Scott Benner 10/25/21 Scott Benner 10/25/21

#565 Crazy Mom from Texas

Shannon has a child with type 1 diabetes.

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

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#563 English Mum

Heather is the mother of a boy living with type 1 diabetes.

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Scott Benner 0:00
Hello, and welcome to Episode 563 of the Juicebox Podcast.

Today's show is with Heather Heather is the mother of a child with Type One Diabetes. She has an amazing accent. She's a ton of fun to talk to. That is all I need to tell you. 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 healthcare plan or becoming bold with insulin. Are you a US resident who has type one diabetes or a US resident who is the caregiver of a child with type one? If so, please go to T one d exchange.org. forward slash juice box and take a few minutes to fill out their survey. When you do you will be helping people living with Type One Diabetes and supporting the Juicebox Podcast. It's it's super simple to do. It's completely HIPAA compliant. 100% anonymous, the questions are not difficult. It would be a big deal if you could do that P one d exchange.org. forward slash juicebox. Okay, thank you very much sadolin and listeners Heather and I have a right proper chat.

This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter, please go to Contour Next one.com forward slash juice box. When you get there you will learn all about Arden's blood glucose meter, which in my opinion is the greatest one that I've ever held used or counted on Contour Next one.com forward slash Juicebox Podcast is also sponsored today by trial net trial net offers free T one D Risk Screening trial net.org forward slash juicebox free p one D Risk Screening later during the ad I'll fill you in on why that might be interesting to you. Alright, let's get started. Here comes Heather.

Heather 2:17
Okay, so my name is Heather and I am an English mom of Oscar who is my type one son, he's 12 and we actually live in Spain. We live in the south of Spain. I've got two other boys and I'm married to my my Spanish husband, Alejandro

Scott Benner 2:36
That sounds very much like a romance novel. Alejandro really does

Heather 2:42
20 years it's not so much of a romance novel anymore but it was at the beginning

Scott Benner 2:47
20 years in one pandemic later and you're like very

Heather 2:52
not definitely not romantic anymore.

Scott Benner 2:54
I'm I'm starting to get that like I'll start talking and I can see Kelly and Arno look up at me and they're like oh god look he's talking Yeah, like

Heather 3:03
it's just it's not natural is it just to be sitting you know around with each other all day every day?

Scott Benner 3:09
Yeah. Now you don't have whatever that thing is. I mean I'm talking for I guess I'm speaking for myself not all men but I'm irritated by the women in my life but I don't tell them about it. But the girls seem to have no trouble letting me know just like

Heather 3:27
sounds familiar. Sounds familiar thing is I'm like totally outnumbered in my house because it's me plus three boys. So I've like you know, I've got to state my rights.

Scott Benner 3:36
I I've always found the most interesting part of being married to be like you're in some sort of a disagreement. And someone is running down a list that appears to have been started the day you mad about what's wrong with you and you're just like, I love you sweetie. I don't know what the problem is. I just love you And she's like, it doesn't matter like okay, because in 1998 oh my god

Heather 3:58
to list all Oh, yeah, I

Scott Benner 3:59
feel like she had anyway I might not be right. But I feel like the whatever the first thing was that I ever did to wrong her she's aware of it. And has it written down somewhere. I think

Heather 4:10
the thing is, you know, I've learned like after 20 years, I've learned something about myself that sometimes I just need to think for three seconds before I say what I'm going to say. And that really helps it as I just talked to I talked too much usually. So I've started trying to do that now.

Scott Benner 4:26
I find myself. I work out my thoughts out loud, which probably doesn't come to a surprise to people who listen, but I don't think that's as pleasurable in real life as it is on a podcast. Yeah.

Heather 4:40
People are not gonna find that so amusing.

Scott Benner 4:43
When I'm like, I'm thinking like, I need a new car. And I'm like, well, so I've got it down to these two and my thought process is arduous. And I like to run it around people. I'm like, What do you think of this? I can just see everybody's like, I don't care. But at one point, my wife's like, I don't drive your cars ever. Like Far like yeah I don't have multiple cars but she's like I never drive any of the cars that you own she's like I don't care it's not mine It's yours it's like yeah, I just want your opinion she's like I don't have an opinion.

Heather 5:10
You need to develop your inner voice Scott that's what it is. Yeah, well,

Scott Benner 5:13
I just got to I think what I really have to do is I actually had this problem I think my entire life I just sort of kind of expect that other people feel or think about things similar to me. And I

Heather 5:26
also like people think you're going to be interesting that's what i think i think you know, surely what I'm going to say is interesting I know and I realize it maybe isn't always

Scott Benner 5:34
look right three well at least you don't have a podcast so that you're that nobody can come back at you ever and go I know that people listen to your podcast like you but at the moment I'm not interested in what you're saying you know, I go

Heather 5:45
as quiet like a quite a big audience for kind of getting into waffling mode.

Scott Benner 5:50
Anyway, I'm sorry, your son who has type one is how old he's 12 and was diagnosed.

Heather 5:56
So he was diagnosed when he just turned 10 it was quite a kind of interesting story because so so we live here in Spain, and he goes to an international school, and he had just gone off on a on a sports trip to Dubai. To an international like World Sports championship. It was like this really, really amazing trip of a lifetime. He was so young he was only nine and he'd gone with his school my husband had gone with him because obviously it's quite young to travel but I was like really feeling that distance like I was just I didn't know what it was but I was just feeling so nervous about him being that far away. And my husband kept kind of sending me messages saying you know, Oscars really like not himself I can't quite put my finger on what it is you know, obviously he was in a Hot Country and he was doing like athletics and football and these different sports so we didn't quite know we didn't know if he was just not kind of adjusting to the to the climate out there but obviously it's hot where we live as well. And I just felt something was wrong, you know, like a mother's kind of instinct. And he's normally like really just you know, doesn't get stressed and upset about things he's really resilient but he was sending me these kind of homesick messages and you know telling me how much he missed me and just seemed off and when he got back we were so lucky because we picked up on what was going on really quickly so you know he got back and I'd say the second night he got back he got up twice to go to the toilet in the middle of the night. And I didn't know you know I'd heard about symptoms I can't even remember where but I just kind of knew what they were and I said to him the next morning like Oscar you have you been like thirsty lately and he said god I'm so thirsty all the time mom and I went right we're going straight to the hospital and he obviously was you know diagnosed straight away sent we had to go in an ambulance to the hospital in a bigger city close by but they said you caught it so early that he wasn't even that like unwell you know he seemed fine he played like a football match you know the day before and I'm so grateful that he didn't get really sick when he was that far away from me like half you know hours and hours away in Dubai so he got home and we got it you know sorted quickly but it was just it was just that instinct I just knew there was something not right

Scott Benner 8:27
quick question and you don't have to be super specific but I feel like everyone listening is going to wonder if I don't ask you guys want a diamond mine or like your gunrunners when you just you just said you just said that your son went to play a sport in Dubai and I was like that doesn't sound like it's close to Spain but I don't then again I might be 100% wrong I just feel like you're right about that yeah, so anyway I found a bag of money one day like I don't know is it none of my business I don't care I just well

Heather 9:00
yeah no I mean it wasn't it was like I said it was a trip of a lifetime so it's not we're not like sending our kids you know all over the world all the time it was this big opportunity you know we had to save up for it and we were like Should we do it should we not like we knew a year in advance that you was going to have this opportunity this is one of these going to an international school like here is it's such a great way to live for them because they get so many opportunities to travel with the school that's the like mentality you know, they want them to see the world and all three of my boys are quite, they're really sporty so they get to travel with sports, which is really cool. So we're very grateful for that.

Scott Benner 9:40
I imagine as a mom to three boys you knew when you were getting sappy text messages that there was something wrong is that when it hits you

Heather 9:47
totally, totally normally it's just like you know they're just going out and doing their thing but that's and that's what I said is you just know when there's something off and it was like I love you I miss you and all this kind of stuff. And yeah, of course you know, they say That kind of thing behind closed doors but like, you know, not on messages every day and it because he'd actually been to Italy the year before when he was eight. And I was really young and was actually fine, right? No problem.

Scott Benner 10:11
Yeah. I find myself any any decent father of sons, you always have to be like, as you pass your kid your sons by like, send mom attack Say hi to Mom, don't forget to say goodnight to Mom, don't forget because they love you to death, but their boys and they're not fully formed yet. You know and all you married ladies know guys don't really turn into humans till they're like in their 40s anyway, so

Heather 10:33
I know, I know or beyond But yeah, I mean, boys do are is how, you know you shouldn't generalize, but they can be very, like close to their moms like, you know, we, we have a very I have a very close relationship with all three of them, but they are all, you know, resilient. And actually, particularly Oscar funnily enough, you know, and I've heard before other mums say, it sounds terrible. But if, if any of the three of them could cope with getting something like this, it was definitely this one. You know, he is he is a real, you know, he's independent and brave and resilient. And he's he was the one I think best equipped to deal with all of this. Yeah,

Scott Benner 11:10
I have to say, I understand both sides of that conversation. Like I get how weird it is to say that to somebody. And yet I understand when you're a parent of multiple children thinking, you know, if something happens to one of these people, that one can handle it better than they should be him. It's

Heather 11:25
like, I think Jesus, this has happened to my oldest kid like we could have been screwed. I mean, he gets completely hysterical. If he gets a splinter, like, you know, we practically have to lock him in the room for a day, whereas Oscar will remember once Oscar had to have a tooth removed, and the dentist said, you know, it's really bad. We're gonna have to book you in for an extraction. And this is how it's going to work and Barbara and he went to the center that goes to the dentist. I'll just take it out. Now. Give me the shot and pull it out. He was like, seven at the time of the dentist like great, no problem. Just got the pliers out and pull it out.

Scott Benner 11:59
I don't want to have to come back. Just bang on it. Yeah. I have to tell you, I don't know if I've ever told this here before, but I grew up so broke. And my wisdom teeth had to come out obviously, at some point. I didn't have any insurance. Oh, no, this is gonna sound bad. I was I was at the regular dentist office. And the guy's like, Hey, you gotta you know, I'm gonna give you a card for the person I do. You know, I work with for surgery. And I said, what's that gonna cost? And I think at that point, they were like, it's $2,000. I said, Well, I'm glad I'm doing that, you know, so I don't have insurance and I don't have $2,000. And I said, What's it cost to have a tooth pulled? And he goes, What do you mean? I said, if you were to pull out a tooth right now, what would you charge me, he's like 50 bucks. I said, Well, I have $200 go ahead and pull them out. And he shot me awful of novocaine. And had I had an assistant stand behind my head, both hands on my forehead, leaning into my head to hold my head down while he was yanking out the wisdom teeth. That's pretty impressive. You got to be really you got to got to be broke to appreciate it really. But there was just no other options. I was like, Alright, well, I'll do this then.

Heather 13:04
But you know what, like, We are so lucky here in Spain. It's the same as England with our there's a free healthcare system here. You know, it's the same as the NHS in England. And we just never have to worry about any of that stuff. And it's like, I just can't tell you how much I appreciate that. Because Oscar gets as well as you know, all of his insulin, everything. He also gets his Dexcom and his tandem. All three. Wow. On the on the system here, right? No, quite, you know, obviously we go for our checkups, but it is all free is amazing.

Scott Benner 13:34
Hey, Spain. That's pretty great. Amazing. Yeah, well, okay, so you How did you know? Why did the ping tip you off?

Heather 13:43
Just because I knew you know, I knew the symptoms were frequent urination and thirst. I can't even remember how I knew. But also it was it was so weird. There was this photo that was taken. I took him on his on my phone a couple of days before and I again, I thought other moms say this. And I looked at the photo, and he had lost weight. And I still look at that photo. Now I hate looking at it. And I was like, This is not a photo of what my son should look like, you know, and it was like, just looking at something and knowing that he was ill. It's such a horrible feeling. And, and luckily, you know, they saw us. It was only two days later that we went to the hospital. And but I kind of knew what they were going to say.

Scott Benner 14:30
Okay, so you just picked it up somewhere along the lines, you have absolutely no idea.

Heather 14:34
Yeah, you know, I mean, maybe I'd have a friend who'd had it or something. But yeah, I was very clear. And I said to my husband that day, I said, You know what, I think our son's got diabetes, I'm taking him in and he was like, Don't be ridiculous, you know? And, and it was obviously we were right.

Scott Benner 14:51
Okay, well, well, what do you do next then, if you're I've never really asked anybody this before. I guess I am I don't know why I haven't I'm thinking about it like Jesus should have said the sinner. But what do you do? He's got diabetes. You get sent home, I always asked like, what kind of stuff that you get sent home with. But how do you go about figuring out what to do?

Heather 15:16
Yeah, well, it was, this was not an easy part of it. So like, the easy part of it was getting in there and getting him diagnosed. But the my main problem is that I'm in a, I'm in a different country. So you know, I'm an expat living in a different country, and I speak Spanish, but I'm not bilingual, like I've learned Spanish. And suddenly, you know, and you know, how unbelievably overwhelmed you feel. In those first couple of weeks, I was just like, and people were just talking at me in Spanish, you know, and my husband obviously was there with me. But I felt like not only am I not taking any of this in, but I'm trying to take it all in in a different language. And even though the healthcare system is amazing here, they're really behind on technology. So the general awareness of technologies is only two years ago, and my personality is just like, you know, go home, read everything, you can get all their information, you can talk to the doctor about it, and we were seeing this specialist. And I said to her, this is on like, the third or fourth day Oscar was in hospital for a week, I said, What about this Dexcom that I'm reading about? And she was like, No, no, it's, you know, it's new technology, it really shouldn't be relied on. And I was really putting me off in saying, our children don't react very well with. I don't know how, and I thank goodness, I didn't listen to her because I was like, this is ridiculous, and, and did all of my own, you know, research on all of it. So we were given all of this education in terms of the basics, which I was really struggling to take on board. So I kind of just educated myself at home. And that was how I kind of found sanity, basically, because I'm particularly like, the carb counting, and all this kind of thing. And then, after a few days, for some reason, my husband's a chef. And for some reason, they decided that we were a family, who would be absolutely fine. And we weren't going to have any problems, because my husband was a chef, and we were going to know all about food and off you go go home, and didn't really get much support after that, you know, we go for our checkups every three months, I'd still not understand what they were talking to me about. And so we've just kind of found our own way. And I don't because I know you don't i don't carb count at all, a lot of it's just kind of experience now and just realizing what what kind of food will do what to him. And I sometimes I feel like I'm doing that wrong, but I just feel like it's it's more kind of mentally is less mentally taxing that way

Scott Benner 17:47
I agree with you. I think it's interesting. Also the the idea that the Dexcom was new to the, to the medical person. And so they just said, Well, that's a new thing. That, you know, it had been around for many, many years, and then through a number of different iterations, but it was new to her, I guess. So therefore new and then that's easy, and she's had a bad experience with it. And that's how easily you could have been dissuaded if you wouldn't have thought

Heather 18:16
I was more impressionable, like, you know, I just think on what planet does someone does someone a diabetes doctor say that to somebody, you know, it's just like, it is absolutely, the most important thing that has happened to us as a family on so many different levels is the Dexcom being I mean, I just

Scott Benner 18:36
yeah, just that says being able to save the data. Yeah. All right,

Heather 18:40
and what it's meant for us in terms of, you know, being able to sleep at night, being able to have peace of mind, you know, in the beginning and then analyze everything. I just, it's it's like 90% of the whole thing for us is that Dexcom

Scott Benner 18:53
Yeah, no, that's that's incredibly interesting. I wonder if it I'm gonna be a conspiracy theorist for a second. I wonder if because they're free. They don't like to give them to people.

Heather 19:01
I know. And I do, like sometimes I so often think back to her, and you know, what's really weird is that Oscar so we've had efest and we've now got a much better doctor, but Oscar and I always like listen to you know, when your kids have a really like strong reaction to an adult, and they can't quite put their finger on it. But he hated he hated her. We'd have to go and see her every day for more education. And every time he walked into that room, his blood sugar shot up to like 285 minutes it's it was really interesting. And, and I still I still think back on her she had a really annoying receding hairline. And I've got this like nightmare vision of her with Oscar shaking in the corner and her telling me how terrible Dexcom were and just she was like a witch. And I now think should I like send her an email and say, I hope you're not saying this still to newly diagnosed families, because you're really It's a disservice is Yeah, but I don't know whether she would take that it's super

Scott Benner 20:05
funny because I have a great relationship with like the, the people I I talked with through Dexcom about the advertisements ago on the show. And you know, they're like, you know, understandably, when we first started doing this there said, like, you know, we'll we'll write some ads and go over them. And it's like, I really don't think that's a good idea. I'm like, I can just talk about it like from, you know, my experience. I think that's a great advertisement for it. And they were finally they were finally like, Yeah, Yeah, go ahead. And that was lovely of them. And, and so I've been doing that for years. But there are times when I'm saying it, where I think, like, is this even like, I hope this is believable. But you know what I mean, like, I know, it's in an advertisement. So it might be not, but I think everything you just said, it's the greatest thing that's ever happened to me, in regards to my daughter's type one. And even being able to help other people. It's, you know, there's so much, there's so much feedback. I know, I call it data, but there's so much feedback. And it's just, it's become super simple for me to look at the graph and think, alright, well, this is what happened here, you know, and it's just, it's makes it all visual, and very understandable.

Heather 21:12
I mean, that and that's when and that's the more kind of advanced age, because you know, you've been dealing for it for so long. But like, also, for me, the first thing was, I can send him to school, and not be having a heart attack every day, like, you know, when I remember we we had our week or hospital, then we had a week back at home. And we didn't have the Dexcom. And I was just saying to myself, how am I going to send him to school, like, I just won't be able to relax at all, you know, and we were having to get up and do fingerprick three times a night with the alarm on and oh my god, I mean, how you would think that this is a better way of doing things. I just have no idea. So now whenever I meet anyone who's going through the same thing, and then that what advice would you give, you know, it's just number one, get Dexcom. And then everything else is less important.

Scott Benner 21:58
It's so it's just very true. I, I feel like I run out of ways to say it. Like, there's times where I the music pops on, I want to say to people just just go buy it. If you can, like if you can afford it, get it, there's no reason that you wouldn't want to. And I think

Heather 22:13
I reacted so strongly because I was told not to get it by someone who was in a position of power. Yeah, just you know, it's kind of

Scott Benner 22:21
happened. That happened to us with Arden's Omni pod when we were we were pod shopping, basically. And a nurse told me very similarly to you like you don't want that to actually use those words. You don't want that one. I said, why not? Then she just rattled off a bunch of stuff, that none of it ended up being true. And then they apologize to me.

Heather 22:42
You don't know you don't know why or where it comes from. And then, you know, there's no point analyzing it. Like we've had really good experiences ever since. And like I say, I'm so grateful to that to the Spanish healthcare system. But it was just this one woman and, and I, you know, I just I hope she doesn't keep doing it.

Scott Benner 22:56
Yeah, no, you have to see the difference between an anecdotal. You know, somebody's speaking to you anecdotally, and somebody's speaking to you, factually. And I don't think that that's hard to discern, really, because if somebody has a bad experience with anything, it doesn't mean you're going to, and it doesn't mean they use that right, you can ask all kinds of questions, you know, people love to put online. It's a picture of their meter and a picture of their CGM. And they're 35 points off of each other like why don't understand which one to believe. And I sometimes say to myself, well, if I was you, I would believe the Dexcom over the 11th ranked blood sugar meter from 2000 and you know, 15

Heather 23:35
and also like, look at the last 15 minutes in your Dexcom which you're not going to be able to see and you can see what what angle the lines going out what you know, I mean, for me as well, he might ask, he does a lot of sports. And I just I feel like I can sit on the sidelines of a football match and just completely enjoy it because like there's so many times where he said so we have his alarm, his low alarm at about, I don't know 85 or something when he's doing a match because we know that he can just stop and have a banana or something like that. And it means that the biggest thing in his life which is sport has carried on and we haven't had to worry about it.

Scott Benner 24:15
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know I agree so you went online for this information

Heather 28:57
yeah oh god I just and this is like this is my personality like I will always try and find like I feel like I can find the truth about things you know and I I originally that was a journalist so I was trained to research things you know and that's like ironically come in so useful now. So I did my research but you know, I was researching legitimate places you know, so I knew I was getting the right information and an inch and what happened with us is that I got all the information we got him set up but then after you know a year and a half of having the pump and having the Dexcom we were definitely hitting a wall and I know you love hearing these stories and then I found your podcast and in fact I found it on a Dexcom like Facebook group. They kept kind of popping up the you know the name of the of the podcast, and that the problem is where I live here you know the worst thing about this situation is Lonely it is, you know, it's lonely for Oscar and it's lonely for me and my husband, because we don't know anyone who is going through the same thing. And yes, you know you if there are kind of support groups and stuff, but we never really found anyone we could really connect to and I found it really lonely as a mom. And even though we felt we had the information that we needed, we were just, you know, he was only like 60% time and range and his a one c could be could be a bit better. And then I hit the podcast, and it just, it just gave me that extra step that I was missing, to kind of really understand what was going on. And it was brilliant, because the English system has the different like blood sugar system. So so I can always understand everything everyone's talking about in the American system, because it's the same in Spanish. And it just gave us that last little step, you know, in terms of Pre-Bolus saying and big, a bit braver and because I didn't have anyone to really talk to about it, and all the anecdotal stuff and all the amazing Facebook, parents and everything that come in and help you is just, wow, what a life changer. It's been honestly,

Scott Benner 31:12
it's also very helpful when the people who you're hearing from know that the first time they see something doesn't make it a rule. And they'll wait until they have it. Like I say sometimes on here, like if I say something on this podcast, and it's not something that's just popped into my head at that moment, because if it does, I'll say, this just came to me. I've never thought about this before. But if it hasn't, if you hear me say something, it is a tried and true thing that we've done for months, if not years, like I don't just hop on here. And it's not a YouTube review of you know, of a vacuum cleaner. I don't I don't push it across the carpet three times ago. That sucks. Good. You'll love it. Like I really, you know, I really put a lot of pride in the fact that if I'm talking about something, I'm generally comfortable, it's going to work for most people.

Heather 31:57
Yeah, you know, but I think the reason why this works so well, like your podcast worked so well in the in the kind of social media community is that, you know, diabetes is something that you live and breathe 24 hours a day, and no one can understand unless they're living it. You know, like, however much you talk to relatives and friends about it, no one can understand that it's such a unique and slightly kind of relentless experience that finding a community that is living that 24 hour, you know, experience as well is such a kind of bonding thing. And there's just so many variables that that's why I like your podcast, you can just keep bringing our episodes because it's just endless things to talk about. It's fascinating. You said,

Scott Benner 32:43
relentless. I never I never thought of that word before. Relating to diabetes, but it fits so perfectly. Yeah, the other night. The other night around 11pm. I'm talking to Arden she's getting ready to go to sleep, and I'm getting ready to go to bed and everything. And this thing pops up on her phone. It says the Dexcom sensor is going to expire in six hours. And my brain just went that's five o'clock in the morning. And that was that's a good, a good example of that relentlessness. Like everything was going great. That sensor was working terrific. Her blood sugar was fantastic. We were going to bed. And now suddenly, it's something to think about now. For me. What I said was I looked at her and I went you want to do this now. Because if they do it now I'm like, I don't know that's gonna come on around 1am or so. And I don't love the sensor at the very beginning. So I'm not gonna I'm gonna warn her about it. I'm like, let's just get through five o'clock, and she looks at me and she goes, Okay, let's do it the morning. She goes, do not come in here at five o'clock and change that thing. And I was like, she was I will be up at seven. And I said, Okay, yeah, that makes sense to me. And and there's the difference, right? Because for me, I'm so confident in her settings. That I think that at five at when five o'clock comes and I lose the sensor. When she wakes up at seven she's gonna be okay. Yeah, and so I got up probably around quarter of seven. I tested her blood sugar. It was 89. And I thought yeah, okay. And then we changed her changed it out. And I said to her, Hey, if you think about it, test again, in like an hour or so. And you know, just in case your blood sugar starts to drift. And in my mind, it's going to drift up because of the time of day. And sure enough, she tested and she was like 130 and we put a Bolus in and then an hour later after that the CGM came on it actually was really great from the beginning. But I can see if that was can you imagine if that was two weeks in or a month in

Heather 34:48
and also like imagine how many thoughts and decisions and and you know, thought processes you have gone through in five minutes. You know, that most People just go to bed they have a glass of wine and they go to bed and that's it whereas you're thinking right well what happens in five hours Should I do that you know and this is like this is what your brain is going through 24 hours a day you just never like I have this weird thing where I go to sleep at night and I always wake up an hour after I go to sleep practically every night going What have I forgotten to do? touch yourself this like moment of panic or you know every every night because you know your brain is just in overdrive all the time and of course like the more time you do it, like we're two years into it now it becomes more part of life and more natural but it's definitely relentless.

Scott Benner 35:36
Well those thoughts too they're like you said they're, they're impactful, but they're impactful to different people. That whole like little story I just told took like 20 seconds in my real life like we were able to think it through we talked about it for two seconds and we were gone and I didn't think about it after that like I didn't worry about it you would think of it differently because you have two years into it then somebody would who's been doing it for six months that that moment could end up being a crippling event that lasts all night long. Yeah, you know and they could really they could really get stuck and like you said do and other people have you have other stuff going on in your life like diabetes isn't the only thing you're thinking about constantly when you

Heather 36:19
can't take your eye off the ball though you know this is it I mean ever like I can see how it how it can really be difficult for some families you know because I had this really nice conversation they once with with our specialist and she does a you know a diabetes camp here in Spain every summer and she said you know when I first started doing it I would be like really in a way kind of quite thankful that my own children her children aren't aren't diabetic, you know, didn't have to go through all of this that all these kids are having to go through and she goes and the more time I spent doing these diabetes camps, the more incredible I realize children with type one are because they are dealing with like 500 decisions more a day than than any other child of the same age and a lot of them are just completely taking it in their stride like you know if you can manage it and they can they can handle things well psychologically, mentally and everything you know it can be the making of kids that they can grow up into the world and becomes something incredible because of what they're dealing with every day without even having to think about it in the end.

Scott Benner 37:30
I can't tell if as artin texts me I know you're recording but when you're done you should make me french toast

Heather 37:40
she's she's got your wrap around your little fish that little fingers Scott.

Scott Benner 37:43
I told her I was like, um, you know, after this, I still have to like there's a couple things I've threw around the house. I'm getting my going to get our taxes prepared this afternoon. So, you know, my wife's telling me something she needs from the grocery store everybody's like, I don't know I'm just everyone's major Domo I realized I I went from being Kelly's boyfriend to the waiter. I don't know what happened. But But you

Heather 38:04
so you is is odd and going off to college soon. Are you? Are you still kind of looking out or she at home? Still?

Scott Benner 38:11
No, she's a junior in high school. So she's almost she's one. She's got one more year. Okay. And then she'll be going to college. She's looking at a couple places. Now. I think she's got her heart set on one in New York. And, and she's been, you know, doing her testing and trying to get everything lined up. She's trying to pull a portfolio together for where she for what she wants to do.

Heather 38:36
Does it feel like a big big thing, though? How moving out? Because you've been so involved in all her care and everything.

Scott Benner 38:42
Now, I feel okay about it. It's always been my goal to for her to be okay. And if she's not, and if I don't feel okay, then that means she's not okay. So I think she, I think she will be. And I think also these algorithms are getting more and more plentiful in the world through insulin pumps, which are going to help a lot for people who you know, who have the stuff. And we have it. So I think that will be valuable. I'm really excited to get on the pod five and try that. And there's still

Heather 39:12
one that's the one that's going to be like control IQ, right?

Scott Benner 39:15
Yeah, yeah, yeah, it'll be very similar to that, which should be out anytime now. And you and I are talking in April of 2021. So it's possible by the time this this comes out our conversation it will exist already. I think between that and what she knows, I have some fine tuning left, like management fine tuning in her head, like the other day she was wanna like, I'm gonna take care of this today. And I was like, all right. And I didn't say anything to her and I watched her blood sugar go from like, 80 to 140 to, you know, 90 to 130 like, you know, anything. She just and I said to her at the end of the day, I took a screenshot of her 24 hours. And I just showed it to her real quick. I said, Hey, I'm not breaking your balls or anything. I'm just looking at this for a second. You didn't Pre-Bolus one of these meals that Yeah. And she's like, how

Heather 40:01
does she react to that? Because you see, when I kind of tell Oscar off he gets so pissed off with me.

Scott Benner 40:06
Why didn't tell her off? I didn't I didn't I tell you say, yeah, just I just said to her, look, I'm not coming down on you, I just want you to understand that no matter how good our settings are, if you don't Pre-Bolus this food, this is what's always going to happen. And she didn't feel well. And I said, I think it's why you're not feeling well right now. You know, I was like, you're really accustomed to stability. And then I think, the day or so later, I said something kind of sarcastic about it to her. Just to kind of bring it back up again, like joked with her, I was like, seriously, just the just Pre-Bolus I think I said like, Hey, don't forget to Pre-Bolus this, or

Heather 40:45
in exactly the right way. Because, you know, I mean, Arden's obviously older, Oscar is really like hormone or, you know, kind of a bit bit kind of moody at the moment. And you have to, it's so important to, like, get the balance, right, where you're not constantly busting their balls, you are, like what we tried to do with him, and he is really, he's a really independent kid, you know, in general. And you know, he's only 12, he does it all himself. So he calculates, calculates his own boluses, he changes, obviously asks me first, but he'll say, Oh, I think I need to change my Basal rate, you know, to this amount, this time of day, he's really, really smart with this stuff. But it means that like, his time, and range is maybe five or 10%, less than it would be if I was doing it, but I prefer that I prefer to have that, like independence with him. So that as he gets older, he feels like more ownership over it all. And he but it because I but I also know that if I start going at him too much, I just worry that he'll rebel, you know, and he'll go into sight, kind of,

Scott Benner 41:55
I'm always walking on that line, like I don't, I am very, very cognizant about not starting arguments about things that aren't worth an argument. And I have a really clear idea of like, long range versus short range goals. Yeah, so I'm never trying to win today. skirmish, like I want to win the whole war. And and what that should look like, by the way is one day, my kids don't hate me. And they're doing okay. And they don't know that they're doing okay, because of what I help them with.

Heather 42:31
And also like, you'd be our you know, I think what if it wasn't this, I'd be arguing with them about something, you know, it's like, you can't I think sometimes you can kind of use diabetes as an excuse, you know, and sometimes they are high as being really moody. It must be his blood sugar. Now, I think we'll actually know he's 1213 is being moody. So it was my oldest son. But but like you say, you know, I don't want them, I don't want it to affect our relationship. I you know, I'm kind of like always analyzing I don't want, I just don't want diabetes to change his life. You know, that's what we try. And we want his life to have been as similar as it would be if he hadn't had,

Scott Benner 43:09
especially knowing that it's going to on some level, and you're just trying to not. And listen, I don't want to come off as like art. And I have never disagreed. Like we disagree, plenty. And sometimes I don't say something the way I mean to, you know, I mean, a great example is sometimes I'll go out and come back a half an hour later, her blood sugar will be 50 points higher. And you know, sometimes I'm very good about coming in and handling it. And there are other times I just walked in the house and go, Hey, everything can't go to hell because I left the house. I know I say that. And then I'll be like, and I'll be like,

Heather 43:42
because because you decided like me then so weird. Well, because it's not

Scott Benner 43:47
fair to me. Like you're basically telling me that your health and welfare depends on me not leaving your like your Yeah, I can't do that. You know. And by the way, it doesn't have to be like this. You could you could have paid attention to this. And then that's when it's like I didn't hear my phone beep. And I'll say I think you have it silence our I don't like I didn't want to hear my text messages and like,

Heather 44:09
but what will happen like say for instance, who does Arden wake up is what I worry about about college, even though it's much farther off for us? Does she wake up to alarms in the night? No, what would happen if her alarm went off?

Scott Benner 44:25
I feel like I've tried to help you with that. No, I mean, I don't I don't have the answer to that yet.

Heather 44:31
That's Yes, my one fixation, but

Scott Benner 44:33
the way I feel about it is and what my hope is I know her enough that I think that when it becomes necessary, she'll take care of it. Yeah, I think there's a comfort now knowing someone else has my back. And I don't have to hear that and wake up. Now if I'm wrong. Then I guess Arden's got a diabetes buddy. And it isn't gonna be me because I don't hear those alarms very well. Either. It's my wife

Heather 44:55
wrong, or she'll have to have a roommate. I guess who What if the roommate doesn't wake up

Scott Benner 45:00
It'll be like a bad, like rom com. I'll have to pay somebody to be your friend and never tell him. Yeah, I met Becky on the first day and she's amazing because I can't just bumped into her. That's great. No, I so I genuinely think that as she gets more mature, she'll just have to take care of it better. I also think the algorithm does a pretty good job. I mean, the I have to be honest, since looping, which I don't imagine is how Arden's going to manage things that far into the future, meaning for my money. It's funny, I think, ready. I think that Luke, that loop algorithm, is probably the best software that I've ever seen on the planet for managing insulin. And at the same time, I don't think that it's reasonable to think that my 18 being 19 being 20 year old daughter who's not really very good with their computer is going to want to use an insulin pump that requires her to be an apple developer and download software and a little under a phone. Like I don't think that's something she's going to do. So

Heather 46:10
yeah, that's one of the things that I've been so because so many people are just evangelical about looping and was terrific. It's interesting how you, you know it because you didn't it took you a while to net before you started looping. And

Scott Benner 46:26
sure somebody badgered me into it actually,

Heather 46:29
I just feel like we haven't even got control IQ here in Spain yet we already excited about getting it because Oscar tends to go too high too much, rather than too low. But I don't know whether it's going to change things that much because because of the how many variables they are I don't know what we'll see. But I'm much more excited about our lovely Spanish guy that you had Dr. Leon was Francisco Leon wasn't a lovely Yeah, he was lovely. You know, I emailed him after listening to the podcast I sent this email in Spanish and he was so lovely he said that because Oscar Oscar wants to do a project on on this stuff and he said Oh, he's gonna let us get interview him and but that that incredible. That's where I my kind of heart lies is that stuff that they're talking about? You know, I think cop control IQ great, but it's nothing compared to what we're hearing about. And the especially Oscar specialist who's who's very current experience, she's, she's in Malaga, here in Spain. She's really watching all of that stuff. And she said to me, by the time Oscar goes to university, he won't even know he's got diabetes, you know, she's really positive about it. So you know, all these fantastic things are happening in the meantime. But I think that's the big prize. That's

Scott Benner 47:42
the way I see the progression. First of all, here's how I i've never owned an electric car in my life. And I know that the next time I get a car, if I can't afford it, I want an electric car. Like I see the progress there, right? Yeah. And there's been a tipping point. And that's it. I think of diabetes the same way like in my mind, things you should be hoping for short term are algorithms that stop you from getting low and help you from spiking too much over, you know, 180 or 200. And then you can intervene to do better than that. You hope that insulin gets quicker and lasts less time, like hopefully, they can keep engineering insulin to come online faster, and not still be around four hours later, if you don't want to be I think you should hope that canula material gets better. And people work on adhesives and stuff like that.

Heather 48:37
equipment, they say there's gonna be a patch at some point that you'll just be able to slap on your arm and it will

Scott Benner 48:43
even imagine that that's true. I'm saying, like, I always am about, like, reach for the things that are attainable keep moving forward. And when when something gets that much better leap with it. And yeah, you know, and then things there.

Heather 48:58
For a long time, though, like, you know, I think that what I believe, sorry, I'm kind of interrupting myself. But the The interesting thing is, when I tell Oscar, everything that's going on, he isn't interested because he's like, well, man, that doesn't help me today. And actually, I understand that whereas I'm like, always, obsessively reading off what's happening in the future and everything. But and the sad thing is, so many people over the last 2030 years have been promised a cure, haven't they? And they've and people tend to say, you know, you don't you shouldn't think about this and it's just gonna drive you crazy and things. But, you know, the stem cell stuff now is such you know, science can go and kind of leaps You know, it can slow down and go fast and slow down and go fast. And I think that science now is in a massive acceleration phase. And I think that's what this is coming from stem cells. So I don't think it's unwise to get excited about this. Like maybe it would have been 20 years ago. You know,

Scott Benner 50:00
right now I listen, I stay in a very hopeful frame of mind. And I think to for a 12 year old up what is a macro view and tell for a 12 year old, like the last 10 days, you can't pull back far enough to see any of it. I just thought that with Dr. Leon was talking about seemed attainable. And with with technology that exists now, which I always think is important. And then it's scaling up to, you know, to being able to get it to people, that becomes the bigger problem. And I have talked about that with a number of, of people over the decades actually about the idea of like, Oh, you know, one time somebody told me if we figure out encapsulation today, it'll take 10 years to get it to market.

Heather 50:42
Like that's why Why does it take so long

Scott Benner 50:45
infrastructure and materials now they say the materials won't be as big of a deal. So that'll shorten it. But I loved what he was saying. Because what he was saying was, look, we could get those beta cells back in there as well that are working, but then your body's just going to kill them again. But we think we can stop your body from wanting to kill them and replace them. Well, hell, okay. Let's do that. You know, like, that seems right to me. And I don't know, I couldn't even tell you like if that came to fruition. And Arden was 30 she maybe she'd say to herself, I don't I'm not gonna do that. I'm okay. Like she might I've talked to people who have type one diabetes, who are adults who are just like, yeah, I mean, I'm okay with who I am. It's interesting, you never know who you're going to be. But for people who are really struggling, but that's how I feel about the algorithms right now, like, here, you're on here. And, you know, I'm talking about my daughter's a one C's and the fives. But imagine somebody who's a one sees, and then nines, who's going to just slap on a CGM and an Omnipod, and they're going to talk to each other, and that agency is going to drop by multiple points. That's a huge deal for them. That's a life changing life saving situation for them. Like, you know, if you've got it down pat, I somebody sent me a graph the other day, it's like stable between 90 and 110. For 24 hours, there was one little bike bump up in the afternoon, and they're like, how do I fix this? And I was like, This graph looks perfect to me. Like, you know, I don't want

Heather 52:06
to become like institutionalized you know, they've become so used to this this life in a way it's a shame, you know, because and the interesting thing is, because what, where's that what you're saying is that it's the people with diabetes themselves that are sometimes happier, just to get on with, and it's us as parents who are always like, desperately trying to think of a solution that we always offer our kids and we're always trying to, like, solve all their problems. And, and that's an I guess, it's such a different perspective than, than when you're going through it yourself, you know, and it's, you know, both has its has its difficulties, like being the parent or, or being the patient. But I just, I think that what I loved about Dr. Leon was that he was, he was talking about each obstacle, and then talking about the solution to that obstacle. So he was like, you know, first of all, the problem was, where are we going to get so many cells stem cells from? Well, now we've solved that, and then the next problem is, you know, and he, and it gives a lot of hope, when you see that they are now now finding the solution to all these big problems, and it seems it seems viable. Yeah.

Scott Benner 53:09
Now 100% I completely agree with you and it's, you know, different for every person, like if you had massive anxiety and type one diabetes, well, then, you know, making diabetes go away is a is a is a big thing for you, it you know, it's everybody's living with different stressors outside of diabetes, too. And, yeah, there's

Heather 53:29
two halves to it, there's the there's all of the technology and the management and all of that stuff that takes you know, so much of your time, but then there is the feelings around it, which is just as big and important and, and how to manage it. And you know, like, these days, we're always we're so aware of our children's mental health, and, gosh, does it like adds a whole extra level to your child's mental health when you think, okay, you know, he's, he's having to deal with all of this, as well as though it's like, it's double worry. And I, you know, I worry just as much about how Oscar feels as how, as his health,

Scott Benner 54:05
right, you also have to worry about things impeding you that you don't even know exists, like, like you said earlier, what if you just would have believed that Dexcom was a bad thing and just gone on your way and never thought about it again. And that and you know, what happens to people who fall into, you know, oh, you have to eat exactly this way or, you know, it's just it becomes it becomes incredible because the place where you can get good information you could also get bad information from and that's it

Heather 54:34
could be so it could be so kind of devastating. I mean, you know, luckily we live in an age where we can do our own research and we can go into social media and online and sometimes that's not a great thing that so many of you know, being being finding the support and the community that I've been able to find as a type one parent online, shows how incredible social media is and You know, it's made me feel part of a community like, you know, I've had some really difficult moments over the last few months with with Oscar where, you know, he had one like really bad low in the middle of the night, and I can't remember other things. And I put them those experiences on your Facebook group. And normally, I would have no one to talk to you about it, you know, I might speak to my mom about it, I might speak to my best friend, but they'd be like, Oh, that's terrible, they don't have a clue. And just being able to, you know, and you put, you put things up, and within half an hour, you've got 50 replies from people who know exactly, exactly what you're going through. And not only that, they're there for you, you know, they're rooting for you, like you're doing great. And it's that is just priceless. And that is social media, at its absolute, most incredible, you know, bringing community communities together like that,

Scott Benner 55:48
that that Facebook group for the podcast is specifically good at that, because it was built from a foundation of people who I think already listened to the podcast. So everybody had a similar idea of like, you know, you can actually do this, and here's a way to do it. And, you know, support is important. And then as the word got out that it was a valuable group, and people started to kind of pour into it, who didn't come through the show, there's enough of a mix there of the people before and the people after to keep acclimating everyone in.

Heather 56:25
Yeah, but you must feel frustrated sometimes. Because I obviously, by definition, all of these people are going to be people who really want to improve and really care, you know, and are willing to kind of commit their time and energy to, to the best outcome, you know, either for themselves or for their kids. But I guess you know, because you're so passionate about it, you must sometimes think, wow, I wish I could reach everyone because you know, there's so many out there who have given up or, you know, have, you know, rebelled or just don't want to, they want to get involved in all of it.

Scott Benner 56:58
It's funny, I thought you were gonna go a different way with that question. But you're right. But you if you're me, then you have to find a way to get past that, because that becomes crippling to Yeah, you know, and and kind of maddening, you the idea that, I mean, if I stop and get if I get solid and quiet, and I think about it inside, I can tell you that this week, I help two people with their kids, aside from here, and you'll never hear about them and that kind of stuff. And their graphs are crazy. And they're pulling their hair out. And then now they're not only took me probably a couple of hours for all of them. But I can't that's what you want to focus on. Yeah, but I can't do that for everybody. And and if I stopped and wondered about how many kids are living like that right now, I really, it would be overwhelming to me. And

Heather 57:50
it's like, you know, you can't save all the rescue dogs you can't know, you know, all these kinds of things. Yeah, exactly. You just can't reach

Scott Benner 57:55
everybody. And yet you have to understand that or it'll just like it fries your mind. Like Jenny and I will talk about it privately sometimes. And she's really passionate about helping people too. And I think the reason why Jenny continues to come on the podcast is because it allows her to reach more people. And

Heather 58:13
absolutely, and the ripple effect, you know, and this is the thing, it's not just the isn't like, for instance, you know, you're talking to me, like I'm an English person living in Spain, like, you know, you in the beginning, you probably wouldn't have thought you'd reach someone like me, but it's just the ripple effect. Again, the power of social media, and it is such an incredibly positive thing. You know, you've you've probably saved people's lives. I mean, it's it's an amazing thing to think about.

Scott Benner 58:36
It's weird for me to talk about it. But I am very happy that the show is is what it is. And I'll tell you the first month I had a blog in 2007. The first piece of correspondence I ever got from somebody was from somebody from England, who said that I read your blog, and it's helping my family. And I didn't even think I had a blog. Like I started a blog so early. I didn't know what a blog was. Right. And so it because blogs didn't have the connotation that they do now. And but so I saw the reach and that was amazing. The thing I worry about most is oversaturation in anything. I saw oversaturation ruin blogging, for people with type one diabetes to some level, there are just so many of them you couldn't keep up and then people just gave up on them in general. And this I and now you know as time moves on, people are like, oh, podcasts, those are a great idea. And some people see them as ways to launch businesses. Some people see them as ways to you know, make money. They don't realize that. I think there's I think the number is I want to say the numbers 1.5 million podcasts in existence. But there's real and it's coming closer to 2 million, but really the truth is only like 800,000 of them. are even active. Yeah. And then the truth of that is like, only 500,000 of them put up at least one episode a month. And then 80% of those only get 145 downloads, lifetime per episode. So,

Heather 1:00:16
like blogs, most, you know, 95% of blogs only do like three posts out there.

Scott Benner 1:00:21
But it's still there, and it gets counted as a blog. So the truth is, is that most podcasts fail. And the reason they fail is because somebody puts it out with this expectation, and oh, my God, like, someone's gonna find this, and it's gonna be great, and I'm gonna love it. And then nobody finds it, and they don't have it. They're like, Well, I'm not going to keep doing this, if nobody's listening to it. And then it just, it just dies off. You see, the same thing happened with like, YouTube channels, everybody thinks they're gonna make a YouTube channel, and then they do and most of them just go away.

Heather 1:00:54
You have done something really unique with this podcast, I felt like I love podcasts, I spent a lot of time in my car. And I listened to a lot of different types of podcasts. And like you said, so many people get it, like, get it wrong, or you just stop listening, or, you know, they don't succeed. But actually, it's, it's quite a kind of simple concept. You just have to have an eye No, this isn't a real word. But it has to have listener listening ability, well, how would you say, you know, just something that is easy, and keeps your attention, it's not very easy to keep someone's attention for like an hour or an hour and a half, you know, people read like newspaper articles, and they only have about three or four YouTube videos only have about six seconds to keep someone's attention. So it is an incredible skill that you've got to keep this this level of, of interaction and interest and everything. And I, I will happily sit and listen to the podcast for a couple of hours. I can't say that about hardly anything, I can barely watch a film all the way through, you know, so. So you, you have really done a great job. And I think also it's because there's a good mixture of things as well, you know, it's like, just people like me are just chatting about normal life. And then there's experts, and then there's, you know, people who are talking about the technology, and that's really good balance, but I it's the best podcast I've ever listened to

Scott Benner 1:02:12
why I appreciate that I try really hard to make it. listenable. And I also get lucky in a couple of places, right? I have a deeper voice. That is that helps.

Heather 1:02:22
But you have a very, like approachable voice, you know, like, it's just, it's just just really pleasant to listen to you. And it's very hard to like, you know, nail that.

Scott Benner 1:02:33
I'm not doing it on purpose. It's just how it works. If you want to thank somebody in being mostly honest about it, I guess. Thank howard stern. Yeah, because I've been listening to Howard Stern since I was in middle school. Yeah, and I've only

Heather 1:02:47
seen like his most shocking moments. That's how I know how it's

Scott Benner 1:02:51
done. But the way I think of him is a person who is incredibly interested in everyone's story, and gives them all equal weight. I've heard him interview with a stripper in the 90s with the same interest that I heard him interview Paul McCartney about being in the Beatles.

Heather 1:03:10
Exactly. And people pick up on that, you know, because like, people don't want to be lectured. So they don't want to be they don't want to sit and listen to someone just give them a whole bunch of instructions. And like these days is all about like authenticity, isn't it, you know, not the perfect things going on on Instagram, and they just want authenticity and they want to be able to relate to someone. And, like who better than someone who's lived and breathed this, you know, since their daughter she was very young wasn't Juilliard, and when she was diagnosed, and who cares about it, but listens to other people and shows you know, how many times have you sat around and tried to have a conversation with someone and they just talk about themselves for an hour and then they leave the conversation it just seems to happen all the time. And it's you know, it's nice,

Scott Benner 1:03:56
you know, I appreciate because it's a tough balance because I'm trying to be entertaining and informative at the same time. And so there are times where I have to pump out what I know about diabetes. And so sometimes I have to interject in the conversation to tell a story about Arden or something happened here so that the people listening will get the idea and sometimes the person telling the story is hitting all the right notes so I can let them go Yeah, I don't know if I

Heather 1:04:22
you know, I love it when you have people on who don't like you or haven't liked you and you and you're just kind of like being a bit self deprecating and not you know, you just hit a really good tone with them because they're fascinated by what I'm trying to win the round but I'm not going to be too obvious about it and you know still like defending yourself and that brilliant those ones.

Scott Benner 1:04:48
That guy that came on who had the bad reaction to when Jenny and I, I guess we kind of we talked about the Medtronic pump and Jenny didn't like it like Jenny would use it not liked it and he Took it so personally, I came and I was sick and he was really harsh to me in in a message. And like I got that message I don't know what most people would do when somebody is really harsh to you in a message but I immediately incident back I was like you should come on the podcast.

Heather 1:05:15
You know that especially like for me like the English sense of humor is really that like the English sense of humor is like self deprecating, and they like, you know, we like to kind of take the piss out of ourselves. And that's why it really appeals to me, because you just don't want to listen to people who take themselves too seriously. At

Scott Benner 1:05:30
the same time. By the way, I thought he has a real perspective here that I think would be interesting. Yeah, yeah,

Heather 1:05:37
you were you were really good with the law. I listened to one recently, the woman who is low carb, that was a recent one, wasn't she, Susan, and you put it Yeah. And you put it really well, you were like, I'm not here to like judge what people's perspectives and the way they're doing things I'm you know, I'm just here to kind of give a platform and I have my way of thinking about things and you have your way and like good for you. I mean, you were very respectful with her, which you could see during the podcast actually started turning her around to like, you know, your way of thinking. So it was really enjoyable to listen to,

Scott Benner 1:06:11
I appreciate that. And I really mean it to I think I hope that comes across, but I genuinely I'm interested in what she thinks. I don't, I don't care how she eats. I just want her to tell people so they can hear it. And if they they might think oh, that's for me. And then great. You know,

Heather 1:06:26
there's gonna be so many different ways of, you know, handling things. And there's no right way or wrong way. And I mean, I'm more your way I just say, you know, eat what you want, and take the insulin to deal with it. But lots of other people will be different. Well,

Scott Benner 1:06:40
I am starting to get more and more comfortable doing this. there's part of me who thinks that the best parts of this podcast are coming still, like I am getting really, really relaxed when I'm doing it.

Heather 1:06:52
Do you think you'll do it for a lot longer? Is it like a long term thing,

Scott Benner 1:06:55
I do not see why it would have to stop. As long as I see people being helped by it, I think it's a value to keep going. My my imagination tells me that a year. So I'm going to get Jenny on the phone and tell her look, I hate to put you through this, but I think we should listen to the pro tip episodes, and then jump on the microphone and, and update or redo them or add to them somehow, absolutely.

Heather 1:07:20
because things are gonna change so much and so fast over the next 510 years that you know is going to be more than ever, people are gonna want me maybe in five years, there'll be a new medium, or it might be that might be a slightly different way that it gets communicated. But people are going to be desperate for this information real easy, you know, easy to listen to really enjoyable way. That's the secret to it.

Scott Benner 1:07:45
Yeah, you have to keep innovating, to like, if you're just talking about just the podcast, you can't I think the biggest mistake that people make is they just do the same old, same old all the time. Like Basically, there are podcasts now that are just basically rehashing what they read on a blog 10 years ago, where you know, like when people when people do that thing, like it's the fourth of July, like here's a recipe for a red, white and blue cake that won't make your blood sugar go high. I'm like, Oh my god, that is literally the last thing I would ever think it's telling you guys, like I wish I couldn't. It's Father's Day, we've got a data on to talk about, like, oh, what was the local news, you know, like, it's just that stuff fascinates me. And, and at the same time, I can I can put out something on a topic that most people don't talk about. And then I can stand back and watch over the next three to four weeks, other podcasts lean into those topics, I'm like, they never would have thought to do that. If they didn't hear me do it. But but that's okay, so then other people will be helped, I can't reach everybody, they'll go reach somebody else. And I'm just gonna keep doing what I'm doing, which is breaking down what I think is living with diabetes in ways that are manageable, and easy and healthy. And I'm going to keep trying to find new ways to talk about it and I'll do that till I can't.

Heather 1:09:01
But you know, what you're doing is you're making people feel a part of something I you know, I think that's what the most important thing to all of this is you're making people feel that they're part of, you know, like a family like we're all in this together. And, and that that was the secret to me, you know, when when when I felt really like I was lost, like I didn't have anyone around me to understand me. And when you feel like you're a part of something, that's when things can really change. I'm glad

Scott Benner 1:09:28
if that's happening for people. I can you know, to not be high minded about it and be philosophical about what it means to make this podcast at a very basic level. What I'm the only thing I'm really doing is I'm saying the things that I think people should hear about about the topics I think they need to hear about, and it's my aesthetic and my, my vibe and if I'm wrong and I'm wrong and if I but I feel like I I must be doing okay, because it's growing the way it is. But like, you know what I mean? Like, if I were to start, I would have started this podcast and nobody listened to it. I would go Okay, well, whatever I was doing didn't, it didn't resonate with people. And that would be the end of it to me.

Heather 1:10:13
So I have a question for you, though. So how does for instance, Oscar Is he really doesn't like that, you know, I've said to him, oh, we should do an Instagram page and we should share you know, information stuff he does not like being kind of identified, you know, he's really private about it all causes much earlier. But how does odd and feel about all of it? Does she mind, you know, because obviously, she doesn't talk on the show. Just cheaper, you know, to be you and she kind of gets on with her own thing. While you I said

Scott Benner 1:10:43
this recently, and you'll probably hear me say this more than once, but I honestly don't think she gives us one way or the other. Like, I

Heather 1:10:50
just, you know, she'll and that's the best way for it to be

Scott Benner 1:10:53
Yeah, she would never, Arden would never in in my estimation, start a Instagram page that highlighted her diabetes. And at the same time, if you're following her on Instagram, I think you can see her pumping her CGM. If it's there, she doesn't do anything to hide it. You know, she leaves my house constantly with pods on her legs, you know, wearing shorts or skirts that are below or shorts or skirts. If you ask her about our CGM, she'll show you the side of her ass. You know, like, she has no trouble. She'll just be like, Look, it's like, this is so

Heather 1:11:27
cool. Yeah. But she went out of her way to tell them not with it.

Scott Benner 1:11:30
Yeah, yeah. Not it does not impact her like that. But she would I don't think in a million years. It's funny, because I think that people doing that on Instagram, as an example, are helping other people with type one diabetes a lot. And having said that, I don't think Arden wants to be involved with anything like that. Because like, she'll send me like, the gift on the pod asked me for a picture. She wouldn't want to be.

Heather 1:11:55
Exactly, yeah. I mean, that's what our school would be like. And that is absolutely fair, right? You know, because I kind of, you know, I have you have these like visions, that one day, he'll go out there, and he'll help others and let you know, and, and do and just be a mentor to younger kids. And he just doesn't want to, like, you know, he's just, I want to be like, my friends and I want to live my life. You know, you just you just get on doing all of your stuff, man. But I, you know, I just don't really want to get involved in all of it. Because whether again, it's the difference between a parent of a type one and being a type one.

Scott Benner 1:12:28
And whether he ever cared about that or not, I don't think matters one way or the other. And he could also end up helping people privately if he wanted to, and nobody would know. But honestly, when you really stop and think about what the podcast is, you don't recognize this. But you know, you get right now you're getting three episodes a week. But I used to talk to people all the time. Like a lot on the phone, like I'd walk people through. The reason I'm good at talking about is because I've talked about it with so many people. I used to do a thing on Fridays, where I would, I'd give my entire day over to talking to people on the phone, and I'd end up talking to like eight or 10 people on a Friday. Wow. And that is like and get them all straight. And then there was Oh, yeah, whether there was one day where I was like, blogging is kind of falling apart. And because people don't read, for some reason. Everybody's just like not done reading. And I thought, I thought I bet you people would love to hear these phone calls. And then wonder how I would do that. And then I went through my it was it and I just thought like, oh, that I had done an interview a number of years before with Katie Couric, and she said I was good at talking to people. So I was like, I could probably make a podcast. And that was it. Really. I just was like, Alright, I'll try this now. And then my first idea was horrible. I sat down and tried to read my most popular blog posts in total. Yeah,

Heather 1:13:49
I follow a podcast. It's like that Is this like woman who, who helps small businesses. And she's just reading her like Google slide presentations, and it's just unbearable, right?

Scott Benner 1:14:01
I did it for 15 minutes. I laughed, erased the file and thought I gotta figure out a different way to do this.

Heather 1:14:08
I never put it on podcast also it can be really samey. So like, you know, always the same format every week. So it's either just one person talking at you, or just one person always interviewing someone else. But in exactly the same way with the same questions at the beginning, same questions at the end. And most of that stuff I give up on in the

Scott Benner 1:14:24
end. I don't like that either. So it's just again, it's my aesthetic, I wouldn't want to hear somebody say, like, if you said to me, if you said to me, hey, there's a new feature on the podcast, I'd stop listening to you. But that's how most people do it. Like we're gonna, like when we're gonna do a new feature about how people eat I was like, and I was like, I would never say it that way. But I just get, you know, I might have like five or six episodes about how people eat. I just get people who are very much into how they eat and I just stay a little more in that lane when I'm talking to them. But even if you listen to those They're not strictly about eating. They're just, I mean, could you? I can't imagine listening to an hour about one idea. Yeah, just

Heather 1:15:08
that. The amazing thing is, though, is that like, you know, with the variety that you talk about, on the podcast, isn't it incredible that you see on the Facebook group and stuff, people whose kids have just been diagnosed like the week before. And they've already found the podcast, and they've already found the Facebook group, and they're just like, absorbing all this incredible amount of information. And that's where I feel most proud, I think, you know, because that first stage, I just look back on it as absolute hell, I mean, it was hell, and just like I was falling down a big coal, and I didn't know how to call my way back up. And if you've got this incredibly supportive, kind community there with you right from day one, what a massive achievement to have to have created that

Scott Benner 1:16:01
I am, I am very proud that of the fact that I think that people don't have as much of a lead time up to finding information as they used to, that people don't have to struggle for years before they figure something out. That's why I like some of the stories I love, or like, I started listening to the podcast in the hospital. And my son's a once he's never, like, stuff like that, that that stuff.

Heather 1:16:22
I haven't listened to all of the episodes. But I think one thing that would be good to hear more of, and you've done a bit of it is more the kind of psychological side, like the feelings and, and the, because I maybe you have done a podcast on this. But I remember being told that when he asked the first got diagnosed, we were basically going through like the stages of grief, you know, and you and you and you have to take it like that, you know, and it was so like that it was like whatever the stages are, you know, anger and acceptance and all of that. And that's something I'd like to hear more about, maybe from the experts, you know about how to kind of manage that and how to, to help you know, your child manage it, because, for instance, I'm very much accepting of it now. But I'd say Oscar is still going through a lot of the kind of acceptance stage, you know, and I don't really know how to help him or how to support him through all of that.

Scott Benner 1:17:16
Yeah, you're looking for, I can't, I can't think of the episode it's been up either at the very end of 2020, with a therapist, and her name is Oh, gosh, I'm so embarrassed.

Heather 1:17:31
So I I forget names all the time. If you can remember

Scott Benner 1:17:35
the funny Her name is Erica, she has been on twice so far, she'll be on again. And I have been thinking about that. But the truth is

Heather 1:17:43
like, like a journey. But for the feeling side is

Scott Benner 1:17:46
how I fit. This is how I feel about Erica, but it took me a long time to find Erica. So if you had actually listened through the entire podcast, and you were focused on this idea, you'd be able to say, Oh, he's tried to do this two or three times and couldn't find the right person. And I finally found Erica, and she's terrific. So

Heather 1:18:04
even if I can kind of pro tips type thing, you know, like, what to do if in having burnout, what to do? You know, because I like I said, I do think that the psychological side is just as profound and important as the just the physical management of all of

Scott Benner 1:18:19
it. Well, yeah, you're right. And I am working towards that. At the same time, you have to blend things together a little bit. Because if you want some secret backroom stuff, if you just put out an episode about one specific thing, you run the risk of people looking at it and going well, I don't have burnout. So I won't listen to that. Yeah, so then they don't get the information in there that they probably need or will need at some point in the future. And there are some topics and there are some topics that I feel so strongly about, that I put them up knowing not as many people are going to listen to them as if I would have put something else up at that same time. And very recently, just at the beginning of this week, I did an after dark with somebody who had been sexually assaulted and had PS PTSD from it. And when I put that up, I know there are going to be a certain segment of people who are going to be like, I do not want to hear about somebody's sexual assault.

Heather 1:19:06
And then just don't listen to it as long as you make it clear you know, that's what it's gonna be about 100%

Scott Benner 1:19:11
but what I'm saying is, is if it's a diabetes related thing that I know you need to know but you don't know you need to know I have to find a way to I got to find a way to like mix the peaches in with the green beans. You know what I mean? Like when you're feeding the baby. Hear this, let me just make this just palatable enough that you'll get the broccoli and mango puree. Yeah, so I sometimes there are some topics I use that way because people will skip them if they don't think they need them. That's why when you hear me talk about the pro tip episodes, I'm like, listen to them all the way through, don't just skip the one about MDI because you're on a pump. Like you need that that information to but how do you really talk people into believing that And just like that, I can tell you that of all the pro tip episodes the one about MDI has fewer downloads than the rest of them.

Heather 1:19:59
So what So what's the episode as the most downloads?

Scott Benner 1:20:03
The most? I got to go after this too. By the way, I'm getting up on my time here. Let me see if I can find out. The one that's been downloaded them most. I'm going to look for you. But I am not going to tell you which one it was to say no. Or how many? Oh, yes. Because I don't want other people podcast to cry. What do you think of that?

Heather 1:20:29
competition? Yeah, I don't want it to be Dexcom guys not gonna be happy when it's the Omnipod guy or it

Scott Benner 1:20:35
is the the launch episode of the pro tip series.

Heather 1:20:40
Number two, really, because so many people have gone back and listened to the first one, probably number

Scott Benner 1:20:44

And then, actually the top five episodes six episodes 12345. The top five or pro tips, newly diagnosed or starting over setting Basal insulin all about insulin insulin pumping, and mastering your CGM, the sixth most popular one is about looping. And then the next one to more. Wow, then the next. Your next four or five are our management stuff. Now here's something super interesting. Then the next ones are after dark episodes. That because they've become more and more interesting as things and then it just turns into conversations. But the interesting thing about you talked so much recently about how much you like the Facebook group. The Facebook group is built on people who are super management focused, that's who's talking. And then I think there are people who lurk. But there are also people there are far more people listening to the podcast, who don't care as much about the management stuff. So if I were to go, like if I could somehow pull everybody that's listening right now and said, you know, would you rather hear an episode about management or a conversation with somebody overwhelmingly, taking an account all the people listening, a conversation just with a person would be what they'd want. But if you go in that Facebook page, because I did it to amuse myself the other day, I said, hey, you're going to get a new episode tonight? Do you want a management episode or a conversation episode? like four to one they wanted management?

Heather 1:22:25
That's such good research for you, isn't it? To be able to go in and ask that kind of thing?

Scott Benner 1:22:30
Yeah, but those people all think that their desires are the overwhelming desire of the people listening but it's not true. Mostly management's not the first thing people want. But the people who want it really really want it.

Heather 1:22:44
And what's happened to Jenny is she like now massively, you know, over subscribed popularity can't get an appointment with her because she's so fantastic.

Scott Benner 1:22:53
It's getting hard to get an appointment with me. Yes. Yeah, that's cool. Yeah, and but we've good reason to, because again, she could have been a different person, it wouldn't have come off the same way as Jenny who had no previous like, like Jenny didn't talk in front of people like this ever in her life, but she'd never been on podcasts before. I just talked to her and I was like, man, I not only agree with this person, but I love how she talks about it I love her like she's got an aesthetic that I really subscribe to she's nothing like me. You wouldn't think but if you listen to her and I talked about diabetes we sound like the same person.

Heather 1:23:27
Yeah, it's because she's that but that's what was the best way isn't it people who are not like really self like trying too hard and are just natural that's what I mean like people just want authenticity you know, they don't want anyone who's like trying too hard or or trying to be something they're not

Scott Benner 1:23:43
Yeah, if I sent if some ice somebody say something nice about Jenny and I send it to her. I can feel her blushing through a text message sweet Yeah, I can imagine that she's really she's just very delightful. So yeah, she's lovely. She's

Heather 1:23:55
She's a good kind of role model because obviously she's going through it herself as well. And it seems that so many of the of the people who are doing the kind of diabetes educators and stuff are off and the nurses you know, they often diabetics themselves, which just makes it so much more relatable.

Scott Benner 1:24:09
Well, you know, what Jenny has that I really appreciate is that she does not abide Bolus for managing diabetes, but she comes off like she would like she's, she's she's so sweet that you don't even hear her basically telling you shut up and Pre-Bolus Don't tell me you can't do that. You know what I mean? Like don't sit around and mismanage your Basal insulin for six weeks, fix it, like she's very direct. But in a way that is that says in a lovely way it doesn't feel like that. And it's funny because one of my favorite guests that I don't even know if people know is Chris Freeman. He's a, like a former Olympic cross country skier. But he talks so specifically about diabetes, he'll be like Americans want to pill they don't want help. And they don't want they don't want to work at anything and like he's been talking like that for years. And I always love talking to him because I really appreciate that perspective. But it comes off graph from him. And Jenny's basically telling you

Heather 1:25:03
that you can get off. The most random thing can be off putting

Scott Benner 1:25:08
Christmas I love. I've loved Chris, every time he's been on the show, I think I've had him on three times, and I don't ever have people back. And

Heather 1:25:15
one guy who was I think it was one of your medical expert guys who, I can't remember what it was. He kept saying the same word over and over again. That was really annoying. trying to work out which one it is. But yeah, the most just random little detail can just make you switch off a little bit.

Scott Benner 1:25:30
Yep. There's a person who one time spoke so slowly that I spent a day editing the gaps out of his conversation. Yeah, because I thought if I left it in like that people would turn off in five seconds. He just couldn't get it right. Oh, it was terrible. He just said it's

Heather 1:25:46
nice the dynamic between you and Jamie as well. It's really cute. He just he just got on really well. And so it's just nice to be involved in the conversation.

Scott Benner 1:25:53
Now I never thought I'd make like a real friend like do the podcast but I have. So yeah, so sweet. Have you ever met you have met haven't one time we've met one time in person.

Heather 1:26:02
I love it as well, when you have kids on because I try. I try and get Oscar to listen to the podcast. But again, he's a bit like that's your thing, Mom, you know, you get all that you learn the stuff. And then and then tell me about it kind of thing. And it's so brave when you get these little kids who come on and they're so earnest. And you know, and they're really articulate, and they want to talk about everything. And I think wow, that's impressive.

Scott Benner 1:26:24
Is there another example of those are more public service II things? Not that I don't really love them because I do. But they're listened to about 10 or 15%. Less than other episodes. Some people don't want to hear kids talk. But I think they're fans. I think they're I think that's a mistake for those people. It's an insight whether you're an adult with type one,

Heather 1:26:44
such an insight or a parent is so valuable. Yeah,

Scott Benner 1:26:47
I have one coming out soon with three, three teenage girls who live together on an island. And they met at school and they all have type one. I think if I'm not mistaken 1315 and 17 they're such good friends. And what kind of Island you know, make me remember where

Heather 1:27:12
they live? What like a random, like remote island somewhere

Scott Benner 1:27:17
down by Cuba somewhere. Hold on a second. Where do they live? Oh my god. How do I not remember this is such and they all decided to go live together? No, they lived there. And they met each other. Maybe it's Cayman Island? Yeah, it might be in the Cayman Islands.

Heather 1:27:35
One place Oh, cool. That's the place. It's

Scott Benner 1:27:37
a tax shelter. This is a great Grand Cayman. They live in Grand Cayman. Okay. So they all go to school together and they met each other and they support each other. And they contacted me like little like this, like 15 year old girl sent me an email and she's like, I want to come on the podcast with my two friends. Brave. Yeah. And it was I must have talked to them for like, an hour and a half or more. I was having such a good time talking to them. They

Heather 1:28:04
were they like all you know, interrupting each other and giggling and

Scott Benner 1:28:07
they were really great. And one of the girls was from somewhere. They all came from somewhere else like ones from America, ones from Poland maybe. And ones from I can't think of where else and it is the one girl I said get your data gunrunner and she's like, I don't think so. And I said, I said honestly, if he was what do you think he would tell you? What do you think he'd pretend to be a spell? Obviously the stuff you get away with she's like, She's like, I don't know. And I was like, cuz I think it's possibly a gunrunner What do you think of that? And you know, have you

Heather 1:28:40
ever had anyone who's just gotten really pissed off with you on a podcast and then just refuse to carry on?

Scott Benner 1:28:44
Nobody's ever refused to carry on I've had one person when it was over. Just say I did not enjoy that. please delete it. And I got Oh, no. And that person, in fairness to me, had a big reveal that was totally much different than the first half an hour. And it just got very it got awkward and it was the big reveal. I can't even tell you.

Heather 1:29:06
Oh no, tell me afterwards.

Scott Benner 1:29:09
I'll tell you what, let's say goodbye. And I'll tell you as soon as I push that up, okay, okay. I really had her seriously thank you for doing this. I did really good time chatting with you. And I don't know what the hell we talked about. So that's, that's the best guy man. Yeah, I think so. Alright, hold on one second.

Hey, here's thanks to Heather for coming on the show. I'd also like to thank the Contour Next One blood glucose meter, go to Contour Next one.com forward slash juicebox to learn more about the blood glucose meter that my daughter uses. And speaking of things that my family has done, trial net, trial net.org forward slash juicebox absolutely free T one D Risk Screening. Do it right from your home if you like trial, net.org forward slash juicebox. When they ask how you found out about trial net, tell them the Juicebox Podcast Thanks so much for listening. I'll be back soon with another episode of the Juicebox Podcast.

#562 Katie and Scott Talk about Type 1

Katie is the mother of a child with type 1 diabetes.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to Episode 562 of the Juicebox Podcast.

I'm certain that you've heard me say that I talked to people all the time outside of the podcast about type one diabetes. Well, I can't anymore. This podcast has become so popular. I just don't have the time. But I didn't want to stop having the conversations. So now if somebody asks me, I just say, Okay, can we record it? And Katie is the first person to say yes, Katie was willing to have a vulnerable conversation, where she did not know what she was talking about, and was asking for help. And so we had this conversation together, and I recorded it. And now it's a podcast episode. definitely important to remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. or becoming bold with insulin. That's very important because Katie, and my conversation is, is pretty full of me. You know, telling Katie what I think so just remember, I'm not a doctor. And this is not advice. It's just the Juicebox Podcast.

This episode of The Juicebox Podcast is sponsored by Omni pod, makers of the Omni pod dash and the Omni pod promise, which I'll tell you about later in the show. But for now, find out if you're eligible for a free 30 day trial the Omni pod dash at Omni pod.com forward slash juice box. Today's program is also sponsored by Dexcom. makers, the Dexcom g six continuous glucose monitor, you'll learn more about that@dexcom.com forward slash juice box. Get started today. I almost scared myself with my own deep voice just as like today's episode. I can't even do it again. I just haven't by mistake. Hold on. I'll try one time for you. I'm ready, rock calm. Today's episode of the Juicebox Podcast. Whoo, you feel that room rattled me right to my core. You are the inaugural one of these. In all of the years that I've been doing this, and one could argue that these phone calls lead to the podcast in some way. I've never recorded one of these. So thank you. And hello.

Katie 2:41
Well, hello. Yeah, well, I have like, a really old, like came with my phone. headset thing. You sound great. And so if you can't hear me, well, it's probably that it's kind of old. Like

Scott Benner 2:55
don't talk about it cuz you look you sound terrific. And I I was a little low on my end, I had to turn it up a little. So that's the only reason I couldn't hear you for a second. So okay, do we want to keep your name out of this? Or do you not mind using your first name or what's up?

Katie 3:10
I don't care. Okay. I don't think there's many people that will know me. So are you

Scott Benner 3:15
afraid you're gonna say, I don't want you to feel empty? Because this is gonna be like a real loose conversation about management where I ask a lot of questions. You answer. I talk for a while. I ask you if you have questions, like it's gonna go back and forth like that. It might take like, 45 minutes. Is that okay?

Katie 3:32
Yeah, no, I, I'm fine with that. I you know, I've been listening to your podcast for a little bit. And I, you know, I've been struggling. And my husband's was juggling with gauges, care gauges, my son. And, you know, your podcast really, honestly changed the game for us. And it's so sad to say, kind of, you know, a podcast changed for us more than our doctors said, you know, so I'm glad to help. I'm cool. With all that, you know, alright.

Scott Benner 4:08
Okay. So just because of the guest, because we're recording it. Just Introduce yourself very quickly and tell me a little bit about your son.

Katie 4:17
So my name is Katie. And gage is my three year old autistic son that also was diagnosed with type one. He was just diagnosed like six months ago. So we're kind of new to everything. Okay.

Scott Benner 4:35
All right. So if I have to stop myself, because I get questions right away, like stuff starts popping into my head to ask you and that's not what we're doing today. This is not a regular episode of the podcast. He started saying that I was like, oh, question here about this and then this, but no, so if if this was a regular phone call if you were so I guess first I should say this. There are three main types of people who reached out to me privately, I'm gonna say they're the type a people who have figured it almost completely out but still get like a weird rise somewhere and they want it to be perfect. And they can't figure out how to make it perfect. And they think I can help them. That one's always an interesting conversation because not that it's hard to take seriously, but when someone's like, Hey, I have a six, one a one C, but I get a little bit of a rise at lunchtime. You know, they're like, oh, you're doing great, like, No, I'm not. So there's that person type a really wants things to be perfect. There is the person who is generally lost, and just doesn't know what to do, and has gotten so desperate that they're willing to reach out to a stranger on the phone. And then there's the third person who I think of as having common sense, seeing that what's going on, doesn't make sense. They feel like they know what they want to do. But it's so flies in the face of what their doctor told them that they're frozen, and they can't act. Do you fall in any of those three categories?

Katie 6:18
Um, I would say probably the last one. Okay. The, you know, definitely not the first. But more like, the second and the last for sure.

Scott Benner 6:31
I have to tell you, no disrespect, but I don't, you wouldn't want to be in the first group. Those people seem to know what I'm talking.

Katie 6:40
There's no, that kind of makes me angry. It's funny, like, shut up. You got to figure it out.

Scott Benner 6:45
But, you know, it's sort of like, you know, once you furnished your house, but you still have one old table in the corner. You could live with it. But you're like, I don't want to fix that up too. So yeah, Everyone, listen, everyone's in a different spot. I would hope that you will be some someday at a point where you actually have that thought, like, oh is a once he's five, nine, but I wonder if I could make it five five. by that. I mean, I don't see why you couldn't. Okay, so they're gonna call would start. I feel like I'm narrating the call, which I'm gonna have to stop doing and just just talk with you. But you would jump on the phone, you'd be like, Hey, I'm Katie. And I'd say hey, Katie, how are you? I hope you don't mind if I clean a toilet or pick up leaves in my backyard while we do this? And you'd say, No, because I mean, what are you gonna say? And then I go, listen, Katie, it's really important for you to know that I'm not a doctor. That nothing we're going to talk about on this call is advice. If I misspeak, or you misunderstand me, and that kid of yours ends up dead, it's not my fault. I'm gonna need you. I'm gonna, I'm gonna need you to respond audibly that you understand. And

Katie 7:50
I totally understand. And all I'm

Scott Benner 7:53
really going to talk about with you is, what I do, and how I see it. Being applicable to what's happening to you, that really is like all this is going to be but I think it's gonna be really helpful for you. So then I started asking questions, and I say, How old? How long? What? insulin? What tech? So he's four. Is that right?

Katie 8:15
He's three three. Excuse

Scott Benner 8:16
me. And look at me already.

Katie 8:21
He's almost four. Really? born July one July.

Scott Benner 8:23
How much does he weigh?

Katie 8:28
I don't know. I would say probably like 40 pounds. It's pretty solid

Scott Benner 8:33
pounds. almost four years old. You say at all? He has autism? Yes. I don't know why that's important to this, but I'm already down just in case I forget. And he's had diabetes for about six months. Yep. Which insulin do you use?

Katie 8:47
So he is he does the shots. The pens so he's on human blog. Okay. During the day, like for his meals and stuff, and then he gets Basal Gar at night. So which is likely Santos Yep.

Scott Benner 9:06
And you have a CGM?

Katie 9:09
Yes, he has the Dexcom g six.

Scott Benner 9:11
Okay. Can you take your phone for me pull out his Dexcom turn it landscape. Go to 24 hours? Take a screenshot of it and text it to me.

Katie 9:21
Cool. You're not gonna be very

Scott Benner 9:24
happy. No, no, no, no, you misunderstand. Don't feel judged. I need to see it. So I know how we can fix it. Don't Don't worry about what it looks like. Now think about what it's going to look like. My next question would be is somebody home with him all the time, or is he in daycare or with another person?

Katie 9:41
So he was on he was in school, a special education school. And he had to leave because they don't have a nurse or anyone felt comfortable giving him insulin. So which is complete bs but Anyway, that's a whole nother story. So he, no, he's no longer in school or daycare. My husband actually left his job to stay home with them.

Scott Benner 10:10
Tell him that worked out well for me. I don't know. How will

Katie 10:13
I know. I was like I told him I was like you'd love this podcast and it's a stay at home Dad. Yes. And?

Scott Benner 10:20
Yeah, really? That's if you're looking for the biggest high side of being a stay at home dad. It's not having to shave every day. And I didn't. I'm sorry. Do you know how to text that to me? You maybe don't right?

Katie 10:33
Um, so is it like you're like a cell phone number? I'll

Scott Benner 10:36
give it to you. Just let me know when you're ready for it.

Katie 10:39
I'm ready.

Scott Benner 10:40
690 and that's totally getting bleeped out. And so zero. Yes.

Katie 10:52
All right. Let's see if that works.

Scott Benner 10:54
It did I have it. Okay. Except you didn't turn it landscape.

Katie 11:00
Oh, whoops. I have very good. Sorry,

Scott Benner 11:03
Katie. This phone calls over. You break one rule and could you do it again?

Katie 11:10
Alright, let's try again.

Scott Benner 11:13
You're in luck. This is going to be easy.

Katie 11:16
Oh, well, that makes me feel better. All right. I have to turn rotate back on on my phone because I always turn it off.

Scott Benner 11:29
Right now the people listening which are people from the future are like, come on, Katie.

Katie 11:35
Seriously, like how old are you?

Scott Benner 11:38
I got things to do. But they're getting this as a bonus episode. So you people stop complaining. Okay.

Katie 11:44
Can you give me a break here? with Katie.

Scott Benner 11:47
I don't know if you heard she had a three year old with autism and type one diabetes. You're lucky she's still in the house. I mean, honestly, you ever go to the grocery store and just think maybe I'll just keep driving.

Katie 12:00
Just gonna stay here for an extra hour.

Scott Benner 12:02
I talked to a woman yesterday who had four children. And while I was I was having what the conversation you and I are about to have with her. And her kids were screaming nonstop in the background. And I said, I said to her Do you ever think you just maybe are going to go and she is it occurs to me so. Alright, here we are. I got it. Thank you. Right. Now I got the graph. And normally I don't have to explain the graph while I'm talking because you're looking at it too. But let me just say out loud for people who are listening. It looks like you have your high alarm set at 250 your low alarm set at 70 that makes sense.

Katie 12:41
Yeah, probably. It sounds bad but he goes high so much that we're like, you know, we might as well set it a little higher because we're gonna Yeah, I mean we get alarms on it, we're gonna

Scott Benner 12:57
fix that we're gonna make it so that that doesn't happen. So I am looking at a graph that runs from about 10am to 10am right about there. Back at 10am the other the day before I see blood sugar's around 250 that came down to about 220 stayed stable for a couple of hours at 220 then it looks like there's food that pops it back to 250 Is that right? That makes sense to you. That first spike up that happens on the left of that graph does that look like a meal Can you still there Katie Oh what happened oh whoa oh wait she's muted That's hilarious. Oh, what happened Katie? Yeah, what happened?

Katie 13:58
Well, my phone I don't know what happened my phone just shut off and now it's like turning on and off and on and on. But you can hear me okay. No. phones. I had to use my husband's phone okay. And they're not headphones aren't working on it.

Scott Benner 14:15
Okay, yeah, go ahead just kind of try to keep it still you just have it up to your head. Yeah, yeah, just keep it from rubbing your face or your hairbrush and by the microphone we'll be okay. Okay, so I went through a ton of ideas what may have happened you struck by lightning in your home. I thought possibly you left your family and I use that perhaps you know, sometimes frozen urine gets dropped from airplanes and goes through people's homes. When that have been crazy. I thought maybe a car crash to your front window.

Katie 14:48
Go with all of that.

Scott Benner 14:49
Then when I texted you didn't answer. I was like, Huh, this is curious. I think our phone just thought

Katie 14:55
yeah, I don't know. It's still turning on and off. So I don't know

Scott Benner 15:00
If like, like it worked yesterday, right? What do you use it for yesterday? Give it a mean. Yeah, no, it's it has done it done that before. But well, let's let that go now. Okay. So where are we? Where was I was looking at the graph, which can you see? Or not anymore?

Katie 15:18
Hold on? Let me see. Are you still there? Of course. Oh my god, I feel so old right now. How old are you 31. Okay, see, I can still see his graph for you. I'm on my husband's phone, though. So if you need something else, that'll be from a different number.

Scott Benner 15:37
Don't worry about it, I'm just, I just want you to, I want to talk through the graph, and you'd be able to see it. That's all to my mind. So I was starting to describe it when you disappeared. What I'm seeing is about 10am to 10am 24 hours. At the very beginning of the graph, I have about a 250 blood sugar coming down, and then it levels off around 220 ish, and it stays there for an hour or so. And then it pops back up again, is that quick pop up some sort of food I'm imagining, probably, okay, and then a Bolus, which did drive the blood sugar down over the next hour or so probably like 130. But then it pops again, wants to go back up, then it drops back down, then it goes back up to 180. And now we're at 4pm is 180. It looks like somebody puts an insulin, he drops down, but then he spikes. Then he drops harshly to 65 ish. It looks like somebody intervenes with some fast acting sugar, which drives or food and drives them super up almost the 300 over the next seven o'clock, eight o'clock, nine o'clock, 10 o'clock time. It looks like it gets it drops down again, it hits 200, around 1011 o'clock. And say stoop stays reasonably stable between 180 and 220. From 10pm until seven or so when I'm assuming he ate, right. Okay, and then comes back up. And now in most recently around 930 took a sharp turn, which looks like food that wasn't covered well with insulin. So. Okay, so there's a lot of stability in your graph. And by that, I mean there are long stretches of time, where the blood sugar's not vacillating up and down wildly. I take that as good news. And you so you don't know how to Bolus meals and your basil is probably a little weak. And we're going to figure out how to tell you how to do that right now. So what is how much basil is he using that basil garden? And when do you inject it?

Katie 17:47
So we don't give it to him till nighttime. Okay, so like right before bed, like nine, nine anywhere between nine and 10 and six units of that

Scott Benner 18:01
basil guy around nine or 10pm? What do you think his correction ratio is? And what's his meal ratio?

Katie 18:09
Correct. is

Scott Benner 18:14
Katie, I lost you. Katie, I lost you. Oh, can you not hear me? I got you two right now. correction is what?

Katie 18:22
I'm 115 115

Scott Benner 18:25
for a unit and meal ratio.

Katie 18:28
So breakfast is 18. Lunch and dinner are 14.

Scott Benner 18:35
All right. This is mostly been set up by your doctor I imagine.

Katie 18:39
Yeah, I mean, the whole we don't really deviate at all from what they say which I know we could but that's okay.

Scott Benner 18:47
I just wanted to make sure it wasn't something you had done. Hold on a second. Seven. You said seven units. Excuse me. How many units are past the guard night? Six, six. Okay. six divided by 24 is point two five an hour. I'm gonna guess he could handle more than that. So, point four times 24 is 9.6. That would be point four. If we did point three five times 24 we get eight or eight. Okay. All right. Now I have to ask you some questions. The lows that I see and or I know they're not all they're not actually low. Actually. Let's go through that really quickly. What do you consider low?

Hey, this is a good place to drop in the ads because we're going to really get rolling after this and I don't want to break up the flow Dexcom g six continuous glucose monitor. Yeah. insulin. Are you using it for your diabetes? Yeah, probably want to Dexcom dexcom.com forward slash juicebox. See your blood sugar in real time right there on your cell phone if you like or on the Dexcom receiver, I'm picking my phone up right now. My daughter is at school, her blood sugar is 115 and extremely stable. Although if I'm being honest, it started to rise up about 35 minutes ago, from where it was sitting at 85. Yes, it doesn't look like food though. Although it could be. But Arden would have had to make a really rock solid Bolus for this to be a food rise. You know what, just for you guys, give me a second. I'm gonna text there. I'll be right back. through the magic of editing I am right back. It turns out Arden did make a Bolus for food. How crazy is this? I can see right on the CGM. I'm looking she's got this nice stability. 910 11 o'clock in the mid 80s. Everything looks good. And then I see a bit of a rise. But it's not drastic, you know. So it either looks to me like Arden's insulin needs changed all the sudden, or she's impacted her blood sugar somehow with carbs. And I just texted her and turns out she did. As a matter of fact, Arden Bolus for 65 grams of carbs, about 11am Oh, look at that. Isn't that cool? 10:55am art and boluses. And I see the rise beginning in the in a few minutes after that. The rise is controlled over the next 20 minutes and is leveling off now in the 115 range. So I'm thinking Arden did a really good job bolusing for whatever she had. But I can see that on my phone. So imagine what else I could see an unexpected drop. I don't expect that rise. Dexcom doesn't just show you that Arden's blood sugar's 115. It shows me that she's stable. If she was rising or falling, it would show me that too. And tell me at what rate that was happening. She could also be sharing this information with up to 10 followers. Right now it's just my wife and I looking at it but could be her school nurse or a friend or a loved one of any kind. dexcom.com forward slash juicebox see the speed and direction of your blood sugar in real time. Let's talk about Omni pod for a moment. Before we get back to Katy. You may be eligible for a free 30 day trial of the Omni pod dash. Go to Omni pod.com forward slash juice box to find out. That's it. A free 30 day trial. Are you kidding me? What do you still I can't believe you're still listening. You should be on the pod.com forward slash juicebox finding out if you're eligible right now. If you are, give it a shot. And if you're not, you could always get them to send you a free, no obligation demo pod just to try on and see what you think. That way you can at least get a feel for what it's like to wear the Omni pod. A lot of options. Head over to alibaba.com forward slash juicebox to find out about them. Now, maybe you're thinking right now Yes, God, I would but I'm waiting for the next big thing from Omni pod. I'm hearing it's coming soon. I don't want to get this thing and get stuck with it. Well, you won't. Because with the Omni pod promise you can upgrade to Omni pods latest technologies for no additional cost as soon as they are available to you and covered by insurance terms and conditions apply. But you'll get those details at my link. You're not locked into anything. There's no reason to wait. Get started today on the pod.com forward slash juice box dexcom.com forward slash juice box links in the show notes links to Juicebox Podcast comm when you use my links, you're supporting the show. Alright, let's get back to Katie. Thanks for listening to this.

Katie 23:55
m I'm so I get worried when it's at like 65 and it's like an arrow down.

Scott Benner 24:02
Cool. Katie, you're my kind of girl. Alright, so lowest 65 just for our conversation. What are you calling hi in your head to 50? Because that's where you set the alarm?

Katie 24:13
No, I mean, I know that Hi. I mean Hi. To me. It's like 180 and above, but

Scott Benner 24:22
that's great. I just want to make sure we're using the same definitions of things while we're talking. So you don't Pre-Bolus meals right?

Katie 24:31
We just started Pre-Bolus Singh. Um, but I don't think that we're timing it right.

Scott Benner 24:40
How long out are you doing that? It looks like I

Katie 24:44
don't know. Maybe it looks maybe like maybe 10 minutes.

Scott Benner 24:48
It looks like five to 10 minutes. So yeah, yeah, that's not Pre-Bolus thing. Enough, that would be like if if you started with a condom and then took it off halfway through and I practice safe sex, he kind of. So um, look at me feeling pressure to be funny because I know it's being recorded. That's interesting. That's a look into my brain. Okay, so here's what we need to do. We need to get your basil right, we need to teach you how to Pre-Bolus better. And we have to talk about the glycemic load and glycemic index the foods he's eating, so what kinds of food is he eating?

Katie 25:24
So he's eating really horrible food.

Scott Benner 25:27
That's a girl, be honest, let's

Katie 25:28
go. I'm just gonna be honest. I'm not going to beat around the bush he he has that the typical autistic diet where he pretty much eats the same exact things every day, which is kind of good in our case, but it's all high carb, like processed crap.

Scott Benner 25:49
Give me some some selections.

Katie 25:53
So like chicken nuggets. We try to get him like we buy him the organic veggie breaded ones that Walmart sells. So there, we pretend that they're healthy. And he eats those premade peanut butter and jelly sandwiches. So I can't work they're called uncrustables. So those are two huge things for him. So that's either lunch or dinner everyday for him with like snack so like a fruit strip. He eats those gogo squeezes. Trying to think like, you know, like Cheez Its anything chippy like he likes so basically carbs.

Scott Benner 26:45
tell you after hearing that list of foods, you're doing really well. Okay, don't I mean, you did not list one thing that is easy to Bolus for.

Katie 26:59
No and and that's the thing is he like he really likes oatmeal. But we kind of had to

Scott Benner 27:06
pretend it doesn't exist anymore. Yeah, cuz

Katie 27:09
we get we give them oatmeal, and he would be like, 300 all day.

Scott Benner 27:12
If brandy is listening, the person I spoke to yesterday, she told her child that because of COVID that you can't get Fruity Pebbles right now. I thought that was brilliant.

Unknown Speaker 27:22
That's a good idea.

Scott Benner 27:25
Anyway, okay. I don't normally have to ask this question. But how well does he understand you? How well are you comfortable that he's going to eat when you give him food, stuff like that.

Katie 27:35
So he's not, he's pretty much completely nonverbal, like communication wise, but he, he pretty much eats everything that we give him. And that's why like, in the beginning of this whole thing, they were like, do not Pre-Bolus you know, because he's so young, you don't know if he's going to eat. But we pretty much know he's going to eat everything. So there's been a couple times where he didn't, and he plummeted, and we had to give him juice. But other than that, I mean, he, he doesn't know that he has to eat everything. Or he's, you know, his sugar is going to

Scott Benner 28:16
drink something if there's an emergency or something like that,

Katie 28:19
right? So if we did Pre-Bolus for something, and he's not eating it, I would just give him something I know he's going to eat, like a fruit strip or something else.

Scott Benner 28:30
Right? Well, so there's, there's a couple of different things here. And I just want to walk you through some ideas before I tell you what I'm thinking. So, you know, to start over again, if the basil is not right, even a well timed Bolus isn't going to work, even if it's right. So say for say somehow, you know, Jesus comes to you and says, Hey, this one unit per 18 carbs is the exact right meal Bolus for gauge. Even if that's true, like, just undeniably true. If your basil is wrong, it won't matter. So imagine that, you know, you're, you're having a meal here and it's 40 carbs and gage is probably getting about two and a half units of insulin for that, right. And his basil is six units a day, but maybe it should really be eight units a day. And if that's the case, some of the Bolus that you're putting in when you're injecting for meals is really just making up for the job of the basil insulin. There's not enough there. So you know, if he needed 10 guys to I don't know, cut your lawn and only five of them showed up. When two more show up. You're still not going to get the job done the way you're supposed to be a hell of a lawn, wouldn't it? But you know, the point is, is that you if you don't have enough basil, then your bonuses are going towards basil job and then they're not able to go towards their job of handling the meals. Additionally, you're by not Pre-Bolus thing, you're letting the food get way out ahead of the, of the of the, the insulin, so there's just no way for the insulin to catch up. So again, if you don't have enough basil, and you're putting in your insulin in a way where it doesn't have a chance, even if you use the right amount of insulin, you're bolusing for the food not that are you correcting when you're boasting for meals? So if he's 220, before meal, are you correcting those who 20 and bolusing? The food? Yeah, okay, and that's still not working. Alright, good. And I say good, because then it makes me more comfortable talking about the Basal insulin.

Katie 30:44
So the Basal insulin that we give him at night, the Lantus or the Basal Gar, um, that is supposed to be holding him over for 24 hours, not just at night.

Scott Benner 30:58
Yes. So okay, your Basal insulin has one job. When you're on MDI, you shoot it in, it goes in, it kind of crystallizes under the skin, and slowly melts away. And its entire job is to over 24 hours until you put it in again, to hold your blood sugar stable at a number. So meaning away from food, and away from Bolus insulin, you know, meal insulin. Your blood sugar should be super stable at a number, and if you're using enough insulin, that number can be as low as you want it to be. So see how super stable he is overnight? Yeah, I mean, if he had more basil, insulin, he'd be super stable, lower. That's it.

Katie 31:53
So when he if he gets on, because we're trying to get him on the Omnipod if he gets on that, I think I've heard you say before that it kind of it like does a whole day not just that, like once

Scott Benner 32:06
what Okay, let's say that let's say we've Can you shoot half units of basil Gar are just full units.

Katie 32:12
It's a it's a half, you can do a half. Okay, good. So let's say no, no, the basil Gar is one unit at a

Scott Benner 32:20
time when you're done. So let's say we figure out that his basil hours eight units a day instead of sex. And when we're done here, I'm going to tell you to try seven like how long I'm going to tell you to try seven tonight and then look at your graph again and decide if it could be more right and I don't know if it's going to be or not but with such a carb heavy diet that's so consistent and I'm imagining Am I right is he active or not particularly active during the day

Katie 32:49
he's pretty active I mean, it's kind of hard right now with it being cold Yeah, um, but yeah, he's he's always moving around, he doesn't sit down for much.

Scott Benner 32:58
So we'll just make up that we come up with seven being the right amount, okay. And then you get an on the pod So what we'll do is we'll take the seven we'll divide it by 20 for the hours in the day and you'll start you're on the pot at point three units an hour of basil. So every hour the pod will give you point three units of basil and it will spread it out over the hour. So it just kind of like spurts little bits throughout the hour, just constantly putting it in until you get point three every hour and it just keeps going 24 hours a day. And the great part about that is is that you can increase it if you're having a particularly stuck day or you can decrease it if you're having a lower day or you're going to like say he's more active so you're going to a trampoline park or something like that. You might then say well I really don't he's not gonna be point three today today is going to be like point one. Like imagine you could reach inside of his body right now and turn up the bathtub or turn it down. You're actually going to be able to do that with a pump. But for now I'm what I'm guessing is at 40 pounds, he could probably handle more like point three. And he's not getting that he's getting six divided by 24 he's getting point two five, and that could be a big difference for him. So another point oh five times 24 is 1.2 more units of basil a day. And it might be four but it might be point four it might end up being eight units. I have no idea but if I was you the first thing I would do is tonight I'd give him seven units of basil var instead of instead of sex. Because this because even when he's down near 100 it's only because you're driving him down with a lot of like injections. It looks like does that make that right?

Katie 34:46
Yeah, I mean we still think that like there's a couple days during the week that we're convinced that he's still honeymooning because we like have to give him juice all day long. But then, there's some Is that it does seem like it, that is what is going on. Okay.

Scott Benner 35:05
So on those days where it seems like he's honeymooning, instead of just giving him juice, I guess you get caught in the loop like, Oh, hello, here's some juice, and then he goes back up, and then he comes back. Oh, cool, here's more juice, just give him something more substantial. Give him a half of one of those peanut butter things or a bite of one of those peanut butter things, put something in his stomach, it's going to stay in his stomach for a while on days like that. Because on days like that, when his body's doing the work, or some of the work, the Basal insulin you gave him is still doing what it's doing. So since you can't shut it off, when you're injecting it, you need to put, you need to then think of the Basal insulin like a Bolus. I know that's like a weird leap to make. But you can give him uncovered carbs. And if you give them enough of them that will sit in the stomach and digest more slowly, then that will hold his blood sugar up longer than June than juice which will go in and try to fight with that extra basil that he doesn't need because his pancreas is making some insulin today. And that it's just the juice gets overwhelmed and basically burned off too quickly to help you. So you have to put something more substantial and in those situations.

Katie 36:15
Okay, okay.

Scott Benner 36:16
So the graph I'm looking at here, is this a pretty a pretty common graph for most days?

Katie 36:25
Yeah, I mean, if you looked at it, like a few days ago, you'd be like, what the heck because that was when he we think he was still honeymooning. And he was like, dropping down quick. Okay, every hour, but I would say probably we've been trying to do it. Like, there's some days I that I'll look at it while I'm at work, and I'm like, wow, he's, he's doing really good today. And, you know, he's in like, the 119 area for most of the day. But he does jump up pretty high. So I'd say Yeah, probably, you know, that's pretty accurate.

Scott Benner 37:00
Okay, so the next thing here is, is the meal and so on. So I want you to try to imagine, tug of war. So we got a rope. And on one side, there's one team on the other side, there's another team, let's call one team insulin and call the other team carbs. All right. And in a normal tug of war, the goal is for one team to win, right, there's a flag hanging in the middle of the rope, and you're trying to pull the flag to your side. Mostly what's happening is your carbs are winning that tug of war. But you're playing a slightly different game, you don't want anyone to win the tug of war, you want the flag to stay in the middle. You want the carbs to pull as hard as they can, while the insulin is pulling as hard as it can, and no one, neither side be able to overwhelm the other. So when you see a really flat line, that's what's happening. What's happening is, you know, you see somebody on line, they're like, look at me, I Bolus for Chinese food, and I'm at and stable and you're over there cursing at them. And and the point is, is that they've balanced the impact of the carbs against the action of the insulin perfectly. You're not doing that. So what you're doing is you're setting up the rope, giving everybody the rope and you're telling the carbs, hey, you go ahead and pull now. But insulin, you're not going to get the pull for 10 minutes. Right? So even if you were to start at a great blood sugar, say he was 85. And he's super stable, say we figured out his basil. He's 85. He's super stable when he's away from food. And you're just like, we're so good at this. And then you go to feed him food, and he eats his crosstable but you put in the insulin five minutes before so the insulin goes in. In five minutes. It's doing nothing. He starts eating that crosstable it starts hitting him almost immediately. And now the rope starts getting pulled towards the carbs. He goes 85 he goes 90 he goes 95 He's 110 He's 125. Now you're diagnol up 131 arrow go straight up. The sound familiar? Yep, yep. Okay, and now he's flying up 151 80 boom, and then all of a sudden it starts to dip a little bit 180 200 it's catching, it's catching? Oh, I think it's gonna work. It's gonna work. No, it's not to 2250 right, that right there is when the insulin started working. Because without the insulin at all, his blood sugar would have went for forever up because he has diabetes. So right when you start seeing it to slow down, and then it starts to level off that time. That's how long it took for the insulin to have him like sway over the food. Right. So now imagine if you put the insulin in 15 minutes before then you'd be telling the insulin go ahead and pull sooner. And you'll keep messing with that a little sooner, right a little later. Sometimes it's a little more, it's a little less, and you figure out timing and amount. gotta use the right amount of insulin at the right time. If you do that, you can eat anything. Anything and your blood sugar won't go up. It has to be the right amount at the right time. Now Some foods are going to take an insane amount of insulin over other foods, you know bolusing well for broccoli is not as hard as bolting well for chex mix, or oatmeal or something like that, but it can be done if you can figure it out. So the first thing you have to do is Pre-Bolus longer. So you actually have to do it what happens, you guys put it in, and then you lose your nerve and give him the food.

Katie 40:23
No, so like in the morning, it's hard because he wakes up and he's like, ready to eat, like, give me all the food. And, you know, with his autism, he gets, he gets really aggressive and upset and it's almost like, Okay, are we gonna, what are we going to deal with? Are we going to deal with them beating us up until the insulin kicks in? Or,

Scott Benner 40:47
you know, up in the morning? Or does he wake himself up?

Katie 40:51
He pretty much wakes himself up. There's some mornings where we were. My husband has to because he has like therapies and stuff. Um, but he, he pretty much is about about Yeah,

Scott Benner 41:06
similar time. Yeah, okay. This is blood sugar start going up before he eats ever.

Katie 41:13
This when he wakes up, it starts to go up. Yeah.

Scott Benner 41:16
Okay. I'm gonna say good, because that means he wakes up. I'd give him insulin. Like, right away. And how was he with the shots? Does he mind them?

Katie 41:28
He doesn't like he doesn't like him. And that's why we want to get them on the pump. Because we literally have to, like, told him like, it's pretty. It's pretty aggressive. You know, like, my husband has to hold him down pretty hard for certain places.

Scott Benner 41:43
I used to have to hold I used to have to run after she giggled and ran away from me. So and then I'd have to grab her and hold her and I'd be like, come on, I had the needle in my teeth. And it was you know, I'm sure it was very hygienic. But my The reason I asked the question was because I was wondering if he just didn't mind the insulin injections could we do to in the morning, like, wake him up, pop in the unit just to get it going and then Bolus for the food? You know, I'm trying to think of ways for you to do that. But you're right. If you get to a pump, then either, you know I what I would do is I would say to myself, how much insulin does a meal this breakfast usually take? Can you tell me about how much?

Katie 42:23
Um, yeah, I've got I've actually got his chart right in front of me. And so he averages usually like, three, like anywhere between two and three in the morning for breakfast.

Scott Benner 42:34
Okay, and you think that when he wakes up how soon is it before he eats?

Katie 42:39
Pretty quick after he wakes up? After he wakes up?

Scott Benner 42:41
When's he eating? timewise

Katie 42:45
Um, so my husband says like, within 20 minutes to half hour,

Scott Benner 42:49
20 minutes to a half hour, but it would be sooner if it could be. Like, like, if you just if you gave him the if you if you like whip the peanut butter and jelly Adam in the bed, he'd start eating it. Oh, yeah. Okay, so you you, I just want to make sure so you have control of when he can start eating. So I have to say if that's the exact scenario you're describing, he wakes up, I inject the insulin as soon as he wakes up

Katie 43:17
with you, at the end he would do for the blood sugar. That is when he wakes up and what you're going to feed them on a Purdue bowl.

Scott Benner 43:25
Yeah. But we're also going to try to get him to wake up at a better blood sugar. But yes, I would. That means to be perfectly honest, at any point overnight last night, I would have tried to move his blood sugar with an objection while he was sleeping.

Katie 43:38
Okay, yeah, we have done that once. He was pretty high one night, and we went in and gave him some but it ended. I don't even think that it did a ton. Well, it's

Scott Benner 43:48
probably because he doesn't have enough basil too. But so that's so understand if the basil is only in there enough to hold him at 200 overnight, and you put in a little bit of insulin, he'll dip down but then his body function will push them back up again. So even though he doesn't have food, his body's still making glucose in different ways. And so I'm waiting, trust me in a couple more years when he starts growing, it's gonna get worse. So it's good. You're figuring it out now. So yeah, I mean, how much like how much insulin would have moved in from 200 to 100. Last night, do you think? Like, forget the chart for a minute, what do you think it would have taken?

Katie 44:29
Well, we did last night before he went to bed. We had to give them a unit.

Scott Benner 44:35
Then that's what it was like 300, like around 930 or so.

Katie 44:39
He was that's probably what Yeah, so we wrote it down it at 910. He was 242. And we gave them a unit

Scott Benner 44:46
and then he popped to 300 and then came back down. Can I ask you Did he jump up from the anxiety of the injection do you think? Do you know because if he doesn't like the shots, anxiety and adrenaline can push your blood sugar up.

Katie 45:01
So he actually was asleep woman gave him his head up anyway, last night. Yeah. So he doesn't mind them money sleeping.

Scott Benner 45:10
I see. Okay, I see what you did here. He's low around six, seven ish. He does this fire up and around 250 you're like, Oh, hell, and you gave him insulin, and it's still powered through that insulin up to almost 300 before it started to come back down. So I know you don't see that. But if you're looking at the graph, that's what I say. Yeah, pretty much. Yeah. So I'm gonna tell you that see the two dots that are the, the harsh shop and then there's two dots that are closer one that's farther away, and then they get tight again, around like maybe eight or nine right in there. Yeah, he's sharply going up there, that's when I would have given him the insulin for that, like you waited like, you really, you You let you let the momentum get on the side of, of the blood sugar. So even though you put a unit in, he only he went 250 to 300, then back down to 180. And then see how he starts rising again once the units out of him. That's because he doesn't have enough basil. That's exactly what that is. And even though the basil was in him all night, and it did try to get him down and only ever got him as low as like 170, maybe 175. So yeah, I think I think another unit of basil is a great start. I honestly think if you do another unit of basil, and try to do a longer Pre-Bolus let's just call it 15 minutes for now. Okay? I think tomorrow's graph looks substantially better. I wouldn't even want to mess with your ratios. Until we could get the basil right? And then get your beginning get your Pre-Bolus is right because I can't I can't tell if your ratios are they might be way too heavy and you don't realize it and and you're just making up for the Basal all the time. Do you does anything that I've said so far not made sense or been confusing?

Katie 47:03
No, I, I mean, it's, it's all making sense. It's all me It all makes sense. When you kind of explain it a little bit better than the doctors that I'm getting to. I didn't even know that the basil guard stays in his system that long. I thought it was just to keep him study at night. No, it's

Scott Benner 47:23
it's all day. It's supposed to be doing that same thing all day. You know, in a perfect world. I know you can't imagine this. But if he didn't eat in a perfect world, that basil Gar should hold him at like 8524 24 hours. It's hard to get right. Don't get me wrong, but that is the that is the overarching goal of that medication. That's what it's for. Okay, I'm gonna ask you to listen to the defining diabetes episodes. Okay, they're short. And so you'll get through them quickly. They're in your they're in your podcast app, but you can find them at diabetes pro tip calm to if you need them in a list. Because there are some pretty basic terms that you don't know yet. And you're so these these shorter episodes like you'll scroll all the way to the bottom there's a list of them there's I think it starts around 236 number 236. It's Bolus basil honeymoon, a one see some of these are, you know, just a few minutes long to 20 minutes long there, me and us and my friend Jenny. She's a CDE and she's had diabetes for almost 33 years now. As a matter of fact, for everybody listening we're gonna do like a big like online card for Jenny for her 33rd diversity. But we'll talk about that later. Standard Deviation extended Bolus algorithms non compliant like there's just a ton of there's a ton of just terms that if you understand not just what they mean but how they work there, they become tools in a toolbox so do that get through those and then once you get through those or at the same time, I mean, you should start the diabetes pro tip episodes. So it's going to be like this phone call except much more focused topic to topic and they started Episode 210 and you'll find them on that page as well. I think you're I think this is usually something I end up saying to a lot of people you are seeing it right like you're seeing the problems and you just don't have enough tools to do something about it. And it doesn't sound like your doctor is doing much more than saying things like let's change his carb ratio to one to 18 at breakfast and see what that does is that about it

Katie 49:42
is exactly what it is. That ain't gonna work.

Scott Benner 49:47
Because one to 18 might be too much. Like if we get his basil right, you might find his breakfast is one to 14 you might find as lunch as 110 maybe not, I don't know, but we're never going to know for sure while his basil is This far off. So and you need to understand what the Basal insulin does, you need to understand what all this stuff does or you can't, like imagine you're going 1000 miles an hour in a car and you're in control of it, you don't know which one's the brake. Like that's where you're at right now. So let's teach you what the brake is. And then you'll do better job when you need it. But I'm saying, just based on this graph, and what we've talked about so far, we're going to try another unit a basil at night tonight. And starting at his very next meal, you're going to Bolus him sooner Can I ask is what's the last time he's eaten today? It's 1047 right now, or is it 1047? Or your? Yeah, okay, what time has eaten last today?

Katie 50:47
Um, he had breakfast around eight. But he's, we gave him eggs first, and then gave him regular food, carb food. So probably, like 830, he was done maybe 30.

Scott Benner 51:06
By 30 1032 hours to the medical What's his blood sugar right now?

Katie 51:11
Um, might be too far away from him. It says 242.

Scott Benner 51:19
All right. I don't like this any more than you do. But go tackle him and give me an answer. Because I want you I want you to make a Bolus here with an intention of getting his blood sugar to 120. If that's a unit, if he really is one for 115, then that's perfect. Give him a unit. And let's see what happens because you either didn't Pre-Bolus his meal, which I don't think you did. Or you didn't use enough insulin for his meal, or a combination of those two things. And so he's now 240, he does not have enough basil. So he's gonna, he's gonna drift up till the food's out of him till it's been digested. And then his basil is just gonna hold them steady, wherever he's at. He's just gonna sit there. So drive him down and see if it'll sit there. Now, if you drive him down to 110, like say you give him this unit. And 90 minutes from now he's 110. And two hours from now, he's still right in that area, and he's sitting stable, well, then, hey, guess what? Your six units of basil is good. We don't have to give him seven tonight. But you need to do a better job at meals. And that might mean that these ratios are off, and you're not Pre-Bolus thing. So let's take a shot at it today. And I'm going to keep in touch with you. Okay, so take a shot out to take a shot at it right now try to drive them down to 110. And then I want to see what happens. Does he go down at all? Does he go down and stay stable? Does he go down and bounce back up. And now if he goes down, and it looks like it's going to be too far, like say he gets to like, you know he's at and he's one arrow down like an hour from now, well, then that was too much. But don't give him an entire juice box. Like give him a couple of steps try to stop the arrow. Because if you just throw in 15 carbs, then it's very likely that his blood sugar is going to stop going down like it did yesterday at six o'clock and then shoot back up again. Because you've got all these carbs in them that are uncovered because you didn't Bolus for them and your basis might be wrong. Does that make sense?

Katie 53:23
Yeah, cool. All right.

Scott Benner 53:28
Is it reasonable to ask you to jump back on and do this again? for like a post mortem for like, 15 minutes tomorrow? Yeah, that's fine. Even though it's Easter.

Katie 53:38
Oh, right. Yeah. Like I don't Yeah, I guess it depends on what time

Scott Benner 53:42
right. Well, whatever time is good for you. I just I don't want to just leave you and in the lurch. I want to I want to figure out what what happens.

Katie 53:51
I'll tell you what, Can I Can I ask a question ask a lot of questions. God. So if we do the unit now, so we've pretty much stuck to and I know it I know it's not right? But we're kind of like we have no idea how to do like a unit without giving them food and stuff. You know what I mean? Like he he's gonna be eating lunch probably in the next hour and a half. I would definitely if we gave him a unit now. I guess our thing is that we don't we've never really done that we've never like corrected for his blood sugar alone.

Scott Benner 54:31
Yeah, so here's how I would think of it for you. If you think he's gonna eat in the next hour, an hour and a half, then most assuredly give him the unit now. And maybe give him a unit and a half and then consider this a correction and a Pre-Bolus. You could do that or you could just give them a unit now and let's see how far we get down. Like say you give me a unit now. And an hour from now he's acting a little hungry, but his blood sugar's 150. Then in that case, What I would do is then Bolus his meal, right, and then wait for a little bit of a downturn like say the one they put the insulin in. And when you start seeing that insulin working is 150 turns into like 130 have a diagonal Down Arrow, that kind of thing, because it's your first time, then go ahead and feed him. And now you've got insulin on your side. Now Now you're holding that rope and you told the insulin Hey, go ahead and pull. So now, the interesting thing about when the insulin poles is it, it doesn't pull it full speed immediately. So it's not like a light switch. It's a slow burn, it's like it's like getting a tractor trailer up to speed, you know how you have this going to shift to like 20 years just to get into like 40 miles an hour, right. So that's how insulin works. It's like, it starts the pole, but the rope doesn't move. And then five minutes later, you're standing back on, I think the rope is moving, I'm not sure. And then 10 minutes later, maybe it did just move a half an inch, 15 minutes later, oh, it is moving 20 now it's moving a little more. Now you've got this, this starting blood sugar, let's say you started 100. Now you're 2025 minutes later in whatever that space is, you're at diagonal down. Now you put that food in, right, he starts eating at 85 diagonal down. And as the food starts to hit him, boom, the insulin kicks in. So now the insolence pulling as hard at it as it Canada 85. Now the food's pulling as hard as it Kennedy five, neither of them can win, and your blood sugar stays at 85. That's how people make a straight line on a graph. It's that easy. You know, it's not incredibly difficult, but it's that easy. It's that it's that simple, but it's difficult. But you have to have your settings right before any of that can work because if you're running in with that plan, with a deficit of basil, and carb ratio that you don't know is working while you're trying to fight with frozen chicken nuggets of fruit strip Go Go whatever the hell that is. And and across the board, you're in trouble. They think that's not those foods are of the most difficult ones. Like the only way you can make that worse is if you gave him oatmeal and put fruity pebbles on top of it, then I think maybe you could make it worse. And he would definitely Thank you Are you kidding me? As I'm saying it I'm like, Oh my God, why is no one ever put Fruity Pebbles? It can

Katie 57:13
sound seems okay, yeah, cuz we vote. You know, when they were in the hospital, they kind of scared us into our train of thought being okay, this kid's only gonna eat three meals a day. Yeah. snacks are gonna be pork rinds and eggs. Like, that's it. Like we

Scott Benner 57:34
were the country issue you live in.

Katie 57:38
upstate New York.

Scott Benner 57:39
Interesting. Okay. Yeah, well, listen, this ain't working. So you should try something different. And his blood sugar is higher. So I think the thing you need to try is more insulin in targeted areas. And I think you need to kind of, you know, like I said, like, do a little studying, we get some of those other episodes and kind of fill your toolbox up, tell your husband I said, Shut up and listen, like, Who cares what he thinks, just do it. By the way, when you're listening, and this is a personal favorite of me. Please don't listen on the same phone. So that I get credit for two downloads. I'd like you to listen. Thank you very much.

Katie 58:16
Hi, listen at work when I'm at work all day. Yeah. So

Scott Benner 58:18
he if he I don't know if he would hate me or like me, but the information is good. And you know, neither here nor there. What do you think something. So I do think that you guys, ironically, are only a couple of days away from a graph that you're like, holy crap, look at this, but you just don't know it. Like, aside from having to tackle him and not knowing anything about autism, if you sent your son here, I could get his blood sugar down and stable in the next four hours. Like I could do that, but I know how to do it. And it'll take a little longer because he's MDI and we have to wait till tonight to get in some basil. And it sucks because he doesn't want a bunch of injections, but I would use humor log to get his blood sugar down today. And then I would get the basil right and have it held there. That makes sense. I also I also definitely wouldn't try to get a pump.

Katie 59:12
I just think Yeah, we're we're trying we're I don't know if you I mean, you obviously know, but they're coming out with a new Omnipod and or an updated version and we're trying to figure out if we get it now. It will qualify for an update updated version 10 that comes out

Scott Benner 59:32
to the algorithm. You want to get the VM on the pod five.

Katie 59:35
Yeah, yeah. Like that.

Scott Benner 59:37
I bet you would give other kids Yes. Oh my gosh. Wow. How many Tommy?

Katie 59:45
Well, we have one that is 11. And we have one on the way so you're preggers?

Scott Benner 59:50
brave and or stupid people. Good for you. Congratulations. Which which Are you brave or stupid? But Tommy.

Katie 1:00:01
Well, we found out we were pregnant. Before gauge, we found out about his diabetes. So

Scott Benner 1:00:07
no, I say, gotcha. I also like found out you were pregnant. Did you have any inkling you might be? Yes. Back then, like you're telling you don't know how it happens if you found out you were pregnant when you got the invitation to the wedding, that's all. Alright, so any other questions?

Katie 1:00:31
I don't think so. I think we'll try that. And, you know, we really, I really don't like, I mean, even in the hospital, they I was so surprised that they let us leave the hospital and his sugar was like, 300. Yeah. And so when we left the hospital, like, okay, they let us leave, and it was 300. So we could probably get away with him being free. You know, we have that mindset. And so when I'm listening to your podcasts, and people are talking about, you know, a high, you know, a high for you is over 120 it's like, holy crap. It is like high all the time.

Scott Benner 1:01:12
I asked. I have a question I prior to the diabetes. I mean, he's always been on test deck, right? I mean, you've known he's had his autism for ever ish, I would imagine six months. Yeah. Yeah. But you have a feeling for who he was before the diabetes. Is he different now? More aggravated, easier to set off moodier?

Katie 1:01:35
Um, I mean, his his lifestyle changed a little. So I think that he's, you know, he's home all the time now, which he wasn't before. So that is different for him. But no, I you're not sure. But I don't I don't think I don't really think so.

Scott Benner 1:01:54
Because a lot of people don't recognize when their blood sugars are high constantly. That it's it's impactful on your brain. And it makes people short tempered and cloudy and confused sometimes. And so you may see a change in him after a couple of weeks of his blood sugar being lower and more stable. Does he know when he's dizzy?

Katie 1:02:17
No, I mean when he's been low before, like very low and he just, you know, acting totally fine.

Scott Benner 1:02:23
Okay, I just didn't want to like bring him down too quickly and have him because he could get because people can get dizzy at higher numbers than dizziness really exists, but it's still real. So you know, when your body becomes accustomed to higher blood sugars, and then even like, I helped a girl one time and she was like, like fallen over dizzy it like 150 but her blood sugar's were constantly 250 so it took her took her a number of days to get accustomed to it. And then she was fine eventually. Yeah, yeah. So that I just wasn't sure about that. So your your overall goals are if we're just talking about blood sugars, our stability spikes that don't go over 160 you I want you to get into a world where 160 is like a mess and 180 is a complete okay. And when you're away from food, or Bolus insulin stability that exists more between 85 and 110 Okay, so that's the ability that we saw last night that was basically between 180 and 220 we want that stability to exist more 85 to 110 overnight and you do that and you start Pre-Bolus the meals and you dial in these settings a little bit and his a one sees next day one to be 6.5 probably and I'm guessing now it's more like Hold on one second. For some reason a guest did not pop right into my head. So let me do a little checking his his a one C in the nines right now.

Katie 1:04:05
So the last time we had it done was actually when he was diagnosed and it was 9.6 I think

Scott Benner 1:04:12
average blood sugar of 230 is 9.6 so it would be interesting for you to know that I just pulled up a little glucose calculator that by the way is available at Juicebox podcast.com. And I typed in 230 because I think that's about your average blood sugar and it popped up a one see 9.6 so I when do you when's he gonna get it done next? I guess he hasn't had it done in a while because the COVID

Katie 1:04:35
Yeah, and it's mean he is like the most difficult person to get blood drawn.

Scott Benner 1:04:43
Gotcha. So you're gonna miss like for people to hold him down. Well, here's the good news. Right? If you if you aren't in by the way, want for years, no trouble ever, never any trouble and one year I forget how old she was. She just decided she didn't like needles anymore. In the windows office like she was backpedaling into a corner up the table into like, if she was Spider Man, she'd have been on the ceiling. And the nurse looked at me like what is happening? I was like, Oh no, and it lasted for a couple years. Like she she was able to do it finally, but in a panic the whole time and then one day it just went away. Now she gets blood draws, she's like, Here you go, she just throws her arms and she watches while the needle goes in. I don't know what happened, but she freaked out for a little while. Not to say that it's gonna get any better for gage. I'm not sure but what I am gonna say is that if you have a CGM, you can be reasonably assured of his blood of his a one sees using like their clarity app. Right? And so maybe that's the thing you can save him from is having to get those blood draws that are just for a onesies.

Katie 1:05:49
Yeah, I think they want to test him for other stuff like celiac, and I can't remember what

Scott Benner 1:05:54
Yeah, they're gonna they're gonna want to test them for celiac, it's very common with type ones. They'll probably want to test this thyroid function as well. Yeah. And the thyroid things uphill, if he has that. That shouldn't be difficult for him. But my God, if that poor kid has celiac,

Katie 1:06:11
I know how the healthy. I have no clue what the cavity? No. I don't think he does. I mean, I think we would know I

Scott Benner 1:06:24
think he would just be walking around holding his stomach constantly going. I think there's something wrong. Yeah. So Alright, so let's do this. Is he still 240? ish?

Katie 1:06:35
Yeah.

Scott Benner 1:06:38
All right. If you want, you can send me his next comment. I'll watch it overnight for you. So we can talk about it. You want to do that?

Katie 1:06:46
Yeah, that was the Dexcom share thing.

Scott Benner 1:06:49
Yeah, I'll follow him for like the next day or so. And we'll get back together tomorrow and talk for maybe a 20 minutes? Sure. Okay. I'm gonna say. So I'm going to push stop on the recording, and I'm gonna give you an email address to send me as Dexcom. Most podcasts would split this into two episodes to try to double their downloads. But I'm not a scumbag like that. So just listen to one more ad, and then we'll get back to it. It's not really an ad Actually, it's um, I don't know how I've explained that before T one D exchange is not an advertiser, I get compensated when you complete the survey. So it's not technically an advertiser, it's me using up my space on my podcast to let you know about it. It's splitting hairs, but neither here nor there. That's how it works. And I think it's important that you know, now that we're past that, that D one D exchange is looking for type one adults and type one caregivers who are us residents to participate in a quick survey that can be completed in just a few minutes from your phone, or your computer. After you finish the questions. And they are simple, I actually did it about seven or eight minutes, you will be contacted annually to update your information. And to be asked further questions. This is not an intrusive process, it's just an email. This is 100% anonymous, completely HIPAA compliant and does not require you to ever see a doctor or go to a remote site. So this is your opportunity to impact Type One Diabetes Research right from your home. Now every time someone completes the process using my link, T one d exchange.org. forward slash Juicebox. Podcast benefits. So if you've been looking for a way to help people with type one, research, or the podcast, nothing could be easier or more beneficial. So one more time, go to T one D exchange by using my link. It's right there in the show notes of your podcast player, or you can type it into a browser T one d exchange.org. forward slash juicebox. When you get there, click on join our registering now, and after that just simply complete the survey. It's super easy to do. And it'll help a lot past participants like you have helped to bring increased coverage for test trips, Medicare coverage for CGM, and have made changes to the ADA guideline for pediatric a one c goals, which is a really big deal. People filled out that survey and they took that data and impacted how the ADA talks about a one c guidelines. That's important because that's how endocrinologist hear about goals. So the reason that your endo right now isn't trying to keep you at an eight a one C is in part due to the T one D exchange, and the data that they collect from people who take the surveys. It's a big, big deal. It seems like it might not be, but it's huge. I'm excited to imagine what your participation might lead to. And I'm personally trying to add 2000 people to the registry by the end of diabetes Awareness Month. I hope you can help me one d exchange.org. forward slash juicebox. Thanks for listening to that. Let me catch up here. Katie and I spoke I started following her child on Dexcom. We texted back and forth For a number of days, then we got back together and recorded this follow up. You ready? Here we go. Okay, you are being recorded. So I appreciate you coming back and spending a couple more minutes with me. I expect you're going to talk a lot more this time and ask a lot more this time. So I'm just going to ask you, it's been five days since we spoke, how are things going?

Katie 1:10:27
Um, oh, they're kind of went the opposite direction. Okay. So instead of being I mean, he still has highs, but instead of being really high all the time, he's kind of now we're dealing with a lot of lows. And we're thinking that maybe that has to do with maybe the insula homologue, the the insulin that he gets when he eats, maybe that needs to be cut back.

Scott Benner 1:10:56
Okay. All right, let's figure it out for you, because your graph over the last number of days is exponentially better. Overall. You know what I mean? Well, I agree. Yeah, everything that's happening is happening, lower now, not hire, which is, which is amazing. When you do find, well, this last day, this last 24 hours. If I'm looking at it, and I am then I go back to last night. And I'm looking overnight, so you're correcting high blood sugars. Luckily, your blood the high blood sugars are cracking are now under 200. Which is really exciting. Yeah, and you even when you're high and stable all the way overnight, you're higher and stable between like 140 and 160. ish. And there's just big Bolus at 9am. Drops really fast. And then Okay, so all we did so far was move the base lop one unit, right? from six to seven. Yeah. Okay. And I actually thought for the first couple of days, that looked incredibly stable to me, like, like, I didn't see a lot of lows that were from, I didn't see any lows that were from basil. As a matter of fact, now even looking at the last 24 hours, I don't see any lows that are from basil, I see them from corrected high blood sugars. And you're getting like, like today, as an example, around 130 there's a little bit of like a 6065 blood sugar, and then it pops over the next 20 minutes up to like 75 or 80 levels. And then two hours later, he's 250 so what do you know what happened there so we can talk it through?

Katie 1:12:56
Um, so Zach was actually home with him today. And he went low. And I believe he corrected for he's he saw the low that you're seeing was like, okay, we need to do something because it's going to go lower, you know? Yeah. He gave him like a 15, gram, carb, gram, whatever. Fruit strip. And then it seemed like he was gonna be alright, and then it gradually just started going up.

Scott Benner 1:13:29
Yeah, 1515 carbs of something that sugary without insulin is never going to be okay. I would imagine I mean, unless unless his blood sugar was 65 and two hours down which the graph doesn't make it feel like it that was the case to me. But you have a tea? So are you looking at it? You see it? Yeah, I have a Okay, so just in general we're we're still looking at like timing issues, like you're either bolusing the meal and it's getting away from you and then you're correcting the meal. And it's either dropping super fast, straight down or fat not fast at all, but still falling over hours and hours and hours and ending up lower. So when that happens to me, that's a good indication that your meals are mis timed. Or you're not using an offense and like you're saying or too much insulin You know, one or the other at your meal time so what do you think is happening at the meals?

Katie 1:14:30
I really think that it's the excuse me that it's the actual amount of insulin we're giving him I feel like maybe now it's too much

Scott Benner 1:14:40
because you're on Pre-Bolus thing now. Yeah, cuz he's

Katie 1:14:43
definitely Pre-Bolus thing and i and i know that he's, you know, he's pretty much talking to me all day, like okay, I waited 1015 minutes and and then he eats and then it's like, holy crap. He's like dropping super fast and then you know, we just give them something else. But it seems like since we changed the basil, that he's been having a lot more of these lows after he eats, and the only thing I can think of is that his humalog is just there's too much being given for that now.

Scott Benner 1:15:17
Yeah, because we really did two things on day one on day one, we gave him another unit of basil. And you started to Pre-Bolus the meals. So I think of that as two distinctly different steps. And like I said, the basil, I think is, I know you had to correct a 65 today. But the truth is, is that he was on the lower side from 930 till one, but he was still between like 65 and 75. In that time, so there's still stability there. But what you really need to look at from that is that it came out of a, this nine a 177, blood sugar that somebody hit very hard, because it dropped like a stone in like 35 minutes, down to 60. So everything that's happening after that big drop is, I think, precipitated by the big Bolus that brought you from the 170 ish down to the 60. So that Bolus was see how fast it worked. Like to me, that means you put in a lot of insulin that didn't have a lot of resistance, and then it gets down. And I'm assuming he ate in there as well. Yeah, I think a lot of that, I would be hard pressed to say that the basil is the issue is what I'm saying. I think you're definitely right. And let's talk about why for a second. Because before when you weren't using enough basil, and you weren't Pre-Bolus Singh, you needed more insulin to stop the spike. Because the blood sugar just didn't have any resistance coming from anywhere. It didn't have any resistance coming from a timing aspect because you were Pre-Bolus thing. And it didn't have enough resistance from a basil aspect. So you fix the basil or make the basil a little more aggressive. And then you start putting the insulin in sooner that gets it working sooner. So that just makes sense to me that then you're right. You're probably using you're probably using too much meal insulin back then. And you need to probably take some of it out now. I think that's probably your next step. So what's his insulin to carb ratio?

Katie 1:17:28
I'm trying to remember I had it in front of me. So he gets he gets I'm trying to think because they're all different. 16 I think for breakfast, although we noticed with the with it going down, Zack had changed everything back to to an older number that we had before. Yeah, so he was getting he changed it to like 20 but then that still he's still dropped pretty low. Yeah, it's so I think we're just gonna, like tweak it a little bit. If that if that helps.

Scott Benner 1:18:13
Yeah, no 100% I would say that, that you're gonna have to, like play experiment in here a little bit and keep changing the ratio for the food until you're getting a Pre-Bolus that doesn't result in a spike. Or if there's a spike it comes back down and gets level it doesn't come back down and and fall or you know, you don't have to put in insulin to make it come back down. You just wanted to sort of happen. We don't care if it goes up a little bit as long as it's gentle and not spiky. Right? Yeah. And does it make this the reasoning? Why makes sense to you after I said what I said. Yeah, okay. Yeah, definitely. Cool.

Katie 1:18:51
Do you guys I was already kind of thinking that good.

Scott Benner 1:18:54
Yeah, no, no, you're you. You I felt like you got a lot out of our other conversation. Because cuz you guys really like that the two days afterwards, were just exceptionally good. And you were just still figuring stuff out. It's and listen to say that you're not going to figure out Pre-Bolus in four days is an understatement. Like you're gonna have to, you know, you're gonna need some more time to figure it out. But you're not creating. You're not creating scary panicky lows. And so, you know, and his blood sugar right now is 109 which is just amazing. You know? Do you have any questions?

Katie 1:19:35
No, I mean, the only thing is that we we just got approved like, fully approved for the Omnipod dash cool. And so we're setting up setting up going to his hospital and having them train freenas on it and having them you know, put put it on them for us and all all that fun stuff

Scott Benner 1:20:01
yeah

Katie 1:20:03
and at that time we'll be able to control his basil like hourly right so we can you know if we notice a low at a certain time a day we can just change it

Scott Benner 1:20:18
you should win it'll

Katie 1:20:20
be easier

Scott Benner 1:20:21
oh my god it's so much fun the first time somebody explained to me what an insulin pump was it felt like they gave me like an on off switch for basil which was always my biggest like concern was once you injected it, it was in there and you couldn't do anything about it you know your Basal rate per hour should start in my estimation are around point three an hour watch that the hospital doesn't try to like make it point one or something like that and then tell you like oh we just want to make sure like it's not too much because if they make it point one his blood sugar is going to be 250 constantly and so you know point three it might end up being point two five you know what I mean? At some point maybe overnight it'll be point two like I don't know but it isn't going to be like point one or point one five in my in my estimation so just kind of pay attention to that when you make the switch when you're doing it you know

Katie 1:21:16
um, so we asked to do it in person because they asked if we want to do it virtually or in person but we're not comfortable doing it on our own so the first time at least and so we just have to wait for them to tell us when we can come in person so hopefully because we should be getting getting all the materials tomorrow and in the mail so we should probably next week or the week after at least

Scott Benner 1:21:44
excellent very cool that's that's amazing I think and he's gonna be okay with it right cuz he leaves the Dexcom alone so he should be for the

Katie 1:21:52
pump right every once in a while he touches it but

Scott Benner 1:21:55
it's not really an often thrown across the room or something like that.

Katie 1:21:57
Yeah, actually the day that I was talking to you we got our so I went on to touch by type one and he got the box that they give to people who are newly diagnosed and it came was the demo

Scott Benner 1:22:14
Oh the power demo was in there cool.

Katie 1:22:16
Yeah, so it was cool so I just stuck it on him and to see you know how he does with it on like his back area because we're trying to figure out where to stick all the stuff Yeah. And he he was fine with it so we're thinking yeah, he's gonna do okay I'm excited

Scott Benner 1:22:32
because you to you and your husband? I thought I thought made like a quick adjustment like it all seemed to make sense and you're you're you're doing a great job like I it's I know that his graphs not super like like smooth and straight and everything and you're probably thinking like oh, you know, but it's so much better. Like it really is like it's just do you feel better about it in general?

Katie 1:22:56
Yeah, I mean, I feel way better about it because I was just so glad that Zack actually was on board with it and you know, he felt comfortable with it because he's the one that's with him you know all day long so I was really happy to that you know, you kind of convinced him about all this stuff.

Scott Benner 1:23:18
I ended up texting with him by mistake I think because your phone died like the the day or something after we talked and so I ended up texting with him he asked me a couple questions and I just answered them and you know it's funny because guys text so much differently than women though. It's, it's like yes, no, thank you good. But now I felt like he understood everything I'm seeing. You know, as I look at this CGM tells me that you're doing a good job. And it's and it's making sense to you and you're going to, you're going to figure it out. You know, like it's coming around. I have to tell you right now, of the four people I'm following right now Your son has absolutely the best blood sugar of the four of them, including my kids. So he's doing really good. I got a 109 a 134 or 146 and a 67 on there so Wow, you're you're winning in mind. 67 is pretty stable, though. Alright, let's let's we will have to, we'll have to, we'll have to have a little race at the end. I'm going to I'm going to unfollow him if that's okay with you unless you want me to follow them a little longer. And if you do tell me if like if you're gonna try something and you want me to look back at it, that's fine. I don't have a problem one way or the other. Just tell me if you need me again or if you want me to be gone.

Katie 1:24:41
Okay, I mean, at this point, you know, I think it's fine if you unfollow him. If I feel like I need your opinion on something I can just, you know, we can just read them that okay. Yeah, cuz I think when I know what our next steps are, but, I mean, we're gonna be getting on the pump. Anyways, so not like we're gonna be able to do too much in that timeframe. Yeah,

Scott Benner 1:25:05
I think just keep working on your Pre-Bolus is keep adjusting the amount of insulin you're using it meals, and you know just try to react mean you're doing a really great job like listen when when you and I got on the other day and we started talking I had no idea your son had autism. And that must add like a level to this that I just can't possibly fathom you guys are doing a really, really good job and you're so new at it like this is April, I've only been at this like five months or so right? And so you guys are killing it like you really are. Yeah, definitely don't feel bad about anything, if you even have the inclination to feel badly work on the Pre-Bolus thing. Keep in mind, and then, you know, tell your husband to keep paying attention, like you know, I put a strip of this, this stuff in to correct and it was too much next time, let me try giving him a quarter of a strip of it. You know what I mean? Like that kind of stuff doesn't have to be the whole thing just because he opened it. And, and he'll learn how to kind of bump those blood sugars around a little bit. And you'll be on your way is that listening to the pro tip episodes?

Katie 1:26:15
I think that he maybe has started listening to some because he, you know, was using all these new terms I didn't think he knew. But I don't know for sure. I really don't know. Well, I did though I listened to podcasts all day at work. So I listened to pretty much all of them. And now they were great. really informative.

Scott Benner 1:26:37
I'm glad I'm glad just Hey, look, let him know that I think it would be a great idea if he listened because he's he's super close. He's just got to think about it a certain way, and it'll start working out. Right. I appreciate you jumping back on. Anything else. Any questions? Anything?

Katie 1:26:52
I don't think so.

Scott Benner 1:26:53
I'm calling you. Well, you're very welcome. I'm calling you a win. And I am unfollowing your son done. I am no longer seeing your private life. You absolutely sent me a note if you need anything, okay? Okay. All right, Katie, hold on one second. Gone, because I'm sorry, I'm turning the recording back on because I should have said this to you. There's two possibilities in here. We fixed this basil. And now you have to fix the meal ratios. Or now that your Pre-Bolus thing. Maybe the basil could go back to six. I don't know which is which that's the thing you're going to pay attention to over the next couple of days. So if you start getting better and better at the Pre-Bolus thing, and you start finding stability at like 90, then you say to yourself, okay, great, we're looking good. But if you start getting better at the Pre-Bolus thing, but the stability you have is still too low in the 60s or the 70s. And maybe you have to take the Basal back to where it was. Does that make sense that maybe because you weren't Pre-Bolus Singh before. The basil wasn't the problem. And we kind of fix the problem a little bit like CGM. I'm saying like, as crazy. I was almost cursed. But as crazy as that sounds, it could end up being one of those things.

Katie 1:28:07
Yeah, I mean, I, I can understand that. Um, my thought my only thought is that. So like, at some point today, I'm not looking at as graph right now. But he was studied for a while. And it was read before, I believe is right before lunch. And so I said, Zack, I was like, you know, you're going to Pre-Bolus and then watch him because if he goes, whoa, then you know that it's the human log, and it's not the basil,

Scott Benner 1:28:39
right? I don't, I don't think I want it. For clarity. I don't think the basil is a problem, I just want you to remember that it's an option, that there are two different insulins working here and then by the, you know, by the way, you're gonna get on a pump, and then it's, you know, and then you're gonna have more control over the basil, then you could then you could start doing like point two, five an hour, you know, and see how that goes. And you could get kind of granular with it. Because you know, either six or seven might not be the right thing, maybe it's six and a half a day really needs. You don't. So you'll have that kind of fine tuning when you when you get the pump to write plus, if it you know, like I said, Maybe he needs point three during the day. And he'll need point two, five or point two overnight, like I'm making up numbers. But if that happens, you can you can make that change. And now you're not just counting on this insulin to go in one time a day and magically take care of 24 hours basically. Anyway, I just want to say that to you so that people can hear it too. I don't want to keep you I know it's late in the evening. probably have to go feed your family and avoid things and hide watch TV and stuff. isn't about what you're gonna do. I'm gonna push the button shut this off again. Huge thanks to Dexcom for sponsoring this episode of the Juicebox Podcast. Find out more about the day Dexcom G six@dexcom.com forward slash juicebox. There's links in the show notes and links to Juicebox Podcast comm Also don't forget about that Omnipod promise. And don't forget that it's possible you're eligible for a free 30 day trial the Omni pod dash Omni pod.com forward slash juice box. And lastly, but not leastly. That's not a word, Katie for coming on the show and having this rather private conversation in front of everybody. Thanks so much, Katie. I hope you and your family are doing well. I'll be back soon with another episode of the Juicebox Podcast.