm gonna be giving birth and you're gonna be texting me. Hey, how do I do this?

Unknown Speaker 58:43
Look at the killer.

Tori 58:45
Yeah, I'm like, you have to listen to me. So I she finally got it. But then she took it out right after she did it. So then like a little bit squirts out. So and I'm like, now what you do? Yeah, you just did half a shot and I gave him like one unit. So I don't even know if he got anything. He's like sat there staring at the Dexcom like, Did anything go in nap Jackson's like, he like get some eggs here. So let's get any strawberries. Now,

Scott Benner 59:15
the cool thing about that experience that I had you had is that in the moment, it's ridiculous. And you know, frustrating. But But last night, so you guys listening? Haven't heard this yet? Or maybe you have, um, you know, I don't know, I record a lot of these things. So Arden has a friend named Jani, who's 15 and also has type one diabetes for six years. And Johnny's control was not great. She'd be over 400 a couple of times a day for extended periods of time, even though she had an insulin pump and a glucose monitor. And, and she was really trying to and that's the other thing that's really important. She was not passive. She was doing what she was told. So you'll hear this on her episode because I've been recording with her little bits at a time as we move forward. But I met with her one time over FaceTime, we made changes to her settings, got our blood sugar down, talk to her about Pre-Bolus saying, you know, didn't, I walked her through the steps it was, it was weird, it was almost like I was like giving the talk that I'm going to give on Saturday when you see me, except I would give one part of the talk. And then she'd go live a day. And then I'd give another part of the talk. And she'd go live a day. And we were sort of doing it like that. So anyway, in four weeks, four weeks, I'm going to her episode of go up before this, so people should go back and find it. In four weeks, her a one c needed to be tested again. So she had had an A one c done live for two months, spoke to me live for one more month had a one seat on again. The day I started talking to her, her blood sugar was no lie constantly over 250 frequently over 400. And she went from an 8981 C to a 6981 thing. He is so good at taking care of her diabetes, right? So it turns out that all the she was very willing to make the effort she just kept, you know, making the effort with the wrong with the wrong ideas. She was she was looking at multiplication and trying to apply Division Two it like it was just you know, she was just all in the you know, right church wrong pew. And so yesterday, and I'm following her DAX calm, but I never really pay attention to it, because she's just doing a really good job. And I'm just following it till we're done recording. So I have contacts more than anything while we're speaking. But she she has not needed my help in a long time in weeks. And I don't offer her any advice, usually. But last night, I finally looked, and her blood sugar had been over 304 hours. And so I just texted her I was like, hey, okay. And she said, I'm not feeling well. I mean, I said, you mean you're sick? She goes, I don't feel good. No, I don't feel good, because my blood sugar is high. And, and I'm just not used to this anymore. And previously, she talked about how great she felt now, and her focus was different, just that her attitude, like everything about her life had changed, you know, or just for the better. And so I said, Okay, and I was able to like in a split second, figure out what was going on and fix it. Because I've lived through that moment of like, Is there something there isn't there and like, I can finally see that there isn't without knowing. And so I just said to her, I'm like, you know, your your pump sites bad. I said, so she had described making a large bolus that didn't work. And I was like I said, change the pump, double your bazel for a couple of hours. Let's Bolus a little bit of insulin. And I think it took us about four more hours to get her back down to being level again. But but it's that experience that lets me see bad pump sites now. Do you know what I mean? Like Like,

I don't need to know what you did before. Exactly. To know if what's happening is what should be happening. I hope that makes sense. Right? So she said she put in seven units, where a lot of people would be like, Listen, I can't bolus more. I'm like, I get that we change the pump. But I can't bolus more because I put in seven units. I looked at like that seven units is not working. I don't I don't care about that seven years, I'm pretending that doesn't exist. And that most people would get involved in like, oh, there's insulin on board, I can't do anything. And then suddenly that 300 blood sugar would be go from a few hours to a day. And then it would just keep running and she'd go to sleep and it would go up and see how you get out of rhythm really simply. Anyway. Oh, yeah. Anyway, I get her down and I get her stable. And I told her I said I'm not going to text just like let's talk for a second. So we FaceTime. And I looked at her and I said I want you to remember something. Those 300 blood sugars, that doesn't happen to you anymore. So when so when it does, it's not you, it's something else, you have to start looking beyond you you made the right decisions. If the insulin went where it was supposed to go, this would not happen, right? And she's like, okay, and she looked at me and she's still 15 you know, and I'm like, this is not what happens to you anymore. Because what had happened was she saw her blood sugar go up and even though she had this great success for these four weeks, what she thought was okay, like she just got she was logged into it right away in two seconds again, like they're just I must just not be doing the right thing. And, and it was I was eye opening for her. And I think for me to see that happen to her how quickly she snapped back into believing. This is just my life. It was was really interesting. But anyway, I think you have to have those experiences. Your mom has to go through that so that you know you She better at it now your mother?

Tori 1:05:02
Yeah, well, so when, when I had the newborn, his name's Brolin and I had bro in. Jack's had been, he had 300 blood sugar's the day that Rowan was born. And I said, You must have not done basically this morning, you must have not dosed him right for his breakfast, something went wrong. And I'm sitting there holding my newborn at the hospital saying this. Well, he had hand foot mouth. Little did we know. And so he was sick. And they're like, I had to give him an insulin shot again at the hospital and like, they're like, well, we just gave him some insulin that morning. And I'm like, maybe it's more. So

Scott Benner 1:05:41
that's what Arden got right before she was diagnosed.

Tori 1:05:44
Oh, it's horrible. And so he didn't have a rash yet. But the next day, they call me and they go, Well, he has some, you know, a rash on his butt, and like around his mouth and on his hands. And then dad's home with him on Friday morning, he calls me and we're about to get discharged. And they go, he's like, well, that rash. It's, it's worse. And I'm like, oh my god. Well, so they took him to Florida to my uncle's. He has like a huge 30 acre lot on his home, his homes on 30 acres. And so he just got to run around and play. And they took care of the diabetes management. So well. They just had to kind of

Unknown Speaker 1:06:24
live get thrown into it. Yep.

Scott Benner 1:06:26
Yeah. Yeah, there's a person on line right now, who posted in the private Facebook group, and they're like, I don't understand I'm not having the same success as everybody else, then when you really stop and look, they hadn't been at it for very long. So I just said to him, like, Listen, it's not a great answer. But you're gonna have to do this a few times before you get it right. Like you don't just, I don't mean, it's not paint by numbers. It's not like,

Tori 1:06:47
I haven't been in it very long, either. Um, but I think having the strength to just like, let go of the fear around diabetes helps a lot.

Scott Benner 1:07:01
What was that one of the things that really moved you in the right direction is just not being afraid.

Tori 1:07:05
Yeah. Because he's a kid. Lowe's actually worked in our favor. Because he's always hungry. So when he goes to, you know, if he's coasting down at 7970 a, I'm like, perfect. Here's some fruit. Bite of my feet. Yeah.

Scott Benner 1:07:26
But for clarity, you're not constantly feeding lows. You're just sort of, right. Yeah, your graphs are way too smooth for that to be the truth.

Tori 1:07:35
Yeah, I got to a point where I wasn't afraid of that happened. And, and we don't have like, double arrows down. Unless I totally flipped on dinner. Um, but he, he's to a point now where I mean, if, if it's been three hours since he ate, and I want to give him something, I'm, I'm not afraid to give him a little bit of extra insulin, half a unit to a unit and let him eat a snack with carbs. And the hospital still to this day is very, three shots a day. That's it. Breakfast, lunch and dinner. I'm like,

Unknown Speaker 1:08:11
oh, what

Scott Benner 1:08:12
do they say to you for how you are doing things? Do they give you any trouble?

Tori 1:08:16
No, no. They asked me what is what are his ratios. And that happened maybe the the third month when we went again. And they saw just how well we're doing. And they're like, so what are you doing? I'm like, well, so his ratios are this but sometimes they're that if he's really activates this. And they're like, Okay,

Scott Benner 1:08:40
good. No, yeah, you're paying attention. It's uh, yeah, but it's also nice to hear that they didn't you know, because too many people report back that, you know, they have this the kind of success that you're talking about, and then doctors are like, no, you're using too much insulin. They take it away from you. Like, you know, yeah, I get scared of it.

Tori 1:08:56
Yeah. Anyway. Well, so because like I said, they they don't like me giving him extra shots for snacks and stuff. But I I made them aware that I'm watching the back phone all day long. And I'm he's always he's a growing baby. And he wants to eat and he's getting really tired of cheese sticks.

Scott Benner 1:09:18
Exactly. And it's and that's important. We don't bring that up enough Is this your children need to eat? You know, like they're trying to grow their bodies are trying to get bigger and if you're having to restrict certain foods or foods at all, because you're not able to manage the insulin well, then there's another day now you have a different problem is the kid you know, not saying is malnourished, but definitely not nourished the way you're you were hoping to or that you would have if you weren't worried about the insulin.

Tori 1:09:44
Absolutely. Yeah. That's so cool.

Scott Benner 1:09:46
I'm glad for you that the podcast was helpful. It really is nice.

Tori 1:09:50
And I mentioned at my last, his last endo appointment. They were telling me about the Atlanta summit and I said, Oh yeah, I definitely want to go I listened to Juicebox Podcast and they're like, oh, That makes sense.

So they were aware.

Scott Benner 1:10:04
So the hospital. So this happens more and more, which is really kind of kind. I was told recently by somebody that they went to their endos appointment. And the person just said, Listen, I just let me just ask you, do you listen to the Juicebox Podcast? And the woman said, Yes. Why? And she was, I can just tell by your graphs. And I was, I was so touched by that. I thought, that's really, that's really cool. You know,

Tori 1:10:31
they told me as his last appointment when we were discussing you. This is the best graph that I have ever seen. From one someone that's not been diagnosed more than a year and to just his age in general.

Scott Benner 1:10:47
So in seriousness, then, don't don't just say the podcast, but like, what do you attribute that to? Do you tribute it to knowledge? Or comfort? Or is it a blend? Like I want people who are listening? who are, who are healthcare professionals to understand what I believe, which is that if you tell people the right thing, it doesn't matter how early you tell them, but I want to know what impact before I let you go like, I want to know how, how it shaped you.

Tori 1:11:17
Like, what your podcast has done for me, just in general? Yeah, like, What does

Scott Benner 1:11:21
you know, what does the information like so so here's the thing, you really haven't been around diabetes that long. So he wouldn't know. There's a an old school idea that you don't tell people too much too soon, you get a you get a little bit of information, and then you get a little more in three months, then you get a tiny bit more than three months, and in a couple of years, then we can start talking about you know about and by then my contention is, what that builds is fear and a lot of psychological angst. And so it's hard to get you back from that, then I I'm a bigger fan of getting the information out in front with good explanation about how to use it. Not technical explanation or mathematical explanation, but like real like real world ways, because I even I sat next to a physician recently, who loves the podcast, and wants to move the information from the podcast to people at his hospital, and even doctors that are training at his hospital, which I was really overwhelmingly touched by. But still in that conversation, there was an assertion that the information that I'm sharing with people about how I manage my daughter, that's not something everybody can understand. And I don't I don't know if I agree with that or not.

Tori 1:12:38
Like I had to keep on listening. And and you had mentioned in a podcast that you just put up the other day like you just have to listen and listen and listen and something's gonna you know, pay you and i think i think it really helped me to want to live day to day and really look at the grass Dexcom but I need information from the get go. I need to know exactly what to do. I am very type A personality. There's like this big thing about like Enoch grams and I'm a type one in a gram. And

Scott Benner 1:13:19
Bruce past that. What the hell is that?

Tori 1:13:22
It's like personality. I'm on

Scott Benner 1:13:24
the internet. Don't worry. Hold on a second. Type. I found that already. Hold on. Oh, I see. The Nine intagram type descriptions reformer helper achiever, individualist investigator, loyalist enthusiast, challenger Peacemaker. Which one are you

Tori 1:13:44
a performer? So type one.

Scott Benner 1:13:46
I got it the rational idealistic type, principled, purposeful, self controlled and perfectionist. Whoo, I wonder which one of these you tell me about that one? Yeah. decide which one of these.

Tori 1:13:58
Yeah, so with with that personality when, when he was diagnosed, and I would see that the blood sugar is where I wanted it. And especially after I got the dexcom and I'm trying to figure out his ratios and the hospitals just telling me to hundreds, okay. 180s Okay. And, and I'm like, that's not okay. It's not and so I'm racking my brain around how do I get these ratios to where I want them to be? And by listening to your podcast, it's little bits of information from other people and what they do and how, how their day to day goes. It's one made me feel like there's

people going through the same thing that I'm going through and people that

had the same frustrations. Does that make it a little doable,

Scott Benner 1:14:52
either? Yeah. Okay.

Tori 1:14:54
For sure. And so I was like, there's like, just because he's a baby doesn't mean that I can't have a great alien. See. And so

I don't like to be frustrated. And

my husband would see me sitting there racking my brain, looking at every single graph and going through the clarity reports, and he's like, just it's diabetes, just get over it. Things are gonna get out of your control. Sometimes I was like, Well, no, no,

Scott Benner 1:15:24
no, they won't. And by the way, you're under my control. You don't even realize it.

Tori 1:15:29
Like, I tell you what, I'm not home, when to give him the insulin. And then as I'm watching, I say, Now feed him. And so like I do,

Scott Benner 1:15:36
I'm in bigger picture to not just the diabetes, but yeah, hey, listen, this, this intagram thing. I'm concerned that I might have multiple personalities, I'm alone. things is that is the Does that ever happen?

Tori 1:15:48
Yeah. No, it does. It does. You can be a couple different things. Okay. But there's like a primary one that you gravitate to best. So I would totally take a test

Scott Benner 1:15:59
because as the reformer, I am not a perfectionist. I am self controlled. I'm sometimes sometimes personal, purposeful. I'm actually a very principled person. But I am. But I have my limits. So I always tell people, I've definitely never said this here before I live my life under like, very basic rules. Like I don't I don't treat people the way I don't want to be treated. And I don't lie. If I can absolutely help it. That's those are pretty much my life rules. But now the helper caring, I am caring. Let's see, demonstrative. I'm super emotional, generous. I don't know people pleasing. I definitely am possessive. I don't know what that means exactly. Like of people or things I don't care to. I mean, I, the people around me that I care about, I want to be close the achiever pragmatic type, adaptive, excelling, driven, and image conscious. I'm not image conscious, which you'll see this weekend when I allow you to take a picture with me, and I look terrible in the photograph, and you're still allowed to keep but I'm driven about things I care about. And things like things I don't care about. I don't care about law. Am I adaptive? I don't know. individualist. traumatic. Oh, I'm so dramatic, self absorbed at times. And temperamental, super temperamental. I'm all of these things. I have a mental illness is what I'm learning here. Isolated, secretive. I'm not isolated or secretive, innovative. It's funny because of the podcast being innovative, but I don't think of myself as innovative, engaging, responsible. I'm responsible. I think I'm delightful. It's delightful, engaging the same thing. anxious and suspicious. Hmm. I'm not anxious. And I'm not suspicious. I know you people are out there trying to screw me. So don't think I'm scattered or distractible. I love to the enthusiasts. Now you guys should check this out. You can definitely distract me. And I'm not very versatile, spontaneous. I think I pretend to be spontaneous. That makes sense. I do it down here. self confidence. I project self confidence. But I don't personally feel self confident. I'm not decisive. I need to think things through from like, 9000 different angles. will fold no confrontational, less as I get older. And Peacemaker. agreeable or not agreeable? complacent. I'm not complacent, reassuring. I'm not necessarily Oh, so the peacemaker is Peacemaker for other people. Like how does your how does how you are impacted people around you? Is that kind of the idea that?

Tori 1:18:54
Yeah, I took it that way. Yeah.

Scott Benner 1:18:56
Yeah, you took it. So you didn't seem insane. You took it that way.

Tori 1:19:02
I mean, the cool thing about these is that you can take it with your partner and like, understand each other better, because when they do something like when I'm a perfectionist, next we like Well, that's just her just gonna stare at that clarity or for for days, and so she figures it

Scott Benner 1:19:18
out. How long have you been married?

Tori 1:19:20
We? Well, we we say that we're husband and wife, but we're getting married finally. All right.

Scott Benner 1:19:25
Don't worry about that. How long have you been together?

Tori 1:19:29
It'll be four years. Okay. Yeah.

Scott Benner 1:19:31
So when you're together longer, you might have this experience if I brought Kelly up here right now, and told her for instance, that I am. Let's see, hold on. Let's pick one that, you know, there was one

Unknown Speaker 1:19:46
how I

Scott Benner 1:19:46
know. Yeah, but no, if I if I said that I'm driven, exempt, for example, she would completely disagree with that. And she would not let me have my belief that I'm driven. She would stay here. beat out the idea from me that I'm driven. She's like, No, you're not. And then she'd give me examples of why not. And then I'd give her examples of why I am. And she'd say, Ah, don't argue. And so then she just she's, you know, she's a different view of me than other people do. Which I think I think is good. Sometimes it's grounding to not Yeah, somebody agree with you all the time. All right. Is there anything we have not said that you want to say?

Tori 1:20:25
Um, well, is a one C was 11.9. diagnosis and three months in, and having the dexcom for only two months, we brought it down to 6%.

Scott Benner 1:20:36
That's amazing. What is it now?

Tori 1:20:39
Is next I know, appointments next week, and I have a feeling it'll be there. 6% still, because we have been dealing with a lot of toddler sticky. Um, so the, you know, gas has been a little wonky. But I think it'll be around 5.7 to 6%. On sugar main, it tells me like it might be around 5.7. And the clarity report says 6%. So I mean, we've been really steady right around there. I think

Scott Benner 1:21:07
that's lovely. I also think it's amazing that people who listen to this podcast are like, you can hear in your voice, the disappointment of saying 6% just, I don't know, things have been going wrong. So

Tori 1:21:21
blood sugar, it's been like around 150 or a few days and

Scott Benner 1:21:27
Arden's last day one, see that they now they play that game that, you know, I don't think they do it with everybody, but they're like, what do you think it's gonna be? And I said, five, seven. And she goes, she goes, why? I said, we were five, five last time. And yeah, and I said, and I don't, I'm being genuine from it. I don't really see the difference between five, five and five, seven, I'm, I'm in that space. I'm more concerned about variability and like limiting spikes and lows and things like that.

Tori 1:21:53
Yes. And I was looking at that as well, and our standard deviations around 30.

Scott Benner 1:21:59
But the thing is, is when she said, Why do you think it's gone up? I said, God, we've had a lot of problems this time. And she laughed at me. She goes, so you've had a lot of problems, have you? And I said, Yes. And she goes, and you believe that you're a one hurry once he's gonna go up point two. And I was like, Yeah, but I think that, you can look at that and think of me and you as crazy. Or you can look at that and see it for what it is, which is that we're, I can speak for myself. I'm so confident in what I'm doing, then that I Arden's a one sees not going to just jump up if we continue to do what we do. And so we're talking about tighter tolerances, because that's where the tools we use live, you know what I mean? Like, I, there's there, it would be inconceivable of me, for me to believe that her agency could, for instance, go from five, seven, this time, to six, five next time, like I don't, yeah, that couldn't happen. Unless something catastrophic happened to our insulin delivery, or her health or something like that, like in a normal regular situation, it's not going to move around like that. And No, you don't. I mean, like, it's sort of like, when you get in a car with somebody who's been driving for 30 years, you're just like, this rides gonna be fine. Like, you know, like, they've just, they, this is how he does, you know, like this

Tori 1:23:22
happened, the hospital told me, they were like, well, you might not always have such a tight range, because he is going to keep growing, he's going to keep, you know, going through growth spurts, and eventually puberty. And I do understand that and right now we're in a very blissful stage. But with the honeymoon ending, we're on like, a one to 50 ratio just like a few months ago, I'm gonna get,

Scott Benner 1:23:44
I'm gonna tell you with your understanding of how the insulin works. I would say that, from a, from an emotional standpoint, I think that's good advice for you that it could fluctuate around, that's not gonna be for sure. And, and I will also tell you that on the hopeful side of my betting, I don't think that's gonna happen to you. So I think you know what you're doing. And so, so when insulin needs increase, I see it right away. Yeah. And you'll increase with it. What, that's what we did. What happens to most people is their insulin needs increase, and they spend a good three to six weeks really trying to pick the situation apart.

Tori 1:24:21
Yeah, no, it happened like like, two days, I saw that we weren't doing the same like we were giving the same dinner I some days, I'll get the same dinner and over and over again until I get it right. Do exactly what I did except add another unit. And so that's what I did. And so I I noticed that last night, it worked out in my favor, except he had like a little bit of a protein and fat spike three to four hours afterwards that went in and took down right away. And then this morning, for example, it was like a one to eight ratio. And I was like, that's because I didn't give him 10 extra cards. Like I would have and I just did an extra unit and, and I said, Well, Mom, here's a fruit pouch while I do this podcast, he goes low.

Unknown Speaker 1:25:10
He didn't

Tori 1:25:11
study at what a weight right now,

Scott Benner 1:25:12
that is great for people to hear you made me feel like I've let you go after this because I actually have to record another one today. But that what you just made me feel like was I've been watching for all mankind on Apple plus. And it's sort of a fictional retelling of the space race. And you made me feel like we that you were in the capsule, running a test. And you got outside of preference out of parameters. And you just were like, do it again, like to like with the with the same meal over and over again? You're like, that didn't go right. We'll do it again. tomorrow. We'll do it again tomorrow. And and it works. Like I mean, can't do everybody can't do exactly that. But yeah, but just the idea that you realized, like, I just there's something there's a small adjustment in here. Let me make it again. And then you figure it out. And then those adjustments work for other meals. Am I right about that?

Unknown Speaker 1:25:57
Oh, yeah, well, yeah.

Scott Benner 1:25:59
Okay, cool. All right. Sorry, listen, you're chatty. So obviously, we can do this forever. But

Unknown Speaker 1:26:05
I'm gonna go interview

Scott Benner 1:26:06
the hold on a second,

Unknown Speaker 1:26:09
I am gonna interview

Scott Benner 1:26:13
Rick Doubleday, he's the chief, something officer from Dexcom. And that'll actually be out tonight. So there's gonna be a an episode with him. And they got a guy from on the pod. And they're going to talk about the agreements, they all just signed together, about working together for the horizon closed loop system. And, and I guess the Dexcom guy will probably talk about the, the other companies that they have agreements with in place for G six and G seven for people to be continuing to develop, you know, closed loop algorithms for the different pumps. So cool stuff. All right. I really appreciate you doing this. Thank you so much for coming on.

Tori 1:26:54
Thank you. See you in two days. Yeah.

Unknown Speaker 1:26:56
Oh, that's right. Oh, I'll see you then. All right. All right.

Scott Benner 1:27:01
Little did I know that would be the last time I'd ever speak in public. Anyway. Oh, thanks so much to the Contour Next One blood glucose meter go to Contour Next one.com forward slash juice box to get that rockin meter. And of course the T one D exchange. Absolutely anonymous, super safe. HIPAA compliant. worth your time. T one d exchange.org. forward slash juice box. Guys, do you have a great doctor that you'd like to share with someone else? Or are you looking for one I am in the middle of building an amazing list at juice box docs.com you can take a doc or leave one just like that little Penny thing. You know, at the gas station. Take a penny leave a penny. This is the same thing except with doctors juicebox Doc's calm.

---

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate