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Scott
Welcome back, friends, to another episode of the Juice Box Podcast.
Tom
I'm Tom, I'm from Dorset, England, and my son was diagnosed with type 1 diabetes four months ago.
Scott
Nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes or to your healthcare plan. Today's podcast is sponsored by usmed usmed.com juicebox you can get your diabetes supplies from the same place that we do, and I'm talking about Dexcom Libre, Omnipod, Tandem, and so much more. Usmed.com juicebox or call 888-721-1514. The show you're about to listen to is sponsored by the Eversense 365. The Eversense 365 has exceptional accuracy over one year and is the most accurate CGM in the low range that you can get. Eversensecgm.com Juicebox hey, quick word from a sponsor. If you're already using an insulin pump, you know the basics of automated insulin delivery. But the Twist Aid system, powered by tidepool, takes a fresh approach that may be worth a closer look. It is a newer insulin pump designed with real life type 1 diabetes in mind. Check it out and get started today at my link. Visit.twist.com juicebox four months ago. Wow.
Tom
Four months ago?
Scott
Yeah, 20, 26.
Tom
How old is he now? He's just nearly 20 months. So diagnosis? He was 15 months.
Scott
Oh, Tom, how many kids do you have?
Tom
Just one and only one.
Scott
Now, like, this was our first try.
Tom
Yeah. We did something wrong straight away.
Scott
We'll just mess everything up right in the beginning and that way we'll have plenty of time to fix it. How long have you been married?
Tom
We've been married two years, three years this year.
Scott
Tom, how old are you?
Tom
I am 32.
Scott
32. You've been married about three years and
Tom
been together for 11 now, I think.
Scott
Oh, wow.
Tom
Yeah.
Scott
How'd that take so long?
Tom
Life, you know, gets in the way, doesn't it?
Scott
Yeah, certainly does. Wait till you see. That thing's gonna really double for you. Oh, my gosh. Well, first of all, I'm sorry, that's terrible. And I can't imagine how upsetting it must have been for a young family to go through all that.
Tom
It was intense. Yeah.
Scott
Yeah. No kidding. What were. Did your. Your wife. Your. Your ma. Yeah. Did your wife have gestational diabetes by any chance or anything?
Tom
No, she didn't. No. We were checked, obviously, but all that
Scott
was good and in the family. Other autoimmune stuff or type one in either side.
Tom
Yeah. So obviously, because of this, we've started digging into our family history a bit. And on my wife's side, she's got. Her dad had hypothyroid. I think that's what it's called. And then on my side, a couple of distant cousins. One of them has celiac.
Scott
Okay. Yeah.
Tom
You found a little bit other than that. Yeah. Nothing really.
Scott
Well, now. But now you got the type one. Yeah. Yeah. Would you. Would you tell me what you named your son?
Tom
I named him Kylo.
Scott
Kylo?
Tom
Yeah.
Scott
From the movie?
Tom
Well, my wife said we were looking at names and she was like, I really like Kylo. And I was like, oh, yeah, from Star Wars? And she was like, no. I was like, well, let's go with it anyway, just so you know, let me pick the middle name.
Scott
So she let you pick the middle name?
Tom
Yeah.
Scott
Very nice of her to let you do that.
Tom
Yeah, I know.
Scott
Well, so in your mind, he's named after a Star wars character? In her mind, it's something she saw in a book that she thought was attractive.
Tom
Exactly.
Scott
Listen, however it works, I guess I need to understand what you guys saw, how you figured out that he had type one.
Tom
Yeah. So we were on holiday at the time. We were at Cape Verde. We'd been treated to a free vacation, basically because of a death in the family. So it's my stepdad's dad, his wife treated us all to this trip to Cape Verde. And so we were out there and everything was going fine. It was. We landed on New Year's Eve of last year.
Scott
Yeah.
Tom
We thought, oh, it's going to be a perfect start to the year. Here we go. You know, seven days in the sunshine, all that. And from the start, he was a little bit not himself. He was sort of clingy, you know, he. He didn't want to get down from being held and stuff like that. Whereas normally he'd love to sort of play around and stuff. But just more and more as the days went on, we started noticing more and more that he wasn't himself. He was really slow. He was drinking a lot, but he's drunk a lot his whole life. So I don't know if that's, you know, that was anything different to us at the time, but. So he started wetting the nappies before we went away.
Scott
Yeah.
Tom
But because of his age and stuff, we were swapping between nappy sizes. So we just thought that's what that is. You know, it's. It's just him Growing and we're getting the nappy sizes wrong. But then on holiday he started throwing up. So. Sorry, I'm just going to check. I wrote this all down because I'm pretty good at forgetting stuff, so.
Scott
You're good at forgetting. Listen, so far you're doing a great job. Except if you would have said we went on holiday to Tatooine, I think that would have been amazing.
Tom
You know, it was like Tatooine, it was just sand and rocks. Yeah.
Scott
So.
Tom
So he, he didn't want to do anything while we were on holiday. He was just cuddling me the whole time. And a couple of days before we were set to leave, maybe three days, he, his breathing started going a bit funny. He was like, you know, just short of breath all the time.
Scott
Yeah.
Tom
So we, we were asking like, my mum was there and stuff, we were asking what this could be and she was like, maybe it's croup or something like that. Maybe he's caught something on the plane. And then the next day it was still really bad. He was just, he wasn't eating any food, just drinking water and just breathing really heavily. So we took him to the doctors on the island. It's like this resort and they've got like a on call doctor there, basically.
Scott
Yeah.
Tom
So we took him to the doctors, they did some basic checks. They didn't check his blood, but I guess they weren't thinking it was diabetes at the time. So they checked his blood. No, sorry, they didn't check his blood. They checked his height, weight, all that and decided that he had a chest infection and basically gave us some medicine for that and sent us on our way.
Scott
I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years though, because we began using us Med. You can too usmed.com juicebox or call 888-721-1514 to get your free benefits. Check. UsMed has served over 1 million people living with diabetes since 1996. They carry everything you need from CGMs to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, Libre 3, Dexcom, G7 and pumps like Omnipod 5, Omnipod Dash Tandem and most recently the ILET pump from Beta Bionics. The stuff you're looking for, they have it at usmed888-721-1514 or go to usmed.com juicebox to get started now use my link to support the podcast, that's usmed.com juicebox or call 888-721-1514. Why would you settle for changing your CGM every few weeks when you can have 365 days of reliable glucose data? Today's episode is sponsored by the Eversense 365. It is the only CGM with a tiny sensor that lasts a full year. Sitting comfortably under your skin with no more frequent sensor changes and essentially no compression lows for one year, you'll get your CGM data in real time on your phone. Smartwatch, Android or iOS, even an Apple watch. Predictive high and low alerts let you know where your glucose is headed before it gets there. So there's no surprises, just confidence. And you can instantly share that data with your healthcare provider or your family. You're going to get one year of reliable data without all those sensor changes. That's the Eversense 365. Gentle on your skin, strong for your life. One sensor a year. That gives you one less thing to worry about. Head now to eversensecgm.com juicebox to get started.
Tom
But then the day we were supposed to go, so we'd been up on all the night before, worried about him, checking on him, make sure, you know, he was still alive, basically because his breathing was so bad and that, that morning he was just like, his skin was mottled, he was, his hands and feet were cold. Everything that, you know, just terrifying us. So we went and got another check with the doctor and they were like, no, it's right, it's a chest infection. He's all right to fly. We're like, okay. And so we ended up flying back to England and the whole time on the plane, his breathing was really bad. He just didn't want to do anything. He slept for a lot of it and when we landed, we were just like, right, we're gonna, we're gonna. It was about 3 hour drive back to our county from the airport and we, we're like, right, we're just gonna do the drive, get back there. Because it's really good hospital, especially for children, our local hospital. So we're thinking, right, we're just getting back there. And in the car, his breathing was just like, he got so bad and. Sorry,
Scott
Tom, can I tell you something?
Tom
Yeah.
Scott
I'm gonna cry. Just so you know.
Tom
I think you don't need to cry.
Scott
No, no, no. I'm telling you, like, it's just to sit and listen to your words and picture, you know. A baby that age and. And also having a daughter who went through something similar. I mean, she's a little older. She was two when it happened to her. Yeah, but I know what you were going through, and I also understand the medical implications of the. The stuff that you're describing. Like, you know, your. Your little baby's dying there, and you're dragging them from Cape Verie to England and then trying to, you know, and. And now you're thinking about it, so take your time. It's okay.
Tom
Perfect. Yeah. And so on the journey, his voice, he was like, going like, you know, like. It felt like he was sort of, like, gripping on, which we didn't think he was at the time, but clearly he was. Poor little guy was fighting for his life. Yeah, but so we get to the A E, we sit in the triage. It was about three in the morning at that point when we got to the A E, so there was no one else there. They were sat there for maybe five minutes, Came in, the nurse asked, you know, this and that. Is everything all right? Checked her, checked his finger, you know, did the blood glucose. And then next thing, she's like, oh, just follow me, please. And she was like, fast walking, like, you know, Olympic athlete level walking from the triage straight into the icu. And at that point, my wife and I were just like, oh, what's going on here? You know, this is supposed to be a chest infection. Why are we doing this? And then before you know it, we were in the resuscitation room of the icu. Fifteen nurses and doctors and stuff were in there. They were putting cannulas into his hands, his feet. They couldn't get enough blood out there, so they ended up putting a cannula in his jugular as well. Oh, gosh. He had a tube down his nose and obviously, like, oxygen and blood monitors and stuff like that. So he had wires coming out of everywhere, tubes coming out everywhere. And then that's while they were sort of, you know, prepping and prepping him in there. They would explain to us that he was in dka, and obviously we had no idea what that was.
Scott
You're like, no, it's a chest infection.
Tom
Yeah. Literally, we're like, the doctors in the
Scott
doctor from the Love Boat told me that it was just a chest infection.
Tom
Yeah, exactly. So. So. And at this point, I. I guess. I don't know really, but he. He just. Before he was sort of, you know, crying, not crying out, but, you know, like, making noises and pain and stuff. I think at this point, his body had just like, you know, completely been like, right, they're doing this because he didn't even cry when the cannula went in his jugular. He was just sort of limp there. And the, the one thing that I was super happy with is at the start they said you can lay on the bed with him and have him on your chest. So I led on the bed with him and I literally didn't leave that bed for about 10 hours while they were, you know, working on him. Doing stuff. Yeah, and they prepped him. They, they explained to us that they might have to induce him into a coma and take him to a nearby, like, big hospital. And at that point, I think me and my wife were just like, oh, this is serious, serious. But luckily his level started to flip the other way and so that wasn't on the table anymore.
Scott
That's pretty awesome that they were able to do that, huh?
Tom
Yeah, this hospital gets, you know, pretty good. I wouldn't say reviews, but, you know, everyone says that it's a really good hospital, especially for kids.
Scott
And you'll be, you'll be one of the people saying that in the future too.
Tom
That's absolutely. Yeah, I'm sure we'll talk about it later, but their, their whole children's warden stuff is incredible.
Scott
Hey, listen, while this is happening, your wife and you, are you, are you separated from each other? Like, I don't mean physically, I mean, like, are you interacting with each other or are you so stuck inside your own body, in your head that it's hard to even know that she's there?
Tom
No, actually, because. So my wife, she won't mind me saying this, but she's quite a nervous person or anxious. She, she's not good in like high, high stakes situations like that. So as well as sort of, you know, holding my son, Kylo, I was looking over to check she was okay. He's sort of calming her down, saying, it's all right, we're in the best place we can be. Luckily, my grandma decided, my mum, sorry, Kylo's grandma, decided to come with us to the hospital instead of going back to her home.
Scott
Okay.
Tom
And so she was there to comfort my wife as well, while I was sort of, you know, looking after Kylo a bit.
Scott
Yeah, that's something. You feel like an adult and then all of a sudden you're like, thank God my mom's here.
Tom
Literally. Yeah, I feel like that way too often.
Scott
Well, I'll tell you, when your kids are sick. Used to make me feel like I was five And I didn't know what was happening all the time, you know, and you're. You're dying for somebody to tell you something. And, you know, oftentimes, if you're lucky like that and your family can be around, that's really wonderful. So you're the one that laid in the bed. My wife did the. My wife sat with Arden for, I think, for like a day and a half or two days in a bikini because we. Because we came from a. It was like a beach, and my wife was just in a sarong in a bikini, like, the. Like, holding her, and I don't think she ever got up. Like, she just held her the whole time with all the tubes and everything. And it is very it. Once you see the, you know, like, once you get to the part where you're like, wow, this is like the life or death situation, it. Every. Everything just, you know, kind of goes away, except for what's happening. How long until he was back to himself?
Tom
So he probably took about a day before he was getting more like himself. He's. He's such a lovely little boy. He's so bubbly and happy and cheerful and smart and just the best. And so seeing him like that was just, you know, horrible. But that he. First, he was just sort of more himself around us, but as soon as any nurse come came in, he'd just be like, no. Like, basically telling him no. But by the. By the end of our stay in the hospital, he was running around the wards being funny with the nurses and, you know, so it took probably a day until I started seeing him again. But it did worry me, actually, because one part of it. They took us in for a CT and a chest X ray to make sure he didn't have any fluid on his chest or brain. And when they said that that was an option, you know, that that could be a thing that they wanted to check. Me not seeing him, how he was, I just thought, oh, my goodness, is this why he's not him? You know?
Scott
Yeah.
Tom
But luckily all of that came back negative. So it was just him exhausted from fighting for his life.
Scott
Yeah. Oh, it's really crazy. Wow. Here's what makes Twist different. It measures the volume of insulin delivered with every dose using sound wave technology. That gives it the ability to recognize a blockage quickly, allowing you to step in and deal with it before things potentially get out of range. It is also the only automated insulin delivery system that can be controlled from an Apple watch. So you can discreetly check in, enter carbs, or deliver insulin Right from your wrist. You can also set your glucose target anywhere from 87 to 180 milligrams per deciliter and adjust it for different times of day. So if mornings, workouts, school, work, or bedtime all need a little different approach, Twist can flex with that. And here's a real life example. You enter carbs, then something changes, and you do not actually eat what you planned with Twist. You can go back and correct or remove the carb entry, and the system adjusts based on the new information because diabetes does not always follow the plan. And your tech probably should not expect you to either. So at what point do you start trying to understand type 1 diabetes? Or is it just a fight for life the entire time? Or is there a moment where you think, like, okay, he's stable, that we're going to be leaving here one day, and what do I need to know?
Tom
Yeah, so for the first probably day, because, I mean, by the. By the time we got settled down in the room and were sort of left to our own devices on the first day, me and my wife had been up for 39 hours at that point. So, yeah, anything that went in on that day was sort of a blur, you know. But the next day, they sort of sat down with us, explained to us what type one is, you know, what the treatment is. And at first I was sort of like, oh, could there be something that, you know, makes it look like it's diabetes but isn't? Because I was thinking, I don't want my son to have this lifelong illness.
Scott
Sure.
Tom
They're like, no, it's diabetes. Okay. You sure?
Scott
You sure it's not just a cold? And it's going to go, yeah, yeah,
Tom
yeah, you sure can. Could be, you know, he stubbed his toe or something.
Scott
I don't know if you've ever heard me say you. You've been in this a little bit of time. You probably haven't heard this, but I think Arden had type one for I don't know how long. Honestly, I didn't know much about it back then when she was first diagnosed. Right. But she clearly had these couple of days where her honeymoon was so significant that she almost didn't need any insulin at all. And after maybe the second day of it, I called my friend who's also my kids or was my kid's pediatrician. They're older now, they don't have a pediatrician anymore. And I prefaced the conversation by saying, I know I'm crazy. Just tell me to shut up and get off the Phone. But is it possible Arden doesn't have diabetes? That you got, like, somebody got this wrong because I haven't had to give her insulin for a couple days. And he was like, yeah, no, man, she's got type one. Try to let that go if you can. I was like, all right. I didn't understand actually, back then nobody said honeymoon or. I think that wasn't a thing anybody actually ever said to me. So anyway, it was just these magical couple of days where she didn't need insulin and, and immediately your brain goes right to where yours was. Like, maybe it's something else, you know?
Tom
Yeah, yeah, absolutely.
Scott
Yeah, well, yeah, yeah. The tiniest bit. If you just think like, oh, maybe, you know, maybe you were talking about the exhaustion and not being able to remember anything from it. That hit me while you were telling the story. I'm like, I wanted to ask you, I didn't want to break up the story, but I was like, how, What'? The flight like from Cape Verde back to uk like, how long had you been traveling?
Tom
So we got up the, the day we were left to fly. We Woke up at 6 because we had to get everything packed and out of the hotel by like 11, 12, I think it was. And then it was sort of three hours to the airport there, eight hour flight, three hours drive back. So we'd been traveling for, you know, over half a day.
Scott
And not only that, but the evening before, you weren't really sleeping, you were staring at the baby, right?
Tom
Oh, yeah. Every sort of 20 minutes. I was waking up holding his chest, seeing if he was still breathing.
Scott
Yeah. Isn't it, isn't it really magical kind of what your body can do? Like in any other situation, if I told you to stay up that long, you'd fall asleep. You know what I mean? Like, you wouldn't be able to do it. And suddenly it's for that kid and you're like, well, it's no problem. It's magical. You're also making me think of, you know, I had a gentleman on maybe 6 months ago whose child was in a very similar situation and passed away. They didn't get to the, they didn't get to the medical care and. Well, they did, but the medical care kind of didn't, didn't help them correctly. And it just, it, it's. I'm so happy that's not your situation, but at the same time, like, I don't even know if. Do you know how close you were to that going the wrong way? Have they ever talked to you about It.
Tom
Yeah, not really. I mean, only from the reaction in the icu, you know, how quick they were, because it was early in the morning. You know, they were calling in the diabetes specialists and, you know, ICU specialists to come see us and prepping ambulances for us and stuff. So at that point, I think it was quite close.
Scott
Yeah.
Tom
I wonder, you know, if. What if it was one more day on holiday sort of thing.
Scott
Oh, for sure. I mean. I mean, I. I don't want to talk about it like that, but I. I think from your description of the Kussmaul respirations with the breathing, you know, the skin color changing, listlessness, then the. The noises he was making, I mean. I mean, I'm so happy for you and him and your wife, but, man, you guys were. You were. You were dancing with the devil. I don't even think you knew it, you know, so.
Tom
Not at the time.
Scott
Yeah. Yeah. So tell me what happens then? I mean, this is a very short period. Like, you don't know. You still don't know about diabetes. You're only like, a few months. You're a few months into it.
Tom
Right.
Scott
But, like, where's the learning begin? Like, so what's the first thing someone tells you?
Tom
What?
Scott
Why do you know who I am? Three months later?
Tom
Yeah, so the. The first day after everything happened, the next day, we were having visits from their diabetes team explaining to us, you know, we'd see diabetes specialists, we'd see the nutritionist, we'd see the. The head of the diabetes. I don't remember what it's called, but, like, they've got a whole team there in the hospital for the diabetes. And so the doctors would visit us as well, and each one would explain a little bit at a different part of the day. And so as the day went on, they explained to us what they're doing, because I think he was. He was still getting insulin through an IV or the cannula before maybe for another day or so until his levels evened out. I can't remember exactly, but we didn't start doing the pens until a couple of days in, I think.
Scott
Okay.
Tom
And they. They started helping, getting us to count our carbs, sort of, you know, quizzing us on it, seeing how we do, checking our notes, showing us how to do it and all that with the finger pricks and everything. And by. So we were in the hospital for seven days, I think six or seven days. And on the very last day is when they give us the sensor where the glucose libre. We've got a Dexcom 6.
Scott
Okay.
Tom
I think they wanted to give us a 7, but at the time there wasn't a pump that was for his age that worked with a Dexcom 7.
Scott
Okay.
Tom
Or as how is explained to us anyway.
Scott
Well, so they gave him a pump too.
Tom
No, so that they wanted us to have a few months at home doing it the old school way, you know, with a pen and that. I suppose. Not the old school way, but the old school way from before. A pump. Yeah. So they wanted us to really be sure with, you know, in case the pump ever went wrong or for whatever reason we. We couldn't use the pump. They wanted us to be able to have something to fall back on, which I think is why they left the sensor until the last day. They wanted to make sure that we were confident on our own with the
Scott
testing with the like finger sticks and everything.
Tom
Yeah, exactly. Yeah.
Scott
How does he. How does he deal with that?
Tom
He's really good with those, actually. So the, the pension, he doesn't even bat an eyelid with so much. So we give him one to play with every now and then without a needle and he'll even lift his top up and pretend to put it in his belly so that he's fine with. And the finger pricks. He. He really is fine with that as well. We call it an ouchie. But he just does a pretend ouch. He goes like. Like as a joke sort of thing. He's really good with that. But now again, so he's nearly 20 months. So he's about a year and a half, basically.
Scott
He's got a whole personality.
Tom
Yeah, he really does. He's such a little unique boy in the best way.
Scott
Tom, that's wonderful.
Tom
Yeah.
Scott
I'm sorry, but, but so they. So you're doing pens right now with the cgm?
Tom
No, so we've literally just in the last couple weeks got yipso pump.
Scott
I think it's called ypsomed.
Tom
Yep. Yeah.
Scott
Yeah, I know.
Tom
Yeah.
Scott
Okay.
Tom
Because I, I think again, like they, they mentioned to me before, it's the only one for under two years that they recommend.
Scott
Okay.
Tom
At least with our health system, you know, that's what they say.
Scott
How is that paid for? Is that like, do you guys have private insurance or does the. The government.
Tom
Yeah, this is all on the nhs, the National Health Service. So from the start, we haven't paid a penny, basically.
Scott
Wow.
Tom
All of our prescriptions are free. And because it's a lifelong condition, he gets them free for life. We have they constantly. You know, he's got access to the children's ward at the hospital until he's 18. He. He gets regular calls from the diabetes teams, dietricians and stuff like that. In fact, just before I come on with you, we were having an online call with his diabetes doctor, talking about the pump and, you know, changes to make in that.
Scott
Very nice. So have they offered you the Daphne program?
Tom
No, I haven't even heard of that.
Scott
So look into that if you care. But it's a. It's an educational program about managing type 1 diabetes that's unique to the UK and people really love it. So if it's. If you think. If you feel like you need more, that's a good place to look cool. So they're making changes to settings. So, I mean, how much insulin is he possibly getting? How much does he weigh?
Tom
He weighs 12 kilos now.
Scott
Well, that's how many. Hold on, I'm not going to figure that out on my own. Is that 24?
Tom
It's £26.
Scott
26. Okay.
Tom
I made a little conversion, Chuck, on Excel this morning because I thought this might come in handy when I. Well, yeah, because when I first started listening to your podcast that you're, like, saying, oh, your guests were saying my kid was, you know, his blood glucose level was 300. And I'm like, jesus, that's huge. You know, that's crazy. But then I was like, oh, okay, yeah, she's a different unit to us. I should have guessed. But.
Scott
No, but I mean, it really does outline all the things that are new and that you're going to learn over the next year or so. Just every day might be a new experience, you know?
Tom
Yeah.
Scott
Who's. Who's in charge? Like, is like, what's your division of labor set up like on the diabetes? Are you guys splitting it? Is it more you, more your wife? Like, how are you handling all that?
Tom
So I would say I'm probably the most hands on with it in charge of the overall, you know, diabetes care. But my wife's. My wife doesn't work two days a week, so she has him two days a week. And she's really good at looking after him. But stuff like when we change his sensor or when we change his cannula for his pump, she's still a bit wary about that. So she's done it a few times, but not as, you know, I do it most of the time. You said something with the pens and.
Scott
Yeah, yeah. So who it falls to is. Okay. You both are pretty comfortable with it right now.
Tom
Yeah.
Scott
And you Mentioned earlier about her not handling, like, big, big issues. Well, is she anxious?
Tom
Yes. Yeah, she is anxious.
Scott
Okay, interesting. So is that rearing its head for her? Is she able to overcome that for this problem, or how is she dealing?
Tom
Yeah, I think so. She. She did go to her doctors about it. Chairs are getting a bit creaky. She. She has gone to the doctors about it. So she's getting treatment for it. But before that as well. She. She does handle it really well. It's sort of. Once she's done it a bit, she's sort of overcome it, if that makes sense.
Scott
Sure, yeah.
Tom
No, even with her jobs and stuff, she. She went into a supervisor role with us, and at first she was really worried about it, but now it's like one of the most profitable bits in the company.
Scott
Oh. So she worries up front, then figures it out and then kind of lets it go after that.
Tom
Yeah, exactly.
Scott
And finds a different thing to worry about.
Tom
Exactly. Yeah. Same with when she. She was learning to drive and she was like, I'm never gonna do it. Then she passed with no minors or anything. You know, flying colors.
Scott
That's the difference between men and women, by the way. We blindly just believe in ourselves. And they doubt themselves even when they don't have to.
Tom
Oh, yeah, Blindly to a fault.
Scott
Oh, absolutely. Ask me how perfect I am, I'd be happy to tell you about it. Well, that's nice that she went to do something for herself. Was that precipitated by the diagnosis of your son? Did she feel like, I need to work on this now?
Tom
I think she's dabbled with it in the past as well, but never really found anything that's worked with her.
Scott
Okay.
Tom
But this time I think she was just. She. She never gave it a proper try. But I think this time she's like, I'm doing it for Kylo.
Scott
So it's waiting to see how that happens. That. That's a very common. I guess a very common story for people. They. They will. They will put off helping themselves over and over again. But if you give them the opportunity to help themselves so that it'll help a loved one, they don't seem to have any trouble with it. It's really, really very interesting. Your wife doesn't have anything else, though. You mentioned thyroid. Is the thyroid on her side of the family?
Tom
Yeah, thyroids on her side.
Scott
Has she had her tested ever?
Tom
No, I don't think she has, actually.
Scott
Do you think she has any symptoms of it?
Tom
To be honest with you, I don't
Scott
know what the Symptoms are hair falling out, dry nails, anxiety, trouble being rested even though you've slept. That's a big one. Is she tired all the time?
Tom
Yeah, I think she can be. Yeah.
Scott
Yeah.
Tom
A few of those sounded like some boxes to tick.
Scott
It work. It's worth looking into.
Tom
Yeah.
Scott
Yeah. Because maybe. Because you will see. Sometimes you will see people get put on, like, anxiety medications or SSRIs or something like that for, like, depression or, like, low mood or something, but those are. Can be. Can be side effects of. Of a thyroid issue. And if she's got it in the family and your son has type one, it's probably worth looking into.
Tom
Yeah, I will get her to do that.
Scott
Thank you. Put her on episode 413 of the podcast if she's interested. It'll explain kind of how to. How to look. You know, all about it, actually, even so much as saying if I have symptoms but my labs don't come back as out of whack, that doesn't always mean something. So there's a certain test to look at to see if maybe the medication would be helpful. Anyway, it's just one little pill a day.
Tom
Yeah, perfect. Okay, I've written that down.
Scott
Good, Good, good, Good. Yeah. Episode 413 will explain the whole thing. Okay. Well, I just wanted to get that out of the way because you mentioned that you mentioned her being anxious earlier, and then, you know, that's it. I have a list here for you real quick. It's fatigue, low energy, feeling sluggish, weight gain or difficulty losing weight, feeling cold more easily than others, constipation, dry skin, thinning hair or hair loss, puffy face, hoarse voice, muscle aches, weakness, cramps or joint pain, slow heart rate, depression, low mood, brain fog, memory problems, trouble concentrating, heavy or irregular periods, low libido, elevated cholesterol, swelling in the hands, feet around the eyes, brittle nails, slow reflexes. That's, you know, some stuff to look for. You don't have to have all of it.
Tom
No, a lot of those ticked.
Scott
Oh. Oh, look at me.
Tom
Look at me.
Scott
Saving a life. Here I go.
Tom
Tom.
Scott
All right. Sorry. I just. I know. I imagine that people have been listening for a long time, are like, oh, Scott's being sarcastic. And people who picked this episode up as the first ones, like, that host. Seems like a prick.
Tom
I'm sure they don't think that.
Scott
Well, some of them do. You should see the reviews. Now, anemia is also something to look for. So if she's getting a full thyroid panel, she might ask them for a full iron panel. At the same time.
Tom
Cool.
Scott
Okay.
Tom
I, I will send that her way.
Scott
There you go. Then the next kid gets named after me.
Tom
Yeah.
Scott
Although you guys are going to need a good solid five years before you try that, I bet.
Tom
I think, I think we're done.
Scott
Tom's like, I was like, I felt like I got hit by a truck. I'm. I'm good, man.
Tom
It was funny because we were like, I'm in arm. We're like, maybe if, you know, in a few years we're financially in a good spot, we'll try for another. And then this happened. It's like, now we're done. We're good.
Scott
That's pretty good. Well, listen, no, no lie. We. We really thought we were gonna have three kids and our second got diabetes and we were like, maybe we should stop. Because it just, I mean, it was, it felt overwhelming, you know? Yeah.
Tom
I mean, I've listened to a few episodes your podcast now as well, and it sounds like when one kid's got diabetes and one hasn't, even if it's not true, a lot of the times the kids feel like this preferential treatment, so.
Scott
Oh, that was going to happen whether one of them had diabetes or not.
Tom
Yeah.
Scott
I bet they're gonna be like, he likes her better than me. Wait, what? No, I don't. Yes, you do. And then, and then you think, well, okay, well, obviously I'm being nicer to that one than the other one. You go to the other one, you say, hey. And they're like, oh, no, you definitely like her better than me. And I'm like, oh my God. Awesome. Glad we did this.
Tom
Yeah, right.
Scott
No kidding. So, I mean, I don't know, I. I guess I'd just be interested in hearing anything like you have to say because it's also raw for you, like, what do you feel like is worth sharing with people right now?
Tom
Wow. A few things, really. A big one for me was sort of how well Kylo was treated in the hospital with their staff on the children's ward from. So for the first, I think three or four days we were in there. It was one on one care with just one nurse. She wasn't seeing any other patients other than Kylo or Kyla wasn't seeing any other nurses other than this one nurse. And so they could really sort of focus on him and make sure he's getting the best treatment possible. And even from the first day he was in the room, they have some entertainers on the ward, full time entertainers that they have like a play area There. And they. They brought him a. A blanket that was knitted by someone that donates blankets to the hospital that he gets to keep. He got a little stuffed bear someone made that he gets to keep. And they sort of was. Were asking us, you know, what's he into? And we said stuff like, he likes, you know, he sounds like he's a dog, but he likes balls and bubbles and lights. And so they come back a little while later with a load of balls, some bubbles and a disco light.
Scott
You know what he love you throw a ball. He loves to run and get it and bring it back. He loves that you give him a treat. Fantastic.
Tom
Yeah, exactly.
Scott
Balls and bubbles, huh? No, listen, I like those things. So actually, I was walking out of somewhere a few weeks ago. It's this windy day, and it was a. It was a scenario. Listen, I'm just going to tell you. I was at a reptile convention. I don't need to be judged. But I. I was at that, right? And I was walking out and this little girl had a bubble wand and she dipped it in the thing and just walked out ahead of people. And it was so windy that the parking lot just filled with bubbles. And I have to tell you, it was really lovely. It made me feel like, well, this should happen more often, you know, So, I don't know, we should. Bubbles and balls is a good idea maybe. So they bring them all that stuff. Then Benny Hill runs through. They're really trying to entertain them. Right?
Tom
Yeah, exactly. Well, yeah, that's another thing that, you know, each day they have someone visit the hospital. So one day there was a sort of someone bringing a dog around that goes to see all the children. Another time there was a lady with a guitar that, you know, plays music for him and stuff like that. So it was full on trying to keep him as happy as possible.
Scott
Yeah, it's very nice. Well, they want him to have a good experience at the hospital. Right. Because you might have to come back one day and it'd be nice if he had a good feeling about it.
Tom
Um, yeah, for sure.
Scott
So what do you. I mean, how much insulin does he use in the course of a day?
Tom
Uh, I think at the minute it's about nine units of insulin.
Scott
Okay. How much of it's basil, do you know?
Tom
No, I didn't write that down.
Scott
Do you shoot the basil?
Tom
Once a day when we were on the pens. We did it twice a day.
Scott
Okay.
Tom
We did, I think one and a half units at night and one and a half units in the morning was that levomir. It was levomy. Yeah.
Scott
Yeah. Okay, so you. That's. It's smart for a little kid like that. So they split the basil when you were injecting one and a half. One and a half. And then obviously gets food with meals and like, what's a. What's an average like size meal? Carbs and insulin for him.
Tom
Yeah. So this was the tricky thing because sort of his bedtime milk was bedtime. It was perfect because it was half a unit of insulin. So that worked out great. But whenever we were giving him sort of dinners and stuff like that, he'd. It'd be like 1.1 units or 1.4 units of insulin. And then you have to decide is he going to eat more? Is he gonna, you know, when you don't even know he's going to eat that to begin with, or do you eat under bolus and then try and figure out afterwards? So, yeah, when it was on the pens on that half unit increments for a kid that small, it was just impossible.
Scott
Still a lot. Yeah, a half unit's still a lot. Hey, you just said that's the tricky part. I don't want to break your bubble here, but like you're going to say that about 8,000 more times in the next 10 or 15 years. The tricky part is going to keep changing. Wait till it's like he won't pre. Bull. He's 15. He won't. Honey, he won't pre bolus his meals and you'll be like, oh, no, that's the tricky part. Then it'll be the next thing and the next thing and the next thing.
Tom
Keep moving the goal posts.
Scott
Yeah, but you're paying attention really well already. Like to little things like you seem on top of it. What do you do for a living?
Tom
I'm a manager at electronics factory.
Scott
Okay. So production people like overseeing things, paying attention to details.
Tom
Yeah, I mean, it's only a small company. There's only about 15 of us there total. But yeah, trying to keep everything running, keep you on top of things. Yeah.
Scott
You feel like you're doing that with the diabetes too, I imagine.
Tom
Yeah. I think I've got quite a scientific mind and quite. At school it was more the sciences than the arts for me. So I. I've got that kind of thinking where I. I figure find problems and solve them, basically.
Scott
Yeah. Well, that'll help you with this. Is it making you crazy or are you doing a good job of stepping back from it?
Tom
At times I think there's been stages so when we first went home, I was probably. I don't sleep well anyway. I probably sleep about five hours a night. Interrupted. But when we first got home, it was like every half an hour I was awake just checking his levels, seeing if he was all right.
Scott
But.
Tom
But that. That sort of wavered. Now when we've got the pump, it's back to that at the minute, just. Just so I know that it's all right and then I can leave it again.
Scott
Yeah. So I mean, you have it on your phone as well, right?
Tom
Yes.
Scott
Yeah. So you don't have to go to where he is, but no. Is he having many lows overnight?
Tom
It's been mixed at the minute. So the diabetes team, they. When we first got discharged, they'd call us every day to sort of tweak levels and that, and then they went to twice a week, and then they went to once a week where they'd call us and help us tweak some levels where we thought it was necessary and checking with us. But yeah, he, he, he was going low in the night quite a bit, and I think that's when they switched his basil to twice a day instead of once.
Scott
Can I ask you, before you split the. Before you split the lever, were you shooting it at night?
Tom
Yes.
Scott
Yeah. And then it was too heavy and he was getting low overnight.
Tom
Yeah, exactly.
Scott
Okay. Okay, well, that's good. By the way, that's well done. Levomir is an older insulin, but it's perfect for something like that. Yeah, yeah.
Tom
It's funny, actually, because we're just about to swap over to Lantris.
Scott
Is it Lantis Lantus, when they put you on the pump instead?
Tom
So just as a backup, because I think they're stopping. Making Levmoral. Stopping it in this country, at least they are.
Scott
By the way, if you want to hear a lady who is in Washington, D.C. trying to fight against it, she's been on the podcast a couple of times.
Tom
Oh, really? Yeah.
Scott
She's trying to figure out a way for them to keep making lever. I don't know if that'll work. That's sounds like a big fight to me. But it's interesting that she's trying for it so much. Are you finding community online or where are you finding people to talk about all this?
Tom
So I sort of talk to, like, my friends and work friends and that in passing about it a little bit, but other than that, I just really listened to your podcast, to be fair. But I think my wife's on some Facebook groups and actually we got really I don't know if you'd call it lucky or irony or something, but my wife's auntie is a pediatric nurse who specializes in diabetes.
Scott
Oh, my God.
Tom
Okay, so. So she was actually, when. When we got diagnosed, she came to the hospital and stayed with us for a while to help us with it as well.
Scott
Oh, nice.
Tom
But, yeah, it's a sort of a lucky but unlucky thing that we've got someone really close to us that, you know, helps us with that.
Scott
Do you know how she got into that line of work?
Tom
I don't actually. I've never really asked her. Yeah, but, yeah, not because of diabetes in the family.
Scott
No, no, that's what I'm saying. Yeah. It's not in the family, but she ended up there, so. That's interesting.
Tom
Yeah.
Scott
Sorry I cut you off. I apologize. What were you gonna say?
Tom
Oh, goodness, I can't remember already.
Scott
Sounds like that's over. That part is gone. I don't know what you're saying. Hey, well, let me.
Tom
It was the communities on it.
Scott
Yeah.
Tom
So I think my wife sort of dabbles in it a bit, but at the minute, we haven't really seeked out any communities nearby. We're just sort of getting. Getting to grips of it ourselves. And then I'm sure probably we'll try and, you know, see some more people with it. But to be honest, listening to the podcast for me is just. It's interesting to hear other people's stories. That enough for me is a bit of comfort that this not so bad. And it's not, you know, just you that's going through this, if that makes sense.
Scott
No, no, it. It more than makes sense. I'm glad that you found it and that it's been helpful for you. I think that some of the unsung support systems of having a chronic illness in or having one in your family community is a big part of it. It really is. That feeling of like, it's not just me is very helpful.
Tom
Yeah.
Scott
You know, and especially in a situation like you've been at this, what, like three or four months, it probably feels like a lifetime. And I'm sitting here fully remembering the first few months of my daughter's diagnosis. And she was 2 and she's going to be 22 in like a couple of months.
Tom
That's crazy.
Scott
Yeah. No, it really is. I used to be young. I. For sure. I for sure was. You know, it's. It's a long process and it will change over and over again, I think. You know, again, another Another tool that'll come in really handy that's very in specific is just trying to be flexible and, you know, keeping up with. Yes. Day to day, but understanding that things come and go and they change. You have to be able to let go of them or not take things quite so seriously at certain times. I think that's why some of these conversations are probably helpful to you because they're light hearted. You know, we're talking about something really devastating and I mean, listen, I don't even think we've ever just said it out loud yet, but like, your son just about died. That's. Yeah, that's something, man. That's a hard pill to swallow. And that's going to come back at you a couple of times like, you know what I mean? Like, yeah, the fragility of life is, is like once you get through this part here, you are probably going to have a moment where you reflect on this, you know, and it'll be hard
Tom
to deal with a few times. To be fair, already every now and then I'm just like, you know, the, the severity of the situation weighs down on me and I'm just like, oh my goodness. It's funny, actually. I was, I wrote up some notes for doing this podcast just so that I had everything to hand so I wouldn't forget anything. And my wife came upstairs, I was typing this, she came up and I just, my face was wet with tears and I was just like, yeah, oh yeah, no, this is a sad thing. This is tough.
Scott
Yeah, you're acting like, oh, I'm just going to give you a high level overview of what's happened to us over the last few months, but it's a, it's a devastating, I mean, event. It, it just is.
Tom
Yeah.
Scott
You know, and, and so then that mental health side of it becomes really important too, because you, you hear people in all, you know, in all forms and factors of, of being involved in diabetes and sometimes they're fighting with their spouses and sometimes they, their anxiety is crippling and sometimes they're so laid back that you think like, geez, pay a little more attention to it. You know, like, there's, you don't know which way you're, you're going to kind of go to, but if you have a, you know, if you have a bit of a plan and you're able to stay flexible with that plan to some degree and, and realize that things are going to continually change and that they're really. The only way to getting to like, calm is through experiences I think that's really important to. Just to understand that, you know, definitely, every time something goes wrong, you know, quote unquote, it's a great opportunity to just look back and say, okay, what happened here? Like, how can I do this differently next time so that we have a better outcome? And those experiences end up being what teaches you. Like, you need the basic tools, and if you go through, like, I mean, if I was you, if you haven't, I'd listen to the Bold Beginning series of the. Of the podcast, and it'll help you with all this, you know, and. And then one day you'll want to level up a little bit. You. Maybe you jump over to pro tip series, but overall, like, you just have to have the experiences. You have to pay attention to them and then use them as data for next time. Yeah, yeah.
Tom
Like not having another kid.
Scott
Well, it's just like, it. You're. It's. It's like learning to walk all over again. Nothing makes sense. Nobody tells you anything. I mean, even that there's phrasing. You know, people are bolas, Basil, Levomir, lantis, Ipsamed. I mean, look at all the weird words you've said in the last 45 minutes already. You know, like the words you didn't know four months ago. And that's overwhelming, too, you know, so just take your time, you know, and then, I mean, my best advice might be just leave yesterday behind. I try not to carry any of the anxiety from today into the next day because it'll build up on you. And. And I should say this, too. You gotta sleep.
Tom
Yeah. You know, I've just never been good at sleeping, so I've. I've tried to get that figured out, but last time I went for a sleep study, and they checked me for one night and they said, don't sleep on your back. Okay, thanks.
Scott
Big help. Appreciate it. Yeah. Yeah. Awesome. Good. Good use of my time. No, but I mean, listen, maybe you're a guy who gets five hours of sleep and you're okay. What I'm saying is don't get exhausted.
Tom
Oh, yeah, yeah.
Scott
And the broken sleep is hard on you. Like, you have no idea right now. But, you know, I did what you talked about, like, getting up here, checking again. I did that for years. It, like, devastated me, but I never knew I was devastated by it, like, physically. And it wasn't until one night I was sitting up, like, staring at Arden's CGM or doing whatever I was doing or testing her a million times, and I think my wife woke up in the middle of the night. And she looked at me and I was just laying there with my eyes open and she's like, what's wrong? And I was like, I'm gonna have a heart attack. And she's like, what? I'm like, my heart is pounding. I'm so exhausted. Like, I'm so freaking exhausted. She's like, go to sleep. And I was, I was like, I can't, like, you know, like, you know, and. And truth is, you know, I could. And you know, 20 years later and she's still here and doing great. So, you know, there's going to be moments where you're gonna have to be up in the middle of the night like anything else, but you absolutely have to find some sort of a balance. I mean, looking for balance between health and good outcomes and your mental health and your physical health. Like, it all has to work out. You can't give yourself away for him or give him away for you. Like, none of that's gonna work, you know?
Tom
Yeah, absolutely.
Scott
Wow. You grew up pretty quick here. You went from like 30 years old, like, hey, we got married finally, you know us, we just busy, busy, to
Tom
like, yeah, it was all sunshine and roses. Married, kids, and then there you go.
Scott
Exactly, yeah. You should probably have sex again in like three years. Sorry. That might be true. I apologize. But it does bring up a good point. It's tough with a baby, but if you can find somebody in your life, your mom, her mom, somebody, you know, that could even be a caregiver for a couple of hours, you guys could go out once in a while, like get away for a few minutes. That would all be a really big deal for you.
Tom
Oh, I do have to say that my mum has been the most amazing helper out of all of this. So before he had was diagnosed with diabetes, she'd have him two days a week. She's retired. She was in the fire service, so she got to retire at 55, which was pretty nice. So. And she loves the kids, so she just wanted to be a, you know, help me and my sister. We both got kids now and just wanted to help with, you know, look after them because that's what she lives for. And since he's been diagnosed, she's still doing that. She still has him twice a week while my wife goes to work. And in fact, just last weekend she had him for the night while we got to have a little date night and fall asleep on the sofa at 9 o'. Clock.
Scott
Good for you. That's awesome. Also, if my Kids are listening. If you make kids, I will immediately retire and take care of your kids. So that sounds pretty great, actually. No, seriously, I would enjoy that. Yeah, yeah. I don't know how much you know about me still, but I was a stay at home dad most of my life, so. Right, yeah, yeah, yeah. So I would, if anybody wants to make a baby and then just give it to me for a while, I'd be good with that, you know, I,
Tom
I, So every now and then, whatever our situation is, I have to stay at home with Kylo while my wife or someone goes to work. And they're the best days in the world when I've just got him and me doing whatever we want to do. It's just.
Scott
No other response? No, no, no other, forget, no other responsibilities. There's, of course there's responsibilities, but there's no other thing that supersedes that. And so everything else sort of fades away and you just, you know, you're just there doing that thing.
Tom
Yeah, absolutely. He's just such a character. I look at him and go, this is perfect.
Scott
We used to have this little house when Arden was little. And I can still see the first time, like she stood up, like by the television and walked across the room to me. Like, I can, like I can still see it in my head, you know, so. And I don't know what I did that day. Probably laundry, made food, watched her walk. That was probably the end of it, you know? Yeah, yeah, yeah. So don't. Well, listen, it sounds like you're doing well. You don't feel overwhelmed or anything. I mean, or so much. You do, but not to the point where it's knocking you over.
Tom
Yeah, I mean, I, I feel like there's still some days where, you know, a lot goes on. He's high and low every other hour sort of thing. You're like, oh, this is so much work. But for the most part he's, he's so good with it. We're getting good with it and, you know, we're just living a happy life. And you, we just look back and go, nah, it's not too bad. You know, it could have been worse. He could be in a wheelchair. He could have some brain disease or something. As far as illnesses go, it's pretty manageable, isn't it?
Scott
That's a very reasonable expectation that it is pretty manageable. You just need to know certain things. But how do you get those things? So what happens to some people is they don't hear that information or it doesn't get delivered to them or something like that. And I guess I'm going to figure this out. How did you find a podcast about diabetes but at the same time you have a decent microphone and I'm now noticing in your picture that there's egg carton on your wall. So your room sound. Why is your room sound dampened?
Tom
So me and my friends like to play video games, so we just stream every now and then. Stream to no one. But I still enjoy sort of putting the videos together and, you know, making it a bit of fun. So that's it, really?
Scott
That's what it's for. Does that.
Tom
Yeah, it's, it's for good audio so that the three viewers that watch my
Scott
videos are really being delivered high quality content.
Tom
Yeah, they're like, wow, this is, is
Scott
a good Jim, Bill and Sammy.
Tom
Well, more realistically, me, me and me checking the quality on three different devices.
Scott
I'll tell you what, this sounds great. It looks terrific. If anybody ever decides to listen, they're going to be thrilled with this.
Tom
That's good.
Scott
I just built a. I've been making this podcast in a room for 12 years and I just built a small studio space that I'm, I'm still fitting out and I have a lot of traveling to do over the next month for work, so I'm not going to get to do it in June. But I'm trying to decide right now what to put on the walls for sound. If I'm just going to do like, you know, simple frames with, with fabric over them or if I was, you know, some, some people are like, they do those wood slats, they look all fancy, but I don't know who would, I don't know who I'm worried about it looking good for.
Tom
Yeah, I was gonna say they do some really good looking sound dampening stuff, but again, you're an audio podcast, unless it's for you. You know, I suppose it is nice to go into a space and go, yeah,
Scott
yeah, I'm too old. I grew up broke. I don't care what it looks like. I just want it to work. You know what I mean? Like, there's part of me that would just hang curtains around the walls and just be like, here, that's fine.
Tom
So, yeah, I mean, what, what you can't see in that photo because that's quite an old photo now. But I do have one of my wife's old blankets stapled to the wall in the background.
Scott
And she still married you. That's nice.
Tom
But you don't need this. It's summer. I'll have this.
Scott
She's like, God damn it, I waited too long. Now I'm stuck with this guy. He just put my blanket on the wall. But we've been together for 10 years, so what am I going to do?
Tom
You can't say no now.
Scott
I'm pot committed. God damn it. I didn't know this was going to happen. Now. Yes. I'm not sure what I'm going to do, but I'll probably just build simple frames and hang them. I mean, those sound diffusers working. I mean, I have them in here. I'll probably just move these downstairs and get a couple more. If I'm being honest.
Tom
Yeah, I mean, I think there's a point of diminishing returns anyway where your average viewers listening sort of on loudspeaker on a phone or something, so it doesn't even matter.
Scott
Yeah, there's a. I. I have noticed over the years that bad audio will. Will chase people away and, and so I want it to be a comfortable experience. I also have an editor which, you know, who does a great job of making it sound much better. To the point where sometimes I meet people in person. They're like, you don't sound the way I expect you to. I'm like, yeah, well, yeah, someone's not behind me tuning my voice for you, so. But yeah, yeah, yeah, you wish I had an editor.
Tom
For real life?
Scott
No, for real life.
Tom
The amount of us and, and forgot.
Scott
I try. I think I'm. I'll tell you, in the beginning, I wasn't. I mean, you ummed all the time. I used to. I tell people all the time. I used to hang sticky notes in front of me with words on it with lines drawn through them. Like, don't say that, don't. I used to have connecting words and you know, like, stuff like that. I tried to get rid of as much of it as I could, but at the same time, I don't know. You can't not say. Sometimes it just happens and some of it sounds unnatural if you take too much of it out.
Tom
Yeah, it's too perfect.
Scott
Yeah. Nobody speaks like that'll, you know, if you edit it too well, it'll just sound like it's AI And I have enough content now. I could probably train an AI to make these episodes. So don't give me any ideas. You know what I mean?
Tom
You could retire.
Scott
Like, Scott's been doing this for 20 years. I'm like, no, I just.
Tom
Yeah. Is this AI? How can I check?
Scott
Yeah, you can't Leave me alone. But I am real. You should trust me right now. But, you know, sometimes people are like, oh, would be great if you did video. And I'm like, with who? Like, what am I going to do, Tom? Like, you know, make you set up video and then you capture your video and I Cat, who's going to edit that? Like, who's going to. Like, that's. I. I love it when people say that. Like, it's easy. You know what I mean?
Tom
It adds so many dimensions to it, doesn't it?
Scott
Yeah. And for. I don't know where the return is for that. Be honest with you.
Tom
No, I mean, from my videos, I edit, we play video games, but I have a webcam and I'm like, this just isn't fun entertainment. I'm just staring at a screen.
Scott
There's one guy that made money doing that, and he's still the one doing it. Like, and you probably know who I'm talking about. Like, the guy that plays Call of Duty and he's got the dark hair and he's got like the whole thing. He's made like a life out of it. Probably a millionaire like 10 times.
Tom
Probably a few. But yeah, Nick Merks comes to mind.
Scott
Yeah, him. That's who I'm thinking of. Look at. Yeah, yeah. So my point is, is he's doing it already. He, we don't need you. It's. And I feel that way about a lot of content sometimes. I mean, right now, you know, if you want, you can go hear the same political commentary from a thousand people. Yeah, yeah. Like, at what point do you say to yourself, someone's got this covered. I'm probably, I don't probably need to start up, you know, this whole thing now.
Tom
Somebody's so many fingers in the pies anyway, to get noticed when there's already a million semi famous people doing it is basically impossible nowadays.
Scott
Oh, listen, I. Between you, me and everybody listening, I make an incredibly popular podcast. If I stopped right now and tried to make a different one to start over, I'm sure no one would listen to it.
Tom
Yeah, it's tough, isn't it?
Scott
There's just no way to, like, to get recognized or to get to enough eyes to like, create some momentum I had when I started doing this. I'm pretty certain I was probably the first one to start doing it. So I was ahead already. It was the only thing out there. And I had a really popular, successful blog that I could pimp the out of the. Of the podcast on in the beginning. And, you know, Say to people like, look, I have a podcast. I have a podcast. Plus, back then, social media was actually like, those platforms actually helped you reach people, which that's not even their goal anymore. So, yeah, they're not trying to help you reach somebody. They're trying to. They're trying to get you to desperately try to create an audience so they can sell that audience ads.
Tom
Absolutely.
Scott
It's a different. It's just a completely different animal now. If I restarted right now, I don't think 10 people would listen.
Tom
Yeah, I think I just need a scandal that normally gets shifted.
Scott
What kind of scandal are you looking for?
Tom
Any right now. Made me famous.
Scott
I gotta pop this thing up. I don't know, man. It's some. I. I'm. Listen, I'm famous in a space, but outside of that, the. No one has any idea who I am. And that's pretty nice, actually. Like, I can't imagine what it would be like to walk around all day long with people knowing who you are. It seems exhausting to me. Yeah, it really does. I. I do it for days at a time at, like, events and stuff like that. And there's this thing that happens. Like, you walk out of your room the first time and you're going to go down to a convention floor or to a speaking engagement or something, and there's a voice in your head that literally goes, smile. Like, even when you're walking by yourself, smile, because you come to realize, like, someone's looking at you. And, you know, I've had experiences where I've been standing in public and thought, like, man, my butt itches, but there's really nothing I can do about it right now. And you think you're making it up, but then my wife went with me for the first time, time last summer to something, and we were walking around for, I don't know, half a day, and she just looked at me and she goes, everyone here knows who you are. She's like, it's ridiculous. Like, everyone's like, either looking at you as they pass you or, like, looking back over their shoulder as you're going by. And I think she thought I was making it up. You know what I mean? Because for all those years, and I said, no, I told you, like, this is. It's. She's like, this is insane. I was like, no, I know.
Tom
Yeah.
Scott
Yeah. Then I walk outside and it's over. It's perfect. You know what I mean?
Tom
That's how you want it, isn't it?
Scott
100. Because I'm also not wealthy and there's that old saying, being famous without being wealthy is like torture. Like there's some sort of. Because you. Because you can't get away. Yeah, yeah, I can just get away. I can just leave a diabetes thing and then nobody knows who I am, which is.
Tom
You have to wear a mask to the shops or anything.
Scott
Wouldn't that be something? I just saw a ton of pictures of. Apparently Michael Jackson used to go out. All these weird disguises and there. And I saw like a thousand pictures of him and all these different weird disguises. It's pretty funny.
Tom
Yeah. I think he actually got a shop built and paid actors to be normal people in the shop and not interact with him just so that he could feel what it's like to go shopping.
Scott
Did he really?
Tom
Yeah, something like that.
Scott
Well, that's the fact.
Tom
Check me.
Scott
That's another level of, like, reason why I. I don't think any of us want to be famous. But no, it is really interesting, isn't it, that, you know, so many people have access to the possibility and so they try all the time. Like, I comment all the time that most of the people on Facebook or Instagram or whatever, in their bio, it says digital creator.
Tom
Yeah.
Scott
And I'm like. And I used to go, look, you know, and like, there's three people. I'm like, you're not a. You're not what? You know, like. Like, it would be like if we all just decided we were attorneys and everyone's bio just said attorney at law. And then I said, you know, have you practiced ever? No, but I'm. I'm thinking of it. I'm like, oh, okay.
Tom
So, yeah. What is.
Scott
I don't know what those people are going to do when that dream dies. Is that really a thing people think about, like, copy in it? Yeah, it's. It's. It's interesting because I didn't do this on purpose, so that's why it's confusing to me.
Tom
I think that's where. Where it probably. You know, I think if people try too hard at stuff, unless you really, really want it, some people make it and think this is going to be big, but most of the time it's going to fall to no one.
Scott
Yeah.
Tom
Yeah, exactly.
Scott
Yeah. No, I didn't. I didn't do any of this on purpose. Like, I just. I think. I just. I think by virtue of maybe sharing my story, being open and vulnerable, you know, there being a pathway that started with me not knowing what I was doing to getting to having some decent idea of what was going on. And the fact that I am very unapologetically just myself. So, you know, like, I'm not trying to. I must come off. I don't know, but I must come off authentically to people because I know I am not censoring myself.
Tom
Yeah, yeah. And that's the way it should be.
Scott
Yeah. Somebody was mad at me the other day because I said something and I was like, I don't even know what you're talking about. Like, I. And, and I'm not gonna go look, in case you're wondering.
Tom
Yeah, I don't care.
Scott
Yeah, I spoke. I speak for an hour every day and at the end of it, I never think, like, oh, I should cut that part out. And if I've ever had that thought, then I go, okay, well, I'm not going to cut that part out, but I'll be, you know, I won't say something like that again. Yeah, yeah. It just, I think it's just the only way to do this at this point, especially with so many people doing the same thing. And, and, you know, a lot of them wanted to use like those big, like television announcer voices when they're talking and some people sound like they're doing the local news, you know, when they're making their podcasts and.
Tom
Yeah. Reading off teleprompters and stuff.
Scott
Yeah, yeah. And you can see them doing it too, because everybody makes video now. I'm like, you're reading this? Like, yeah, why don't I get an audio? I don't need you.
Tom
Yeah, yeah.
Scott
Right. Either talk and say what you think or not. And, you know, it's funny because, you know, you and I could have this conversation tomorrow for the first time instead of today and I'd probably say different stuff to you.
Tom
Yeah.
Scott
You know, so I don't know. I think that's really interesting and valuable. So tell me, like, what do you think is coming? Have you, have you tried to imagine ahead three more months, a year? What are your expectations?
Tom
So at the minute, I think we're still in a bit of a bubble because he's so young. We've, you know, we've got three, four years. No. Yeah, two to two odd years until he starts, you know, nursery and stuff properly. We were going to get him in nurseries sooner, but now we're not so sure. We think we might just look after him for a bit. But at the minute we're in this sort of bubble where we're in control of everything. But the more I listen to your podcast and the horror stories of schools and stuff like that. I'm like, oh, well, that's around the corner. You know, soon we're gonna have to start thinking about neither of us being there with him and relying on strangers and that. Yeah. So I think at the minute we're coasting, but as soon as that comes, we're going to be. It's. It'll be the next thing.
Scott
Yeah, no, exactly. It'll be the next. It'll be the next thing and the next thing. Does the ipsamed pump have an algorithm or is it just a manual pump?
Tom
No, it does have an algorithm. I checked with the doctor today, actually, because I was wondering. Because it. It was doing things that I was unsure about. You know, there was stuff. Times where he was going high and it wasn't given any insulin and stuff. And I was like, that seems weird, but it always works out. And as the days have been going on with no changes, it's getting more and more in range.
Scott
Okay, good.
Tom
But, yeah, so it's definitely learning. And obviously, like I say, it's hard with a kid that young. You know, for one, we're still trying new food to them and we don't know if he'll eat any of it. And sometimes his favorite meal, he'll be like, I don't want it.
Scott
Yeah, yeah. It's the fun part.
Tom
Yeah.
Scott
That's why a lot of people with young kids, when they pre bolus, they pre boss like a tiny amount and, you know, just enough to like. Like, usually the way I say it is there must be an amount of carbs that you know for sure he's going to eat, like, at least pre bowls for that amount. And then once you see him eating and he's okay and it's happening, then you can put the rest in as fast as you can, but, you know, just to stay ahead of it a little bit. But, yeah, no, I know. I know what you mean. Like, you make something for a kid and they're like, yeah, and then you put it in front of them, like, no. And then that's. You're like. Then you have that fear of like, oh, the insulin's in. Like, what do I do? But, yeah, yeah.
Tom
And. And for a while, our diabetes team was saying, because first they wanted to pre bolus everything, obviously, but then they were saying, because we were struggling, we were pre bolusing, and then he wasn't Ian. And then you're trying desperately to get someone in him before he starts going low. They. They said to us for stuff, you know, he'll have, like, his milk and that pre bolus. But if it's a new meal, or if it's a meal, he might take, you know, half an hour to eat. Playing with it, then just bolus as soon as you give him the food. And that definitely worked while we were sort of trying to get more foods that we know that he'll eat, like peanut butter on toast. That's a guaranteed. He'll polish that off now. So that's a good one to have for breakfast.
Scott
Awesome. Yeah. Yeah, that's. See, that's a great way to just do this. Just common sense. Pay attention, learn from, you know, the past and. And apply it to the future and. And move forward. I'll tell you. Seriously, I'll say it again. The Bold Beginning series in the podcast. That'll help you. If you listen to that.
Tom
It'll.
Scott
It'll help you, like, bring your ideas, you know, full circle and. And give you some good starting points, man. Wow. Geez, you're right at the beginning of this. You're making me feel old, Tom.
Tom
Is it some flashbacks?
Scott
Yeah, no, you're making me feel old. It's. It's not pleasant, so I'm sure you're not old. Trust me, I'm old. You don't say it on the podcast because it turns people off, but I'm gonna be 50. I'm gonna be 55 this summer, so that's.
Tom
That's not old by today's standards.
Scott
Well, I got the GLP now. I can live forever. But, yeah. Yeah, it's all gonna be fine. What do you. So you've. It's so interesting to talk to you because you really don't even know what to imagine yet.
Tom
No, I suppose it's still so fresh. And I wondered about even saying, should I, you know, share my story this early on? Because I don't really know anything in the grand scheme of things, but I. I sort of just wanted to come on to talk about it. So I heard some of your other guests talk, and I was like, I think this would be a valuable bit of entertainment for some people. Or not even entertainment. You know, just.
Scott
It's interesting.
Tom
Something good to hear.
Scott
Yeah, no, I agree with you. Also, it gives us an opportunity because I'm not planning on not, you know, stopping doing this anytime soon. Like, it's a good opportunity to say to you right now, like, go pick a go. Take that link I gave you and go a year ahead on the calendar and drop yourself on the schedule again, because it would be interesting. Yeah, it Would be interesting to hear you, like, walk through this.
Tom
Yeah.
Scott
You know what I mean?
Tom
Absolutely.
Scott
Yeah. Yeah. And if my calendar doesn't go ahead that far, just reach back out and, you know, at the end of the year and I'll be able to. It'll open up for the following year and I'll give it to you then. But yeah, you should. Yeah. Come back in a year. I'd like to hear what. What you figured out, what's changed and just do a check in with you and maybe we'll. Maybe you and I will do that till the end. We'll get you that way. You can.
Tom
This is such a weird reference, but have you seen on YouTube. I think it's for variety or something. Billie Eilish does the same interview with the same questions every year.
Scott
I don't know that, but that's a great idea.
Tom
It'll be a bit like that.
Scott
Yeah, yeah, no, that's every year.
Tom
We'll check on Kylo, how he's been.
Scott
Yeah, no, it's a. It's a great idea. When does he.
Tom
How old?
Scott
When he turns into Darth Vader. When does that happen?
Tom
Well, do you know what's so funny? Is his. His initials spelled kll, which is almost the word kill. And Kylo kills his dad. Spoilers. In Star Wars. So that was already a worry. And then when my wife let me pick his middle name, I picked Loki because I thought that was a really cool name.
Scott
Okay.
Tom
And in the Marvel films, Loki gets his mum killed. So I screwed us.
Scott
You just think, yeah, eventually he'll just be in the house by himself and you guys will be gone.
Tom
Yeah, exactly.
Scott
Yeah.
Tom
It'll have taken us both out.
Scott
Just be riding the dog. Oh, by the way, you don't have a dog, do you?
Tom
Oh, I wish.
Scott
Don't get a dog. Tom. Tom, you don't. You don't have the time for that. I. I know you think you do, but you don't trust me.
Tom
No, you know that that was one thing because we work long hours. We only do four days a week, but we work long hours to make up for it. And I couldn't imagine leaving a dog at home for 12 hours a day on its own. It's just not fair to the dog, is it?
Scott
We're going to a friend's graduation tomorrow. And last night I looked at everybody, I went, what are we doing with the dogs? I was like, wait, did anybody think about this? And, yeah, it's just. It's too much. They're too much. I love my Dog, he's awesome. And even the other one's not bad. But, man, like, being responsible for things is. It's tough. And when they're little, it's fine. Like, you just leave them home. They're fine. Like, you know what I mean? You come back a couple hours later, it's okay. But, you know, I've had to leave picnics to go home to, like, take my dog out. Like, everybody's, like, having Fun on the 4th of July. And you're like, oh, probably that's not a big holiday for you guys, but. But then. Then, you know, like, I drive home, get the dog, take him out. You're like, oh, this is not. It doesn't make up for it. I don't know, maybe.
Tom
No, I think it's more of like a. In your head. It's a nice idea to have a dog because you see it on the movies with, you know, people having a dog that is really smart and that, or really fun. And then you just get a dog and it's just a yappy little thing.
Scott
Yeah.
Tom
You have to look after all the time.
Scott
I'll tell you right now, I'm looking up. I have a lizard in a cage, and he's got a misting system, and I could leave him for days if I needed to. And just somebody has to bop in once in a while and throw a couple of bugs into a cup and he'll be okay. So he has been searching around the entire time you and I are talking. There's a rogue cricket in the cage, and he is just picking through every ounce of this enclosure trying to figure out where that cricket is. And I hope he finds it because it was really loud last night when I was sleeping.
Tom
So what type of lizard is it?
Scott
Well, Tom, let's not embarrass me by going over all the ones I have, but the one I'm talking about right now is a yellow tree monitor.
Tom
Okay.
Scott
Yeah. And she is. She's hungry. Like, she's doing the. Like, she is searching that. That enclosure right now, looking for something. So I'm gonna go give her something when we're done. But I also have a Parsons chameleon. I have an Ambanja chameleon. I have these little, like, Japanese. They're called Tachydromis. They're like these little grass lizards. They live in, like, a little community together. They just run around everywhere and.
Tom
Sounds like a rainforest.
Scott
Yeah, There's a couple of enclosures in here with a lot of tree, like, trees and growth in it and stuff. Like that it's my only ability to be outside while I'm in here making this podcast. But they're gonna move. They're gonna move with me to my new. My, my new space at some point. Yeah, it's gonna be nice. I'll get pictures up at some point. So people.
Tom
I always thought about keeping a lizard, but my mum, I don't think we had a lot of pets growing up, but I don't think a lizard would have been one she would have been too happy with.
Scott
Some of them are very slow moving. So if that's a, if that's an issue like that Parsons chameleon, he's just staring at me. Somebody, he wants me to bring him a roach and then he wants me to leave him alone. These are his whole goals for the day. So he's just seated in a, you know, like a canopy situation on a branch and he's just been looking at me for like an hour now. And I'll, I'll bring him, I'll bring him a bug. He'll eat the bug and, and he'll be good to go. But some of them are very. They're just very slow and they, they live a really interesting. I find them relaxing and it makes me, you know, I don't know, it's. I feel slower when I'm in here with them. Like, calms me down a little bit. So.
Tom
Yeah, yours then.
Scott
Yeah, which I don't have generally, like when I walk out of this room, I'm. I'm working on a. I'm working on like a 21 day, like, guided program, like a, kind of a thoughtfulness program through diabetes. And like, I'm going to go sit down and start working on that again and then I'm going to lose my whole day in that. So. Yeah, it's the thing I would like to offer people for free, you know, where they can just kind of pick it up and, and kind of take like step through 21 days of ideas from the Pro Tip series. So.
Tom
Sounds good.
Scott
Yeah, I've been working on that. So we'll see. But in here. Nice and calm. Anyway, you were awesome, Tom. I really appreciate you doing this with me. Thank you.
Tom
Oh, thanks. I appreciate you having me on.
Scott
No, no, of course. I didn't know you were gonna have such a good microphone or we could have done it sooner. And for everybody else listening, this is what you're supposed to sound like when you come on the podcast. Nice and clear.
Tom
Should we do an advert for Blue yeti?
Scott
Is that all it is. Look. That's a very affordable little microphone. They've been around forever, too.
Tom
Yeah, they're like 80 quid. Not bad at all.
Scott
No, that's what they cost forever. Like, that's even. Even. That's nice. They must just. Well, they're just selling them out there to all those people who think they're going to be digital creators one day.
Tom
Yeah, exactly. In fact, I think I picked it up off ebay. I think it was like 50 quid or something.
Scott
Yeah, yeah, you picked it up off the sad guy who realized that his. His channel wasn't gonna work out.
Tom
Just put a notch in it for each creator that didn't make it.
Scott
That'd be great. This thing gets passed around the world. It's just got little sad eyes on it everywhere. I really thought people were going to be interested in my insurance planning podcast, but they just. They didn't. I don't know. It was such important work, but nobody cared. We do see what happens next.
Tom
Yeah.
Scott
The Internet's going to change so much in the next five years, it's going to be crazy. So, anyway. All right, hold on one second for me. Hang out here because I'm going to talk to you after I hit stop.
Tom
Okay, no worries.
Scott
Thanks. This episode of the Juice Box podcast was sponsored by US MED usmed.com juicebox or call 888-721-1514 for get started today with US MED. Links in the show notes links@juicebox podcast.com the podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense 365. That thing lasts a whole year. One insertion every year. Come on. You probably feel like I'm messing with you, but I'm not. Eversensecgm.com juicebox to learn more and see if you might be able to get Twist from the pharmacy and try it for free, head to visit twist.com juicebox that's visit.twiist.com juicebox or give them a call at 1-877-4-TWIST. That's 1-877-489-4478 and tell them Scott sent you. Twist requires a perspective description and is indicated for people with type 1 diabetes, 6 and older. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of the Juice Box Podcast.
Release Date: July 23, 2026
Host: Scott Benner
Guest: Tom from Dorset, England
This emotional episode centers on Tom’s recent experience as a parent whose 15-month-old son, Kylo, was diagnosed with type 1 diabetes just four months ago. Tom shares his family’s dramatic journey from initial symptoms during a family trip abroad, through a harrowing near-death crisis and ICU stay, to their ongoing adjustment to managing Kylo’s diabetes at home. Throughout, Scott offers empathy, guidance, and reflection, drawing parallels to his own family’s experience. The conversation delves into the trauma of diagnosis, strategies for early management, family coping mechanisms, and the mental health impacts on parents.
“You know, your little baby's dying there, and you're dragging them from Cape Verie to England and then trying to, you know... Dancing with the devil, I don't even think you knew it.” — Scott ([23:13])
Kylo was unresponsive, requiring multiple cannulas and close monitoring.
Tom was allowed to lay in bed with Kylo throughout the ordeal.
The hospital team prepared for possible coma transfer, but Kylo stabilized without needing it.
“That’s pretty awesome that they were able to do that, huh?” — Scott ([14:19])
The emotional toll on parents was immense; Tom describes exhaustion and anxiety, as well as gratitude for support from extended family.
“You feel like an adult and then all of a sudden you're like, thank God my mom's here.” — Scott ([15:36])
“They're like, no, it's diabetes. Okay. You sure?” — Tom ([19:55]) “Maybe it’s something else, you know?” — Scott ([20:03])
“She worries up front, then figures it out and then kind of lets it go after that.” — Scott ([31:16])
“If she’s got it in the family and your son has type one, it’s probably worth looking into.” — Scott ([33:06])
“That feeling of like, it's not just me is very helpful.” — Scott ([46:24])
“I probably sleep about five hours a night... when we first got home, it was like every half an hour I was awake just checking his levels.” — Tom ([42:05]) “You have no idea right now...it devastated me, but I never knew I was devastated by it, physically.” — Scott ([51:12])
“We're in this sort of bubble where we're in control of everything... soon we're gonna have to start thinking about neither of us being there…” — Tom ([69:16])
“Leave yesterday behind. Try not to carry any of the anxiety from today into the next day because it'll build up on you.” — Scott ([50:09]) "You just have to have the experiences. You have to pay attention to them and then use them as data for next time." — Scott ([49:34])
Scott (on perspective):
"You were dancing with the devil. I don't even think you knew it, you know, so." ([23:38])
Tom (on hospital support):
“A big one for me was how well Kylo was treated in the hospital…full-time entertainers, play area, they brought him a blanket, a stuffed bear…” ([36:47])
Scott (on caregiving exhaustion):
“Looking for balance between health and good outcomes…your mental health and your physical health—it all has to work out. You can’t give yourself away for him or give him away for you. Like, none of that’s gonna work, you know?” ([51:53])
Tom (on adjusting):
“He's so good with it. We're getting good with it and, you know, we’re just living a happy life. …It could have been worse.” ([55:20])
Throughout, the tone is warm, direct, and honest, often punctuated by humor and lighthearted moments (e.g., the naming discussions and podcasting jokes), but with constant empathy for the enormity of the experience. The conversation’s candor helps demystify the early days of pediatric diabetes for families and reassures listeners they’re not alone in their fears or challenges.
This episode stands out for its raw depiction of both the chaos and resilience found in the earliest months after a child’s type 1 diabetes diagnosis. Tom’s openness provides solace and solidarity for new families facing similar situations. Scott’s balance of personal reflections, practical advice, and emotional intelligence sets a tone of hope and encouragement while never underplaying the trauma and ongoing adaptation required.
For newly diagnosed families, consider searching the Juicebox archives for the “Bold Beginning” and “Pro Tip” series Scott mentions for additional support and education.