Scott Benner 12/15/22 Scott Benner 12/15/22

#810 Defining Diabetes: Untethered

Scott and Jenny Smith define diabetes terms In this Defining Diabetes episode, Scott and Jenny define Untethered.

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

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

Scott Benner 0:00
Hello friends, and welcome to episode 810 of the Juicebox Podcast well eaten.

I'm excited to have Jenny back today for another installment of defining diabetes. And today, Jenny and I are going to define untethered. This will be the 46th installment of the defining diabetes series. It's a series that takes the time to define the terms that you use every day with diabetes, from fat and protein rise to brittle diabetes, bolusing and everything in between. Check out the finding diabetes short episodes that let you feel like you know what you're talking about. And bonus, after you listen, you will actually know what you're talking about. There are a number of different series within the podcast. So if you go to juicebox podcast.com, to see a list of them. If you do it on a browser, you'll just see it at the top and you notice the finding diabetes click on it. If you're on your phone, there's a little menu like the three lines, it's a menu click on that, then it shows you to find diabetes. There you will get a complete list of the episodes, as well as an online player and links to a number of different popular podcast apps and links to the other series. Like bold beginnings thyroid disease algorithm pumping diabetes variables, ask Scott and Jenny mental health afterdark and the diabetes pro tip episodes. This show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by Ian Penn from Medtronic diabetes, get yourself an insulin pen that has much of the functionality of a pump at in pen today.com The last sponsor of the day is the Contour Next One blood glucose meter. This little blood glucose meter is the bomb. It's the best one I've ever used. I love it. Contour next one.com forward slash juicebox. Hi, Jenny, how are you?

Jennifer Smith, CDE 2:14
I'm great. How are you? Scott? Good. We

Scott Benner 2:16
are back together doing some more defining diabetes episodes. Awesome. And I am going to ask you to define something that I've never done before. What does it mean when people say they're pumping untethered?

Jennifer Smith, CDE 2:35
Oh, I guess there are probably a couple of different methods to that. One that I've seen used enough is they will take a Basal injection, right. But they will reconnect to Bolus with the precision of a pump. Remember that pumps can you know dose down to really really tiny unit markers. Whereas injections mean the tiniest marker you can get as a half a unit if you're really really good. You can do a syringe and maybe get close to a quarter unit ish. But pumps can get much lower than that so many I shouldn't say many but some people who choose basil injected insulin may reconnect to do a Bolus. I've also seen it the other way where the Basal actually is what the pump is doing. And then the Bolus is are either injections or the inhaled insulin like a Frezza. I don't necessarily. I don't think of that in the term of untethered though because technically you are connected. Yeah. So there are a couple I guess, ways to think about it. But in general, it's when you're using a basil and then reconnecting to Bolus so you're still using a pump. But not for basil purpose.

Scott Benner 4:04
Well, the lancet.com which is a reputable diabetes website. All right. Cool. Yeah. says yes, people with type one diabetes who use continuous continuous sub content, who boy continuous subcutaneous insulin infusion or pump therapy often remove their pump before extended periods of exercise, because this approach might result in reduced glycemic control and increased risk of hypo hyperglycemia. And keto Genesis. We aim to assess the efficiency and safety of a hybrid approach. This is a paper they kind of wrote about it, in which the Basal insulin delivery was divided between pump therapy and daily injection of insulin. Okay, well, this is interesting. So, so this is this follows the one thing you said so I guess what happens is, there's a whole kind of modern Heat her. How do I mean this? People who use pumps modernly would not think, Oh, I'll wear my pump and then take it off for hours and hours at a time, right? You know, it's kind of an older, like, it seems like one of those hybrid ideas, people who've been doing MDI forever, they've moved on to pumping. And then they're like, I can't pump while I'm playing soccer. So I'll take this damn thing off and blah, blah, blah. So so you're so the one thing you're talking about here is inject your Basal insulin, right? And then you have a tube pump with a sight that you disconnect the tube and connect it back. Why would someone do that beyond exercise, swimming? Or is there any real reason just not wanting to wear a pump? Or,

Jennifer Smith, CDE 5:42
Yes, not wanting to wear the pump. But like I said, earlier, it's the idea that you get the precision and the calculation of iob. And everything using the pump for the Bolus strategy is one of the reasons and I honestly, I've only had a handful of people who've really chosen to do that method. And sometimes there are good scenarios for doing that, such as a diver, for example, or you're going on a dive scuba type of, you know, vacation, and you cannot, you cannot you can't dive with a pump, relative to pressure. Yeah. So in that case, an untethered approach would be beneficial, you could take a Basal insulin, you could keep your site in. And you could return, you know, back up to the surface, and you could Bolus as you needed to. And then disconnect again, because you've got basil in the background from the injection.

Scott Benner 6:47
Okay. The other thing this reminds me of is, there are, I don't know if it's a specific person from a specific time period, if I've just seen this once in a while, from all different places, but I have periodically seen people be scared of the idea of an insulin pump. Because they think, what if it stops giving me my Basal insulin? And I don't know, like, that's one of the main fears you notice. Right? When people come from MDI, and they go to pumping, they say, but what if the thing you know, it's the thing, what if the thing stops working, I won't get insulin, and I'll be dead. At least I know, when I inject my Basal insulin, even if I forget my meals, this is there. Right? So that's what it makes me think of. And I guess it would alleviate your concern. If you had that concern. This is not something you could do with an Omnipod, though, or? Well, no, you,

Jennifer Smith, CDE 7:40
you could you could suspend the basil, you couldn't remove the pod, obviously, I mean, we all know that. But you could suspend for the length of time that the pod allows you to suspend or you could set a Temp Basal of zero for a longer duration, then you can actually suspend, which would essentially be the same idea. But you just have to remember to unsuspend or stop the Temp Basal of 0%. When you wanted to, you know what I mean? Do?

Scott Benner 8:13
Yeah, I'm just trying to think of other ways people might be doing this that I'm not aware of like, what about people who have you ever seen somebody who has, like a big insulin need? And they weren't aware? I don't know. Like, would you is there any world where you would shoot basil and let your pump give you some at the same time?

Jennifer Smith, CDE 8:33
I've Yes, with the woman that I work with in pregnancy, sometimes insulin needs go up so significantly, that the site often gets just oversaturated with the amount going in, you know, if you've got Basal rates that are two units an hour plus and your Bolus is are going to be 1520 25 units, depending on what your insulin to carb ratio is. You're talking supersaturation of this, this little tiny area underneath your skin. So not only do you end up needing to change the site a lot more frequently. You risk you risk sort of the right absorption underneath the skin as well in certain in terms of timeframe, right. So what we can do is with really large doses or need for insulin, you can downplay the basil, at least by taking the basil in a larger chunk from a Bolus of a Basal acting insulin, leave a little bit of Basal drip there. And you mainly use the site for boluses.

Scott Benner 9:39
Right? So inject the bulk of it, let the pump do a minor amount of it and then use the pump for meals and corrections.

Jennifer Smith, CDE 9:48
Correct. Yeah, I've even had some women who've done that as well as potentially once the Bolus has get so large, they can tell that they absorption is just not right for the way that Uh, things normally worked. And so we'll say, Okay, go ahead and use your rapid insulin as an injection for 50% of the Bolus and give the other 50%. You know, in terms of the pump,

Scott Benner 10:15
so, but for most people, there's no, like, I don't want people to listen to something because there's something I should be doing. I just wanted to find so you know what it is, but this is not something most people will have a need to do. Right?

Jennifer Smith, CDE 10:27
For the most part should not be okay, right?

Scott Benner 10:31
This by the way, this is interesting. The Internet tells me, essentially, going untethered means making use of an insulin pump and taking long acting insulin at the same time. This is just from a like a blog post. But it says The term was coined by endocrinologist and person with diabetes. Steven Edelman, did Steve come up with this? That's interesting. Is that a term? I

Jennifer Smith, CDE 10:51
mean, I wonder if he came up with the term kind of like John Walsh came up with the term of super Bolus? Yeah, right. I don't know. Maybe.

Scott Benner 11:00
In the future, will somebody one day Google like crush it and catch it? It'll be like this. It'll be you. Anyway, we covered this Yes. I'm thinking yes. Yeah. Cool. Thank you very much.

Jennifer Smith, CDE 11:14
Absolutely no problem.

Scott Benner 11:19
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guys, it was a short episode today but I want to thank you for listening. I also want to thank Jenny Smith and remind you that Jenny works at integrated diabetes.com If you'd like to hire her, she can help you with your diabetes integrated diabetes.com to find Jenny Smith. Hope you're enjoying the defining diabetes series. I find it to be One of the best, you know, just to hear the short conversations and leave with an understanding of a term that is going to come up over and over again in your life. It's really, I don't, I'm a big fan of it. Anyway. That's it. Thank you so much for listening. I'll be back again very soon with another episode of The Juicebox Podcast.

#809 5000 Ginger Cats

Becky's son has type 1 diabetes and Becky has some medical issues as well.

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Scott Benner 0:00
Hello friends and welcome to episode 809 of the Juicebox Podcast.

Today on the show, I'll be speaking with Becky. She is the mother of Alfie who has type one diabetes. And Becky has some of her own health concerns as well. We're going to talk today about some depression that she had after giving birth. What it was like when her son was diagnosed, the disillusion of her relationship not soon after, and much more. This episode is a great Listen, that is only made better by Becky's amazing accent. While you're listening today, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan. We're becoming bold with insulin. The T one D exchange is looking for US residents who have type one diabetes or are the caregiver of someone with type one. All they'd like you to do is fill out a survey. It takes fewer than 10 minutes to do so. And when you complete that survey, you've helped move diabetes research forward. You may have helped yourself. He definitely helped the podcast and you've done a nice thing. T one D exchange.org forward slash juicebox this show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash juicebox. This episode is also sponsored by Omni pod five, automated insulin pumping. That's tubeless that's what you're going to get with Omni pod five. Learn more and get started today at Omni pod.com forward slash juice box.

Becky Starkey 2:02
I'm Becky Starkey and I'm not a Marvel superhero despite what you think Scott. I'm 41 and I live in Hampshire in the UK. And I've got an almost 11 year old type one son.

Scott Benner 2:15
Does Alfie have any brothers sisters?

Becky Starkey 2:17
No own child?

Scott Benner 2:18
No. It's a nice way to grow up. I had it for five years. And then my brother Brian infiltrated and ruined everything but I was going along there pretty well for a while. Tell me

Becky Starkey 2:30
I'd have happily had a big family but it didn't work out. So he's the only one which is fine. It suits us.

Scott Benner 2:35
Okay, very nice. You and he you're on your own.

Becky Starkey 2:38
Yeah. On our own on our own or is he coming up? 11 So eight and a half years

Scott Benner 2:46
okay. Well yeah. Is there any autoimmune on his father's side of the family or yours?

Becky Starkey 2:53
His his father's half sister was diagnosed type one shortly after Alfie. But other than that a possible type one as a great great grandfather I think but it you know what it's like it's hard to get the actual information of is it type one or type two?

Scott Benner 3:12
This is both on our feast father's side?

Becky Starkey 3:15
No, the the great great grandfather is on my side.

Scott Benner 3:18
No kidding. Okay, well, I was gonna tease you for having a knack for picking them. But apparently.

Becky Starkey 3:24
Oh, I know how to pick him

Scott Benner 3:27
up. Have you ever tried the 180 degree idea where you identify a person who you really are attracted to and a person you're really not attracted to? And ask the person who you're not attracted to? Proving that you don't trust yourself to make the decision?

Becky Starkey 3:42
No, but I suppose it's a possibility in the future. It's

Scott Benner 3:47
a world it really

Becky Starkey 3:49
is. Two relationships, one of which was Alfie's father and my goodness, do I know how to pick them? So after that, I was I'm very happy to be on my own. And I'm incredibly choosy.

Scott Benner 4:01
I have a friend whose name I'll never mentioned on here, but I said to them one time, just when everything anything occurs to you just do the opposite. Whatever.

Becky Starkey 4:11
It's probably a good move in my case, whatever

Scott Benner 4:12
pops into your head tried to imagine the exact opposite do that this is this would be better for you. And he was like, alright, I'll keep making the same mistake. Whatever.

Becky Starkey 4:23
I'm gonna be great crazy cat lady and just have like 5000 ginger cats.

Scott Benner 4:26
Wait a minute. You only pick red haired cats.

Becky Starkey 4:31
Yeah, I've got two ginger cat so the best cat so I'm just gonna have like 5000 ginger cats.

Scott Benner 4:38
You're gonna smell like pee back in. You're not gonna No,

Becky Starkey 4:40
no, they don't do that in the house. Otherwise I definitely would not have 5000 ginger cat.

Scott Benner 4:47
Did you did you know you're probably just you probably just named the episode, right? ginger cat. Yeah, that's great. Yeah, yeah, I mean, it's a little early. I don't usually like to have it happen this soon but it's a strong contender early on.

Becky Starkey 5:01
Yeah, I like that I it's very unique. You won't get another

Scott Benner 5:04
top. Thanks. I mean, can you imagine if like five years from now somebody's like, you know, I just want to be by myself. Have about you know two three maybe 5000 ginger cats. I'll be like, Oh my god.

Becky Starkey 5:15
I'll tell you what if that's a male put him in touch 10,000 ginger cats together.

Scott Benner 5:24
This is delightful. Okay. How old was Alfie when he was diagnosed?

Becky Starkey 5:28
15 months very, very young.

Scott Benner 5:30
Oh, no kidding. I'm going to ask you a hard question now. And I apologize for doing so upfront. You asked, Do you think his diagnosis had anything to do with the dissolution of your relationship?

Becky Starkey 5:43
afterwards? I definitely think it had a bearing on him on him and his maturity to be able to cope with the situation. Yes,

Scott Benner 5:50
yeah. No, it doesn't seem were you guys? I'm doing the math here. You told me how old you are off air, which I'm not sure if you want. But were you in your late 20s When you were having a baby?

Becky Starkey 6:01
I was pregnant a 30. Yeah. He was. Was he? He's six years older.

Scott Benner 6:08
Okay. Oh, it's still a maturity problem. Boys do not? Well, yeah.

Becky Starkey 6:14
I was a, we were running pubs together. He was the chef and I did front of house. And then we got pregnant. And that job finished and I wanted to get out of the business. But I think he wanted to stay in the business. He didn't know how to get out. So he didn't know how to cope with actual life and be irresponsible.

Scott Benner 6:35
I see. You know, I've had a number of friends over the years work in restaurants. And they say that after hours, it's just a big orgy between the

Becky Starkey 6:43
employer it never went that far. But yeah, it was fun.

Scott Benner 6:46
I didn't mean all at the same time I misuse the word. I meant it was a little bit of a partner swap like it was one person one time the next person like it just was like your own. I guess it's late at night. And there's no one else around. So you're it's a it's a fish in a barrel situation, I guess. Am I right?

Becky Starkey 7:05
I don't know. I never experienced that side of it. He already had a business. When I went in with him. I was I was an accountancy. And I went into business with him. So we were together. So but we had a lot of fun a lot of late nights and way too much for it couldn't carry on when we had a child, obviously, it's just not the life for them

Scott Benner 7:24
work. So he just didn't adjust well, to the to the responsibility to what do you think the idea of having a baby that wasn't what he imagined was off point. I

Becky Starkey 7:38
think it just brought his true colors. It brought out the worst of him. And I think I didn't know him as well as I should have done when making that decision, because obviously life was fun and quite alcoholic. And when when you're not in that situation, you learn a lot about somebody. So yeah, not a great move. But the best thing I ever did having coffee, so that's fine.

Scott Benner 8:00
I understand. It's lovely of you to share the story. So thank you. So how long? Well, I guess not how long? What was the management style? Like, what did they give you for a 15 month old back then?

Becky Starkey 8:16
So we started on MDI and they encouraged the insulin pump. But both myself and his father were against it at the time, because he was so tiny. We just didn't like the idea of it being attached, which I think is quite common, isn't it? A lot of people feel the same. So we persevered with NDI. But the doses were just incredibly hard on him. They were just far too big. We had a lot of instability, some scary moments with ambulances being called him unconscious in my arms. Awful. So he went on an insulin pump. And he got it just before he turned to, which was amazing.

Scott Benner 8:56
Yeah, and so back then there. No CGM. Right, you were just meter. Yeah,

Becky Starkey 9:01
no, CGM. No didn't really know a lot about it. To be fair at that point. It was some. I mean, that would have been.

Scott Benner 9:08
I'm trying to think I think that's a little before Dec the first Dexcom, nine years.

Becky Starkey 9:13
We went on the jif. The g4 initially but that wasn't that was around when he was three. Yeah,

Scott Benner 9:20
yeah, that's my that was my point. I think you you had diabetes before we had Dexcom. I think. And it gets you a little slower to is that correct?

Becky Starkey 9:29
Yeah, we're a bit behind you. I see all the announcements about the Omnipod. Five yesterday, but we'll be well but well behind that. And

Scott Benner 9:37
it's tough. It's tough for these companies to get their products out of one country into another one. Just understand. Yeah. You need some British people to like want to make an insulin pump.

Becky Starkey 9:50
Yeah, that would be good. I don't know what's going on in the market. I don't know.

Scott Benner 9:55
Whether something or you know, just assume they're all in a pub late at night with vodka and they're not injured. Sit down.

Becky Starkey 10:01
It could well be the case nothing to do with me anymore, though.

Scott Benner 10:04
How do you learn about the podcast?

Becky Starkey 10:08
Um, I'd seen it because of the Facebook forums that I'm on. People. The name had come up a few times. I think I've listened to a couple of episodes. But the main thing was when I went to start looping in the first lockdown, so 2020, the lady who was mentoring me, she again, said, you know, have you listened to this? What do you think and just prompted me I had more time on my hands. So I got going into it more. It's very cool.

Scott Benner 10:39
Oh, that's excellent. I'm just always interested in how people find their way to it. The this morning, I got a request to enter the private Facebook group. And how did you hear about this from a friend of mine who has type two diabetes? And I felt very good about that. I was very, very excited that the word gets out that way. Yeah. So how many? I mean, how many years did you struggle with it in the beginning? Because having a an infant with type one, I mean, 15 months, you got me beat by, by a fair amount. Arden was 20. God, she was to just to you. I was gonna say maybe 25 months, but not even 25 months, she had just turned two years old. She only weighed 17 pounds. That was difficult. But yeah.

Becky Starkey 11:28
Um, yeah, it was, it was a massive shock. Because I think I think I explained to you in my initial email, I had postnatal depression as well. And I wasn't in a good place. So when Alfie was diagnosed, his father took on most of the responsibility. And I just assumed that everything was being done correctly, which I found out later. It wasn't. But I, I knew, you know, I knew what to do. I knew the basics, but I wasn't carb counting. I wasn't given the injections. He was the one supposedly checking him in the night, but he wasn't. And I didn't even consider looking at the finger stick meter to check that I just believed him. And it wasn't till you know, sometime later that I found out he wasn't being checked in the night. So yeah, he was just so tiny. And with the insulin pens only been able to give half a half a unit at one time. It was just incredible. He, the reason that I noticed there was an issue while he was diagnosed was he had incredible nappy rash. I guess, things were his blood was just or his body was just so acidic, because his blood was so high that it was causing horrendous nappy rash. And I taken him to the GP, the doctor and said, you know, something's up with my baby. And but just being told, you know, oh, no, he's just teething early. You know, he's, he's just doing well is teething taken away again. So I persisted with us for a good few weeks. I mean, Alfie was just crying all the time. uncomfortable, wouldn't sleep. You couldn't put him down. I mean, that's not unusual in a baby and it does fit with teething. So I looked online, as you do. Google, Dr. Google, and type one came up, and I read through it and I thought, surely not, you know, I knew very little about type one diabetes, as the most people. And I just wrote it off as in in a child's car. I thought that couldn't possibly be a thing. The nappy rash got worse. He got worse. I took him to a&e I was turned away and told there was nothing wrong with him. Same thing, probably teething. Couple of days later, I took him back to my local doctor and said, you know, there's definitely something wrong with my child. She said, it's probably a urine infection. This was on a Friday afternoon. Obviously, he was wearing nappy so it wasn't very easy. So she said, take, you know, take this sample bottle and bring it back to me on the Monday and we'll go from there. So I managed to get a sample off him over the weekend took it back on the Monday she dipped it and she just said you know, your child's got type one diabetes. I'll find the hospital now go home pack a bag you're gonna be staying in and it was like, wow. And it was it was shocking. I mean, I remember sitting there in in the room when he was diagnosed and the guilt I felt I felt so much guilt because I thought I caused it because when I was pregnant, I my craving was chocolate. And knowing so little about Taiwan, I assume that my cravings of you know, increased chocolate and sugar, cause type one and that took a little while to actually get that in my head that it wasn't me.

Scott Benner 14:55
Yeah, it doesn't work that way. Or my son would be a cheeseburger right now. Yeah.

Becky Starkey 15:01
It's amazing how many people go through that I see it on the forums all the time. It's It's sad that you know, there's so little knowledge about it.

Scott Benner 15:08
It's funny you bring it up because at the top of my email, my inbox right now, which I'm woefully behind on is a note from Erica who comes on and does the mental health stuff with me. And we're getting we're planning an episode right now about like, mom guilt and to talk. It's, it's, it's incredibly real. So you are at that, at that moment around diagnosis has your, your pre natal depression. Has that passed? Are you still dealing with that at the time?

Becky Starkey 15:43
No, I was still on antidepressants. It's still very much a thing. Yeah. Okay.

Scott Benner 15:47
So that was happening. You weren't being supported by. Were you married? At that point? I keep saying, No, we were engaged. But by by Alfie's Father, you're not being supported there. He's lying to you about what he's doing or not doing this care. That's unsettling. So you're you're in a really bad personal way. And in your heart, you think, well, at least at least this guy's got my kids back while I figured myself out. And then you find out that's not true. And then you blame yourself also, by the way, nappy rash? I'm sorry. Diaper rash? Yes. Okay. I thought I thought so. I was just making sure. I don't know if the kid was wearing a do rag, maybe you don't I mean, like old school, and had had some sort of a thing on the scene. I mean, like, like he's in a gangster film or something like that. It seemed unlikely. But so that's all happening. You start questioning yourself, your mind jumps right to that you a chocolate. So do you. Do you spiral at that point? Or do you rally at that point?

Becky Starkey 16:50
I think I just coped. I just went into a daze of doing what needed to be done with Alfie. I mean, I was the one that stayed in the hospital with him and I was the one doing all, you know, doing all the mums stuff, you know, the his, his father was there, but would come and go and then just kind of step in and look like he was doing all the hard stuff. But yeah. I don't know. I just coped. It was like a days it was like a dream. And then we were home and then we just coped again.

Scott Benner 17:26
And then Days turned into weeks and weeks turned into months and that kind of

Becky Starkey 17:29
Yeah, so they do. That's right. And then Alfie got his insulin pump just before he turned two. And then, about a month later, he and his, me and his father split up, and he left and that was it. And there was a couple of fleeting visits after that, and then that's it. He's, he's a well, you know, never to be seen again. So it was all It suddenly became my thing. It was like diagnosis all over again. And that was hard. It was like wow, this you know, I'd never lived on my own. And all of a sudden, I had a house to run a two year old and I had to take on tight one. You know, get my head around it and do everything on my own. I had no family locally, and we were new to the area we'd only moved into this house two months before he was gone. So I didn't know anybody there's it was all a bit Wow.

Scott Benner 18:25
Wow. No kidding. How do you how do you make money after he leaves?

Becky Starkey 18:33
I didn't I signed on to benefits because being a full time carer for Alfie, right. Now here in the UK, Alfie gets something called Disability Living Allowance for his tight one, and I get carers allowance. So that's it. Thankfully, I'm blessed that I haven't had to work. And unfortunately, now I'm at the point where I could go back to work because our fees coming up 11 It's, it's a real catch 22 situation here if I if I go back to work, I lose so many of my benefits that I couldn't even afford a standard home. I'd be in a in a bedsit with him. So it's in it's in our interest for me to continue on on the benefits until he turns 16 When they end it's it's an awful situation. You know, I've always worked my whole life until then. And I'd like to I want to teach Alfie the right values and I miss. I miss being around people, but it's just not a possible thing.

Scott Benner 19:35
Is there is there was there or any recourse legally to get child support? Or did his father really disappear? Like you can't he's not saying

Becky Starkey 19:47
he's gone. He's not paid a penny or there's not been a phone call or there's not been a birthday card. There's literally that's it?

Scott Benner 19:54
Wow. So you couldn't find him if you wanted to do anything even

Becky Starkey 20:00
I've found him. I know where he I know where he is. I follow online where he is roughly, just to be aware of how local he is. I've never chased for money because I don't want that man in my son's life. There's a lot that I won't say on here, but he's not a good person. And my son does not need him.

Scott Benner 20:20
I see. So the trade off between the finances.

Becky Starkey 20:23
Yeah, would be we can. We've got a good standard of living. We've got enough. We're happy.

Scott Benner 20:28
I see. I make sense. I was just trying to. Yeah.

Becky Starkey 20:32
Yeah, it's difficult because I don't want to start slicing him or sharing anything personal. But

Scott Benner 20:36
course not. No, no, I wouldn't want I'm not asking you to I just, I'm just trying to understand the, the theory because when he because when, when that happens when I mean, around here, if you bail on a lady around here, you know, you're getting served with papers, and they're gonna start garnishing your wages and things like that. Pretty quickly. That that was just what I was wondering.

Becky Starkey 20:56
Yeah, well, it's, it's, it is pretty a model that that guy hasn't paid a penny towards. And

Scott Benner 21:01
that's just, I hear you. My dad wasn't great about it either. So yeah.

Becky Starkey 21:06
I as I say, I'm good at picking him Scott.

Scott Benner 21:10
You would have done better. Eeny, meeny, miney, moe. I really do. All right, you You're fine. Let's go. Okay, so Well, the how long does the depression hang on to you? Or do you still live with it?

Becky Starkey 21:29
Well, just as his father was, you know, we were on the cusp of breaking up, we had one argument where he said to me, I'll have him taken away from you, you're a nutter? And I'm not. I'm not. I'm a perfectly good person. Yeah. And I said, Okay, fine arts, I stopped taking antidepressants. And I just came off them overnight, which I know is an incredibly dangerous and silly thing to do. But I made up in my mind that there would be no excuse in the world for that guy to ever get his hands on my son. So I came off them. I think the depression obviously did continue for some time, because so much was going on, and I had so much to cope with. So it wouldn't, you know, it didn't lift but I wasn't in an awful place. You know, I've had bad depression as a teen and this this wasn't horrendous, but it was. It was enough to be on antidepressants.

Scott Benner 22:24
And you think it was just a post here we thought postpartum you're hauling up post? Natal, but same.

Becky Starkey 22:30
Same thing, right? Yeah, it definitely was. Yeah, it was diagnosed by the doctor. Gotcha. It was, it was quite likely, unfortunately. Because I was had depressions in as a late teens and early 20s. So

Scott Benner 22:45
is Alfie ever seem depressed?

Becky Starkey 22:47
No, not at all. No, he's a he's a really good, happy, kid.

Scott Benner 22:52
Excellent. That's very nice. How do you think the diabetes part of this is all going nowadays in real, you know, in real time?

Becky Starkey 23:00
Amazing. I love loop. salutely love it. Two years. We've been on it now. And wow. I mean, we got good results with Omnipod and Dexcom. Because my level of micromanaging was so intense. But that just wasn't sustainable. Long term. You know, it was absolutely exhausting. And as for sleep, you know, I didn't even know what sleep was. So loop has just been an absolute life changer for for the pair of us because obviously he feels better too, because he's stable.

Scott Benner 23:31
Yeah. Talk a little more about that. So the lack of sleep, I don't think people pay enough attention to it. It's a big problem. It sneaks up on you it. It builds in a way that you don't notice until you're living, you know, like a wretched monster pulling at your own face and you don't realize what's happened to you.

Becky Starkey 23:53
It's sadly the lack of sleep had a big bearing on my health. So I was diagnosed with a condition called CVI D, nothing to do with COVID. It's common variable immune disorder. And I was diagnosed with that three years ago, because I'd been so incredibly ill. I'd spend about four or five years with back to back illnesses, colds, infections, and I'd put it down to the lack of sleep, you know, just sheer exhaustion. And I and my doctor had to they treated me you know, endless antibiotics. You know, I was basically on my knees. I couldn't stand to take a shower. I would get up in the morning and be sick. I was so ill, but nobody seemed to want to help. Nobody knew what to do. So they found eventually i i went in and practically got on my knees with my doctor and begged her to think about what was going on and she got blood tests that showed up that I had this condition And I now have monthly IVIG therapy, which is every month, I have to go to hospital and have intravenous plasma. And what that does is it replaces my immune system with other people's from a from a pool bank. So now I have an immune system, I'm not ill. So that's sadly they think that this sheer exhaustion was probably the Corizon. Yeah. Which I haven't. It's a very difficult one because I'd hate my son to blame himself for having type one and causing that, you know, he's such a switched on kid. So it kind of kept that quiet, but it probably would have developed anyway at some point, but I think the sheer exhaustion of type one definitely prompted

Scott Benner 25:50
is that is it trying to think of it's an autoimmune disorder or just a disorder of your immune system, which would be two different things.

Becky Starkey 26:00
I don't, I'm looking

Scott Benner 26:02
now. Common variable, immune deficiency and auto immune disease, a retro retrospective study of 95 adults. Common variable CVD is the most commonly clinical significant primary, immune immune deficiency in adulthood presents in a broad spectrum of clinical manifestations often including non infectious complications, addition to heightened susceptibility to infection. But I don't see anything about it being on I know that I don't really occurs and up to 30% of CVD patients and it is an emerging case of more Bewdley and mortality and this type of patient It's good isn't it? Sorry. Forget I read you that.

Becky Starkey 26:57
Yeah, not a great Gnosis but at the time, I was told it was either this or cancer. So I count my blessings. I'm happy to have this and receive treatment for it and much healthier.

Scott Benner 27:07
Yeah, based on this article. Immune complicate autoimmune complications, could include thyroiditis, celiac. Or threesome. Nodosum Raynaud's. Oh, Reno's. Yeah, alopecia. oral ulcers, that sounds fun. Immune, autoimmune. gastritis. Primary bipolarity Wow. Chalong get this. Don't get don't get that one. Because you don't have to learn how to say it. Do you have any other things that have happened since this diagnosis?

Becky Starkey 27:39
I've I've got bronchiectasis, which is scarring of the lungs. But that's because I had bronchitis pneumonia so many times. Which, yeah, that's linked. I do know that I'm more likely to develop other conditions. So there is a likelihood I could develop type one. My father and my grandfather has celiac. So that's also a risk. So yeah, I guess it is really all about it. Yeah. And

Scott Benner 28:05
it's interesting. When I said to you earlier, or other autoimmune, you're liking you were thinking about diabetes, but celiac exists in the family.

Becky Starkey 28:12
It does. Yeah, that's on my side. Okay.

Scott Benner 28:16
All right. Well, Becky skipped a little sideways here. But I think we can make our way through it. No, no, no, no, please. This is this is the lesson. If everyone came on this podcast, I was like, oh, Scott, the podcast helps me my one sees five for my time and range is 83% You're amazing. wouldn't be much of a podcast. We want to hear, you know, people's real stories and, and not not that, you know, not that most people will listen to this and have to think, Oh, this is gonna happen to me. It's obviously an incredibly uncommon thing and sadly fell on you. But I mean, it highlights some important ideas, right? I mean, already, we're half hour into this Becky, you want to know what we've learned so far? Gone. Here's what I've learned so far. I actually wanted to put the ads 10 minutes back, but it was just too good to wait for that. I love a nicer cliffhanger. When you have diabetes and use insulin, low blood sugar can happen when you don't expect it. G voc hypo pen is a ready to use glucagon option that can treat very low blood sugar in adults and kids with diabetes ages two and above. Find out more go to G voc glucagon.com forward slash juicebox G voc shouldn't be used in patients with pheochromocytoma or insulinoma visit G voc glucagon.com/risk.

So I went into the private Facebook group for the podcast Juicebox Podcast type one diabetes, and I searched Omni pod five found this person posts where people were talking about I'm gonna get a pump. I don't know which one to get. What do you think? Here's just a couple of the things I'm reading in this post. This is from an adult I have been on for years. I just started on the pod five, and my blood sugars are so much better with it. The algorithm is just working better for me. And I love being tubeless. Here's one that says My son has been on pod five for four weeks and it has been amazing. I was in turmoil about which pump to get, but knew that I didn't want him to be connected to something. We started on the pod and have loved it. My son is 17 was diagnosed in August, and we got him the Omni pod five, and we love it. We don't have anything to compare it to, but it works so well for us. Even though he's still honeymooning, we're able to keep him in range 97% of the time. If you'd like to learn more about the Omni pod five for yourself, head over to Omni pod head over to Omni pod.com forward slash juice box and learn about the only tubeless automated insulin delivery system that integrates with the Dexcom G six CGM and uses smart adjust technology to automatically adjust your insulin delivery every five minutes, helping to protect against highs and lows without multiple daily injections. If you're not into automation, go check out the Omni pod dash. When you get there, look into whether or not you're eligible for the free 30 day trial of the dash, because you could be for full safety risk information and free trial terms and conditions. You can also visit omnipod.com forward slash juice box, go pick up the insulin pump that my daughter has been wearing her cheese since she was four years old, the Omni pod, there are links in the show notes to Omni pod, G fo Capo pen, and all of the sponsors, the show notes or just the little spot in your podcast app where there's like notes about today's episode, if you can't find that these links also exist at juicebox podcast.com. And when you click on my links, you are supporting the show and keeping it free and plentiful. And where else you're gonna hear somebody mispronounce plentiful that I say plentiful. Anyway, use my links. If you're gonna buy the stuff, please, I'd really appreciate it. Check out the Omni pod five, the Omni pod dash and Chivo Capo pen. Here's what I've learned so far. Yep. Don't make babies with people you don't really, really, really really know. That's one. If you can help if you can help it. I I've heard that. Postpartum is not that I didn't know, but I hear how serious it is. And then it would have been made much, much easier with some nice support, none of which that you had, but kind of astonishing and happy news is that even without that support in the middle of your son's diagnosis, you still you got through it. And yeah, I think that's really wonderful. You have an amazing relationship with your son as near as I can tell. And, yeah, we're gonna dig into his life more. And things happen. Sometimes you when you have autoimmune in your family, you might see more autoimmune. And that's valuable for people not to think about and worry about day to day, but to be aware of big picture, because when these things rear their head, if you're not quick to notice them and do something about them. You could lose years of your life to struggle, and that's just not necessary. And the cherry on the top of the I wish I knew any any baked good from your part of the world, but I don't. The cherry on top of the cake here is paying attention to your sleep. You have to have to sleep. I know you think you don't because your kids got diabetes now. But that's not right. You have to sleep. So that's where we're only a half hour into it. We figured all that out already.

Becky Starkey 33:54
Oh, he's just come home. So you might need to know. That's fine with me. He's easy. I'm stealth mode. He's just snuck in the back door.

Scott Benner 34:01
Do you think he really listened to you? You told him that this morning, and he still remembers it in the afternoon?

Becky Starkey 34:06
Yeah, that's quite remarkable for our feet.

Scott Benner 34:09
That's quite remarkable for anybody who's 11 years old, and more than we could expect from some men, right so or at least the ones you find Becky you know me very well already. Listen. I think every guy is some some version of what you've described. I think you just got just got a particularly bad one. That's all. Yeah,

Becky Starkey 34:34
no, he wasn't as bad as the first one, but we won't go.

Scott Benner 34:37
See you got trick. The bar was so low, Becky.

Becky Starkey 34:41
Yeah, you're right.

Scott Benner 34:44
You're like, Well, this one's way better.

Becky Starkey 34:48
5000 ginger cats for sure. No

Scott Benner 34:51
kidding. He didn't have red hair. Did he the man. No, no. Trying to see how deep your fetish runs. That's all okay. Not that deep. So let's talk a little bit about how you found an algorithm pump. And what drove you to it. It sounds like the lack of sleep drove you to needing something.

Becky Starkey 35:13
Desperation. Yeah. Well, I've obviously been on the online communities for some time. So I'd seen a lot about what was going on. I'd had a friend who was using open apps at the time, but still didn't know a great deal about it. But she was like, Oh, you need this, you need this. And it freaked me out a little bit, because it looks so technical. Then I looked at the market pumps, and they looked pretty cool. But Alfie was very happy with Omni pod. He likes Omnipod. And then I went to friends for life in the UK with him and sat through a session on loop. And it really inspired me and I thought, wow, you know, I think I can actually do this money was a bit of an issue, obviously, because you've got certain layout for your Reilly link. And my, I didn't have a Mac or anything. But I gave it a go and with with help from the online community, and obviously this amazing mentor, which I think she's had a podcast for you not so long ago. So she, she basically mentored me for a whole year to get the settings, right. And we just absolutely love it. We're the only ones in our hospital that use it. And the consultants weren't, weren't that into it to start with, uh, one of them wasn't he was quite wary and said, you know, this could be really dangerous, you know, we can't support you, blah, blah, blah. And I was like, okay, that's fine. We'll run with this. I want to give it a go. And now they just love it. When we when we go in there. They just look at the look at the data and they just go Wow. You know, we don't know what to say, keep doing what you're doing, you know, is it's been really nice to be able to get it working, as it does. And, yeah, it's just an amazing system. I just highly recommend it to anybody. And I know it's daunting, and you will need some help with it. But go for it. Absolutely.

Scott Benner 37:10
You're saying that Gina helped you for a full year. Wasn't Gina

Becky Starkey 37:13
It was a lady called Nancy. Nancy Testa heart.

Scott Benner 37:17
No kidding, Nancy, it wasn't Gina I thought for sure. When you said had been on the program recently. I thought it was going to be Gina.

Becky Starkey 37:24
She's an absolute star. Oh, that's

Scott Benner 37:26
amazing. Somebody that stuck with you online a stranger and helped. Yeah, helped you? Wow. Yeah. Amazing, lady. That's really wonderful. So did you use any of the episodes on the podcast? Like the fox in the loop house stuff? Or any of that?

Becky Starkey 37:43
Yeah. Like, like, I like Kenny. Really useful stuff. I really appreciate that being there. Good. Good. Gives you some confidence. And I know that you've also tried it with Arden. And it was yeah, it's just good to hear other people's experiences.

Scott Benner 37:56
Oh, for sure. Well, I mean, Barton sleeping, right. The second. So yeah. Actually, you know, Becky, this will go up so long from now that I can tell you this, I just will remind you, as I'm saying it to you, that I have a non disclosure agreement that I have signed with the company. So please, just keep this in your little head when it's over. Don't go to the interwebs and everything. But as you may know, and you mentioned earlier, yesterday, on Monday, the limited market release of the Omni pod five shifted into another aspect of it so I don't think it's over. But it's it's widening greatly. And they started reaching out to people to let them no people who by the way used by link to tell on the pod they were interested in on the pod five and got on a list are now hearing back I'm just saying click on the links people because you never know what can happen. But I've been working this out for a week or so with on the pod and, and I actually got an email this morning that the that they're hunting down the prescription that our needs and that they are getting Arden's product out to us pretty quickly. So we're gonna, we're gonna try on the pod five very quickly to announce. For me, the way I see it super simply like I mean, I've I've never used control IQ. I've never used whatever it is that Medtronic has. I've used the loop, do it yourself. Get it offline, download it yourself, make the app yourself. I'm an app developer somehow, etc. Loop. It is so far the greatest thing I've ever seen for managing itself. Absolutely. stunningly, just amazing. Now, it has drawbacks. One of them would be that at the moment this system I'm using needs what you call the Reilly link we use the orange link but it needs something that helps pardons phone the app on the phone talk to the Omni pod. Yeah, It's a pain in the butt. Not gonna lie. She doesn't like it. It's not exciting. So on the pod five won't need that. That's a little exciting to me that might not be needed. Now we

Becky Starkey 40:10
got the Dash was needed either they're doing the building loop at the moment with Dash and you won't need a Riley link or nine shank back

Scott Benner 40:17
either jumping ahead my story but yes, right right now some lovely people online are cracked open the on the pod dash or whatever that means, you know, digitally and they are setting up a loop to work with that. I think from what I hear that's going to be it's they're doing their own beta testing right now. So yeah, looks good. Yeah. So that's exciting. And I want to try on the pod five. If on the pod five works for Arden the way we want it to. Yeah, amen. It's easy, it comes from the company, I don't need to be an app developer. Done. If I get that. Yeah, if we try it, and we think, Ah, I like loop better. That's not to me. To me, that's not an indictment of Omnipod five or control IQ or anything like that these, these things have a ton of value for the masses, they really, most people are not trying to keep the right ones in the mid fives. And and what most people want is a you know, a life where they don't think about it. I mean, for as many people who's listened to to listen to this podcast, there are certainly far more people using insulin who don't listen to it. And those people to think that they could go in their doctor's office and get control like you are on the pod five, or whatever the Medtronic thing is, I wish that I knew the name 670 G maybe to get those things to make their life easier, and more stable and more healthy. That's how most people are going to do this. So whether I you know what I mean whether, you know, whether I decide to do on the pod five longterm, or if I loop with Dash, because if we go back to looping, I'm not going back to the link, I'll definitely go

Becky Starkey 41:59
back. It's different for you, isn't it? Because Arden's older, so I mean, the reasons that we like loops so much is my remote monitoring through Nightscout. And the fact I can set up a temporary override to put them on for him while he's at school. And also, he loves the fact that you can Bolus from his Apple Watch, like without many people seeing what's going on. Whereas I suppose for somebody who's a bit older, you don't need those things quite so much.

Scott Benner 42:25
Yes, she doesn't care about whether or not people see or get insulin, that's for sure. Although I did set up a Basal override through Nightscout last night, because my knee hurt from my knee surgery, and I didn't want to get up and go to her phone. But you know, what's funny is that by me not looking at the phone, I messed myself up because Arden ran an open loop for a couple of hours last night while she was baking, because she was snacking while she was baking. And then she went to bed, forgot to re close the loop. And I kept looking at this like 140 blood sugar wondering like, Why won't this go down? And I kept upping our basil and like I'd put a dent in it. And then it would just go back again. And then this morning I went in and I was I looked at it. I thought you know, the the loop was open, so it wasn't making any auto Bolus. Now, I don't know if you use the auto Bolus branch of loop or if you're just using the basil one.

Becky Starkey 43:22
We were using the auto Bolus, but I put on John's switching patch, which is amazing. I put that on about three weeks ago. I love it.

Scott Benner 43:31
I don't know, Tommy.

Becky Starkey 43:32
So is it. John? I think it's John Fawcett. He built a switching patch. He's the guy that built the loop follow up. He built the switching patch. And what that does is it switches between the micro bolusing and the auto bolusing. So you set a limit and minus 7.2, which I'm not sure what that is for you that because we're in millimole, aren't we? So the limit is so if his bloods are under 7.2, it uses the micro Bolus thing. And if he goes above 7.2, it kicks in with the auto Bolus thing. And the difference there is it's nowhere near as harsh. So for things overnight, it keeps them a lot more stable. It's you know, it's not chipping away quite so hard. If it's within within range. It's brilliant.

Scott Benner 44:15
That's excellent. Do you say 7.2? Yes. 134. Okay, brothers. Oh, that's that is brilliant. And that. So that's now another version of the loop. So there's an auto Bolus on micro Bolus. And now there's a branch. It'll switch back and forth depending on the blood sugar value.

Becky Starkey 44:34
That's right. Yeah.

Scott Benner 44:35
Hmm. Do you have to read? Yeah, I don't see. Here's the problem. You said it's daunting. I'm still daunted by it like the idea Yeah, like like right now is you're talking about I think that's cool. I would try that. And then I think well, how do you put that on there? Oh, nevermind.

Becky Starkey 44:52
Yeah, you have to rebuild but there is a video. If you if you search for it, there is a video that some kind soul is done on on YouTube and you just follow it and it's you know, it's an Idiot's Guide. It's very simple. It's brilliant.

Scott Benner 45:05
You believe I could do this? Yes, go for it I don't believe in myself that much. I still haven't done anything about the date problem. You know how when the time the time thing changes time thing? I'm 50 years old. When the when the clocks change. Yes, when the clocks change. There's a word for that. Why don't I know it? I'm daylight savings. Right. That's it. Okay. Wow, there we go. Everybody should be now they're all like, do I believe anything? This guy says he couldn't come up with daylight savings time. So when that happened there's like a glitch and then if you change something if you try to change a setting in loop after daylight savings time, the loop app crashes.

Becky Starkey 45:47
Okay, I didn't hear what cuz you were daylight saving time is different to ours, as well as a different point in the year. Yeah,

Scott Benner 45:54
may or may not. There's no way for me to know you live in another country. I know nothing about it. Here's what I know. Here's what I know about it. Smaller. Buckingham Palace, fish and chips. That's what I know. There we go. Really good. But so anyway, I'm been told over and over again, that you could just rebuild the app and fix it. And I'm like, how am I gonna do that?

Becky Starkey 46:22
Now with the what's it called the workspace you just follow the workspace? We done that on loop and learn no idea what you're talking about. Oh, Scott, go into Lupin land. Org, I think and there's a workspace that builds the whole thing for you. You just plug your phone in and basically follow a couple of steps. And it does it always no comparison to how it was a few years ago.

Scott Benner 46:43
Starting loop using a loop building loop.

Becky Starkey 46:47
Building post Are you in? Were you in loop? And

Scott Benner 46:50
I just want to loop and learn.org? Because you said it. That's it go into build. Yeah. And then advanced quick build. Build for say, you said it was easy. And now I'm confused already. version updates asked for build help code customization.

Becky Starkey 47:06
You just basically like copy this code into the terminal on your map on your Mac. And it just, like, builds it all and then you just put up Xcode and it it just does it all and you just yeah, have a go. Honestly, it's so much easier.

Scott Benner 47:21
Yeah, have a go. This is how you pick that boy, I can't trust you.

So what I've just decided, was that I'll pretend it's for the podcast. And I will get somebody on who knows about it. And I'll rebuild Arden's loop while we're recording the podcast. That's it, do it. See how I just like I was like, Oh, I'll make it feel like it's for the podcast. I actually think I actually think I, I, yeah, I erased X code off my computer. Because it's such it's such a

Becky Starkey 47:57
pain. And I'm like, yeah, 5000 year download, put that back now.

Scott Benner 48:01
It's such a pain, like it just it ruins the computer like it ruined this one at the very least. So I have the I have to I'd have to reinstall Xcode just to do it. And then

Becky Starkey 48:13
or somebody else's Mac and put it on.

Scott Benner 48:16
Well, listen, that makes me sound lazy. I'll do it. Okay. But I'm not I mean, this poor computer is just, you know what I mean? Like, I mean, it can only hold so much in that damn program is just overwhelming.

Becky Starkey 48:33
Yeah, I had an old Mac and it worked. But it took an eternity. And then I managed to get one on credit this year. But it's it's just so worth it. I mean, as I say, loop has been an absolute life changer for the power of us. Yeah, it's amazing. Our clinic, I think you call it your Endo. Elton. He said, you know, will you be switching over to the only poor five when it comes out? And it's like, no, thanks. Why has it why would i Because, you know, loopy is got so, so many settings. It's so precise. You're in charge of the whole thing. You can change it when you know, you know, if he's ill, you know, if he's grown, you know, if he's been sporty, you know, those systems have that vaguely, but it's just not the same. You know, we have remote monitoring we have even remote bolusing will probably come eventually, we have the you know, bolusing from the watch for our feet discreetly, you know, there's just so much lip sync. It's incredible.

Scott Benner 49:33
I hear you. I don't disagree. I just I do really believe though, that there are two kinds of users. And I think that I think, yeah, I think loops amazing. But if it ever gets over, you know, I mean, there's, I mean, if you got up to 50,000 users I in 10 years, I think that was amazing. You know what I mean? Like most people are always going to want to go to their doctor, get a prescription, have a thing sent to their house, they're going to want to turn it on and have it do what it's going to do get their setting, you know, the big to me, the big hill to climb here for all these algorithms, whether it's loop actually or one that comes from a company is that settings, like the having, you know, what we've been talking about here on the podcast for years, about knowing how insulin works, getting your settings, right, that becomes incredibly important, because an algorithm with bad settings is worse than not knowing what you're doing.

Becky Starkey 50:34
Yeah, sure. Well, I, I often wonder, you know, loads of people here seem to be going on to the control IQ. But you see, you either see people who have got amazing results, or you see people who just it's just awful. And I, you know, I think with the control IQ it it learns your own patterns, doesn't it? Where you don't program it like you program loop, it's learning from experience, and it sets its own setting.

Scott Benner 51:04
You said control. Thank you. Did you mean Omnipod? Five?

Becky Starkey 51:07
No, no, the tandem the T slim,

Scott Benner 51:09
that one learns?

Becky Starkey 51:11
I think I might be wrong. I think so. But I might be wrong. I don't think that's what worries me about those ones. Because if you're having a bad day, or you've eaten something that's, you know, gonna mess you bloodstone or you're being really active. You know, you might, you could, I don't know, I can't control freak this this just

Scott Benner 51:34
Becky's, like you're really seeing into my psyche. Now, I don't know anything about these things. These are my fears. Yeah, I don't think that I don't think that any of the any of these algorithms as they are currently are so sentient that they're making like moment to moment decisions going, Look, he was low today. He's going to be low tomorrow. You know, I think that what they've told me about on the pod five so far, and I'll have it soon. Is that the very first time you put a pod on the very first one? It's collecting data. Yeah, when you move to the second pod, then you're on your way. And you know, it's not like 27 pods into it, or 10 years into it. It still remembers what happened on day one. It's working on a it's my ex, my understanding so far is that it's working on from expectations that has from recent time.

Becky Starkey 52:26
Yeah, it's like rolling data. Yeah.

Scott Benner 52:28
And if all goes well, Becky, here, I'll tell you more stuff that you can't tell anybody else. If all goes well, I will have a Pro Tip series about the Omnipod five with people who work at Omnipod. Okay, that's cool. So I'm going to try to get it all out there and have people to talk about. And you know, it's because again, setting setting settings if your basil is wrong, if your meal ratio is wrong, if you don't understand that, you know, honestly, there are fish and chips is a great example, if you don't understand that french fries and deep fried fish are going to have a fat and protein rise later. Then you're in trouble because you're gonna see a you're gonna see a rising blood sugar 90 minutes after you've eaten something you think you Bolus sport, you need to understand that you need to understand, you know how insulin works, and you you have to Pre-Bolus your meals, you do those things with or without an algorithm, you're gonna have a lot of success. The, the algorithms are amazing, like you said overnight, or, you know, you you know, one of the one of my favorite ways to use loops is you know, or one of my favorite use cases for loop is when you just look at a meal and you're like, I don't know how much this is I don't even care. I'm just going to pick a number this looks like 45 carbs today. And you have a nice stable line. But then you notice there's no rise. And this thing is saying to you Hey, buddy, I think this blood sugar is gonna get low and an hour and a half and it just starts taking away basil without you thinking about it and does its best to find stability, such a big deal. It's just it's amazing. So get an algorithm get your settings right if you can afford them. They're amazing. If you can't, the Pro Tip series in the podcast will help you do those things without an algorithm and and lessen your lows. And stop all the spikes in the highs. That's me. Have you ever did you use the podcast before the algorithm worked out where you had on your own then when you were up all night and micromanaging

Becky Starkey 54:29
Oh, I didn't use it and I didn't know didn't know about it at all. So I started looping two years ago this month, and I probably listened to you maybe a year before that.

Scott Benner 54:41
Interesting. I will always wonder how you would have made out with the Pro Tip series under your belt and nothing else. Because i To be perfectly honest, the outcomes we have with loop are the same outcomes we have without loop. The difference the difference is is like last night I shut my eyes and I was like Oh, she'll be fine. And I slept through the night. You know, whereas before I would have not been I mean, we weren't. Excuse me. She didn't crash a ton overnight, but it's just it's an extra level of confidence. I guess.

Becky Starkey 55:15
It's lovely. Just to know it's doing its thing, right.

Scott Benner 55:20
Okay, Becky, what else have we not spoken about so far? That was in your lovely note from so long ago? Oh, my God. You emailed me a year ago almost to the day.

Becky Starkey 55:33
It was Yeah. I was supposed to be talking to you in October and then I had to delay that one. That's new to April. Okay,

Scott Benner 55:39
so I'm looking at looking looking. I am going to ask you how COVID was with your, your CVI day. Rough still is. Okay. How so? Very locked down.

Becky Starkey 55:54
Yeah. So Alfie, and I spent about a year just us in the house. He didn't go to school. I homeschooled him, and we didn't leave, we didn't even go for walks. We didn't leave didn't see anyone. Awful. But with no immune system and being unable to get any treatment. Not that the treatment actually covers me for COVID. But there was just no option because should I get ill? I mean, should we both get ill? And I'm too ill to look after him. That's an issue. Should I get hospitalized? There's nobody to look after him. You know, worst case scenario should COVID You know, kill me which potentially can where does that leave Alfie. It's a really scary situation. So my treatment is, um, is a pool of people's immune systems plasma, but there's no protection for COVID in it. So I'm still not protected. I mean, Alfie has returned to school. He's been back at school for almost a year, which is brilliant, but the poor thing has to wear a face mask as extra protection when no one else was called does and we still don't do anything socially. We don't see anyone we don't. We haven't had a meal out. We don't go anywhere. You know, if I have to go to the shop, I go at the quietest time of the day to the quieter shop in a face mask. With an armband saying I'm immunosuppressed. Please give me distance. It's scary. That's you know what it boils down to? It's very, very scary. Yeah, in America, you're receiving for people in my conditions, you're receiving a drug called ever shout even ever shelled. And that's given in injections every six months, it's not the COVID job, it's different. But that actually protects the person they'll 80% less likely to even catch COVID And then very much less likely to get any complications. And it was approved by our government in March, but they still haven't purchased any and that's really quite scary because that is a life changer for the pair of us. You know, we can actually have some quality of life.

Scott Benner 58:06
Do you know how to spell that?

Becky Starkey 58:08
Yeah, Evie, U S H. E LD.

Scott Benner 58:20
Iva showing antibody treatment for COVID 19 high risk groups.

Becky Starkey 58:24
That's right. It's like um, it's like a miracle cure for somebody like me, it would give us our life back. We could actually see relatives and hug them and kiss them and you know, eat out with them. And you know, we were sociable people we had you know, we had a good quality life and we saw lots of friends and we miss it. We both miss it. It's of course been a life changer. It's sad. Just want that back for our feet because he's lost two years of his 11 years now to it.

Scott Benner 58:53
Yeah, my I just went to my son's last undergraduate college baseball game the other day. He was he should have been able to play in 180 Some games maybe 200 games in four years and instead I think he was in maybe he was I think he was eligible to play and maybe 70 games or something like that or because of because of COVID terrible evil shoulders a combination of two medications given together oh my god can wear who names these things? No, ticks a give a mob and still gather mob. I mean, honestly people both are monoclonal antibodies, which are lab made proteins that act like antibodies made in your made by your immune system to fight infection. Evil shout is administered by two injections immediately given one after the other based on clinical trial data. It's administered every six months to offer the most protection eligible people here in America it looks like include Food over 12 weigh at least 88 pounds, you also can't currently be infected with COVID. You have, you need to have a health condition that likely won't allow your body develop a strong enough response to COVID immunocompromised.

Becky Starkey 1:00:16
So basically I've had five COVID injections now COVID jobs like, like other people, but my book, my body can't produce an immune response. So I've got no antibodies. So those jobs are basically completely useless. I've got no protection at all. I am at the point that everybody was back at the start, you know, when everybody was hiding at home and not going anywhere? Yeah, that's, you know, it's quite scary. If there was an option to buy it privately, even that would be an option and what might be worth getting into debt for but there's not even that option here. It's just waiting.

Scott Benner 1:00:49
You're waiting for the government to literally, like buy this and make it.

Becky Starkey 1:00:54
I mean, they approved it in March. And I was so hopeful that we might make some progress, but it's still not happened. I know there's a lot going on in the world. And it's not priority to a lot of people. But to so many people it is

Scott Benner 1:01:07
I mean, from the news reports that I've heard monoclonal antibodies were like, kind of like oddly ripped off the, like, we stopped using them here as much as well, all of a sudden, they weren't talked about as much. And that's what we're talking about here. That's what this is, right? monoclonal antibodies. Yeah, ma ma B treatments.

Becky Starkey 1:01:24
It just means like fake antibodies doesn't kill you. Like people like yourself can make your antibodies, but this is like fake ones.

Scott Benner 1:01:30
People become Yeah, Becky, I'm fancy. I can make my own antibodies to me, you're not like you. Well, I hope that come becomes available for it. So you're you're saying if you took these, you would then probably take an antibody test to see if you had COVID antibodies? If you did, you'd go back to your life?

Becky Starkey 1:01:50
Yeah, absolutely. I mean, if I'm 80% less likely to even catch COVID. What What

Scott Benner 1:01:56
a game changer? Yeah, you would you would roll those dice, right? Well, yeah,

Becky Starkey 1:01:59
absolutely. I mean, yeah. I just can't, I can't explain what a difference that would make.

Scott Benner 1:02:05
No, no, I mean, listen, you have no so you have you're the one thing I wanted to make sure I understood was that the injections, you get to bolster your, your immune system, you are getting those through COVID or somebody coming to the house to give them to you or you couldn't even get

Becky Starkey 1:02:22
to. So every month, I have to go to a hospital in Southampton here. And I have intravenous so I have to sit for a couple of hours and have intravenous plasma put straight into my veins. But during COVID, that wasn't available. It wasn't an option. They stopped it for about four months, which obviously meant that you started getting sick, right? Well, no, because I wasn't in contact with anybody. So yes, I felt rougher. And I felt tired. But I didn't get ill. I didn't catch any infections or illnesses, which was good. But it was still a bit scary, you know, and obviously, until that, until that resumed, there was no way that Alfie could go back to school because he could bring something home as well.

Scott Benner 1:03:06
When you're on that, that treatment, do you do you feel an impact on your psychological well being as well? Or is it really just very physical that you that you get?

Becky Starkey 1:03:21
It all goes hand in hand, doesn't it?

Scott Benner 1:03:23
I think it does. I'm just wondering. Yeah.

Becky Starkey 1:03:25
You know, it's quite hard to know, because three years ago, I started the treatment. Well, yeah. Yeah, about three years ago, I started the treatment. And then, two years ago, we started looping. So my treatment started. And I had that before COVID. And then I started to sleep with loop. You know, I got my sleep back. So everything has changed. And I don't know how much of that is my, my health and my treatment. And how much of that is down to loot but as as a whole picture? Yeah, my life is so different. You know, I was like a walking zombie in I couldn't think straight. I had no energy. I couldn't stand I was always ill. I just wow. Yeah.

Scott Benner 1:04:11
Yeah. I mean, it's, uh, I had that very low iron. If you listen to the podcast, you know about and this sounds significantly worse than that. And I was, I was at the point at the end where I was just like, Well, I'm gonna die, you know?

Becky Starkey 1:04:28
To the point where it's like a better option. It's awful. I

Scott Benner 1:04:30
guess then, okay, think can't do anything. I have no idea of looking back how I was producing this podcast. Like, seriously, I have no idea. I guess I would get up in the morning and just do everything before I fell apart.

Becky Starkey 1:04:43
You know, just carry on. Yeah. I mean, I can't begin to explain to people how hard it was for me and what I went through. And only Alfie knows really, because he's the only one that saw me go through it.

Scott Benner 1:04:54
Yeah. And you don't want him for this just to be his reality either. You'd like to get him out in the world. Rolling get him going again as well.

Becky Starkey 1:05:01
Absolutely, yeah, I mean, he's, he does kickboxing now twice a week, which is a massive risk to me, but he loves it. You know, he's, it's changed everything for him. He's so positive and he enjoys it. You know, he's a really active kid he swims as well. And I've tried we're now at the stage where I try to let Alfie live as normally as I can with regard to hobbies and school, and then it's, I just hide away at home all week. And then at weekends, we're just very selective. We, if we go anywhere, we'll go for a walk outdoors type thing, or if we meet a friend, we'll go for a walk around a park, you know, it's and you can't go back to this for a cup of tea and that kind of thing, but, you know, it will change again, but at least Alfie's got some quality of life back.

Scott Benner 1:05:47
Yeah. How was the How was the lockdown bid for you personally? Like, like on your mental health? Has it been difficult?

Becky Starkey 1:05:58
Yes, extremely hard. It takes a lot to break me. I just keep going. And at one point I broke you know, I fell apart and I just sat and sobbed and poor Alfie just sat pose arms around me and sat with me and but after that, pick yourself back out and cracked on again. Because what alternative is there? You've just got to keep going until things improve. Like I said, So Alfie, every storm passes. And this feels like an incredibly long storm, but it will pass as things in the past have when there's been illnesses around you will pass.

Scott Benner 1:06:32
That's amazing. That's a great attitude. It's the only way you can have really, yeah, I mean, what are you gonna do? Right? Like, I mean, there's two options. There's keep going or crawl up in a ball.

Becky Starkey 1:06:42
Go through a lot of wind and look down.

Scott Benner 1:06:48
Well, hey, you haven't started sending him to the store for wine on his own. Right? tempting but no. My wife. No, I'm not a big drinker, my wife. My wife talks about when she was when she was a kid, her parents would, you know, dump all their change out, you know, like, she'd hold her hand out. And they'd give it to her. They'd send her to the store and be like, get a cigarette. And she's like, she's like, I was this little kid going into a store. Like I need cigarettes there for my mom. Now, that's the that's the 70s and the early 80s. By the way, you walked in the store with money and you're like, I need pell mell for my mom. They'd be like, no problem. Yo, pants and an eight year old cigarettes, no trouble. Worlds different now. My gosh, is there anything, Becky that we haven't talked about that you wanted to?

Becky Starkey 1:07:44
Thanks. So we did. Yeah, thank you. No, of

Scott Benner 1:07:48
course. Why won't anybody in the UK invite me to come speak? When I be amazing. I just want to see the UK for free. And I figured the way it'll happen is if somebody flies me over there to give a talk. And then I can,

Becky Starkey 1:08:03
I can say, Well, I reckon friends for life. So your best bet, isn't it? Oh, no. I

Scott Benner 1:08:07
don't think they liked me that much. No, I don't know. Nobody. Nobody comes calling. Maybe they do. Oh, yeah.

Becky Starkey 1:08:14
Well, where do you want to visit? And I'll see what I can do.

Scott Benner 1:08:17
That's right. There you go. Now, yeah, listen, whatever you can work out. Just don't put me somewhere strange. Although, again, based on our earlier conversation, maybe you're not the best person to choose for me. I come home with a cold sore. I'll be like, what happened here? Where did you send me what was on that pillowcase? Good. I'm really pleased for you, that you made your way through this so well. And it sounds like your son's doing terrific. Do you think he'll be I'm going to ask you a question that I hate when people ask me. Ready? How's he doing? Does he do this on his own? Or are you very involved in it? Aren't you worried when he gets older that he won't be? And I'm just kidding. It's just the worst question you people ask me I hate it. Like like somehow that the way you people that was very pejorative. I didn't mean that as harshly as it sounded. It should be an indication that it's the I think it's the it's the question I've heard the most over the years. And I used to hear it from like old timers, like people would have diabetes for a long time or like you're taking care of it. He's not going to know how to do it like that thing. But it's really a pressure, isn't it? Yeah, like a hand off pressure.

Becky Starkey 1:09:28
Yeah, I mean, it's very difficult when your child is diagnosed so young, like Alfie and Arden, you do so much for so long for them. And it's a very difficult transition for them to start taking it on. I mean, Alfie is very aware. He can carb count. He, you know, he knows all about diabetes. He knows the effects. He knows, you know, he's brilliant. He wears his Apple Watch. He's got his data on it. But he's only 10 years old, coming up with it. And at the same time, his priority is not looking at is watch to see what his bloods are doing. You know, he'll happily pick up a snack and eat it. And I'll go, you know, you Bolus, you know, because for so long, I've done everything. And we're at that age now where he starts secondary school in September this year, which is like we have here we have primary school from four years to 11 year 11 year olds, and then we have secondary school from 11 years to 16 years. So he starts secondary schooling this year. And there is a pressure from, from our medical team for him to do a lot more himself, but we text like you did. You know, if he's going low, I texted him and I say, you know, what extra is to dextrose? You know, are you being active, we work together, and that's what I want to stick with. And then, over time, hopefully, he'll learn to recognize things more need me less. That's all I can do.

Scott Benner 1:10:50
I agree. That's exactly how I see it. It's a slow transfer. It's a handoff, it's experiences, you know, people, people still say I just respond to somebody the other day, and they're like, What am I gonna figure this out? I'm like, just takes time to do it over and over again, until one day it just works. And you're like, huh, just works. It. As crazy as it sounds. I think that diabetes eventually turns into, like walking through a doorway, meaning that you don't approach a door and think consciously turn the knob, pull the door, close the door climbing you just eventually you just do it. And it is from practice. Because there was a time when you were two years old that you looked at that door and you thought turn the knob pull the door, you know what I mean? And now you don't anymore, and, you know, rushing?

Becky Starkey 1:11:35
type one diabetes is an absolute minefield, I'm still learning and Alfie's had it nine years. So how on earth can I expect him? You know just to grab hold of it and roll with it? He can't you know, it's we will always be learning I think it's just incredible. I don't think there's any other any other illness you know, disease like type one diabetes, it's just incredible.

Scott Benner 1:11:57
It's a pretty big match. That's for sure. Well, Becky, I think if you would have applied some of that common sense to your boy picking Becky, you cannot Are you planning on being alone for the rest of your life?

Becky Starkey 1:12:13
I don't know. You know, it's a funny thing. I've always just not really been bothered. I'm not interested anymore. I'm not bothered particularly while I've you know, while Alfie still at home with me, I really couldn't care less. I think there'll come a point where when Alfie leaves home and I'm on my own, obviously that I'll probably be lonely. I wish I'd done more about it. But now I couldn't care less at the moment. I'm not interested. I don't want the hassle.

Scott Benner 1:12:38
You start a podcast where you talk to the cats. Yeah, I think that would be wildly for the wrong reasons. Wildly popular. People be like I listen to this podcast. This lady just talks to the cat they never say anything back.

Becky Starkey 1:12:52
I don't know what your Dummett this I'm actually on the ginger cat Appreciation Society page on Facebook.

Scott Benner 1:13:00
You made that up all right. Maybe we need to get you an app or something. Maybe you need to swipe or something. You know what I mean? But that'd be helpful.

Becky Starkey 1:13:12
Yeah, stick with my cats.

Scott Benner 1:13:16
All right. Well, listen, I'm not gonna try to talk you out of it sounds like it's working. I really appreciate you coming on and doing this. Thank you very much. Thank

Becky Starkey 1:13:23
you. It's good. Thanks, got

Scott Benner 1:13:28
a huge thank you to one of today's sponsors, G voc glucagon. Find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGL. You see ag o n.com. Forward slash juicebox. I'd also like and I'd also like to thank Omni pod makers of the Omni pod five, and the Omni pod dash. Learn more about them get started today, all the same link Omni pod.com forward slash juicebox. That's the same link where you could find out if you're eligible for a free 30 day trial of the Omni pod dash.

If you'd like to learn more about the private Facebook group, it's called Juicebox Podcast type one diabetes and I believe it has something like 33,000 members in it now. It's a happening place. You should check it out. Even if you don't like Facebook. This is the most unfaced bulky place you'll ever find on Facebook. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#808 Teplizumab Trial Participant

Adele's child has type 1 diabetes and was part of the Teplizumab (Tzield) study.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 808 of the Juicebox Podcast

today we're going to be speaking with Adele, her child was in the Prisma trial. Now this was recorded about five months ago or so. And since then, to plus m OB has been FDA approved, and is now being sold under the brand name of tz yield to zeal Z. I don't know how they say it tz i e LD to Z old, healed zeal? Is the T silent is the Z silent is it healed? zeal, zeal, zeal? I don't know. Anyway, her kid was in the trial. It was a double blind study. But I think you'll hear while we're talking that it seems like her kid got the drug during the trial. If you don't know what double blind means, well, then that might not make much sense to you. But you'll figure it out as you're listening. All right, let me just say this and we'll get started. 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. He just occurred to me that you might not know what to play him on this. After the music, I'll explain.

So back in like, I don't know, March or April of 2021, I had Francisco Leone on the show, in Episode 452, called learning about the prism app. Now Francisco is the co founder of prevention bio, is like a PhD and really great guy who came on and talked all about type one diabetes, and the work that the company was doing at that time, which was to potentially be bringing to plus a mob to market if they could get an FDA approved. Francisco's an immunologist, and a self described auto immune aficionado, who is focused on eradicating autoimmune disease through early detection and prevention. Anyway, he comes on, he tells us all about this drug that they think you'll have to go listen to it holds off the onset of type one diabetes, and we talked about other stuff. It's a really good episode. Anyway, the drug got approved by the FDA. And I'd like to see if I can get the company back on at some point to talk more about it. But for now, what I have for you is Adele, and her story of her child who was on the to prism OB study. And when you go into a double blind study for research, some people get the drug, and some people get a placebo. And they never really tell you who is who. But I mean, if the drug is supposed to do something, and you find it happening, you kind of surmise you might be getting the drug. So this is Adele story of her child's experience in the trial, and I think you'll find it interesting. That's like the longest explanation of an episode I've ever done. You should listen to this episode. Also hang out for a second while I say this. This episode of The Juicebox Podcast is sponsored by I don't have my list in front of me. I don't know who it's sponsored by. I'm sorry. Hold on. Don't don't just don't want to hear about it. Episode What episode did I say it was 808 Okay, I got it. This episode of The Juicebox Podcast is sponsored by athletic greens, makers of ag one if you want the same drink I have every morning. You want a G one? Find out more and get started today at athletic greens.com forward slash Juicebox Podcast is also sponsored today. By us med get your diabetes supplies at the same place we do from us med to get started get a free benefits check at us med.com forward slash juice box or by calling 888-721-1514 Okay, long preamble. Cool episode. Appreciate you hanging out here while I get this all straight. Let's get going. Recording now.

Adele 4:19
Yeah, I don't know. I just thought I thought because like, you have the microphone and it just sounds a little bit different. So I thought maybe in real life it would sound

Scott Benner 4:27
well this isn't real life. I'm speaking through the microphone right now. True. So yeah, I wonder what I really do sound like right yeah, I don't know anymore either. Because in my ears I hear what you hear. Oh, yeah. Yeah, so I probably

Adele 4:43
does sound different I don't speak through microphones very often. So

Scott Benner 4:46
I'm saying though if I'm you know, I'm saying like if my voice really is I mean, let me be honest here I'm I'm running my audio through a couple of things. So you know, stuff to keep like popping out of my voice to like guide Don't like pop my PS. Like, takes hissing out of the sound. I'm not. Let's see what else I'm not doing much else to my voice like, I'm not overdriving it or, I mean, I have a little bit of like, there's a little gain behind it so that I don't have to struggle to speak. But I mean, mostly this is just about what I sound like I think.

Adele 5:25
Now that makes sense. I don't

Scott Benner 5:26
even know I forget now. I only hear myself through my ears. So I should record myself. Just on my iPhone, listen to myself.

Adele 5:34
Right? It's always I find is always different. When I hear myself on recording versus what I think I actually sound like,

Scott Benner 5:41
you got me thinking about it? Does this phone have a recording app? We're never gonna get to why you're on the podcast, we will. What would it? What would I record on my life? It's got to be like a recorder on here.

Adele 5:57
Oh, there is I record my children when they're being extra nasty. I'm like, This is what you sound like. Okay, what I have to listen to,

Scott Benner 6:06
I don't know why I'm thinking about this. So hard one, I just put the camera off. All right. So here's what I'm gonna do. I'm going to open up my camera. I'm going to record video. So I'm just going to record I'm going to hold this up to my mouth. Nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan. We're becoming bold with insulin. Okay, now. I'm going to play that back. But I'm gonna take my headphones off. So I can hear myself should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan. Or becoming bold with insulin. Hmm. All right, well, that's about what I sound like. I didn't realize

Adele 7:01
Oh, you must have so much fun with all the people you got to chat with.

Scott Benner 7:04
I do have a good time. I love this job. This is the the best job ever. My, my son and I are just texting a minute ago, because he's, you know, two weeks shy of graduating from his undergrad. And I know, he's exhausted. And he's looking for a break. And at the same time, he doesn't know what he's doing next. And I think that worries him. For sure. And I was I was just sharing with him that we were talking about my grades in high school. And is this one grade he's not thrilled with he's going to graduate. No trouble. But I think he's a little let down. He took two really difficult classes in his last semester, on top of a baseball season, which Oh, wow, COVID kind of forced that or otherwise, he would have split these classes up one in the fall one in the spring. And anyway, so it's not where he wants it to be. It's not terrible. And I said, My God, those are like the best grades I ever got. And I said, I'm the only published author who ever left my high school. I said, you know, I said, I've been able to find success in life. Don't worry about it, you know, you'll be okay. But I think at this moment, He's just worried about everything. Anyway,

Adele 8:12
and it's harder when you're young to like, when I was 22. I had no idea what I was doing in my life. Oh, sure. Now, I don't know, I think I have the best job ever. I have to argue with you a little bit on that I deliver babies for a living. And that's amazing.

Scott Benner 8:26
But you have to leave your house for that. That's true. I do. You don't even know if I'm dressed right now. Oh god. You imagine if you started showing up at those deliveries and you were just like, hey, Adele's here and a sports bra and a skirt. To get this done. Well, let's do it. I think people think I'm wearing a sports bra and a skirt. Because that's what came to my mind. It doesn't work with me. You know how when people say things you can think Well, that's what they're really thinking. Yeah, and it usually works out really well. My brain is so distorted that when I make stuff up, I I am literally pulling it from nowhere. So anyway, we should probably introduce you and start the podcast. What's your name? Sounds good. Adult. Udall Do you want your last name to be in this? No, it's

Adele 9:15
just your first name. Okay, well,

Scott Benner 9:16
you already said your last name. So I'll bleep it out. Do you have type one or do you? Are you the parent of someone with type one? What's your deal?

Adele 9:24
My son was diagnosed with type one last year. We're one year post diagnosis. How old is he? He has tat and he was diagnosed when he was nine.

Scott Benner 9:33
took away my opportunity to subtract one from 10 but okay.

Adele 9:39
Making it easy on you Scott.

Scott Benner 9:41
Taken away the parts where I get to feel good. Okay, kids 10 A diagnosis nine boy. You're a doll. How old are you?

Adele 9:52
I'm 45.

Scott Benner 9:55
And are you an OB or are you What do you do?

Adele 10:00
I mostly OB nurse I do some pediatrics as well.

Scott Benner 10:04
Okay nurse pediatrics very nice. And the other children at home.

Adele 10:08
I have another son who's six,

Scott Benner 10:10
six. How pissed were you? When Adele became famous?

Adele 10:14
Oh my god, that bad adult jokes just keep coming.

Scott Benner 10:18
Yeah, that was probably a bad day for you. gonna guess? Let's see, what else can you

Adele 10:24
say? Well, I'm older than she is. So she was actually named after me.

Scott Benner 10:30
Have you sent her a note? To let her know?

Adele 10:32
Exactly. I spoke with some of her colleagues as well. So

Scott Benner 10:35
it's just such a simple. It's such a simple thing. But I mean, your name is not common. And then this person pops up in the world becomes incredibly famous with your name. I just figured it's probably irritating. But you're okay with it to people?

Adele 10:51
I've got some pretty good comeback. So

Scott Benner 10:53
oh, I mean, how many people look at you and go, Hello. Oh my god. Right. All right. And even if people are saying Hi, do you have to think is this sarcasm about my name? What's going on? It's a lot of stress for you.

Adele 11:07
I don't know. It's pretty funny. Actually. I find it pretty entertaining. Oh, look at

Scott Benner 11:11
you. You have such a good way about you. What is going on? Are you from the south?

Adele 11:16
The west coast, the easygoing West Coast I live on in a vacation place. So my life is pretty, pretty chill. I feel like I'm on vacation every day.

Scott Benner 11:25
Just say you're on a half a gummy adult? We understand what's going on. Okay. So married? Yes, yes. When the little boy is diagnosed, complete surprise, something you were looking for? What was that moment? Like?

Adele 11:42
It was a complete surprise. At that moment. However, looking back in time, I think that he actually could have been diagnosed probably around age four or five.

Scott Benner 11:53
Here. Why do you think that?

Adele 11:55
Well, we noticed some behavioral issues with my child when he was little. And it wasn't like ADHD, or autism or anything really specific. But we noticed as soon as we would change his diet, go to really low carb, really high protein, eliminate any added sugar with anything and exercise on like crazy, he would kind of calm down and go back into like a normal child, like state, like he would just be really fun and easygoing, and kind of more, the bizarre behavior would really kind of disappear. And so at the time, you know, we're thinking what's going on with his child, but it was an easy fix. So we thought, well, maybe he's just not getting enough protein or felons, or he needs more stimulation. But I think looking back on it, I think that his blood sugar was getting a little bit high. And then by cutting those things out, we were probably bringing him back into a normal range, because he was just early on.

Scott Benner 12:45
Maybe he was in a really long honeymoon, because that's how that'd be a long time for four years or so. Yeah,

Adele 12:50
I think just maybe kind of the earlier phases of it. We have a lot of type one in our family. So maybe it was there. Or maybe I'm just looking back and saying, Well, that could have been who knows?

Scott Benner 13:01
Yeah, but you're saying this since his blood sugar's managed. Well, he's not like that anymore.

Adele 13:06
No, not at all. Interesting. He's really a different kid.

Scott Benner 13:09
Oh, well, that's great.

Adele 13:10
I mean, different a good way though, right? Yeah, definitely different in a good way.

Scott Benner 13:15
You didn't start running numbers for the mob or something like that. Because all this newfound clarity, it's like, Mom, I have way more clarity. Now I'm gonna. Can I loan shark? So what do you mean, there's a lot of type one in your family?

Adele 13:28
I have both on both sides. We have a lot of cousins with type one.

Scott Benner 13:33
How many give me a number on your husband side.

Adele 13:36
On my husband side, two on my side five.

Scott Benner 13:38
Whoa, look at you. Five cousins. So children of your aunts and uncles that kind of thing. Yeah. Not you though. Growing up,

Adele 13:51
not me. And no one in my immediate family.

Scott Benner 13:56
Did you think that those people were burdened by it and not you like to you grew up with cousins who had type one diabetes? Yes. Interesting. And no thought like, maybe I'll get it one day or my children could get it anything like that?

Adele 14:09
Not at all. It was just oh, it's in their, their families. Didn't even think that I would have a child with it. Wow. Want to hear something really bizarre though, right before he was diagnosed? Yeah. So my next door neighbor who is a fantastic person and we're really good friends. It was middle of COVID he was having an outdoor barbecue for his family. It was his grandson's third birthday and or fourth birthday, and he had been diagnosed with type one diabetes just a few months before that. So we went to this barbecue I met another person who actually introduced me to your podcast. And the next day I saw her in the pediatric unit her son was diagnosed with type one diabetes. Now these two people are best friends. One year later, I'm calling this girl being like, Hey, do you remember me? You're not gonna believe this, but I think my son has type one diabetes.

Scott Benner 15:02
And everyone else, you know, in the town got it on the same day, is that right? And now it's an ABC television show where you all live under a bubble. Is that correct? Yeah, totally remember under the dome? No. Sorry. It was a TV show whose premise I liked for five minutes. And then I was like, What are they doing the show? Not the point. That's that that isn't saying so these people, all within a year, you have three, three families diagnosed? Yes. Wow. No kidding.

Adele 15:31
And we they are my biggest support group. We have our diabetic wine group and Comox

Scott Benner 15:37
diabetic wine group. Now is that just an excuse to drink? Pretty much. Just just say that. We all have 10 fingers and toes, Scott. So we get together and we have a group about it. It's mainly mainly about the wine. So tell me something. What were the first signs for your son?

Adele 15:58
The first signs so we are really big cross country skiers. And so we are going up to the mountain frisky and he was just sobbing. He was just so tired. He didn't want to go. And that's not like him. And we just thought, Oh, he's just being whiny. And we're like, you're going and we got there. And he was just a disaster. And that was really just odd for him. And then he started getting up at night to pee. And he always had kind of gotten to the bathroom at night. So it wasn't that unusual. But it was a couple of times my husband's like, I don't know why he's getting up at night. This seems a bit odd. And then I had been working and when I work I work 12 hour, days and nights. So I'm pretty much gone for five days straight. And then we decided to go canoeing because it was beautiful out we we bought a brand new canoe. And we decided we're gonna go out for the day canoeing, so we leave our house, my everybody goes to the bathroom, because inevitably you get in the car and someone has to go, we get 15 minutes away from home. My son's like, I really gotta go like you've got to pull over now I'm going to wet my pants. Well, that's really unusual. I'm sure you just went to the bathroom. And then we got there, which is another 15 minutes away. So 30 minutes in total. And he'd gone to the bathroom three times. And I just went, Oh, my God, you have diabetes. And it wasn't really like there wasn't really anything else. It was just my complete gut instinct that that was what's going on. And then I emailed his teacher and I was like, I really want you to watch for these things. Is he drinking more? Is he going to the bathroom? Do you notice anything different with my son? And she emailed me back? And she was like, Yeah, I think I like he was filling up his water bottle quite a bit last week. I think I noticed that. And so immediately, I just went, Oh my gosh, I just gotta get him in. Right. And so I called my doctor. And it was kind of an interesting go of things. Because all the phone lines, the cell network was down for Rogers, which was with who I was with, so we had no phone service, but I went to work that day. And I fell in the doctor's office as soon as I got to work. And the doctor actually answered the phone because she thought it was the hospital calling. So I said hey, I am because I work in the hospital. We're all pretty close with the doctors. And so I just said, Hey, like, I need you to do this. For me. I think my son has diabetes. And she's like, well, you know, it could be a urinary tract infection. It could be a number of things. But I'll give you the the form for the bloodwork and we'll just go from there. So I called my husband, I was like get him from school, I need you to bring my son home. We need to test him right away. And I also had a ketone tester up from somebody that had been given. And so when we went down to the lab, I made him pee on a stick and I was like, oh my goodness just lit up. I had he had protein, glucose, ketones, all the things in his urine. So I just knew from that moment that that's what we're dealing with when you and so as well like being in a smaller hospital and knowing everybody I just said hey guys, like I'm taking her to emerge right now. So they do all the bloodwork that they would need for the emergency room. And then I took him in and they just we went from there. When

Scott Benner 18:41
you had the thought that he had diabetes, you said like it struck you did you actually say it out loud to him? Or was it a thought in your head?

Adele 18:48
I said it out loud to my husband. I said he's diabetic. And then my husband actually made him he started googling because he really loves Dr. Google. And so he started googling things. And then he made a pee in a cup and he was like, smell this. It doesn't smell like diabetes. diabetes smell sweet. smell sweet at all.

Scott Benner 19:06
You guys just sitting around sniffing pee together as a family? Yeah. So let the kidney on the side of the road by the chair. Did you stop at a restroom?

Adele 19:16
No. When he had to go to the washroom, he peed on the side of the road. We didn't I didn't make him pee or my husband didn't make him pee in a cup until we got home that night. So it was later on when we were at home.

Scott Benner 19:26
I'm just going to share with you that I enjoy peeing on the side of the road. My boys do. It's the greatest thing. One of the things I'm gonna miss most about my son graduated from college if he doesn't keep playing baseball is being in a field behind a tree somewhere. It's like my great simple pleasures. Like I forgot the bathroom. The buildings all the way over there. Those trees are right there. I'll be right back.

Adele 19:48
I coach five year old soccer. So we're pretty much always doing the same thing.

Scott Benner 19:51
Yeah, yeah. I mean, if you don't, if you haven't peed in the field, your kid doesn't play baseball. So okay, so interest Thanks. So now that he's at the hospital, do you find that your experience is either greater or lesser than it would be if you didn't work there?

Adele 20:12
I honestly feel like it was greater. Because so my son did not do well with blood or needles, he would get a paper cut, and he would see blood and he would scream like he was being murdered. He did not do well at all. So when we got his blood lab work done, it was a three person job, two people holding him down one person drawing the blood, we got into emerge, they wanted to start an IV on him. And then in walks this nurse that knows me, and she's like, Oh, Adele, you're my favorite nurse Oliver. I'm so happy. I love working with your mom. She's amazing. And then we just started chatting about things. And then he just calmed right down. And she popped an IV and like, there was nothing and he was like Mom, that didn't even hurt. He was just really, really easygoing about it. And then the physician that was on that night is actually one of his classmates, one of his friends, moms, so we kind of knew her as well. And I just felt like we really got exceptional care.

Scott Benner 21:07
I asked, because there are times that health care professionals come on, and they, I guess, they experience that doctors just assume they know so they don't explain anything to them. They just leave it like that. Go you get it. You're a nurse and you're like, you know, I deliver babies I'm not like a I'm not an endo. You know, like that kind of thing. Or you have you know friendlies around and they over explain and, and are really on your side and help. So that's why I asked really?

Adele 21:36
Yeah, I felt like we actually got a lot of explanations. I did have to ask about like, we were transferred to another hospital where I didn't have the same relationships with people. So once we did start getting our education, I did have to ask for a lot of things because I was like, honestly, I don't know how to use an insulin pen. You have to show me like you would show somebody that's never seen one before because I used syringes in the hospital. I don't know how this thing works. Yeah.

Scott Benner 22:00
You don't know how to catch a baby. And I don't know how to do this. Right. Like Exactly. Your work is specialized. So when he's How long has he spent in the hospital? He spent four days there was the NDK.

Adele 22:15
No, no, we actually, when I went in there, they were all pretty amazed. They were like, wow, you caught him really early.

Scott Benner 22:24
Is he is he honeymooning now or no? You're later? Yes. Yeah. Interesting. So you think that this is possible? This has been going on for a while you're guessing. But even after a year, you're still seeing honeymooning. So how does that present for you?

Adele 22:40
Right now. So we have an amazing endocrinologist. I love her to pieces. I worked with her in Vancouver quite a few years ago. She's absolutely amazing. We just had an appointment with her and we were talking about the honeymoon and Oliver's experience with honeymooning. And she said, you know, typically, because it's a Wednesday didn't drop dramatically fast. And his blood sugars didn't really come into range very dramatically. After diagnosis, she's really shocked that he's still in the honeymoon phase. So he's really, he's a large, 10 year old. He's very tall and very muscular. And he's using about anywhere from nine to 15 units of insulin a day, which for his size, is quite low. And some days he gets these crazy insulin surges where he really doesn't need any insulin at all. And so they feel like, that's really unusual, given the way that he presented at diagnosis, even though they felt like we caught him early. He wasn't in full blown DK, but he'd been kind of a slow burn.

Scott Benner 23:37
Did they test them like C peptide, things like that, that check to make sure he's type on?

Adele 23:41
Yes. All of us he tested positive for all of the antibodies and off the charts for all of them.

Scott Benner 23:45
Hey, way to go.

Adele 23:48
Right? To do it. Well,

Scott Benner 23:50
this is high scores. Why not? So I mean, the whole time you've been talking, I'm thinking to myself, you said west coast at first, and then I realized she's Canadian. She didn't mean cat. I thought you mean California. At first, I was like, No, you're you're deaf. I came here so pleasant. You know that about yourself? I imagined. Do you

Adele 24:07
have moments?

Scott Benner 24:09
Do you want to tell me about any of them?

Adele 24:12
We'll save that for the next one. Stop. Oh, I

Scott Benner 24:14
say all right, well, we're not getting that out. So you're on for a pretty specific reason. So now that we got your background together, I'd like to jump into it. So tell me about how a trial was brought to your attention.

Adele 24:30
It was quite interesting. We were about to leave the hospital. We just met and met with our new pediatrician and she was like, by the way, there's this clinical trial going on. In Vancouver. It's a lot of work. If you want if you're interested. here's the here's the thing, and just kind of toss it on her lap. I was like, Well, I feel like the diagnosis of diabetes. For a lot of people. It's very overwhelming. There's so much going on and you have to enter this trial within six weeks of diagnosis. But not only do you have to enter the trial you have to go through a pretty rigorous screening process. And you have to start the medication within six weeks of diagnosis is part of the criteria. And I thought it's probably hard to recruit a lot of children. And as well, I have a friend that really regretted not going into it because there's been a lot of benefits seen, or people feel like there's benefit potentially seen with this new medication. So I thought, let's give my child a chance to experience that. And if we're helping other kids in future generations, I feel like that would be really beneficial.

Scott Benner 25:30
So how So how long has he been in the trial? Like since he was diagnosed,

Adele 25:34
since he was like six weeks post diagnosis is when we started?

Scott Benner 25:38
And are you aware if he's getting the drug or? We're not?

Adele 25:46
As far as I'm aware, I think that he is getting the drug, mostly because of the reaction. So the reaction for children that are getting the medication is quite can be quite extreme, whereas the ones that are not tend to have no response or very minimal response. For Oliver. When he started the trials, we went down, we had to go to Vancouver, we're on an island, take a ferry across, get there, they have to do an oral glucose tolerance test. And that takes up the better part of the day. And then they give you a two hour long infusion of either a placebo or two plus a mob. And so we did the infusion, we went back to our suite, we're just relaxing, tuck him into bed at 2am. The Dexcom starts going off and he's going straight up, which he wasn't greatly controlled at the beginning of his diagnosis, but he was definitely we were seeing numbers mostly between six and 10 at night, and he wouldn't typically go straight up. So I felt him and he was extraordinarily hot he was and his blood sugar's shot straight up to 20. And I checked his temperature and it was 41 degrees. And of course, being the really prepared mom that I am I had absolutely nothing I didn't think to bring Tylenol or ibuprofen or anything with me. I just thought okay, we're going to this child probably won't get the medication. I had no idea what I was in for. And by more at four in the morning, I mean, thankfully I'm in Vancouver, everything is open at four o'clock. I can go out I get some Tylenol, run out super quick. And grab medicate him like crazy. And I got his temperature down to 39. But barely

Scott Benner 27:22
41 Celsius ism is a vicious. Yeah, fever. 105 Fahrenheit. That's crazy. Yeah. Wow. And so your point is you think he was having a reaction to something that was given to him? Exactly. Yeah. And since then, do you know other people in the trial?

Adele 27:45
Yeah, actually, it's been really neat because I've connected with people in various parts of the world because it's a worldwide trial. And so I've actually been in touch with people in Florida and California and locally and across Canada. So it's been really interesting to chat with some of the people that have experienced it. And mostly, the reaction is very much the same. They're like my child was quite responsive to it. I think my son's kind of been the most responsive in terms of how sick he got. But most most of the children have had some sort of reaction, whether it's a really bad rash, or fever or GI symptoms.

Scott Benner 28:21
Have you spoken to anybody who's had the placebo and said, I don't have any reactions? I don't know what you're talking about that you think they must have had the placebo? Yeah, I

Adele 28:29
have a good friend here that was also is also in the trial with her son. And she's like, you know, we haven't really seen any response with insulin needs or any response to the medication when he did get it.

Scott Benner 28:41
So what do you how do you pick through this on a second? So first of all, how often do you have to go to the trial center?

Adele 28:49
So initially, we were going every month. So at six weeks, you do your two week infusion period, and then you go back two weeks later, and then they have certain timeframes that you go back. So I've been going pretty much every month, November was our second round of the infusion. And then now we're kind of tapering off. So we go back Qatar every three months for a check in. We're going back in two weeks for our last glucose tolerance test.

Scott Benner 29:15
When in that first time when he gets the medication, he gets it for days in a row. Is that correct?

Adele 29:21
Yeah, he gets a 1010 or 12 day 12 day course of medication.

Scott Benner 29:27
So you go back every day for that amount of time and get a different infusion. Yep. Wow. It sounds like a trooper. That's

Adele 29:35
it was really intense. Like the first four days were so awful. I didn't think that he was going to complete it. I thought he was gonna say no, I'm not doing this. He had really intense fevers the second day, they couldn't get his fever down. So we ended up at the clinic for the full day and into the evening. And then he had really severe muscle spasms and then the third day he started complete nausea and vomiting. You It was really intense.

Scott Benner 30:01
Wow. Looking back now are you happy to

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looking back now are you happy to am? Yeah,

Adele 34:15
definitely in those moments, it was really scary because he was quite sick. And it was a lot more intense than I ever thought it would be. I never really anticipated that he would get such extreme side effects from it. But I think what we're seeing now is he's very stable and not really needing a lot of insulin, the majority of the time.

Scott Benner 34:34
So when when you go in initially for the trial, how do they I'm gonna say sell it to you. But that's not what I mean. You understand? I'm saying like, how was it presented to you? If you get this medication and it works for you. Here's what we think could happen. What did they tell you then?

Adele 34:52
They basically tell us they're looking at what could happen they don't tell you what the effects are because I think they don't really want to sway you in one direction or the other, but they're lucky, they tell you that it's a medication that's designed to decrease the amount of audit antibodies, because when you're first diagnosed, you tend to have about 20 to 30% pancreatic function. And then the antibodies over time will destroy the remainder of that. So this medication is used to destroy those antibodies to keep that pancreatic function for as long as possible. And in the hopes that it will stabilize blood sugars and decrease insulin needs.

Scott Benner 35:26
And you think that's happening?

Adele 35:28
I feel like it is our endocrinologist thinks that she thinks it's all the trial medication that is doing that. What do you mean, she really thinks that he she's really curious why he's still in honey is honeymoon and how little insulin he actually needs and how stable his numbers have been. She's just because as she said, typically, when she sees results like this, the kids tend to be very early on a diagnosis, like usually they are being screened. And they have a sibling with type one or something like that. And they're quite early on, and their agencies will drop from whatever it is 789 at diagnosis to kind of five to six pretty quickly after starting insulin. And then they're they tend to need very little insulin from the start, and then eventually will creep up, whereas all over his agency diagnosis, I think was 7.9. And then he kind of just dropped a little bit at a time for quite a while until now, he's kind of sitting between 5.5 and six. So she thinks, typically, because we didn't see that initial large drop, that he wouldn't have stayed in his honeymoon as long as he is. And that his insulin needs wouldn't be as low as they are right now.

Scott Benner 36:39
So she believes that the Tomislav is helping to yeah, by the way, tough please a mob. Right. Is that right?

Adele 36:48
It's like a tongue twister.

Scott Benner 36:49
I get it wrong almost every time. So she thinks it's working you do you believe it's working and don't want to be too hopeful about it? Like is that the idea?

Adele 36:59
I think it's working i The hard part is, I feel like we're seeing some benefit from it. But now I'm like, now what? Because the trial, they finished taking kids into the trial. It's not been approved anywhere for use with type one diabetes. So there's no opportunity to see well, would another dose kind of keep that going for even longer?

Scott Benner 37:20
And there's there's no opportunity for that whatsoever. Because it's not because this is a trial to try to get this through the FDA. Yes. Right. So it's not like, it's not like they can just say, hey, take more. It's okay. We want you to have it, they might want you to have it. They can't give it to you outside of the trial. Exactly. You can't sign back up for the trial for it, because they they're not doing a trial on somebody. Two years out. They're doing this one year trial.

Adele 37:45
Yeah, well, it's actually. So it's 18 months in total is a time that we owe Okay, from start to finish.

Scott Benner 37:51
Hmm, is that sad word, do you? I mean, I guess what I'm trying to find out is, first of all, I think this is amazing that you guys are doing this, it's a lot of effort, you could have ended up with a placebo. You know, so just thank you from everybody for doing it. That's that part's amazing. But are you sad now that it's over? Like, is there a part of you that's like, well, if we can't help him, what's the point?

Adele 38:16
Actually, no, I feel like, I'm hoping that this can benefit kids that are being diagnosed or being detected prior to diagnosis with antibodies, because they're hoping to catch kids prior to even showing signs and symptoms of type one, just knowing that they have the antibodies to kind of give that as a preventative method to delay the onset of type one diabetes. And I'm also just thankful for this time that we've had that he's been so stable and on such little insulin.

Scott Benner 38:45
Is it strange to think that you might not really even know what you're doing yet. And that diabetes is actually going to start over again, when the trial is over?

Adele 38:54
Not really, because I feel like I've gained so much information over the past year, that I feel like we're we're getting there. And I'm always kind of prepared for when things are going to change because it really was diabetes, he gets sick, something changes, he goes out and runs a marathon, something else changes. So it's kind of always evolving. It's like the math question. That's always changing. One plus one never makes two.

Scott Benner 39:19
And so at the moment, you're just doing everything you would normally be doing but you're doing it with less insulin.

Adele 39:25
Yeah, yeah. And some too often no insulin at all.

Scott Benner 39:29
How long for how what kind of structures? Could you by the way? Is he on a pump? Or? Yeah, he's

Adele 39:34
on Omni pod. Okay, so

Scott Benner 39:35
are there times when you just have to take a pump off?

Adele 39:39
Yeah, I just turn it I just dial it down to zero. And we just like the other day he had a track and field meet at school, and he ran a 400 meter race. And after that, I couldn't give him insulin for anything. He had pizza. He had cookies. We had to turn out he still went low. After that. We had to turn off his basil all night. Oh, He just didn't need any and he can come sometimes go for two or three days, then typically he'll need a little bit of something. A start so it doesn't really last for very long, but he's still even when he does need a little bit. He's kind of often eight or nine. Okay. 15 is like a big day for us when you need to, we need to 15 units and usually that's like a birthday party or just chilling on the couch or he's getting sick or something like that.

Scott Benner 40:24
That's total insulin to not just Basal that's total insulin. Yeah. How much do you weigh? Did you say?

Adele 40:30
He weighs 90 pounds?

Scott Benner 40:36
10 years old? Yes. Yeah. Wow,

Adele 40:40
that's pretty tall. He's got size nine men's feet already is gonna be a big kid.

Scott Benner 40:45
That's just crazy, though, because it's possible that he could use as much as like 20 units of just Basal insulin with that weight.

Adele 40:52
Right. A lot of my friends are on a one to five carb ratio. We're one to 45, sometimes one to 100.

Scott Benner 40:59
Yeah, no kidding. Wow. So it is? I mean, listen, I guess you could say he could have had a honeymoon for this long. But I mean, it sure feels like that the trial is is helping him.

Adele 41:13
Definitely. That is the one hard thing with the trial is the honeymoon is not controlled, like, no two children have the same honeymoon phase. And some kids will just naturally have a prolonged honeymoon phase with no insulin. And some kids will have a really short two week long honeymoon phase. And even when their honeymoon they just need a little bit less insulin than maybe they would. Regular Yeah.

Scott Benner 41:35
Wow. So do you have when you need to talk to somebody about diabetes? Can you talk to anybody who's using insulin? Or is it more difficult for to find somebody who understands the scenario? And

Adele 41:50
sometimes it can be quite difficult because people that they don't relate to like, What do you mean, he doesn't need insulin for this, or he's done some activity. And now for days on end, he, we can't give them or any insulin because it just takes him. So it is definitely a little bit of a challenge to find because like our endocrinologist, even at first was like, well, he needs a little bit of insulin. And I was like, but if I give them a little bit of insulin, especially last summer, he would go low, and he would just stay low. So it was really challenging. And even now when I have questions, I go to my team and I'm like, Okay, well, this is what's going on. And they're like, I don't even know what to tell you.

Scott Benner 42:27
Right? Everybody's just got to guess because, you know, based on their best guess. I mean, it makes sense. It all makes sense. It's just, it's kind of fascinating. In the in the meantime, have you had your other child check by trial net?

Adele 42:41
Not yet. I am just waiting for it to come in the mail. Oh, you are thinking of doing it? Yeah, I'm gonna get them tested. Especially with so much in our family. I just feel like it's worthwhile, right.

Scott Benner 42:53
No, no, of course. I wondered if you had any other autoimmune in your family on your side first.

Adele 43:00
My side? Yes, we have. My dad has Crohn's disease. Crohn's that's really about it.

Scott Benner 43:06
No kidding. Celiac. You got a bipolar uncle? No, nothing. Just that's pretty, pretty boring. Really? I don't know. You've got five cousins that have type one diabetes and your kids in a really cool drug trial. You're not that boring. And you catch babies. They're Canadian babies. But still that counts. You know? Babies are pretty exciting. You can't judge babies by what country they're born in. You absolutely are just catching that's it's a really how did you get that job by the way?

Adele 43:37
Oh, lots of training. Well, honestly, it's that's a whole nother podcast on its on its own. I really didn't know what I was going to be when I grew up. And I've gone through many different careers. And now I'm kind of quote experienced, I don't feel like I am all that much. But yeah, I've gone from one thing to the next. And this is kind of where I landed. I went NICU, neonatal intensive care I did for a while before that, and then I went into labor and delivery and I just love it.

Scott Benner 44:03
Well, neonatal that's a tough one, right? I have a friend who does that you have to have a certain kind of makeup to be around sick babies and to not have it really impacted terribly. Do you agree with that?

Adele 44:17
Possibly. I loved it. I felt like it was absolutely amazing. There was definitely heartbreaking cases. But when you have the heartbreak, it's actually a really a privilege to be with somebody at the most difficult time of their life and to make it as not really good isn't a word for it, but just make it as peaceful as you possibly can. But mostly, the good times outweigh the bad, which is why I stay at it.

Scott Benner 44:45
We have to we have to take a detour here for a second. So listen, just go with me for a second. Okay. You're really really nice. Why? What happened? You're good parents. Did you see something terrible the Did Jesus speak to you in a dream? What has happened? Why are you so the I tried? I didn't try to make you say something negative, but I led all of your questions at the beginning in a negative direction to see what you would do. And you You did not follow that direction once. What if I'm being serious now? Don't laugh, because you're gonna think I'm joking around. Why are you so nice? Don't tell me it's because you're Canadian.

Adele 45:22
Oh, that's exactly what was gonna say. It's because I'm Canadian. Come on. We're also for nice up here.

Scott Benner 45:27
You seriously, yeah. Are you aware of this about yourself?

Adele 45:31
Well, I think it's probably what makes me a good nurse. Also, my husband, he would say he's, he thinks that I'm the least compassionate person around and he's like, I don't know how you make you. How you're a good nurse because you're so compassionate. No,

Scott Benner 45:45
yeah, you're his opinion of you is not important. Because obviously you're torturing him for sport. That's a different situation. Yeah, I'm talking about I'm talking about the rest of us. So seriously, traumatic thing in childhood. Are you? Are you compensating for something? Are you really happy? What is happening? Oh, you don't know.

Adele 46:05
I'm just a pretty easygoing person, I think,

Scott Benner 46:07
wow. So good for you congratulate you don't even realize you won, like some sort of a lottery?

Adele 46:13
Oh, no, you know, what it is, is, honestly, I feel lucky to be alive after what happened last year. I think that that's actually changed my attitude and everything a lot more. Because during the midst of the whole clinical trial that Oliver was in, he was really sick. And then that wasn't enough, I got really sick. And then I ended up in the hospital for quite a long time, and just about passed away. So I feel really lucky.

Scott Benner 46:42
Although bear flu, what happened? How'd you get sick?

Adele 46:45
Oh, I had. So with all of her my child that has type one diabetes, he had a pretty traumatic entry into the world, he decided to come out umbilical cord first. And which is not really a great way to decide to come into the world. So I ended up with a C section with him. And it causes a lot of scar tissue and that scar tissue wraps around your small intestine. And when it strangulate off part of that, it can be quite terrible. And so being young and healthy, nobody really thinks that there's something like that going on. They're just like, Oh, you have period cramps? Oh, well, maybe you have a little bit of a GI bug. And, of course, when I do things I do really, really well. So I was like, No, I'm gonna show you guys all that you're all wrong. I'm gonna just have a small bowel obstruction. And yeah.

Scott Benner 47:35
So you had a small bowel obstruction that almost killed you?

Adele 47:38
Yeah. Mostly because nobody really knew how I thought it was that severe because I'm so young and healthy and fit. And I have a really high pain tolerance to you. I don't really. I'm kind of nervous about being a hypochondriac. So I tend to not really go to doctors for anything, I tend to just wait until something goes really wrong.

Scott Benner 47:56
I was gonna say maybe it's just that you're in such a good mood that people like she's not as much pain as she's saying, look at her. She's smiling. Like, are you one of those people who's standing there telling me I think I have a small bowel obstruction. But you're saying it with a smile on your face, and then asking me how I'm doing? Pretty much. Yeah. Okay. Like,

Adele 48:12
feel the cramping. Like, it's kind of like labor pains. And the first thing they're like, Oh, you're pregnant? Like, no, I'm too old for that.

Scott Benner 48:21
young enough to be healthy, too old.

Adele 48:22
Yes, exactly.

Scott Benner 48:24
So to be so prior to this experience? Were you a little more morose than you are now or? No? I think no, I think this is how you are.

Adele 48:39
It could be partly how I am. I definitely feel like with all that's happened in the last year, a whole new kind of sense of purpose. And just a really, can you talk about a sense of gratitude?

Scott Benner 48:54
Yeah. Can you talk about that for a second? What about your experience makes you feel that way?

Adele 48:59
I think just being thankful that I'm alive, because quite honestly, like when they took me into the operating room by that point, I was so sick that I just went unconscious. And I was shocked wake up, I was like, Wow, I can't believe that I've actually survived this. It was a long recovery and lots of complications with it. And the fact that and the mortality rate is somewhere between 60 to 80% for what I had, and how severe I had it. So I just really was thankful that I feel really like I got a second chance at life and just able to be there for my children.

Scott Benner 49:39
All of this is from scar tissue from a C section because that kid tried to come out belly first and they couldn't get him spun around. And so quickly, and then I don't understand like the SCART. I mean, it's a fairly common procedure this point right a C section. So there's follow up how did the follow up not point to the Sisa section

Adele 50:01
because it just goes over time and the C section I had with my son was not a normal C section either. Because it was so emergent. So it was very, it was more traumatic C section they had to cut in many different directions. And

Scott Benner 50:15
how big was the baby?

Adele 50:18
Oh, he was teeny was six pounds.

Scott Benner 50:19
How big are you?

Adele 50:21
I'm Reese. I'm 565 730 pounds. All right.

Scott Benner 50:27
Gotta go person. So but they had to, they opened up like a Christmas present to get the baby out. Pretty much. That's terrible. What was the recovery? Like, even before you knew you weren't well?

Adele 50:40
From my C section?

Scott Benner 50:41
Yeah, like was it longer than you would have expected?

Adele 50:45
No, it wasn't at all. Hey, I kind of bounce back pretty quickly from that. Alright,

Scott Benner 50:50
Adele, I'm gonna pull some horribleness out of you. And if I can't do it, you're you're the big winner this week. Okay. Sure. Is there no irony that you help people have smooth deliveries for their babies, and you couldn't get one that didn't make you mad?

Adele 51:04
Oh, that's the nurse curse, the nurse curse?

Scott Benner 51:07
Are you trying to name the episode though? Because you've done it.

Adele 51:15
That's a commonly known thing. We always joke about how all of the labor and delivery nurses come in to have their babies and something does not go as planned.

Scott Benner 51:24
There, can I share something with you that will make me sound I don't know how it's gonna make me sound. But it doesn't happen to me. Often. I'm not. I don't want anybody to think that I'm running around feeling like this constantly, because I have a good life. And I'm very happy. But there have been times in the past or something's gotten sideways in my life. Not usually for me, but for a loved one. And it's hard not to think I help so many people. How could this go bad for me? You know what I mean? Like you're putting so much good into the world. And you think I in this moment when I need it. I can't get a little spoonful of it here. You know. But anyway, I would be lying if I said I hadn't thought that way once or twice. But overall, it's kind of I mean, it's really adult, right? Like, that's not how the world works. It's totally Yeah, it's good to put nice stuff in the world doesn't mean you're good at back. And it doesn't mean you shouldn't put good things into the world either. But I just I mean, it just struck me. I was like, how did you get a bad delivery? You don't I mean, that's just it's crazy. All right. Look at you. All right, the nurse curse that says mean as you're gonna get. How do you torture that husband? How come he doesn't think you're so nice.

Adele 52:38
Oh, because when he gets sick, I'm like, you're fine. It's like

Scott Benner 52:43
that's it. All right. Okay, how does so we know that that Oliver manages with Omni pod when he needs insulin. I'm assuming he has a CGM as well.

Adele 52:54
Yeah, he has a CGM. We are mostly on Dexcom because that's part of the trial is for for trying Dexcom we struggle with it a little bit because for some reason, it always reads low when he's not actually low. And then eventually it craps out because it's been reading low for so long. So according to Dexcom, his he's like 50%, low and 50% in range.

Scott Benner 53:17
What are we calling low?

Adele 53:20
Oh, it just says low. That's what Dexcom says he Well, he goes like 2.5 and then it just reads low. Is he well hydrated. He's very well hydrated. Drink lots of water.

Scott Benner 53:30
You ever try calibrating the Dexcom?

Adele 53:33
I do. And then usually it'll go to fail after I calibrate it. So I stopped

Scott Benner 53:37
interest is the very very low to calibrate is very lean.

Adele 53:41
He's really He's really tall and skinny. You do a pencil here muscle

Scott Benner 53:45
you do a pinch up when you put it on him.

Adele 53:47
Yep, I do the pinch up. I do the shallow insertion. I've like had them. I've heard about this, like upside down insertion. I've tried that.

Scott Benner 53:55
Have you ever tried putting one on yourself to see if it works just for fun? And it works? Okay on you?

Adele 54:01
Yeah, I got a lot more fat than he does.

Scott Benner 54:05
I have more substance. I have more than he

Adele 54:09
does. Yeah, I've tried everything that he does, because I want to know what it feels like. So I can kind of relate to him. So I've had it and it's really cool to see what your own blood sugar does.

Scott Benner 54:17
It's actually I'm gonna say this, it's actually incredibly valuable. Because being able to see how meals impact somebody who, whose pancreas is working gives you a great idea of what it is you're shooting for in life with diabetes.

Adele 54:32
Oh, definitely. And just to see like, how do I feel when I go low? Because I go low a lot. And then what makes me go really, really high and I mean, high for me is eight or nine I don't get very high very often. But it was just really fascinating to see those different things and things that you think that maybe would go really high and you don't. I wonder if that's an effective exercise.

Scott Benner 54:56
I just got done interviewing Jake from Beck's Komm just the other day actually. And the new one, that G seven, when it comes out will have a much shorter sensor wire. The one on the G six is 13 millimeters, and you're Canadian. So you actually have an idea of what I mean when I say that, unlike Americans who are like, I don't know what that means. But now it's going to be down to six millimeters. And it's going to go in on a 90 instead of on a 45. And I wonder if even that might not help you a little bit

Adele 55:27
interesting. Yeah, cuz a Libra works amazing for us.

Scott Benner 55:30
Then maybe that's going to be something you figure out here. Interesting.

Adele 55:34
I'm really hoping for the g7 to come out sooner than later. But we're in Canada, everything is about five years behind anywhere else in the world.

Scott Benner 55:41
You're over exaggerating a little Is it five years?

Adele 55:43
Pretty much you guys got Omnipod five, that's gonna be like in the next 10 years in Canada.

Scott Benner 55:50
It is. I know nothing, but it is not gonna take 10 years, that's for sure.

Adele 55:56
I'm just like, rubbing it in.

Scott Benner 55:58
Well, it's Is that what you're saying? The people online are super excited. They're getting their their emails about on the pod five and stuff like that. Yeah, have you? I guess you wouldn't consider even using an algorithm until you can get a CGM. It's working well for your son too.

Adele 56:12
Yeah, yeah, we have to figure out how to get a CGM. He's pretty particular about where he'll wear things too. And because it's his body, I want to have let them have some control over things. So I just tried to go with it. But he's like, I have other areas on him. I'm like, well, there's little bit more meat here. Like let's try this, but he just won't go for it.

Scott Benner 56:30
So you ever just try bribing him?

Adele 56:33
Oh, gosh, yes. Yeah. A lot of brides

Scott Benner 56:37
it's Vancouver. Yeah, that's pretty much a city Vancouver, right.

Adele 56:40
Thank you is the city Yeah, I'm on the island though. So I'm on my own little Oh, I smaller smaller place.

Scott Benner 56:48
How long does it take you to get off the island?

Adele 56:50
From where I live it's an hour ish plus, well, almost two hours to the ferry terminal and then another two hour ferry.

Scott Benner 56:57
Wow. So you don't leave that often? No.

Adele 57:02
Once you're on the ferry, we don't even cross the bridge to go from one side of the town to the other.

Scott Benner 57:08
won't even go to the other side of the island. Exactly. Too far. Nevermind. Don't need

Adele 57:14
it. Oh, you live on that side of the 17th Street Bridge. Nevermind. Oh,

Scott Benner 57:17
yeah. I see what you're saying. Right. Right. Yeah. Those people over there how big is the island? Do you know I can look if you don't

Adele 57:28
big actually quite big. Like there's kind of three main cities on it. And then there's a ton of smaller areas to go visit.

Scott Benner 57:37
It says let's see. The island is 456 kilometers in length 100 kilometers and with 332 1000 squared Hmm, I wonder. Vancouver Island size. Perspective. Let me see if I can find out what else it's here putting vancouver island into perspective. Oh the internet. Thank you internet. That's that's a map. I need words. It's not helpful. New Zealand maybe. Okay. comparison, a list of countries at the Vancouver Island is larger than Belgium. Albania This is not Equatorial Guinea. This is not this is not a flex. Adopt we Cyprus Qatar. The Bahamas is right. It's not that big. Were you born there? No,

Adele 58:48
I'm from Saskatchewan. The prairies.

Scott Benner 58:51
How do you end up there? The boy. The boy take you

Adele 58:55
know, I just need the I was ready for change.

Scott Benner 58:58
I see. I think that's the spot where we should dig to find out where your darkness is. But I'm gonna leave you alone? Because it's not why you're on the podcast, but I'm figuring this out as though I could get this straight. You don't I mean? Exactly. All right. What's your favorite Adele song? Do you not like Adele?

Adele 59:22
I like her. I don't know all her songs off by heart though.

Scott Benner 59:26
Interesting. You're not an Adele fan. That seems purposeful. I feel like you're avoiding this on purpose. Do you want to know

Adele 59:39
that sounds good songs.

Scott Benner 59:40
Do you want to know my favorite adults? Hello? No. There's a version of I think it's when we were young that she didn't Oh yeah. That she did in some studio. It's and there's a video of it online. And it's so it's like a live recorded version. It's my favorite version of any of her songs? So that's it. That's mine, or yours when we were young? And I don't know, I don't know if it's the song or it's the performance? I can't tell you. I think it might be Yeah. All right. Why did you want to 52 minutes later, Adele, why did you want to come on the podcast? What did you want people to know about the about the trial,

Adele 1:00:21
there's a lot of people that have really been interested in, they just want to know more about the medication and what it does, and different people's experience with it. So that's just what I wanted to talk about is kind of what the experience looked like, maybe some hope for what things could look like in the future for kids that are newly diagnosed, and just getting into a clinical trial and kind of things to think about, like, really the, the expectation of going into it, and how difficult really, it is at diagnosis to choose to do that. And then how intense it was, I really, I had no idea that it was going to be so involved and that my child would have the effects good and bad that he did.

Scott Benner 1:01:01
Were you compensated for it. No, not Allah,

Adele 1:01:06
we get ducks con is part of the trial. And they pay for our trips to go and like, go there and stuff like that. So they pay for the ferry travel. And when we have to stay overnight, there's things like that, yeah,

Scott Benner 1:01:20
that doesn't seem like a bonus to me. I'm old enough now like you just paying for my travel. It's not, that doesn't seem like compensation. So the other day. So I don't know if I've explained it here and there. But the T one D exchange is not a sponsor of the podcast, meaning they don't pay me to say T one D exchange. However, when people sign up through my link, I'm compensated when somebody completes the survey. So there's just it's it's technical, like they're not a sponsor of the podcast, but yet, I am compensated by the link. So you know, anyway, just so that that's clear. So they put this thing out the other day. And they said that the first patient dose with VX 880, a stem cell derived potential therapy to treat type one diabetes has achieved groundbreaking insulin independence that day 207 270 With an HB a one to 5.2. This means the patient is producing enough insulin to maintain normal blood sugar levels. It goes on to say vertex also announced the clinical hold by the FDA as they gather more information about those tests, escalation. They're working with the FDA, blah, blah, blah. And, and the reason I bring it up, because here's the the end of the statement, the T one D exchange has been assisting with recruiting for the study of this treatment approach. And I, I reposted that, because I tell people all the time, I'm like, I know I'm telling you to take the survey. But you could actually be contacted about studies and all kinds of things. Like there's people who listened to the podcast, who were index comedies of studies, they were actually compensated for it and got to help Dexcom work on, you know, a better and he's there for the g7. Like, there's all these things, but it's so difficult to get people to help with these things. Which is why I'm constantly saying like, go to T one D exchange.org, forward slash juicebox. Take the survey, because that's how difficult it is for them, just to get the people they need to do that. And not everyone's going to be as nice as you are. So and

Adele 1:03:19
that's why we went into the study is just really is because it's hard, especially with kids, I mean, you're gonna give a trial medication to a child, that's pretty big deal, right? With to see how their body reacts to it. And I mean, I did a lot of research on the medication. And this medication has been around for quite a long time. And it's used in a variety of autoimmune therapies. So I had no question that it was safe. But I felt like it's really hard, especially when you're now telling a parent that your child has a life changing diagnosis, and you need to do all of these things. But don't give them too much insulin because it could kill them. But don't give them too little because that could also kill them. And then you're like, here's the study that you could be in, but we don't know anything about it and just it's so much coming at you all at once. And then you know, to try to recruit enough people to actually make a change or to show some benefit. I think that that's a really really hard thing to do especially when you involve kids and not that I want to make my child kind of a guinea pig for anything but if I can help him and have him be get some benefit as well as helping other kids I think that that's really worth it.

Scott Benner 1:04:27
Yeah, I have to say like it the interesting thing about the tea Wendy exchanged as an example and to build on this idea is that they're not necessarily saying you need to be in a trial. They're actually saying if you could just fill out the survey, your answers help people and that's difficult to do. I'll tell you right now, I have to drive. I have to drive 10 clicks to get three people to take the survey. And that's a lot and on top of that getting stuck getting a have someone who can even drive 10 clicks is difficult. So there's difficulty layered on top of difficulty just to get your feedback, forget you to get, you know, forget getting into a trial. And I understand it, like, I'm not coming down on people like lot people's lives are busy, you're not looking for another thing to do a lot of the times, but the truth is when you do these things, I mean, there could be some real significant benefit for people. And those people might end up being you one day too, or if it's not you. I mean, you know, look at Adele situation, she got five cousins, and now her kid has it. So maybe Adele's Kiddle have five cousins, and none of them will have diabetes, and then some buddies grandchild down the road, we'll have it like, you're going to end up helping somebody. But you know, again, it's I know, people are busy. That's what I think makes it special that you guys did this. So thank you very much.

Adele 1:05:55
It was it was definitely eye opening. And I don't know how long we're gonna keep benefiting from it. But right now he's super stable and not a ton of insulin. So I will just take it.

Scott Benner 1:06:06
Yeah. Does he know he's helping people?

Adele 1:06:10
Yeah, he really, it was his choice. Like, I give him a choice with a reasonable choice with as much or as little as we can. And so I told him, it was his choice. Like, if he doesn't want to do this, we don't have to do it. And if at any point during the trial, that he decided that this was too much for him, he didn't have to go through with it. So I made it his choice. And we talked about why he was doing it and what the importance was. And so I think he was really when he was diagnosed, I was really shocked at my child. Because really, the first thing like, one of the first things I said to him is, you know, I know it sucks, like this is really, you know, it's really crappy. But unfortunately, I guess you'll get used to it. He's like, Oh, mum, fortunately, I'm going to get used to this, this is going to be fine. diabetes is no big deal. We've got this. And then Then one day, we first got our pump on and this is really quite funny or cute. We are driving home. And they of course, set up our pump settings quite low and quite conservative. And so he was starting to go a little bit high. So I was like, oh, Oliver, what do you think we should do? He's like, Oh, Mom, that's easy. We just have to be bold with insulin.

Scott Benner 1:07:16
You let that boy listen to this podcast, I think, Oh,

Adele 1:07:18
yeah. He's listened to the podcast since day one. My girlfriend told me about it. And he's always been really curious. He picks up the episodes. And

Scott Benner 1:07:27
I tell people and kids listen, and that's why I'm not. I try not to be too dirt. But that's very cool. Good for him. He also has your attitude, obviously.

Adele 1:07:40
Well, I was shocked, because I would have never expected that from him at all. That he would be so positive, because I mean, like I said, he would get a paper cut and scream like his arm was being chopped off. And for him to just suddenly be like, okay, yeah, finger pokes no big deal. Or like, yeah, I've got this. And just, oh, we need a little bit more insulin. Okay, I'll do another poke. I was just shocked. Okay. And so that to this day, he's still maintained the same attitude of, I can do whatever I want. I've got this and we've got a pump, we'll just dial it in. He's really, really good.

Scott Benner 1:08:12
That's great. I really is exciting to hear. Well, cool. Is there anything we haven't talked about that we should have?

Adele 1:08:19
Well, that goes on the next podcast. What do you you keep saying

Scott Benner 1:08:22
that? What else are you going to tell me about?

Adele 1:08:24
I don't know, Scott.

Scott Benner 1:08:27
You have nothing. You're just trying to sound like you're

Adele 1:08:29
gonna talk about the nurse curse. And well, the nurse or things related to

Scott Benner 1:08:33
it. I think I figured out that nurse curse, the nurse care sounds like you help other people and then you get screwed nurse.

Adele 1:08:39
Also, the one thing is, because I do work in pediatrics, I see a lot of really terrible stuff. And so I'm always like, you know what, it could be a lot worse.

Scott Benner 1:08:50
What terrible stuff do you say?

Adele 1:08:52
Oh, you see, like, kids with terminal cancer or brain hemorrhages are just really, really terrible things. So

Scott Benner 1:09:03
that's really is something. Unfortunately, with kids, it

Adele 1:09:06
doesn't happen very often. It's pretty rare. But when things go wrong, it can go really wrong. Yeah.

Scott Benner 1:09:11
And then you can't get is that island prepared to help you? Or is it? I mean, how many times you have to fly somebody off that island to get medical care

Adele 1:09:20
a lot? Well, especially being in a smaller community. I mean, even just for our very basic diabetic care, we have to go to a bigger city. We don't have any of the resources in our community. We have to drive an hour one way or the other to go to a place that has an educator for kids and a care provider. Do you know then our endocrinologist is in Vancouver, so we have zoom appointments with her every few months? That's what

Scott Benner 1:09:46
I was going to ask. Yeah, Where's where's the, the endocrinologist that wow, that's really something. Well, you are. You're delightful Adele. I don't know what to say. I mean, you just there's no crack in your armor or your it's very real deep and you don't want Tell me when we stopped the recording. I'm just going to ask you very quickly one question and then and then I'll let you go on with your life. Does that seem fair? Sounds good. All right, thank you for doing this hold on one second.

A huge thanks to Adele for coming on the show and sharing that story. I also want to thank Athletic Greens makers of ag one and remind you that you can get a free year supply of vitamin D and five free travel packs with your first order at athletic greens.com forward slash juice box. And don't forget, you can get your diabetes supplies the same way we do from us med us med.com forward slash juicebox or call 888-721-1514. If you're enjoying the Juicebox Podcast, please share it with someone else who you think might also enjoy it. Make sure you're subscribed in a podcast app. And don't forget to check out the private Facebook group Juicebox Podcast type one diabetes. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.