#1927 Hero of the Day -Part 2
Hero of the Day (Part 2)
Part 2: a positive MODY 2 result reframes everything. After a year and a half of insulin and anxiety, Felix comes off insulin entirely under a supervised hospital trial — and his numbers hold.
Jump to a moment
- A positive result, then a bigger question. Eight months after consent, genetic testing confirmed MODY 2. The endocrinologist said Felix could relax — and Silvana’s first thought was that if he could relax, maybe he never had type 1 at all.
- The human cost was real. A year and a half of intense anxiety around lows: Felix stopped eating at school, faked insulin doses, quit the bus and birthday parties, and the family slept in his room. Silvana calls it disordered eating that was heading somewhere worse — and stresses it has since resolved.
- Nigel’s hypothesis about the set point. His theory: because they dosed insulin so tightly, Felix’s own insulin never got a chance to kick in, so a C-peptide test read low — making a MODY 2 kid look convincingly like type 1. This is one family’s reasoning, not medical guidance.
- A supervised trial off insulin. On January 21, under hospital supervision, Felix ate freely for twelve hours — chips, juice, white bread — peaked just above 180, drifted back to his baseline, and showed no ketones. That day he came off insulin. Six months later: 94% time in range, 6.4 A1c.
- The long view for MODY 2. Described as non-progressive with a low complication risk, Felix is now monitored lightly and lives as though he doesn’t have it. The earlier positive zinc-transporter antibody, they were later told, was likely a false positive — subsequent testing was negative.
- MODY (Monogenic Diabetes) — diabetesgenes.org — Background on maturity-onset diabetes of the young from the Exeter research group, including MODY 2 (GCK).
- Juicebox Podcast on Facebook — The private community Silvana turned to alongside the podcast while sorting out Felix's atypical presentation.
- T1D Exchange Registry — US residents 18+ with type 1 can complete the survey and help move T1D research forward.
Every word of the conversation
Hello, friends. You found part two. Scott knew you would. He believes in you. Right where he left it back in your ears.
Let's finish the show. We're glad you're here. Part two. Part two. Scott knew you would.
Part two. Part two. You found it right where he should. Part two.
You made it.
Let's get back to Scott. Wait. You haven't heard part one. Go find it now. Part two.
Part two. Part two. Part two. Scott knew you would. Part two.
Part two. Part Scott You found it right where he should.
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Picking the story back up, six days later1:34
I was so out of it. I was so out of it.
Well, we're recording now, so let me let's go over that. And so Okay. This is gonna crack you up because I was about to say to you, hey. Where did we leave off so that we can keep going? But if you don't know, that's okay.
We'll figure it out together. Hold on a second.
I don't know. I I don't know.
Okay. So what has happened? Why is there so much noise in my room? Let me fix this. Okay.
Okay. So you and I recorded. I had to run to go to a doctor's appointment with Arden, and we cut it short. How in the heck are we going to figure out where we stopped?
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I remember you saying something along the lines of Nigel being the unsung hero in this, and he's been talking to me about being the unsung hero all week. So Oh, I see. Less of that.
Oh, you don't need you
you don't don't need all that.
Let's see what we could figure out here. Hold on a second. Alright. Well, I'll tell you what. I'm gonna have to hit stop for a sec.
We I just went back and just listened for a little bit. We were up to the part where you were telling me that your life had gotten very crazy. Nigel took over the research, and he started looking at the insulin use, and that's where the story ends.
Okay. I think, what I'd said just before we start was that we'd we had did I say that we'd received a positive MODY?
I'm gonna tell you right now. Just go from the idea of your mom's health was taking up a lot of your time, and so you guys sort of pivoted. Your husband started to, you know, look into it.
Okay. I
And and then what he came up with was, if you're taking in all this insulin, you must be type one. How could that be going on for such a long time? And then you started to talk about Modi, and I cut you off.
Okay. So I think that just before that, the reason he started taking you over is because we had got a positive MODY diagnosis, and we were at the stage where okay. Let me go back. Let me rethink.
Take take a second.
I don't
Yeah. Just feel what feel where it feels right to just hop in and start to and by the way, what you can do is I'll leave this bit in so people know what happened. You have by the way, you are recovering from COVID, and I cut you off in the middle of a thought and stopped recording with you. So and now it is since then, by the way, I have flown to Louisiana, spent one, two, three, four days at the ADA scientific sessions, flown back, lived a day in my house, and now we're talking to you again. So if I'm not mistaken, it's been six days since you and I did this, right, about
And you've done a lot more than I have because I've just sat on the couch and tried to recover.
I have to tell you what. In a in in a week and a half, I'm headed out taking about a 100, listeners on a cruise, a seven day cruise. And I have to be honest with you, after that, I'm gonna sit on the couch for a while. So so what so just whatever it occurs to you, just start talking. We'll find it again.
Recapping the anomaly5:59
Okay. So I think we went back to what had happened initially. So, initially, what happened was that we were told that Felix was an anomaly. We were always being told that he was atypical. And at that stage, I and that was right at the beginning.
I started thinking, well, how can he be atypical with all these things? How can his his blood sugars not go too high? How can he eat, I suppose, more carbohydrates than would normally, be able to be eaten without taking insulin? Why has it taken six months for him to be put on insulin? We could explain it away by the honeymoon, but the paediatric endocrinologist would always say, oh, you know, he's he's quite we've not seen this before, and she's quite experienced.
Mhmm.
So fairly early on, I started researching, and I came up with perhaps it could be moody. So we're going back to the beginning. Yep. It could be moody. I tried to convince Nigel, my husband, and he was having none of it.
He was thinking it was all wishful thinking. And then when we got the blood test results right at the beginning, I think three months in, we couldn't understand them. We ended up seeing whilst we were waiting to see our public, pediatric endocrinologist, we actually saw a private pediatric endo who happened to be the head of the hospital that we were going to, and he had an interest in Modi too, which we didn't know about. It was just pure luck. And he suggested that we get tested.
So I think that put Nigel over the line. Even though we weren't sure, we'd got blood tests back that showed that Felix was antibody negative for three antibodies, but two were pending. And his C peptide levels and insulin blood levels were good. So there was a chance. And I think what swung the paediatric endocrinologist over the line was that we didn't have a history of type one.
There was a lot of type two in the family on both sides, but never really nothing no type one that we knew of.
Can you tell me So what do you think about that piece of information rang a bell for them? They ever say?
What do you mean?
Like, what about the fact that there was no history put them in another direction?
I think it was not only that. It was the it was a combination of that and the fact that the bloods looked good at this stage, that the bloods did not so there weren't any positive antibodies. So a combination of both. And I think he had a particular interest in Modi too, so he was possibly crossing his fingers and thinking, oh, perhaps we've got another case of this. As time went on, Felix's figures looked he looked like he was progressing, so we were giving him more and more insulin.
Forty units a day — the type 1 picture9:26
By the end, by, the end of last year, he was on about four thirty to forty units of insulin a day. So let's say twelve units of Levemir and the rest was Novaapid. So quite quite a bit. So from that perspective, paediatric endocrinologist was saying, well, it looks like it's progressing. He's able to accept more and more insulin.
His timing range is still really good. His HbA1c wasn't really shifting. It was like from 5.7 to 6.4, but, it didn't really go beyond that. We tried I think I talked to you last time. I we tried to get genetic testing, and that was a bit difficult.
The hospital firstly the genetics department firstly denied us testing, saying that we should go to a place that was closer to us. We tried that and that wasn't successful, so we went back to the hospital. And by the time we started talking to our paediatric endocrinologist again about possibly getting tested, Felix had had follow-up bloods, and he now had one positive antibody, and his c peptides had decreased. Mhmm. And so from the paediatric endocrinologist's point of view, it was fitting her narrative.
She had, you know, kind of predicted that he was possibly in a honeymoon stage, and there will come a time where his antibodies will become positive and his C peptide will come will reduce or decrease.
Let me
So that's what
Let let me ask you
a no. No. Don't be sorry. Let me ask you a
question there. You get on a roll when you're I I feel like you're, like, looking into your mind's eye when you're talking, and sometimes I feel like, oh, I just
wanna Yeah. It's almost like a debrief.
Right. Right. Right. And I just I feel like I wanna say something, and I'm like, I I we don't have any visual cues. So can you tell me why it mattered to you?
Like, why didn't you just say, well, listen. Moody type one, you know, classic blah blah blah. He's gonna get insulin. He's gonna use his pump. He's gonna use his CGM.
What do we care? Like, why why did you kind of have your teeth around it? Was it
Well, there is sorry. There's 17 types of note Modi, and I had no idea if he there was some that were were there was no way that he he could have possibly had because the symptoms are very different or, you know, that but there are a few classes of Modi.
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Hoping for a diagnosis that needs no insulin14:21
That didn't require insulin or required just tablets. And so
Were you just hoping for one of those?
We were hoping. Yeah. I think we were hoping, but I think just I think by this stage, initially, I was just listening to the podcast. Then I started looking at the Facebook page, and he really didn't fit the what you would think would be the typical a typical type one.
Mhmm. His presentation didn't sound like other people's.
The presentation was a little bit different. It seemed we were either doing an absolutely fantastic job at keeping him at a great level, which I thought we were, and we possibly were, or there was something else going on. And I think because the hospital never said it's definitively type one? I mean, in appointments, it was kind of said, but in letters after appointments, it was always, you know, we can't 100% rule it out. So what happened is we went back to the paediatric endocrinologist and by this time his bloods were more indicative of a type one presentation.
So it was really difficult to get the genetics department to agree to have some testing. And I think the we have a really good relationship with a paediatric endocrinologist, and I think she thought that we wouldn't be able to move past it.
I see.
And she just wanted Felix on a pump. She just wanted us to move on, and I think we have a mutual respect for each other. I think we've always been really open, and she's always thought that we've done a good job, and, you know, Felix is our priority. I think and I can't really put words in her mouth, but I think it was just because she thought that once we had the testing, we could move on. Are you We could actually just move on.
Are are you and Nigel older parents?
Yes.
You are. Okay. And he and Felix is your only child?
Yes. Yeah. So I was 42 when I had Felix, and Nigel possibly won't wouldn't consider him an older parent. He's turning 50 next week. So he was he's seven years younger than me.
So 35. So he wasn't
Wanda, hold on a second. We've been talking for an hour and fifteen minutes. Right? You didn't tell me you robbed the cradle. How did this happen?
What what what what let's take a let's take a turn for a second. How'd you get a younger boy? How what what happened there?
What I did is I left Sydney and went to Melbourne. And, it's great when you don't have, you know, family and the expectations of work, and you just become your own person. And so I don't know. I just met
Are you telling me Melbourne? Are you telling me you you went to a new location, let your hair down a little bit?
I think so.
No kidding.
I think so. I I yeah. I think so. I think, I grew up in a very strict Italian household. Mhmm.
A very loving one. So but and I just followed the, you know, university, go go go to work, work, and did the right thing, I think, according to everyone. And when I moved to Melbourne, I
still doing shots off
of it
was started doing shots off a young men's chest. Is that what you're trying to tell me? Oh, Silvana, really? Am I onto something here?
Not on air. Why not? It was it
no. It was it was great. It was
great. Pause for a second to really absorb how good I am at this job, and, and then we'll move forward. Okay. So you're So, Scott Yeah. Go ahead.
Scott, possibly shouldn't tell you that, me having partners in the past that were younger as well, in Sydney, I probably shouldn't tell you that that happened as well.
So You've got a tight
I don't think it was Melbourne. Oh. No.
It's just
I don't know. Maybe I I think I'm quite petite, and I think I look younger than I actually am. Perhaps not now. I'm 57, but I did a while ago. So Is it I I have no idea.
Yeah. Every I I met a I met a a, you know, a grown woman this weekend. And as I stood in front of her and chatted with her, there's part of your brain that goes, she might be 14. And, you know, and she's 28 and Yeah. And telling me about her job.
And I'm like, some people just have a a, like, a look that just it's crazy, you know, how much look and isn't it sad when it goes away because you spend I used to have that. I always look younger than my age. And then one day, you find that you're still saying it, but it's not true anymore.
That's true. That's true.
I did I did I did say to someone this weekend, because they were talking to me like I was much younger than I was, and I said, I see that my dark hair is confusing you. It's like but but I am much older than you think. But but never thought. Okay. Well, it was a nice little it was nice to get to know you for a second there.
That was because we really jumped right into the whole Modi thing when we started talking. Yeah. Okay. So you're you're starting to, like, pull this information together, and does that change things? I mean, does the does the learning and the figuring out change your direction, or does it just allow you to put down the wondering and move forward?
Eight months for the genetic result20:30
I think what happens is that well, what definitely happens at the end of last year, we so so what ended up happening is that the genetics department agreed, for us to have Felix tested. The hospital had been great. They'd actually extracted his DNA months and months, I think a year prior. It's just that there wasn't that approval. Once that approval happened, it wasn't expedited because I think the hospital everybody thought that it was just a tick the box so that we could move on Mhmm.
Rather than a fact finding sort of mission. So that meant that I signed the consent for everything to for the go ahead on, I think it was the day before Christmas when the genetics department closed down in 2024, and we were not told that he was he had actually tested positive for Modi two until August of the next year. So it took eight months.
Oh, wow. How did the how did the news how did the news change things?
Well, we didn't think it was going to. So in that appointment, the pediatric endocrinologist basically said, the genetic the genetic testing has come back, and you're positive for Modi two, and you can relax now. And my first thought was, well, he doesn't have he doesn't have type one. If we can relax, he doesn't have type one. And she told us that it is possible to have type one and Modi two, but she had not seen this before.
I mean, Modi in itself is quite rare, so we weren't sure if she'd never seen Modi before or if she hadn't seen that presentation before.
Mhmm.
She did say that Felix's numbers were higher than expected from Modi two person, and but there's a spectrum. So Felix may have the worst of it. And he's also going through his teenage years, so apparently during teenage years your insulin requirements are higher. And she said that we wouldn't really know whether or not he'd have type one until we did bloods again. And so we went back to the to bloods.
I kinda well, I think both Nigel and I said, well, his bloods have shown a low c peptide. They've shown a positive zinc transporter. How that you know, we were told that that is indicative of type one. How can we now be saying that it may not be type one? I mean, to be truthful, Nigel was hoping against hope that it was Modi two.
I think for Nigel and I think at that moment, I realized for Nigel, he'd been a real burden, the whole taking of insulin, because for him, he has dreams of taking Felix traveling, which we'd done a lot of before mom had got sick. Mhmm. But traveling and diving, he scuba dives. And with diabetes type one, it's more difficult. And with Felix and his anxiety, he really didn't like being away from me because I was the one that really oversaw the whole insulin thing.
So Nigel didn't see a distant well, say a short term to medium term future where we could he could travel with Felix on his own. So I think Nigel was hoping that it was Modi two, and his head was already thinking of ways in which we could test it. I was grateful that it was moody too, but we were both extremely exhausted. So it was quite strange. Yeah.
We were really happy, but we were also quite numb. We'd had a year and a half of just dealing with Felix and his anxiety around type one.
The toll: anxiety, and disordered eating24:57
Yeah. I was gonna say it's been a long time and a lot of focus on something, and your story doesn't seem as dire because of your accent and the fact that you say Nigel and mom sometimes. And I'm not even I'm not I'm not even joking. So but but this is a a harrowing, like, chunk of time in your life that that, by the way, wasn't that long ago either. Right?
No. And it was it was really difficult for Felix. So, in terms of just just to segue a little bit, Felix has loves numbers. So as soon as he had a finger pricker, you know, he always wanted to know what, his blood sugar levels were. As soon as he got a CGM, he started becoming anxious because he could see his numbers all the time.
And he was testing. He was looking at his numbers a 150 over a 150 times a day, and that progressively came became worse when he experienced his first low. So he's won for accuracy. So things like his finger prick not not being the same level, like his his blood sugar level being the same as his CGM sent him, you know, in a spiral. So he wouldn't trust his CGM.
He'd finger prick all the time. He stopped eating at school because he was too scared to take insulin because he was scared that he'd go low. He would eat. He became quite anxious about lows and totally ambivalent about highs. So he was happy to be at, say, just under one hundred and eighty all day at school so that he wouldn't experience a low and be at school
Yeah.
With From his calm. Nobody to help him.
Incredibly calm. Yeah. And we
were sleeping with him in bed because he didn't wanna be alone. He stopped catching the bus to school. It became he lied about see, it was quite ironic because he actually did not have problems with injecting. So injections were not a problem. He had pens.
It was just the amount. So we would argue about how much he would eat because he refused to give himself more than five units of NovoRapid at each meal. So at one stage, had the social worker, the psychologist, the dietitian, the paediatric endocrinologist. You know, we had all these meetings with all these people trying to assist Felix, not with type one per se, but his anxiety relating to type one. And it was really, really difficult.
It was it just changed the dynamic dynamic of the whole family. We were always under constant stress because mealtimes are often. And so every mealtime, he'd argue at length about what he would eat, what he didn't want to eat, how he wasn't hungry, how he would take insulin, but he'd take it away from us and pretend. And then we'd look at the needle, you know, the pen, and he'd taken less than he'd said. And so things towards the end were spiraling spiraling out of control because his blood sugar levels were variable, a lot more variable than they'd been leading up to that point.
But we think it was because he was underbolising. He was eating, you know, sweets to keep him up at a certain point without telling us, and we just didn't know. We just we would think, well, you know, this must be a protein, you know, the effect of protein. This must be this, and it could have been anything. We just and as soon as we got him down to a nice level, he'd eat, he'd go and get something to eat Mhmm.
And not tell us. So it was spiraling totally out of control. He for a year and a half, he didn't see his friends. He was too scared to go out with his friends. He wouldn't go to birthday parties.
It really impacted, I think, his independence. He's you know, like, he was 12 when he was diagnosed.
Sure.
And I think there was a real impact on his social growth as a result.
Are we talking about a are we talking about an eating disorder? Are we talking about an anxiety issue that that was just touching everything? What do you think is it still happening?
“Disordered eating, not an eating disorder”29:39
No. No. So no. It's not still happening. I wouldn't I wouldn't have called it an eating disorder.
I would definitely have called it disordered eating.
Okay.
So I'm not sure. So I think it would have been leading to that. Before that, he is not a fussy eater. He's quite small as all of us in our family, and he's quite thin. But he was he's never been a fussy eater.
He and initially, when we started with insulin and he wasn't he wasn't traumatised, he wasn't, you know, panicked or or anxious, we never had a problem with what he was eating. So, you know, I'd heard on the podcast, you know, some kids, especially when they're younger, they'll say that they'll eat something and then they won't. They're not hungry. He'd always eat what, you know, was placed in front of him. So he had no problems at all.
It was anxiety. It all stemmed from anxiety.
Mhmm.
So and no amount of counsellor, dietitian was really working. He was on this he was on this path on his own. He felt he was just anxious. He was just extremely anxious of going low.
Okay.
He actually just before he was diagnosed with ninety two, he he asked me whether he I thought he would ever be able to live outside of home on his own. And I actually said to him, because he listened to the podcast with me, on our way to school and on the way back, and he and I said, but Arden does. And he said, oh, yeah. That's right. And so, you know, he felt a little bit calmer with that, but it was horrible.
It was for him. It was just it was traumatic, I think.
Yeah. Can I can I ask, is he is he a particularly bright boy? Like, is he smart, thoughtful? Like, because he's having deeper thoughts than I think his age would indicate. Do know I'm saying?
I would say he's extremely smart, but he does suffer from anxiety and he suffers from ADHD. So what the ADHD does is that he hyper focuses on things, and he creates habits that are not necessarily self fulfilling. You know, they're not they're not great for him. So I think he he can spiral quite easily. And so he really enjoyed the numbers.
His thing. Maths is his thing. He loved the numbers. He really understood the variables. He really understood.
But for the anxiety, he would have been able to manage. The anxiety
I I forget. I'm sorry. Is the anxiety a family tradition?
My mother has anxiety. Mhmm. I would say that I'm a type rather than anxious. But
Yeah. That's what people our age call it, by the way.
That's true. So I don't know. But my mother definitely suffers from anxiety. Felix has suffered from it for a long time, but it manifests in different ways.
So even when he was a little boy when he was a little boy, you could see it in different things?
Well, when he was a little boy, he was too scared to, he was very smart, so he'd win awards weekly. He was too scared to stand up and in front of assembly and receive the award. So he's another example is he he has done Taekwondo for many years now. He's he's going for his third dance soon, so that's great. But when he started Taekwondo, you know, you have to grade every so often.
His first grading, I think his first 10 gradings, he cried. And, I said to him, it's okay. No one's really looking at you because, you know, it's it's full of parents. You know, there's all these kids grading, and I was saying nobody's looking at you. Everybody's looking at their own child.
And he said he said and I said, you're not going to it doesn't matter if you fail. You don't I said something along the lines of you're not going to fail because no one fails at the beginning. And he said, I'm not really scared about failing. I just don't want everybody looking at me. So I think he never really liked being the center of attention.
Mhmm. He grew out of that late in primary school, but it reared its ugly head when he started high school. He went to a big high school. He didn't know anybody. It was a selective high school, so he suffered very much in the first year of high school of imposter syndrome, thinking that he wasn't
He didn't belong at this selected school. Yeah.
Yeah. He didn't belong because he hadn't we've never tutored him. We've never really pushed him. We've just we've just gone along for the ride, really. And Are you Yeah.
Going to address the anxiety some way?
Well, we do. We've seen psychologists on and off. And at the moment he doesn't seem to be anxious about anything. He doesn't like trying new things. That's his perfectionism.
So we try to I I try exposure therapy once in a while, so I'll just kind of throw him in the deep end, and he usually he's usually fine. I'm not sure if it's the right thing to do. But he's fine at the moment, but but we are he's he's exactly the opposite at school now. He really
It's working.
He's finding it difficult to focus. No. He's finding it really difficult to focus, and he's not enjoying working. He doesn't work. He's still doing well, so he falls through the loops, I suppose.
Like, he
Oh, he's smart enough to get by, you're telling me?
He's smart enough to get by, but I don't think he he's in year 10, which is two years before he does what we call the HSC, to then go on to university if that's what he wants to do. Right. So he's surviving, I think, at the moment on pure talent. But it I yeah. Which is great, but not so great.
But he loves school. He's got a really good set of friends, and he absolutely loves school.
He likes being there.
Good thing.
ADHD, screens, and an addictive personality36:47
And now are we worried
I think.
Savannah, are we worried about, like, him getting a little older and self medicating the anxiety or the ADHD?
We haven't really this year is a year of looking into ADHD because until last year, we were looking at type one and Modi. So he has a very addictive personality, and I'm a little bit worried about that. Yeah. He's seeing a psychiatrist for further testing next month, and we will be seeing a neurodevelopmental educator. I didn't even know they existed so that he can get assistance at school Because he he performs well, but he's not doing any work in class.
So all the work he does is at home, which puts a stress on family
Right.
I think, because there isn't any other time to do anything else. So we just have to get, I think, him focusing a little bit more at school and us having family time at home and catching up on on the last year and a half of stress.
Yeah. This
is I think we'll get there.
Yeah. Yeah. I mean, it's a long, long process. I hear a lot of people talk about it. You know?
I mean, I can tell you, but, obviously, my family has, you know, type one and a lot of the stories you tell, like, you know, my my son when he was, you know, Felix's age younger didn't you know, was was always kinda thinking like people are looking at me when they weren't. Mhmm. It's a thing we had to kinda get through. I would I would characterize everyone in my family except for me as anxious in some way. And Mhmm.
You know, Arden has a a terrible needle phobia that I think is is purely from anxiety. And Yeah. And we're working through that right now. I don't have enough information yet to to share with people to to see if it works or doesn't work, but I I will at some point. I hope I see it.
I mean, my wife is classically, you know, what what people in our generation would call type a. Right? Like, give her something to do. She does a perfect job at it. She won't stop till it's finished.
You know, the minute it's done, she's on to something else. Never feels like she's done. If I just get this done, then I'll be there. Like, that kind of talk. Like, she's a great employee.
Mhmm.
You know what I mean? Like, it it's you should hire my wife. Like, you give her something to do. Mhmm. If it's gonna get done, it's gonna get done really well.
But that doesn't leave a lot of room for her in her life.
Yeah.
And I'd I mean, I've been watching these three people since I, you know, since I since I met my wife, basically, and I've been married for thirty years this summer.
Congratulations.
Oh, thank you. It does feel like something to congratulate somebody for, actually. Mhmm. And I'll tell you, like I mean, you guys a lot of you guys listen to this podcast for a really long time. I'm fairly good at figuring things out in life.
The anxiety thing is it's not it's there's no, like, simple answer to it. And it it impacts No.
I
different people in different crazy ways.
I totally agree. And we've tried so many things, and it's really difficult because Felix is getting to the age where he's not necessarily going to be receptive to all of my, you know,
ways of trying. You know? Or
You're so long. I know exactly. Here's how I usually put it. They get they get an opinion. And then Oh, sure.
Yeah. And then they start and then they start pushing back, or want to, you know, delineate themselves from you, which, by the way, those things are, you know, very healthy. But but you start to have this feeling of, it's a ticking clock then. Right? I only have so much time to get him to a place, show him something, make him believe, make something work before he's one day not gonna have to listen to me and he won't.
And then it doesn't it feel like you've this is how I feel. I don't wanna put words in your mouth, but it feels like you're shepherding along this thing, and it's a lifelong it feels like a lifelong job that somebody is gonna show up in the middle of and tell you, hey. You've been working really hard at this, and I love that it means the world to you, but you don't get to say anymore.
And That's true.
Yeah. But you have to step back and watch the rest of it happen. Yeah. Yeah. It's a terrible feeling.
No one should have children. It's very, very hard on you. Know. If we were smart, we all would have just done what you did and, you know, moved to Melbourne and found a young guy and had a party and then let the let the planet die. What were you all having kids for?
Would have been one nice road go at the end. You know?
Uh-huh.
No. My gosh. I feel for you. Do you do you consider medication? Do you consider alternative therapies?
Like, I mean, you sound like a person who's been down every rabbit hole there is to go down.
Medication, stigma, and treading carefully41:57
Oh, everything. So at the moment, he's on new medication because the old medication didn't appear to work. And we've seen an integrative paediatrician for the first time, and so we're on a very supportive supplement protocol, I could say, and also new medication, but we're finding, and it's been four weeks, we're finding that it appears that he acts as if he is not medicated. So we've taken a step back. So what I'm assuming we've got another appointment next week, and I think what I'm assuming is that the new medication is not at the right dosage yet.
But, you know, you have to kind of tread carefully because it took us a long time to even or it took me a long time to even consider medication.
No. I yeah. I hear you. And then the process takes so long that the kid can get frustrated. Like, if this none of this works, why are we bothering?
That kind of thing. Yeah.
Well, I was more I I he doesn't get frustrated so much. He kind of enjoys not having not having great focus. He loves being distracted at at school. He loves being on his screen. He loves I think it's more oh, I've gotten I've gotten my train of thought.
It's just it's just difficult having to try things and see them not working. I think the reason why I really didn't want to start medication with him is not because I don't think medication is valid, it's more that he already had self doubts and anxiety, and I didn't want him to think that we were medicating him to fix him. So I didn't want that to be another source of anxiety. Yeah. And I think I was overthinking it because he doesn't overthink like that.
He's in some ways, he's a typical boy, a typical teammate
for both the easiest. I I that's what that's what if I could if I could go back and choose, I just take three boys that are outside throwing rocks at each other. I'm like, that's perfect.
Yeah. Is
were you ever worried about stigma around medications or even just the idea that you can't overcome it on your own?
I was I've got quite a not quite a few friends, but it's funny how many people come out of the woodwork when you start talking about your child having been diagnosed with ADHD. It's like, you know, it's quite so I had friends that unbeknownst to me had children that were my child's friends that had ADHD that were being medicated.
So
I don't think and he now goes to it, like I I was saying, a selective school, and there's a lot of quirkiness in that school. So I think there's a lot of people, and I'm this is just inferring. I I don't know. But I would suspect that a lot of those children are twice exceptional. So so gifted and with a some sort of diagnosis, you know, some being on some sort of spectrum.
So I don't think he is stigmatised or that I feel that he's stigmatised, but in the same breath he's very secretive is not the right word, but he really doesn't he's got close friends, but I don't think many of them would have known that he had been diagnosed with type one diabetes, but for the fact that he had a CGM, you know, or but for the fact that he may have experienced a low in school. He doesn't really like talking about himself on a very personal level. So at that level.
Yeah. I struggle between the delineation between this is who you are and why are we medicating you. Like, just go be lovely you out in the world. And the the point when it gets in the way of health or your ability to take care of yourselves like, I'm not I'm not saying like, some people might hear me saying, like, you know, I want like, medic medicate that kid until he fits into society. Like, I I don't mean it quite like that.
The phone he wasn’t supposed to unlock46:40
I mean more about, like, just the feeling that, you know, you're gonna be able to release him into the world one day, and he's gonna be able to take care of himself and be be healthy and happy and that that stuff.
I would totally agree with you. I think from our perspective, it was more that we were saying that he's a bright boy, and he's a beautiful boy, but getting dressed was totally typical for him. You know, even now, now that he's he's on this new medication, he will get dressed, but his shoes aren't on, or his hair's not brushed, or and and some people may say that's a typical teenage boy, but it's always setting the table. There's always half the things missing. You know?
It's just
Mhmm.
He's he really, really struggles. And what I and where I see it most is just focusing enough to to study, to actually and we don't mind if he can't, but it's really frustrating to see someone who easily grasps concepts, but he won't stick to it for more than a minute because he can't, not because he doesn't want to, because he's unable to. And that that inability is what, I think makes me sad or makes me want to think that, you know, we should do something about
it. Silvana, why don't you just make him a data engineer and let him go live his life? Just teach him how to code for god's sakes. He'll be fine.
I swear.
Yeah. Yeah. I will
will tell you a story. We gave him a phone. Everyone has a phone at school. Well, it it's banned in schools, but, you know, going to school, he he started catching the bus in high school before he'd been diagnosed with type one. Mhmm.
And he wanted a phone, and he wanted an iPhone. We said, no. You're not going to get an iPhone. We're going to give you a phone where we can kind of track where you're going. There are apps on the phone, but we'll give them to you once you you know, we'll unlock them once we can see that you're you've been responsible because he'd had a history of playing with, say, for example, my my mum's phone until it had gone dead, and then we'd go out, and that's her lifeline to ring us if she needs help, and she wouldn't be able to.
So he doesn't really think beyond the now. And so within the first three or four weeks, he'd done something to the phone. He was able to access all the apps that Nigel had locked down. Nigel, who is a software engineer Mhmm. So he'd
Oh, okay. I see. You you laughed because you knew. Go ahead. I gotcha.
Nigel just could not do anything. I have no idea. That is not my area. You know? And so we took it back.
It was under warranty. We took it back to the shop who took it back to the manufacturers and said that it would be an easy fix. We didn't get a phone call back for five weeks, and at five weeks, I got a phone call saying, we're not sure what your son has done, but when he turns 18, he's got a job because the the code that he has used is phenomenal. We all just have to give you a new phone because we don't know how to how how what he's done. And so I'm just hoping he stays away from screens.
He's too addicted to them, but, you know, I mean, that that's his passion, I think.
Yeah. I mean, it just it listen. I there's a ton of lovely people who I know who, you know, code to your son. You know what I mean? Like, have his his, you know, his skills, his talents, his eccentricities, and, you know, good with math and understanding computers and things like that.
And there's just I don't know. Like, I I really do fall in between just let them go be who they are and you know? But someone's gonna have to pay the rent one day, and it often isn't that person. You know what I mean? Like, it there and that that's the fear when you're a parent.
Like, is my kid just gonna be, like, you know, young Sheldon, or is he gonna, you know, is he gonna be tearing apart old computers in, you know, in the back room of his apartment that he hasn't paid the rent on in six months, is about to get kicked out of and hasn't eaten in three days and doesn't know it. Like, what's the it's hard to know. You know what I mean? Like, it I
don't know.
It's all frightening. And I think it's possible I find myself saying this a lot lately, but I really think it's possible that if I made a podcast about something other than an autoimmune issue, I would not be talking about anxiety this much with people. Yeah. I just feel like there's got to be something intertwined between inflammation, autoimmune, anxiety, ADHD, that sort of stuff.
Just feels like agree with
you. Yeah. Yeah. It just feels like it to me. So I don't know.
Like, hopefully, someone will figure something out in my lifetime so I can either be wrong or and move on or be right and pat myself on the back for a second. Listen. Before I let you go and by the way, tell people again what time it is where you are.
It is almost midnight, but I have got a few more things to say.
Do you? Well, then let me do something while you kinda collect your thoughts. Okay? Yep. I just want people to kinda see this.
Type 1 vs MODY 2, side by side52:09
I have a little breakdown list here. I hope this is right. I used the Internet to do it. Differences between type one and MODY two. The cause of type one, obviously, immune system attacks, pancreatic beta cells reducing or eliminating insulin production from MODY two, a change in GCK, oh gosh, glucogenesis gene.
Gluca can you say it?
I I don't know how to pronounce it, but it's glucokinase.
Glucokinase. So I don't know
if
that's Yeah. Which makes the body regulate glucose at a mildly higher set point. Insulin production, little or no insulin, obviously, with type one over time. C peptide often low or declining. MODI two, insulin production is usually preserved.
The pancreas still responds but at a higher glucose threshold. Autoimmunity with type one, positive islet autoantibodies typically not autoimmune in MODY two. Antibodies are usually negative. Typical glucose patterns. Type one can be highly variable without enough insulin.
Glucose can rise quickly and dangerously. MODI two, mild stable fasting hyperglycemia often present from birth and usually not very progressive. Diabetes genes, notes fasting glucose is commonly around 5.5 to eight millimoles in MODI. Symptoms at diagnosis, we know thirst, frequent urination, weight loss, fatigue, all those for type one. For MODI two, often no symptoms frequently found incidentally or example, for example, during a routine lab or pregnancy screening.
There's DKA risk, obviously, with type one. It's not typical with Modi treatment for type one. We all know it requires insulin to live and manage, for blood glucose. Let me take a drink. For Modi, usually no glucose lowering treatment is needed outside of pregnancy.
Meds, insulin often have little effect because the body keeps defending the higher set point. Complications and risks, I don't think we need to talk about them about type one. We're all well aware. For MODI two, they're generally rare in classic GCK MODI because hyperglycemia is mild and stable. There's, of course, a family risk in type one, but it's not, simply just one to, you know, parent a child.
In MOTI two, it often is what they call autosomal some what is that? Autosomal dominant. A parent with the variant has about a fifty percent chance of passing it to a child. And genetic testing confirms, Modi, of course, you know, glucose a one c and c peptide and autoantibodies confirm type one. So that's I just wanted to make sure people had that that idea.
Nigel’s hypothesis about the set point55:02
That's So yeah. So MODY two, as we found out, is basically, Felix having, an elevated set point for insulin secretion. So when we go back to the beginning, when he had a slightly higher, fasting blood sugar level, that's because that's where he sits normally. He doesn't sit at a low level like everyone else, a normal level. He sits higher.
And therein lies the problem. He was he was he presented with a higher fasting blood glucose level that was slightly higher. So he wasn't in DKA. He didn't he was totally asymptomatic. It was a coincidental finding because we'd gone in to talk to a naturopath about ADHD, but, you know, the blood showed that.
And so it was almost automatically assumed, him being lean and a child, that it looked like very early onset type one. So going back to the to the last appointment when we were told it was Modi two, the endocrinologist just said, well, we can't really take him off insulin because he seems to we don't know if it's type one and type and MODY two. We've not seen that before, but it could be. But he seems to be at the worst end of the spectrum of MODY two, so he'll need insulin. Nigel, in his good mind, he was, you know, his mind was ticking over, he did suggest coming off insulin, and the endocrinologist said, no.
There's still a risk of complications. So MODY two is supposed to be non progressive. And I suppose, like you said, insulin's not usually required except in pregnancy, and Felix is not going to ever get pregnant. So so when when Nigel suggested coming off insulin, it was a definitive no, and it was a definitive no for me because I thought, well, I don't understand Modi too. Why is it okay for Felix to have a higher fasting blood sugar level and not have complications?
But, anyone else, why has he got this superpower? And initially, we were told that we don't know why. You know? We don't know why. And then we were told that it's because they think it's because there's very little variability.
So Felix's set point is high. Mhmm. So he will release insulin at a higher set point, but he then when insulin is is released, he'll come back down. So his variability is the same variability as or similar variability to somebody who doesn't have diabetes, but at a higher level. So if you're not looking for Modi, it does look a lot like type one.
Mhmm. So this is where I think last time you said that Nigel was the unsung hero, and I'd vowed never to say that in the same sentence, but I was at this stage, we were really exhausted. I'd been looking after Felix for a year and a half, not sleeping at night, and Nigel started the research. I'd started it, and he continued it. And he started looking at, well, why can't it only be Modi two?
Why insulin masked the MODY58:42
You know, why does he have to be on insulin? How can I convince the paediatrician that he needs to be off insulin? And what he did find was that insulin that's given through a needle, so exogenous insulin affects your own insulin production and suppresses your own insulin's production. So he started thinking, well, the reason why Felix could take so much insulin was because we were giving him insulin before his own insulin kicked in. So we were so good at giving him insulin that he never got to the set point of wherever he needed to be for his own insulin to kick in.
And as a result, when he got a C peptide test, it resulted as if he didn't have any insulin, but he did. It's just it was never kicking in because we had totally tight control of his his insulin
Is there a
his blood sugar level.
A feeling that the additive insulin before that somehow changed his body's, I don't know, need or the set point, or is that no. Nothing like that?
No. Not at all. I think I think what the pediatrician looked at was the fact that the c peptide level has decreased. He had a positive antibody, and we were giving him more and more insulin, and he could accommodate that. He could just accommodate more and more, and a person who doesn't have type one shouldn't be able to accommodate all of that.
But Nigel hypothesized that if we kept him below his set point, a MODI two a MODI two patient could accommodate as much insulin as was needed because he was never producing his own he was never secreting his own insulin. So it's like he's a type one, so he presents like type one. Mhmm. That was his hypothesis. What strengthened his hypothesis was that Nigel doesn't like doctors, and every time he's gone to a doctor, he has been told that he's insulin resistant.
Right? And he had a long time ago, he had one of those glucose tolerance tests.
Yeah.
And the doctor said, this is very strange. The way that you're reacting is you've got an insulin response, but it's happening late. I've never seen it before. And so Nigel hypothesized that he has most likely has MODI, and that's the way that it presented. And then we got on forums and found that lots of MODI two patients had been misdiagnosed as either type two or type one.
And you can't really be misdiagnosed as type one if you are not taking a lot of insulin. So we went back. He he finally convinced me because I really didn't want Felix to go off insulin. I just thought, you know, I'd in my mind, I just thought I want to keep him as low as possible. I don't understand this mody two thing being high and being fine.
We went back Nigel managed to convince me. We went back to the endocrinologist and asked if Felix could come off insulin. And she initially said no, and then she said, in the same way that she said before, okay. So that we can go on a pump later, why don't we trial it under supervision at the hospital? But as soon as he starts showing signs of ketones, we stop the experiment, and we said yes.
So earlier this year, and we will not ever forget the date, it was the January 21, Felix was admitted into hospital for that supervised trial of insulin withdrawal. He was asked to or he ate loads of hot potato chips, had an apple juice, had two sandwiches with white bread, had cheese and crackers, had milk, had as much as he wanted to eat, and his glucose response was great. So he did go to about I think about a he he went to a 180, just a bit above that with all of that food, and then came back down. He was supervised for, I think, twelve hours eating whatever he wanted to eat, and there were no signs of ketones. And the same thing happened.
He went up higher than, you know, higher than a 180, and then he'd come back down, but come back down to seven or eight, which is his baseline. And eight is I keep on forgetting. Eight times 18. A 144. So higher than we would have ever wanted, but indicative of Modi only.
Off insulin — and the long view1:04:09
So on that day, he came off insulin, forever.
How long ago?
So that was January of this year.
Oh, wow. Six months.
Yep. I love that. A month ago no. At the end of April, we went back for our follow-up appointment. The pediatric endocrinologist has been in contact with us regularly just to make sure, particularly in the first month.
We had our follow-up appointment in April, and he's been eating since then. Since January, he's been eating like he would normally have eaten prior. A lot more junk than I would like because he's
been eating
for lost time.
Yeah. Yeah.
And his time in range is 94%, and his h b a one c 6.4, which is what it was when we he was on insulin just before he was taken off insulin. And that's in line with all the articles that say that that indicate that, insulin for MODY two, patients doesn't do anything. It's just not it it doesn't change h b a one c. It may change, your insulin levels a little bit, but it doesn't change the average. And I think the reason why is that because Felix's set point is higher, he will always we can get him down to, you know, four, but it will bring him back up to where he naturally sits
What
which is higher.
So what are they telling you about, like, a lifetime with this and what to look for in the future and how this might go for him for his long term health? Have
they Okay.
Yeah. And before I before you answer that, I've had a number of Mody two conversations in my life, and not one of them isn't confusing. I just wanna say that. But but but so, like, I you know what I mean? Like, what's your what's your short term, you know, midterm, long term desires, goals, reflections, things to pay attention to?
And then I gotta stop you because the editor's gonna scream at me because this thing's two hours long. Go ahead. Go ahead.
Sorry. So what we've been told is that there's only a very small percentage of people that develop any sort of complications from MODY two. So because it's a non progressive type of diabetes. So long term, he just gets monitored at this stage. It's not even long term.
Short term, in the next year, we'll have an appointment in one year's time. He'll put a CGM on in six months' time to make sure that he's still tracking like he is, because we did have that positive zinc transporter antibody. So initially, we were told that he's got he's more at risk of developing type one, but now we've been told and what we've researched is that zinc transporter is the most likely antibody that can result in false positives, and it was only mildly positive. So it may just have been a bad batch of tests. I don't know.
So it may just not because every he's had subsequent antibody testing, and it's negative. So for us, long term is that he will possibly not even be monitored. His risk of developing type developing complications is minimal. It's higher if he becomes bigger. So I think if he starts developing type two, but then that's, something that you look for in the future, and he'll be an adult by then.
So he just lives as though he doesn't have MODY two.
Interesting. Are you
The interesting thing
Yeah. Go
ahead. Is that, it's very rare that MODY two just happens de novo as a, you know, spontaneous mutation, it's very likely that it's a genetic mutation inherited from one parent. Nigel has been tested. He is a 100% positive that he's MODI two just given his presentation throughout his life, but he is a little bit afraid to get the the the result because he's a scuba diver, and he doesn't wanna be limited. The other interesting thing is that Nigel's father has been on insulin for twenty years.
Mhmm. He against he our our advice, he took himself off insulin unsupervised about a month ago, and he was fine, but he had to eat low carb. But he is quite he's got a wide girth. So I would suspect, and I'm not a medical professional, that he possibly has two. He definitely has Modi two and possibly type two.
I
see. He's he's 70 rather than type one.
So Well, this is fascinating and and twisty and turning and oh, is there any part of you is there any part of you that's that's disappointed that you even noticed it? Do ever just think, like, would it just been great if we didn't know about this and we just went along?
No. Because Felix would have been on insulin all of his life, which I don't think would have been a problem for me if I'd managed him, but he I I really didn't see a way that he would overcome his anxiety. It was so Impactful. Full on. I just can't it was it was he just couldn't get out of his head.
Yeah. So I didn't see a way I couldn't see a way out. So I I'm actually the opposite. I think if I'd never thought of it, you know, wished for it initially, if it had never been proposed to the hospital, Felix would have been diagnosed as type one forever, and he would have been on insulin forever. Whereas now we have a child who's not on insulin, so his anxiety doesn't manifest in terms of that that, in terms of having to take insulin shots.
And the likelihood of him having complications is very like, I think it's one percent.
Yeah. And I hear you. You're actually you're actually the hero of the story, though.
Oh, thank you.
Yeah. We gotta take the the the
Nigel here.
Yeah. Let him know. That's enough. One week of him prancing around the house, calling himself. That is enough.
Yeah. But we do really want to thank you because I think without the podcast, we wouldn't have been, I think, empowered enough or knowledgeable enough to kind of deal with Felix's anxiety. We were by the time that he was on insulin, which he didn't need Mhmm. We felt well, I felt at least that I had a good grip on what insulin was about, and I also understood that there were so many variables and that it wasn't a, you know, you give this much and set and forget. You know?
Like like, the hospital was kind of starting to talk to us about.
Yeah.
So I think
Well, I'm the hero then. I mean, honestly, really, what I'm hearing, Silvana, is that this is me. Okay. Although what I'm really hearing is that everybody involved in this story picked up a mantle at some point or another and helped drag it across the finish line. In the end, like, it's yeah.
Whatever the day was, that day needed a oh oh, Silvana, this will mean nothing to you, but I can finally use a Metallica song title as a we're gonna call this one hero of the day. There we go.
Why would
Because at some point, Nigel was. At some point, you were. Maybe I was for a half a second. And your son, of course, is Felix is is living through all this and dealing with it. He's obviously, day to day, the one who's, you know, dragging most of that mantle across the line.
So Yeah. That's true.
Yeah.
We that's really sad. It I I don't wanna say it takes a village, but, apparently, today, it it it does. And part of your village is a podcaster in New Jersey, and part of it is a a formerly hot guy that you married a long time ago. I don't know. Maybe Nigel still is.
I don't know. And and a mom Of
course he is.
Of course. And a mom that doesn't wanna give up, and now you're gonna turn all this focus on the next thing and see if you can't work something else out. I have to tell you.
That's true.
Yeah. No. You're a you're you're exactly the kind of person I like in these situations. I
Oh, thank you.
No. 100%.
I think I think also credit is really due to the endocrinology team because even though they didn't necessarily agree with what we were thinking, they humoured us. You know, they respected we had a good enough relationship for them to think, let's see. And I think everyone was surprised, and it was a learning experience for everyone. I think the hospital now possibly has different protocols in relation
to open mindedness.
Atypical. Yeah. Yeah. Think so.
Yeah. No. For sure. Well, you did a great job in your COVID cloud of explaining all this. I don't know if it'll make it into the recording, but when we jump back on for the second half, Savannah said, I don't remember anything I said in the first half of this.
So
None of it whatsoever.
Yeah. I hope you feel better soon, and I, you know, I wanna wish a lot of luck to your to your family. Of course, I you know, the one thing I feel like I don't have a resolution on, if you can just take a moment at the end, is how is your mom?
She has dementia. So it's a, you know, it's a long goodbye. It's you know, we lose a little bit of her every day, but she's still the same person inside. So she's turning 87 in a couple of weeks' time, and we're going to celebrate that. She still recognises us, so that's a positive, and she's a wonderful the most wonderful person you'd ever meet.
You know? She's loving and kind and extremely generous. So I suppose I'm repaying all the support that she's given me Yeah. Throughout my life because I'm an only child as well. So Yeah.
Well, I'll I'll So
You have a very complete story, a unique perspective, and I I really appreciate you coming on and sharing it with everybody. It's really it's just lovely of you to do this.
Oh, thank you. It's been lovely speaking to you at normal speed because I listened to you at one and a half speed.
Oh, that must
be crazy. Well, it was just to get all of the episodes in. So
No. I'm sorry. That's my fault. But but I've I've not tried to listen to myself at a at a faster speed, but I can't imagine it's a good idea. Well, gosh, seriously, I go to bed.
But I will. Dan, no. Thank you so much for doing this. I I really can't I can't thank you enough. This is a a unique story, but it it touches on a lot of things that impact people.
So, you know, you did a great job today adding, you know, everyone in your family's story to the the tapestry of the podcast. So, again, just really grateful. Thank you.
Well, thank you, and thank you for giving me the opportunity. It's been fun.
Of course. Hold on one second for me. Okay?
Thank you.
Alright.
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#1926 Hero of the Day -Part 1
Hero of the Day (Part 1)
An Australian mom catches her son’s rising blood sugar almost by accident, then spends a year being told he’s an atypical anomaly — while quietly suspecting something the clinic keeps ruling out. Part 1 of 2.
Jump to a moment
- Caught almost by accident. A naturopath visit about focus and anxiety led to routine bloods that showed a fasting glucose creeping up. Felix was completely asymptomatic — the kind of early catch clinicians rarely see.
- A neighbor’s near-miss made it real. Days after Felix’s workup, Silvana urged her neighbor to chase down missing lab results — their daughter, her son’s best friend, was rushed in in DKA with glucose in the 400s. Two very different diagnosis stories, three days apart.
- The gift of a slow onset: time to learn. Because it was caught so early, the family had months before insulin. Silvana used them to work through the Pro Tip and Defining Diabetes series, so when insulin came, they weren’t afraid of it.
- “Anomaly” landed harder than intended. Repeatedly told Felix was atypical, the family held onto hope it might be something other than type 1 — while Scott suggests the clinic likely just meant they rarely see it caught this early.
- A mother’s hunch, ruled out again and again. Silvana kept raising MODY; the clinic kept leaning type 1, especially after a positive zinc-transporter antibody. Genetic testing was approved almost to placate them — and Part 1 ends the moment it comes back.
- Defining Diabetes series — Short episodes with Scott and Jenny Smith defining the terms - part of what Silvana studied before Felix started insulin.
- Diabetes Pro Tip series — The management foundation Silvana listened to daily, taking pages of notes, during the family's pre-insulin window.
- T1D Exchange Registry — US residents 18+ with type 1 can complete the survey and help move T1D research forward.
Every word of the conversation
Friends, we're all back together for another episode of the juice box podcast. I hope you have a chance to go to t1dexchange.org/juicebox and take their survey. If you are a US resident over 18 years old, have type one diabetes, taking that survey will help generously in moving type one diabetes research forward. Go do it. It'll only take a couple minutes.
It'll really help them. It'll help me. It'll help you. T1dexchange.org/juicebox. Hey.
Nothing you hear on the juice box podcast should be considered advice, or otherwise. Always consult a physician before making any changes to your health care plan. This episode of the podcast is sponsored by MiniMed and the Kontoor next gen blood glucose meter. MiniMed, of course, the innovators behind the MiniMed flex system, a small, sleek, and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel.
To learn more, visit minimed.com/juicebox. There is one blood glucose meter in this house, the Contour NextGen blood glucose meter. That meter is on my daughter's person right now and at all times. It is incredibly accurate and waiting for you at contournext.com/juicebox. Can you say testing?
Can I say casting?
Testing. But you did it. You're good.
Testing. Sorry.
Don't worry. So, normally, all this happens before you guys are listening, but I've hit record right now because I have a tight one hour window. And I so I'm gonna explain what happens in the podcast while you're listening while we're recording. Does that make sense?
Okay. Can I just say one thing? I do have COVID, and I'm feeling very so it's probably not the best time, but I didn't want to cancel because I've waited so long.
Well
So you're so nice.
Do you wanna I mean, I could reschedule you for next week and
No. No. No. No. It's fine.
I'll I'll see how I go.
Okay. Well, I'll well well, that also keeping it short then will will be smart, and you can always come back. So what I normally do in this situation is say, do you wanna ask me any questions, or do you have any concerns, or say anything before you're being recorded? So that part's kinda screwed. But do you have any concerns or anything you wanna ask me about before we start recording?
No. Not at all. I'm just hoping that I get my message along across because we've got a very interesting interesting journey,
I think. Well, you sound like a level headed adult, so I won't even go over the rest of it. We'll just start. Introduce yourself the way you want to be known. You don't need your last name if you don't want to use it.
If you wanna use it, that's fine with me. Go ahead and tell people who you are.
Meet Silvana — and Felix3:02
Okay. Hi. My name's Silvana, and I'm the mother of a soon to be 15 year old boy who was diagnosed in 2024 with type one diabetes. Our family has, I think, a very interesting and unusual diagnosis story that I'd like to share.
I wanna hear it. And since we're tight on time and I can be chatty, let's just jump right into it. Go. Tell me your story.
A naturopath visit that found something3:26
Okay. Okay. So, in June 2024 Mhmm. We actually went to see a naturopath, because Felix, my son, had been not focusing in school. He'd started the year before in high school, and he's very prone to anxiety, was extremely anxious.
So anxious that, there was all my school refusal, and that's another story for another day. But it hid the fact that he was starting to not focus as much. So we'd seen a paediatrician beforehand and they had diagnosed ADHD. And I wanted to see someone who could perhaps look at his diet and maybe look at supplementation and perhaps just metabolically Felix you know, make make Felix be metabolically the best he could be. Okay.
So he ordered bloods. And the way it works in Australia is that if you order bloods through a naturopath, you pay. If you order through a doctor, you it's it's rebated. So he suggested we go to the doctor. So Felix, ironically, hates needles, so it took a whole month, I think, for us to get bloods.
Bloods came back fine, but his fasting blood glucose level was, and I'm converting now, about a 117.
Mhmm.
Okay? Doctor was a little bit concerned, asked if Felix Adetin, had had a midnight snack as he's prone to do, and he had vehemently said no. Mhmm. So but we did follow-up bloods, and this is how lucky we are to be in Australia. We had such a quick turnaround time.
So bloods were done at eight 8AM. At 2PM of the same day, so six hours later, our doctor rang me and said that, Felix's new updated fasting blood sugar level was a 135 and that she had not seen that level before in someone who was totally asymptomatic because we had not gone to the doctor. We'd just gone to a naturopath. And she she was going to ring the hospital, the, the children's hospital. We live in Sydney, so one of the major children's hospitals, to talk to the registrar.
Savannah, let
me hours late.
Before you get to that hospital in your story, is this a thing you caught because you're out of your mind anxious or because you're a really, like, paying attention parent?
No. It's it wasn't that at all. We actually just went to a naturopath to assist Felix with focus.
But I'm saying even that, like, that's you know, there are a lot of kids running around that aren't focused, and parents don't say, oh, we have to go figure out what's happening. Was this this focus thing going on forever, and this was the end of your rope?
Yeah. Well, kind of. Felix, is at a selective school, so I'm not sure if you've got the equivalent in America. So, he's really bright. So he was tested as gifted in primary school, known as gifted in primary school, Ducks Primary School, which isn't, you know, too difficult to do, I I think.
Mhmm.
But he went to a selective school, which so he started off at a very small primary school, and then he was at a very big high school where he didn't know anybody, and he was absolutely super anxious the first year. But we had noticed that he wasn't doing work, playing games on his computer, totally distracted, but we really were paying more attention with the, pay paying more attention to the anxiety.
K.
So it kind of was left.
And
And we didn't really think about it. So we weren't really anxious. It's just that it really became noticeable when problem out. Anxiety.
Yeah. Yeah.
Yeah. Hey. And When when the yep.
You or the husband or anybody else in the family have anxiety? Is it a thing you'd seen before?
No. My mother does.
Okay.
My mother's always been anxious, but, yeah, Felix has always been anxious. So he's always been
What they call high strung, always on edge, like a like a cat?
No. I think anxious in the in terms of not like liking to be noticed.
Okay.
So he was in a very small school. He'd win awards all the time. He didn't like standing up. Mhmm. And, receiving that award.
Any speech, you know, speech days, he would not like to do them. So if we had speeches to do, he'd always go to another room and someone would film him.
The Kontoor Next Gen blood glucose meter is sponsoring this episode of the juice box podcast. And it is entirely possible that it is less expensive in cash than you are paying right now for your meter through your insurance company. That's right. If you go to my link, contournext.com/juicebox, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through my link for the Contour Next Gen and Contour Next Test strips in cash.
What am I saying? My link may be cheaper out of your pocket than you are paying right now even with your insurance. And I don't know which meter you have on you right now. I can't say that. But what I can say for sure is that the Contour Next Gen meter is accurate.
It is reliable, and it is the meter that we've been using for years. Contournext.com/juicebox. And if you already have a contour meter and you're buying test strips, doing so through my link will help support the podcast. Let's be honest. Most of us would love to spend less time thinking about diabetes.
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That got a lot better in year five during COVID because everything was via Zoom, and he decided it wasn't so difficult. So year six was fine. Year six, so the last year of primary school Yeah. He'd we thought he'd outgrown that, but I think the new environment of high school just brought I think he had impostor syndrome. He saw very many of him, around him and people that were a lot smarter than him, and he'd never seen that before.
Right.
So I think he felt that he shouldn't have been there. So it was very he'd always walk out of exams.
I have
the teachers to find out.
I have bad news for those smarty kids. I was identified as gifted when I was five years old, and now I make podcast in an extra bedroom in my house. So everything's not gonna be wine and roses. Okay? I wish I wish your son could have known that, honestly, that, like, these kids are not special, and most of them are.
I have to tell you, like, my inaugural class of, gifted kids, I kept up with them, and a lot of them are what you might call a train wreck now, actually. So it's interesting. You know, that that's a thing that we don't actually do in America anymore. They they've tried it in the, seventies and eighties, and it's not a thing they do anymore. Like because I don't did the same thing happen to your son?
They give him an IQ test, tell him he's smart, put him in a groom with a bunch of other kids?
No. What happened is that in year when he first year of school, he was he started to read when he was 2.5. And he could recite the alphabet backwards when he was three. He was teaching himself languages. He I think he's balanced out now.
We were quite worried that he was hyper focused. He's the exact opposite now, but I think, he was psychometrically tested in first year of school, and he grade skipped at school.
No. I wasn't that bad.
He was always the younger kid as a kid as well. But I think it's worked out reasonably well because he's got the best set of friends now.
Yeah.
And he he chose the school, funnily enough, because it wasn't the school that we would have chosen for him.
Last question before I put you back in the hospital for the story the rest of the story. Okay? Yeah. Do they do IQ testing there? Do you know what his is?
Because I I think his is probably high one forties or one fifty. Right?
No. It wasn't. It was one thirty five. So he was gifted, but he wasn't. So and the report was fantastic.
It actually basically said that he was gifted in every area, and he didn't have a certain learning style. He was just yeah. He could So it
was kinda ambidextrous with learning.
Yeah.
Yeah.
Yeah.
Well, listen. Don't tell him this, but my IQ is a little higher than that. It didn't work out for me very well at all. I cannot do algebra to save my life. I just wanna it's ridiculous, but I'm sorry.
So I'll let you skip in. So you're back you're we're back in the hospital. You moved over for your doctor, called blood work, blah blah blah, hospital. What goes
The hospital, and a word never said: diabetes13:27
from there? So the registrars called and said, can you please come in tomorrow morning? We did go in, and we saw a diabetic educator straight away, which was a real shock to us because the word diabetes hadn't even been mentioned. Oh. So we had no idea.
So we were just told that well, the doctor the day previously had just said, oh, I've never seen this before, with someone who's asymptomatic. I'll see what who should look after you. We get a call that night asking for us to come in. So we got a script for bloods, so the typical h b a one c, the autoimmune markers, all of the antibodies, c peptide. And we did see a the the endocrinologist Mhmm.
Who basically said it looks like it's very, very, very early court type one, but we are casting the net wide, just to rule out any other autoimmune diseases. So that was a shock, but we really didn't know anything about type one. Wow. So it wasn't that much of a shock then, I think. Immediately, we were given a finger pricker.
I've forgotten what they're called now. And strips. And we were asked to, test Felix, upon waking. And, two hours after dinner, and I email it to the, diabetic educator, just a log of everything at the end of the week, every week, and then they decide how early we should see the p d pediatrician again. Did So the endocrinologist.
Yeah. Yeah. Did the onset happen quickly after that, or or has it been slow since then?
No. Well, we've got a very, very interesting story. It it was slow. So but just to step back one so so that morning, we were quite we were quite anxious. We were overwhelmed, but we were in shock.
We didn't really understand. That night, I spoke to my neighbour who's a very dear friend of mine. She has a daughter who is very close friends with my son. Mhmm. And they've grown up together.
And I debriefed. Not saying anything, though, because my son didn't want anybody to know that he possibly had type one.
The neighbor’s daughter in DKA16:01
Okay.
So three days later, that very neighbour or her husband rang me and said, my daughter's blood test results haven't come back. She'd been feeling sick for a whole year and a half.
Mhmm.
Very different different kettle of fish to my son. My son will tell you when he's you know? When he thinks he's going to be sick, this this our neighbor's daughter is very different. She does not complain. She'd been and you know how the story is going to end.
She you know, she'd been sleeping. She'd been urine excessively urinating. She'd been drinking a lot, but no one had really noticed because, you know, she wasn't complaining.
Mhmm.
They had done loads of blood tests over the year, and they they found iron was low, so they'd fixed that, a few other things. And so my neighbors, her father actually called me. So and he said, it's really strange. She's not getting better, but I haven't received any results blood test results. That must mean that, you know, no news is good news.
And I said, well, no. I think you should really call because they could have just they may have just missed Yeah. What you know, they may have just missed, the the bloods coming in. He called within ten minutes, and he said, you know that hospital that you said was fantastic? My daughter's just I've just been told that my daughter's blood sugar levels, were in the twenties four weeks ago.
They'd missed the pathology Oh, and they hadn't told me. So in the twenties is, I think, in the four hundreds. I can work that out now. I've got a calculator. So I he she was rushed into hospital three days.
Like, so my daughter my son's best friend was rushed into hospital in DKA three days after my son was told that he probably had type one diabetes. He was ours. Like, if he had waited an hour or two, he probably wouldn't be with us. Now she stayed in hospital for for months.
And this is because you went over to kind of, like, debrief and let them know what was going on because they were friends.
Yeah.
Wow.
Yeah. Well, they rang yeah. I know. They rang me because I'd said how well we'd been treated at the hospital, how quickly we'd been seen.
Right.
And so when yeah. When the father the father tends to ring me in the morning because he gardens really early and no one else is up, and he was just wondering why they hadn't received results And, you know, his daughter was still not feeling well. And
Look at you. You're like a superhero out there.
No. It is No. Yeah. You're you're
you're Australian supergirl. Just take it.
It was it was absolutely devastating for the family, though, because she had PET scans on every part of her you know, every single organ almost. Like and she's very lucky that she did not have any organ damage. She was in hospital for a very long time.
Certainly. I've had people on here with stories that are curl your toes about what can happen when you're not diagnosed in time, you know, leading to and including death. But some some pretty crazy stuff can happen when when you're shutting down like that and your body's so acidic and my gosh. Well, I'm glad they they figured all this out. Do are they are they married now, your son and this girl, or have they formed a kinship over this?
Like, what's going on?
It's actually quite funny. They're they're actually not as close as they used to be. She's become a very emotionally stable girl, and my son has he he's just hit puberty, so he's regressing. Yeah. I'm hoping he never listens to this podcast.
But, yes, he's, yeah. I think they're they're at different stages at the moment. I think they they'll, it'll change. But at the moment Well,
they're both being private about it with each other at least, I guess. Does your son talk to other people about it?
Restricting food, chasing the numbers20:14
No. No. He doesn't. He doesn't. He didn't want anybody to know once he got the CGM on.
He didn't want anybody to know, so that that was difficult. But what ended up happening? So I started documenting everything in terms of, you know, food diary and, you know, all we had we had the blood pricker, And what we found were was that his fasting blood sugar levels were from about 115 to a 160, and his highest blood sugar levels were about 200.
Mhmm.
So not great, but not not bad by by any means. He wasn't restricting his eating at that stage, but very quickly thereafter seeing that walking and not having sushi would, you know, reduce his blood sugar levels, he started restricting his eating. And my son is quite thin and quite small. Genetically, he hasn't hit the hit jackpot because I'm five foot and my partner's not that much taller.
And
so he started he started spiraling from then in terms of not really spiraling, but just looking at the figures and trying to change those figures with walking and eating. So going low carb
Are
you despite listening to the podcast.
Well, is I I don't mean that low carb is a a disorder, but are you describing like, is he scared of food?
Well, he's not now, but he he's always being a great eater.
Okay.
He was then because he he loves figures. So math is his is his subject that he absolutely loves. Mhmm. And so finger pricking was great initially, but then led to him being anxious about the figures when they were higher than what he would have liked them to have been. And that was him doing research.
We were trying to assure him and, try to keep him eating normally. Mhmm. But he was just getting more I mean, there were nights where he'd walk for two or three hours with us because he didn't want to be high. And high was generally not much higher than one eighty, not where you want to be, but not you know? I mean, he's not on anything at the moment.
So
Not on
I think it was
What do you mean not on anything?
At that moment, at at that stage, he wasn't on insulin. Oh, I see. That Oh. Were the figures.
They didn't put him on insulin right away?
No.
No. How long did that go on for?
A long time, and that's that's the journey. Yeah. Quite like, I think he was he possibly about three or four months.
Would he have been better off on insulin, do you think?
No. No? Not in hindsight.
Okay.
That's that's the yeah. No. So what that did, though, it meant that we had three or four months to really start researching. Mhmm. And so I worked from home, and so I just I found the podcast I found the Facebook page, actually.
Four months to learn before insulin23:41
And for me, it was a little bit overwhelming and not really relevant because we weren't on insulin yet.
Sure.
But that led me to the podcast, and I started listening to it religiously, like daily. So the defining diabetes, the pro tip series, I we I wrote notes and notes and notes and notes, and I think that gave us a head start. So when he eventually went on insulin, we weren't afraid of it. We knew that it wasn't going to be a linear journey. It wasn't going to be you know, there were so many variables that we had to take into account.
Every day was going to be different. And we just weren't scared to use it
Good for you.
To help. Yeah. It was no. Well, good for you. It was we were really grateful for that.
It just meant that we weren't overwhelmed. We just saw the difference between what we were going through and what our neighbors were going through.
Mhmm.
They had to deal with everything very quickly. In fact, our neighbor's daughter, suffered from edema in the hospital, and that's a really rare side effect of giving too much insulin too quickly Mhmm. Apparently is what they
The the hospital didn't handle the titration well, or they
I don't think it was the hospital. The hospital's phenomenal. I think it was just that her levels were so high that they needed to do that to that that's my perspective. I'm not sure. Wow.
Well, I pre Yeah.
Well, let me say thank you. I appreciate you telling me that. It's meaningful to me on its own, but I'll tell you it's a little more impactful today because yesterday, I recorded with a mom from Zimbabwe who was talking about how little direction she got for her her very young son and how the podcast helped her. So I'm having a I'm having a week of feeling good about making the podcast, so I really appreciate it.
Oh, it was fantastic. It just it really just guided us, guided me with a little bit of convincing. I had to convince my partner because he didn't listen to it. But Felix, my son, listened to it with me because I'd take him to school, and, it'd be on. So he kind of gained that knowledge as well, which was great.
But what ended up happening is that we had a three month period between the tests that we got done at the hospital and the next time we were going to be seen at the hospital. In the interim we got the results back, but I couldn't read them because they were really strange. They didn't have a range, you know how blood tests usually have a range? And because it's a public hospital, it's just overwhelmed. Just had to wait the three months, but we were really worried about waiting the three months.
So we ended up seeing a private endo, is so difficult because they're usually linked to public hospitals, and they usually have a two hour you know, two year wait.
Two years?
Managed to yeah. Two years. So everyone I rang had a two year wait, but we got a cancellation, and we didn't actually want to be a we didn't want Felix to be a patient. We just wanted just information. We just wanted to have these blood tests Read.
I suppose interpret it.
Yeah. Some eyes on it and give you some direction. Right?
Yeah. Yeah. So what he said he was great. He basically oh, well, he was great. He could read the bloods.
He Felix's h b a one c came back at 5.7, so not bad. Mhmm. Like, you know and his fasting blood glucose level was 7.7, which is about a 139. Yeah. So not not great either.
The three antibodies that had come back were all negative, but two were pending. So we had no idea. So at that stage, he said, well, it looks like, you know, it looks like very early court. He said the same thing, but we don't know. We just have to wait till the the two other antibodies come back.
So we had an appointment in late twenty twenty four. So the first time we'd gone in was two months prior, three months prior. And Felix's h b a one c had gone from 5.7 to 6.5. So still not bad, but it's creeping up.
Okay.
You know, in that short period, it's creeping up. Fasting blood sugar level oh, no. Yeah. Six seven 6.5, and his fasting blood sugar level is about the same. We were told that he didn't have any antibodies.
So no antibodies. His c peptide was good, and his blood insulin was good. So we're normal normal levels. So he was seen as an anomaly. Like, he they didn't really understand how he had an elevated blood sugar level.
His, you know, his postprandial levels were higher as well, but not extremely high. I forgot to say they'd put a CGM on him two weeks before Mhmm. Just to see how it's just to monitor him, and we were surprised. Obviously, then we could see the the spikes, but they weren't that high.
Right. Right.
You know, they weren't they they never really got above, say, 12, which is I keep on forgetting. Over a 180, but not that much over a 180.
Do did he ever develop antibodies, or did you just catch it so early that they weren't there at that point, or have you not even looked back?
Well, he did. So he did. So at that stage, we were told that so there there'd been an upward trend. So there was an upward trend in the c g the CGM showed an upward trend. Mhmm.
So now they're saying it's highly likely that it's type one, and they're expecting that insulin levels and C peptide levels will decrease with the next bloods. Okay? So everyone's thinking we've caught it extremely early. We've just we've just been really lucky. We've caught it so early that, you know, he's asymptomatic.
He's still asymptomatic. He's eating not exactly what he he was eating prior because he's anxious. So he's starting to eat. He's restricting his diet. Yeah.
So he's not eating that many carbs. So it's not a true reflection, really. So his levels are possibly a little bit higher. We don't know because he's refusing to eat bread and sushi and the things that he used to eat before.
Is he eating normally now today?
Yes. Yes. He's eating normally now. Yep. So the recommendation, which we thought was strange at the time but kind of worked, was to start him on a low basal insulin to to just present prevent the spikes.
One unit of basal, then figuring it out31:15
Mhmm. Which like, I just kept on thinking just listening to Juice Box. Well, maybe they would give us a little bit of novirapid or something just to but they kind of said, no. What we'll do nighttime is fine, but during the day, he's fighting a little bit higher than we would like, which for us was much higher than we would have liked. Mhmm.
But they were it was still okay. So they suggested they recommended that, he start on a low basal insulin. So I think he started on one unit of Levemir in the morning. Okay.
Well, listen. It it worked. Right? It got you through.
It did get us through.
Yeah.
So, you know, so then we had, you know, the we had a clinical nurse specialist give us injection education that lasted the whole day. Mhmm. And for Felix, that was a little bit traumatic, but I think I just got into we need to work this out. You know, we need to do this. So we started injecting.
And soon thereafter, despite Felix's absolute fear of needles, he started injecting himself. So we had the pens, and things were fine for a while. So we learned fairly. There seemed to be after we started, we had a CGM on. So Felix had his CGM.
We started noticing that his blood sugar levels were creeping up. So one unit didn't seem to be enough, and we just ourselves started increasing that dosage.
Right.
And then we kind of split that dosage and started doing morning and evening, and that seemed to work.
Okay. That and that's the thing you did on your own?
That yeah. Yeah. Well, I was a bit worried to tell the hospital. The pediatric endocrinologist is phenomenal, And my partner, Nigel, really encouraged me to just email and say, this is what we're doing. And I did, expecting pushback, and they were saying, you guys know exactly what you're doing.
It's fine. You know, he's doing really well. Blah blah blah.
So Do find that comforting or concerning that they so easily gave in to what you said?
No. Comforting.
Comforting. Okay. Good.
Comforting. Yeah. Comforting. Because we had quite a bit of we saw the endocrinologist every, say, two to three months. I think it was every month at the beginning, but every two to three months.
But we could phone the educators anytime we wanted to. Not really phone, email, because there's four for the whole hospital, so for the whole department. So we felt reassured, but we felt fairly comfortable.
Good. Good. It's good.
Yeah. We did it slowly because we didn't really know. But
And slow, like you said, was an option because of his onset because you caught it so quickly. So why why not take it I mean, in the moment, you don't understand the value of being able to go slow, but, you know, hindsight, I would imagine.
Yeah. Well, we were also concerned about Felix. We didn't want him to we wanted he to give him agency, but not burden him, if you know what I mean. So we wanted him to be involved and feel like he he was in control, but I was doing like, at nighttime, I'd never wake him if there was anything I needed to do at night. I mean, that comes further on when he needs more at night.
Mhmm. But he was, you know, he was injecting himself. He was fine. He didn't really want anybody to know that he had diabetes. But what happened at the end of that year, so we'd seen the hospital initially in, I think it was sometime in August.
The first positive antibody35:37
By December, although his blood sugar levels were still reasonably stable, one of the antibodies came back positive. So that was the zinc transporter antibody. His C peptide levels, as the hospital had predicted, had dropped significantly, and his blood insulin, which we also tested, had dropped significantly. So the narrative that the hospital, I suppose, had painted, you know, painted this picture of this is what was going to happen was happening.
Yeah. Here it It
was, yeah, it was progressing. But we'd had we'd had, what, about four months of the podcast. We'd also had four months of other research, and we'd had four months of seeing our neighbor dealing with insulin and also four months of education, really, of asking any questions we wanted. So we felt fairly confident. I mean, not really happy.
But, like, the first game of like like, you've been practicing all summer and the first game of the season is here now. You're ready to go. Like, okay. We're playing now. Yeah.
Yeah. I gotcha.
That's true. Yeah. But his HBA1 c was still at 5.7. So we've got I think it'd gone 6.2 at one stage. Yeah.
Well, we'd gone down to 5.7 again, and we were told that now it was more likely than not that that it's type one. So the hospital's really reluctant to say it is definitely type one, but with one positive antibody, they're thinking it's type one and that the August to November period was the honeymoon period that in which he was still producing insulin.
Sure.
The hospital said there was nothing that we could do to prolong the honeymoon period. I'd read about t Tavild, I think, but it wasn't available in Australia. He didn't have two positive antibodies either, and I think that was the prerequisite anyway.
Can I
ask I'm not a 100% sure?
Can I ask
Yep?
Even though I mean, it seems obvious in your story, and I'm wondering if it seemed obvious to you at the time even though the the hospital was, you know, uncomfortable saying this is definitely type one. Did you know it was, or were you sitting around wondering if it was something else?
We sat around wondering if it was something else.
Mhmm.
And We did. Yeah. We really wanted it to be something else. It's difficult to argue that it could be something else when the neighbor has it. Do you know what I mean?
Yeah. It was almost we'd seen somebody be diagnosed with it, and why would Felix be any different?
Right.
You know? We were hoping that it would be something else. And, you know, you read of honeymoon periods extending for years, so I was hoping that was the case. We were so desperate at that stage that we saw the private endocrinologist again who said that we were ninety or Felix, I always say we, but Felix was ninety eight percent in range, and his standard deviation was 14%. So that's fantastic.
Mhmm.
And that gave us some he he basically said you could that there was some data to suggest, and I'd already seen this, some data to suggest that vitamin d and omega threes could extend the period. Keeping glucose levels within range could ex extend the period. Going gluten free could extend the period. Obviously, t T shield or T shield could. There was, I think, some sort of medication in Australia that was that could be taken off label that could.
And he talked about clinical trials, but when we looked at my my partner Nigel was very adamant that Felix would not go on any Right. Trials.
Okay.
He just didn't want and to be to be perfectly frank, having just one antibody didn't qualify him for anything at that time when we were looking. So it was a moot point. We couldn't argue over that one.
Can I ask if hindsight, would it have been valuable if someone would have just said to you, like, look? We can't prove it with the test yet, but the kid has type one diabetes. Would that have been helpful to you?
I don't know. I think I think the reason why we were hoping that it could be something else was that he was always seen as an anomaly, as atypical. You know? So how atypical can you be? You know?
If it's so different to to anything you've seen before, and this is a diabetic clinic, could it be something else that's that's rare? Could it be something that you've never encountered before? So I think it was more not the because I understood that, you know, that there's a there's a there's a trajectory. You know, there's a progression, really. And so usually you see one antibody, then you see two, or you may see all of them depending on when you, you know, present.
But I don't think they'd seen it. I think the reason why the endocrinologist was cautious is because I think she just hadn't seen she most of the people that came in possibly had decay were in decay
I'm trying to find I'm trying to let you get to it.
I have no idea.
Yeah. I'm trying to let you get no. Don't worry. It's you're in Australia. We're talking to you through a tin can wire under the ocean.
It's fine. Yeah. And I bring this up sometimes. I don't know if people know that your your Internet is literally buried on the ocean floor. So yeah.
I I get it. It takes a second. Don't worry about that. I'm trying to see if you're gonna get to this idea or if I'm gonna have to say it to you that I just think they hadn't seen anybody caught this early. So they're calling it anomalous, but what they mean is we don't see this very often.
And you're hearing anomalous like, oh my gosh. Maybe there's something like, letter of the law definition of anomalous going on here. What they just mean I I really feel like from your story, what they mean is, I don't know. We're not sure. We don't see it like this.
Yeah. Yeah. Well, see, on one hand, we thought that, and we felt extremely blessed because we saw Yeah. With our neighbor how bad it
could end in morning. That's the story I'm hearing. You just caught it really well because you were paying attention to things, working on getting your kid healthier in other areas, and you you tripped into it. And and because of that, you got a nice, like, gentle, lead up time. You got time to learn and educate yourself and prepare yourself mentally.
You know? Like, that's the story I'm hearing, but it's funny because you lived through it. It felt different to you in in the moment. Yeah. Does that make yeah.
Caring for a son, a mother, and a diagnosis43:09
I yeah. That's true. I mean, by this stage, Felix is starting to get quite anxious. My mother had come to live with us. She has early stage dementia, and I'm the only child.
So I started caring for her. And I don't know. We I I don't know if we had the bandwidth to really analyse it
Sure.
That much, we on one hand, we thought we've caught it really early. We're really lucky, but we still held onto that hope in the background that it could possibly be something else. Mhmm. Obviously, when the, antibody came back positive, that was quashed a little bit. You know, we
were
quite disappointed. And then things started to progress from there. So I think, you know, I think two months after that. So in August, we went in in 2024. By February so it's been a long time, 2025, they're recommending Nova Rapid.
So because he's he you know, he's had a couple of blood sugar re level readings of fifteen fifteen, so two two seventy or so. And the hospital's not comfortable. We're definitely not comfortable, and they're recommending he's still 94% in range, but now they're starting to say, this is not the picture we want to you know, we're we're comfortable with. And it's quite strange because we'd been listening I've been listening to the podcast for so long. I wasn't comfortable with those figures either, but I wasn't really pushing insulin because I knew that that would be a big step for Felix.
Yeah. But do you And But I wonder, though, isn't the waiting adding to the anxiety? Isn't, like, isn't it, like, I'm waiting for the next shoot? Like, wouldn't it be better if it just happened? Like, pull the Band Aid off and get going for the anxiety piece?
Were also we yeah. We were also being told that his control was, you know, some of the best control they'd seen amongst, you know, the children at the hospital.
So Because it hadn't really onset completely at that point.
That's true. Yeah. Yeah. You know, obviously, the the ranges are you know you know, as long as it's under 180, it's fine Mhmm. You know, from their perspective.
So that's not what we wanted to see. So we were kind of we knew that he needed to be on insulin, but we were not really pushing for it. But, I mean, that was taken out of, you know, we we the decision was made for us.
Then.
And by February, he they just recommended point five units. We were doing a lot of walking by that stage. So Felix was walking
Guys, he's gonna walk right off that island if you're not careful.
Oh, I I tell you what. I tell you what. I I I agree with you. I there were nights that he'd just go off into the night and just walk and walk and walk. And so that wasn't I mean, it was great for his health.
It wasn't so great for his mental health.
No. For sure. That's the part I'm hearing is that he was like, the waiting and the and the wondering and the not knowing wasn't good for him. My question here around the anxiety is, did the addition of insulin lower his anxiety?
No. It
hasn't it hasn't touched that at all.
Starting Novo Rapid — and dosing their own way46:47
So or I think what we were what we were really good in doing, and this team, the hospital team was really good in doing, was that he didn't the the waiting for the insulin, he didn't really know about, so it wasn't he wasn't anxious about starting insulin or not going on insulin. But we thought he would be. He didn't really think he's he's a think in the moment sort of person. So we knew he would be, but he wasn't re he was anxious about his numbers, but that anxiety wasn't caused by expectations by anybody. They were just his own expectations on himself.
I was So
I was more wondering about did, like, bring his blood sugar down, creating more stability, did that help him at all? But with
Well, what happened was that so we were told point five units anytime he goes over one one eighty. So which is very, very, very conservative. Not what we want to do. We went to a cafe that we go to every Saturday after he he does a class on Saturdays in the morning. Mhmm.
And we gave point five. We waited until his figures started going down, which took a long time. It was forty five minutes, and then he ate. Mhmm. And we saw and he had two toasts, eggs, avocado, and a smoothie with honey in it.
And started going up, started going up, and then we started we ended up giving him five units all up in small doses. We did not tell the hospital. At that stage, we did, and it was great.
Yep. You call him you should call him up and say, hey. Listen. We listened to a podcaster in America instead of you. That would've that's that was your concern.
Right? You didn't wanna tell them, I'm making decisions. This is where I'm getting my information from, and I'm not listening to you anymore. Like, that that seems why is that uncomfortable for you?
That's no. That that's kind of true. They had, at this stage, developed a really healthy respect for both Nigel and I.
Then then why
because
Why did you not wanna tell them?
Because I remember when we started talking about NovoRapid and I started talking about, oh, what about protein? What about, you know
Mhmm.
Splitting doses? They just looked at me as if I had
They're like, hey. Listen. We don't listen to the podcast. We don't know what you're talking about.
No. I they I I worked out later that they obviously understood, and they they knew. They kind of have quite a bit of knowledge. It's just that they're not used to someone who hasn't even been given a script for
I see.
For insulin Mhmm. Knowing that because the the we actually ended up after having started insulin, having education, and they apologised profusely throughout that education session because it was pre recorded and it was just how to count carbs. I'd been counting carbs since the day that I had to do the first blood prick. I was writing down his food diary, and I was saying how many carbs were in it. And the dietitian actually asked me because sometimes we had multidisciplinary meetings, and she asked me, well, how do you know that the carbs are, you know, 73.2?
And I said, because I cook at home, and I've measured everything. That that was initially. Mhmm. And so I know I'm not not re or I'm reading it from a pack. I mean, I know how to read.
You know, it's not it's not rocket science, really. So so fairly early on, we were giving him insulin as he needed rather than as had been recommended as a start. Yeah. So and like I think I said before, I wasn't comfortable telling the hospital. Nigel suggested that because we were going to have a long term relationship with the hospital that I'd be more open.
And I finally was, and they were absolutely fine Yeah. With it, which they should have been because they were seeing better con well, what appeared to be better control
Right. Well, the truth
at least not worse control.
Yeah. I think the truth is is that you have to be open and honest. And if it doesn't work out, it's just then like any other relationship. If it doesn't work out, then you'll have to find a new relationship. But if it but Mhmm.
The the alternative of you sitting around and worrying and doing things and not saying anything and the unspoken stuff, like, this is good advice for any relationship you have. It's just bad. It doesn't it doesn't lead to anything good. So just say it, and we'll see what happens next. But it's gotta be better than what's happening now if you're if you're hiding.
I That's true.
Yeah. It's really awesome.
So true.
Also, not not can I say Nigel's the unsung hero in all this? He's very levelheaded. Why is that?
He is very levelheaded.
Yeah.
I'm not sure. We balance each other out.
Protector mode, not tears52:13
Can I ask you, are you anxious? You said your mom was, but you're not?
I think I'm an a type personality. Oh. So it's quite funny. What I noticed about me, when Felix was first diagnosis came, you know, it's a strange word for us because it was always for a long time, it was we think he has. We think he has.
We think he has. But I remember, like, on our second or third visit to the hospital, I saw a little child who had a CGM on, and I cried, like a a baby, and I cried. And Nigel said to me, but you don't you've never cried about Felix. And I and it's true. I actually just went into protector mode Yeah.
Into I've got homework to do. I need to make this transition in his life as I need to protect him. I need to give him agency. He will have this burden for the rest of his life, and I want to help him now so that he can live his teenage years. You know, he can just have have just a carefree as as far as he can, you know, carefree teenage life.
But what did happen with the increase so we became quite obsessed with maintaining excellent control, and with that meant quite a few he wasn't on a pump at this stage, so staying up during the night when, you know, his Levemir wasn't working and giving additional NovoRapid until we'd get his Levemir right. As things progressed and Felix experienced his first low, his anxiety increased. Mhmm. So his first low was a bit unfortunate. He was playing trumpet.
The first low, and the fear that followed54:22
He was in trumpet lessons. So and he came out feeling quite dizzy, and I thought he just had too long a lesson. And his blood sugar level wasn't that low. It was just below three. It was 2.9, which is I am not sure.
I should have written this down. 2Point9 is 18. 52 Mhmm. Point two. But he felt it.
And from that day on, he became very anxious about going low and extremely ambivalent about being high. So it was difficult.
It's it's switch right away. He was like, oh, I don't wanna be low again. Yeah.
Yes. He made that switch straight away. So, basically, what ended up happening as we increased as we became more comfortable with using insulin, which we were pretty much straight away, and, you know, we we started increasing amounts of Nova Rapid particularly to get his mealtimes, you know, his his post mealtime pies level. He started becoming really anxious. He started not eating at school, so he didn't want to bolus at school Mhmm.
Because that would mean that he could be susceptible to a low, and he didn't trust the school to deal with it. He was worried about catching a bus. What if he went low on a bus? You know, he'd read somewhere that a type one diabetic had been mistaken as being drunk or drug affected, and he was scared that people wouldn't realize. We started sleeping with him because he was scared at night.
Oh gosh.
He wouldn't go to birthday parties. He his life just spiraled down. He was too scared to go to birth birthday parties when we'd accompany him. He'd eat junk because he's impulsive as well. And then he'd be high, and we'd have to take him home because he didn't wanna be injected there.
He started pretending to inject a certain amount of insulin and not inject it. So we started to get into those sorts of behaviors. He started eating less than he would say he would eat so that he would Yeah. Not go low.
Savannah, I wouldn't normally do this because we're because I'm time crunched. I wanna ask you, you've gotten through that stuff. How did you get through it, or how did he get through it? Or is it still happening?
No. It's not still happening. So if we go back if we're time crunched, I may have to go back to the beginning because we have a bit of a twist.
The twist: chasing MODY57:19
Go ahead.
So so from the beginning, he was told that the presentation looked different than expected, that he was an anomaly, he was atypical. So I really started questioning that, and I started looking at what it could be, other than diabetes, other than type one, and there wasn't much. Most of what it could be was almost more you know, it was life limiting. It was worse than type one could ever be. Mhmm.
But we I did stumble across Modi. So you've probably heard of Modi.
Sure. Of course.
Yep. So we did stumble across Modi, but, you know, Nigel, normally being level headed, and he was even then, he was saying, you're ridiculous. You're just wishing it away. It can't. It couldn't possibly be.
When we went to see that fairly early on, when we went to see that private endocrinologist, He just happened to be the head of the hospital that we were at and had an interest in Modi too. So he said to us, well, you know, given the fact that your because we've got a lot of diabetes in our family, it's all type two from what we can see. Given your history, you know, that there isn't any type one. There is autoimmune given the fact that by the time that we'd got to him, we had got the antibody testing back, but only half of it, three or more than half, three antibodies negative, the other two were pending. He said it could possibly be MODY two.
We don't know. It could possibly be, but it's looking possibly like it's type one because we're seeing an evolving picture of higher blood sugar levels.
Yeah.
We go back to him when we get that positive zinc transporter antibody, and he says, oh, look. It looks like type one. Right. But it's an unusual antibody to be positive. At that time, which is kind of quite strange, it was also the time that his C peptides had gone down, and so he and so had his insulin.
So it looked like it was type one. It looked exactly like it was type one. But the small print on the pathology said if you're taking biotin, it could reduce those, and Felix had been taking biotin. So in my mind, I'm just thinking, I think I'm going crazy, but could it be Modi two or any sort of Modi? Some Modis are better than others in terms of, you know, I suppose, how you treat them.
And then I thought, oh, Bitin. He's taking Bitin. Could that be but I wasn't exactly sure. What we had done, though, initially was that we had requested genetic testing at the hospital. Mhmm.
The hospital the genetics department had not approved it because his case looked like with the positive antibody, it started it started to look like type one. So they had not approved it. Our doctor had said but they had referred us on to a genetic genetics department at a nearby hospital who basically said, we have to get sign off by your endocrinologist. So we went back to the endocrinologist who said, oh, no. Look.
We'll do it here. You know, I don't wanna do sign off because sign off involved writing a 25 page report almost. You know, she had to fill in 25 pages of why. We got sign off at the end of twenty twenty four, as in we provided consent for genetic testing. We were told the reason why an endocrinologist said that she would do it was to put it at rest because we had brought it up so many times, and she thought it was time for Felix to get to to start pump therapy.
So and we were kind of, oh, look. It could be. Could it not be? It may be. It's he's still an anomaly.
We're we're just being told he's an anomaly. His his blood sugar levels are never that bad, even when we can't control them because he's eating when he shouldn't be because he's trying to keep himself at 180. His a one c is always six point it's higher than 6.4. It's usually 5.7 to 6.2. You know, it seems strange that whatever we do, we can't really budge that.
And so he got tested, but because it wasn't expedited because everyone thought that he had type one. We thought he had type one. It was just to to really just to please us. Really just to, I think, shut us up. Mhmm.
Yeah. Really. So what happened at the end of last year when we had the meeting when we were going to talk about pump therapy, we were told that genetic testing had come back and that he was positive Oh. For Modi two.
Yep. See? You're not you're yeah. You're yeah. Look at you.
You were right. How about that? I'll be damned. Savannah, where did it go?
But by that stage, we had we had forgotten.
Positive for MODY 2 — to be continued1:03:12
We had
actually we had actually, approved the testing the day before Christmas a year before, and this was August, September the year after. So what we had done is really not being happy with going on a pump because we thought that Felix would manipulate it to get give less insulin
Mhmm.
Because that's what he was doing with the with the needles, with the injections. He was just manipulating everything, and we were worried that he'd do that. It'd be easier for him to do that with a pump. And so so we get to a stage where we find out we were all surprised. We were as surprised as they were because we had convinced ourselves that So he had type then Nigel being so he is definitely the hero in this because I'm the one that brought it up in the first place, and he thought I was crazy.
But by this stage, by the time that he was diagnosed with type with MODY two, Nigel then took the research role over. I was absolutely I was up all night with Felix. He was anxious. Mum didn't know day from night. She was up all night.
It was like I had two
newborns. Yeah.
Like, I was absolutely exhausted. I couldn't so Nigel started researching. What he what he found was that type one like, a lot of Modi two people have misdiagnosed as type one or type two. And he thought, well, why how could you be diagnosed with type one for a long period of time? If you're diagnosed with type one for a long period of time, you must be able to take a lot of insulin in.
You know? It must look like type one, but it may could be moody too. Do you understand what I'm saying?
Like I do. Yeah. But, Siobhan, I'm so stuck on time. I I wanna
Yep.
Can I just get you to come back and finish this story another time? Would you be able to do that? I'm so sorry. Like definitely be able Would you? Okay.
Not a problem.
No. No. Okay. So listen. I'm gonna alright.
Let me just say to everybody, I'm gonna talk to her now and get this the rest of this fit, scheduled right now. So hold on. And with the next time you hear us talking, it'll be in the future. So thank you very much. Hold on one second for me.
Okay?
Okay.
Two. Same app, same show, don't you fret.
The best parts come and you're not done yet.
Same app, same show, don't you fret. The best parts come
and you're not done yet.
Part two. Right there in your app. Go on. We'll wait. Same app, same show.
Don't you fret.
The best parts come and you're not done yet.
Same app, same show. Don't you fret. The best parts come
and you're not done yet.
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#1925 Blue Shoes
Blue Shoes
Diagnosed in DKA at 18 in Mexico, told she might never have kids, Tzinnia spent thirteen years on NPH before modern tools. Now in Nebraska with twins and an 85% time in range.
Jump to a moment
- A young doctor recognized it by smell. Sent home once from a full ER and told she was probably hungover, Tzinnia was in DKA and, her family was warned, might not survive the night. A shift-change doctor caught the ketones and started insulin.
- Thirteen years on NPH and regular. Diagnosed in 2006 in Mexico, she ran a roughly 6.7 A1c on old insulins — sitting up until 3 a.m. nightly for a year to catch lows — before switching to Lantus, then a Freestyle sensor in 2019, and eventually Omnipod 5 and Dexcom.
- “Nobody told me what the blue shoes did.” People mentioned newer insulin but never explained the benefit, so she stuck with what worked. Her takeaway for clinicians: don’t just offer an option, explain how it works — and for patients, ask more questions.
- Told she might never have kids — she has identical twins. A natural twin pregnancy she carried with a 4.9 A1c. She wants teenagers newly diagnosed to hear that the scary predictions about kids, travel, and drinking don’t have to define the life ahead.
- Today: 85% time in range, 75–160. Now in Nebraska, married, working, raising two 15-year-olds (both TrialNet-negative), Tzinnia credits understanding the condition more than any single device — and still calls the CGM the upgrade that changed everything.
- T1D Exchange Registry — US residents 18+ with type 1 can complete the survey and help move T1D research forward.
- TrialNet — Free risk screening for relatives of people with type 1 — the antibody testing Tzinnia uses for her twins.
- Bold Beginnings series — Scott and Jenny Smith's series for the newly diagnosed — straightforward answers that cut through the jargon.
Every word of the conversation
Hello, friends. Welcome back to the juice box podcast. Guys, head over to the t1dexchange for me and take their survey. T1dexchange.org/juicebox. Doing so will help to support type one diabetes research.
It's easy for you to do, and there may be even a little bit of something you get out of it. Go check it out. If you're over 18, have type one diabetes, and a US resident, head to t1dexchange.org/juicebox and complete the survey. Nothing you hear on the juice box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin.
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That's it. And here's a little bonus for you. How about that there's no limit on how many friends and family you can share your data with with the Eversense now app? Eversensecgm.com/juicebox. Now let's talk about Tandem Mobi, the impressively small insulin pump.
Tandem Mobi features Tandem's newest algorithm, Control IQ Plus technology. It's designed for greater discretion, more freedom, and improved time and range. Learn more and get started today at tandemdiabetes.com/juicebox. Touched by type one is my favorite diabetes organization, and they're sponsoring this episode of the juice box podcast. Please take a moment to learn more about them at touchedbytype1.org.
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Go check them out at touchedbytype1.org and see what they're up to.
Diagnosed in Mexico at 182:32
I'm senior Robertson. I've been living with type one diabetes for the last twenty one years. I was diagnosed in 2006. And, yeah, I was diagnosed in Mexico, so I guess the story could be interesting.
Awesome. How old were you at diagnosis?
I was 18 years old.
Okay. Wait. Did you say 21 years? Yep. So you're 39?
On the forties right now.
No. You're 39. Right?
Yes.
Yeah. Yeah. Yeah. That's how you say it. I'm 39.
Are you married or kids, anything like that?
Yeah. I'm married. I have twins. They are 15 years old, and I have been testing them with the trial net. Thankfully, they've been negative.
No, no marks on
their Okay. No auto any they're not showing any antibodies or anything?
Yeah. No.
Well, that's good news. That's good news. Do you do you have any other autoimmune issues, or do your kids or anybody in your family have, Hashimoto's or celiac or anything like that?
Yeah. Well, my grandma, my mom's mom, she used to have the, skin patches. The name is, like, Vitiligo. I don't know the name
of Yeah. Vitiligo. Yep.
Yep. That's what she had. And, well, when I when I knew this was an autoimmune disease, I understood better where it came from.
Yeah. You start figuring it out. Right? I mean so no but no type one diabetes in your life other than you?
No. Just me. And I hope I'm the only black sheep.
Well, that doesn't make you the black sheep, does it? No. Not really. Of course not. No.
But I hear what you're saying. You don't want anybody else going through this if they don't have to. Right?
Right.
Nosebleeds, weight loss, and a missed cold4:26
Yeah. Right. What, what precipitated your diagnosis? What what did you notice? You know, how did you handle it?
How do I handle it right now?
No. No. No. Back when you were diagnosed, how what what was the first thing that made you think, like, oh, I'm something's wrong?
So I was losing a lot of weight. You know? All the DKA symptoms, I was actually in DKA when they they diagnosed me. I was feeling so bad. I had my heart rate was super fast, and I had, like, hypothermia.
And my mom took me to the hospital. Well, she first took me with my uncle. So my uncle, he's a doctor, just like a family doctor. Mhmm. And he tried he tried taking my blood pressure, and he couldn't.
Like, the the he had this electric, blood pressure thing machine, and it didn't work. So he thought it was the battery, and he changed the battery, and it was not working at all.
Is it because was your pressure so low it was having trouble reading it?
Yes.
Oh, wow.
Yeah. And I was throwing up that day so bad. I couldn't stop. I couldn't eat anything. Yeah.
Like I say, my heart rate was super high. Like, it was pumping so fast. I feel that I couldn't breathe. Mhmm. And then I had the hypothermia.
I was so so cold. Really? Yeah. I was in front of the of the heater, and I could not get hot. Like, my body was not warm.
How long had you
I was literally dying.
Yeah. Yeah. No. No. I was gonna say, you know what it's like to try to die.
So what's the, how long was that going on for? Like, when you look back, how long do you think you were not making your own insulin at that?
So losing weight, that was for a couple of months. But that was I kinda had, like, a cold before. Mhmm. And I did my mom took me to the doctor, and I told him that I was having, like my nose was bleeding for a couple of days. So he was like, okay.
We're gonna send you some lab work, and we'll see. You probably are you probably are losing weight because you, you know, when you hit puberty, you right now, you're in, you know, the teenage years, and some people get fat, some people, you know, lose weight. And I was like, oh, okay.
You're like, what about the my nose has been bleeding for four days. What about that? Yeah.
So he send the the the blood work, but they didn't take the the the blood that day.
Okay.
So I had to schedule that. And that was that was going to be, like, a week after. And before that came up, I ended up in the hospital
Yeah.
With the PA. So I had all those symptoms. My mom took me with my uncle. My my uncle was like, you know what? This is not good.
He told my mom to rush me to the ER. We went there. So in Mexico, have private insurance or you have kinda like the universal or public insurance Mhmm. From the government, which at that time I didn't have private insurance. So they took me there.
And it the hospital was, like, full. The emergency room was full. The doctor who was assigned to me kinda told my mom, like, has she been going out? Like, has she been with her friends and drinking and stuff like that? And my mom was like, no.
She's not been going out. She's been sick for the last couple of weeks. Yeah. And he was like, kinda, like, telling my mom, like, if I was using rocks.
Oh, she's probably hungover or That's what that's Yeah. Okay.
Exactly. So my mom was like, no. I don't think so. Anyways, he connect me and they gave me, oxygen. They put some oxygen.
Mhmm. And then
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The doctor who smelled DKA10:31
He put an IV, which, you know, the regular IV has glucose. And I don't remember the rest of the that day. Everything that I'm gonna say is the story that my mom told me.
Wow. Everything after the IV is retold to you because you have no recollection of it at all? Mhmm. Wow. That's great.
I wanna hear. What what did your mom say happened?
So they sent me back home. She was like, she will she will be fine. Take her home. They took me back home. I went to sleep.
I peed my pants. I was I I was in the closet, so I have my, you know, the walk in closet in my room. Yeah. And I was trying to go to the bathroom, but I was making noises. Like like, I was like, not feeling good.
So my mom heard that she went to to look for me, and she found me in the closet peeing my pants.
Your mom was probably like, this kid is she's probably like, this kid is on drugs. Yeah. She she loves you.
Like, this is not good at all. She was like, why are you doing? And I was like, mom, close the door. I'm in the bathroom. Oh.
I say.
My gosh.
So she was like, no. This is this is bad. This is not good. So she called my uncle again, and she was like, hey. This is going on.
They sent her back. He was like, come come pick me up. I'll go with you guys.
So Can I ask you a question real quick? Can yeah. How do you say how do you say in the closet in Spanish? I guarantee that's what she said to your uncle. Yeah.
Guarantee it. Yeah. Yeah. She's peeing her pants in the closet. She's like, listen.
She doesn't know what is going on.
Shit's upside down over here. Okay? My god. I'm sorry.
What did you And I do not remember.
Well, thank god thank god you don't remember, honestly. Okay. You don't who needs to carry that with him? So Right. Nobody.
Yeah. Yeah. I'm sorry. I'm sorry. So your uncle go ahead.
Yeah. He was like, pick me up. We will go there together. So we went back there. All the ER beds were full.
My uncle took someone from the bed and put me there because I could not walk at that at that point.
I could not walk. Okay.
“Call the family — she may not make it”12:47
So, thankfully, it was kinda like the shift change for for the doctors. So there was a new doctor getting in the ER. So this was a young doctor. He only what he did was he smelled me. Yeah.
And he asked my mom, is she diabetic? And my mom was like, what? Yeah. Is she diabetic? And she say, how is that?
She's diabetic. And he was like, yeah. Is she being diagnosed as a diabetic? And my mom was like, no. No.
No. She's she's not diabetic. And he was like, well, she is. And I turned and they put the IVs and everything. They were I do remember they were I don't know.
How can I say it? They were, like, ripping off my clothes with scissors.
Mhmm.
And I was so worried because I was wearing one of my best friend's hoodies. And I was like, no. In my mind. Right? I was like saying to myself, oh my gosh.
She gonna get mad. This is not mine.
You can't you couldn't speak out loud. That you remember that. You remember that from this I remember. Yeah.
I do remember looking on my arm and the scissors. They were couldn't ripping off my hoodie, and I was like, this is not mine.
Not my top. It's not my top.
But I yeah. I I could not say anything. Sure. You know?
Well, yeah, you were trying really hard to die, it sounds like. What was your blood sugar? What was your blood sugar?
I I never knew. No. I never knew. I don't even know if they did peptide like, the c peptide test. So I don't know.
I really don't know. So when they last came back, they told my mom she's diabetic for sure. And they started using insulin, and the insulin they started using was NPH insulin
Mhmm.
At that time. So I spent three days there. The first night, they told my mom that, she should call all my friends and family because they they were thinking that I was not going to make it.
No kidding. Yeah. Tell me again, you were 18, 19?
18.
18. And your mom's got a call around the family, say, come see Cindy. She she might die.
Yes. Wow. Yeah. It was my second semester, in college. So I didn't go, for, like, a month.
Some of the teachers were really nice and understood what was going on, but some others didn't care and just had to take that class again, you know, the test
Yeah.
As a second chance. And
yeah. Wow.
Anyways, yeah, I spent three days there in the ICU. And then
When did you kinda become in those three days, were you with it again, or did it take you how much time did it take you to kinda get your faculties and and your wits about you?
Well, I, like, I don't I really don't know.
So I
I do remember I think it it was the next day or on the second day that my best friend went to see me, and she told me it was a shock because they were, you know, they were pricking my fingers, the nurses, to check on my blood sugar, but they leave me like, my finger was still bleeding a little bit. So I was scratching my face, and my best friend say that when she got inside of the room, she saw, like, blood on my face because it was from my fingers, but I was just scratching my face with my fingers.
Yeah. Let's say that you weren't you weren't with it by then, let's say. Yes. Exactly. Okay.
And and so she was like, it was a shock. I was she would just say she was scared. But
Young girls do. You know? I mean, think about that. Really, put yourself in that position. You're going to the hospital to visit your friend who might be dying, and there's blood all over their face, and she's incoherent.
Right. Because my mom had to tell them, like, hey. I need you to come see her because we don't know if she gonna make it.
Boy, is that something else? That's scary. How'd your mom, how did that impact your mom?
I'm gonna be very honest. She never she never I never saw her crying.
Okay.
She was always so strong.
Did it make her extra protective of you, do you think, after that?
A little bit. Not in a bad way. I mean, they were always, like, very protective family with me and my my siblings, but I do remember. And this is a funny story. We went to Las Vegas two years after my diagnosis.
And, you know, the stratosphere, they have these roller coaster stuff. And my mom was like, no. Don't do it. Don't do it because your blood sugar is gonna go high and stuff. And I'm like, calm down.
I'm gonna be fine. So I did it. And just for her peace of mind, I checked my blood sugar after. And I was like, I'm 120. I'm fine.
I can do it again.
I can do it again.
She was like the the those were the kind of things she was worried about. You know? Like
Hey. You said Yeah. When they gave when you were diagnosed, they gave you NPH. How long did you use, like, NPH and regular for? Where did you where did you use NPH and baby?
Thirteen years on NPH18:22
I'm sorry. What was your faster acting insulin? Do you remember?
Did not have one until until they sent me to a specialist.
Oh, wait a minute. Are you gonna tell me they thought you were a type two?
I think so because they also gave me a, like, a eating plan that was based on 2,000 calorie.
Oh, I oh oh, okay.
Told me we were using insulin to cover carbs. Okay?
How long did that go on
that was, like, two months.
Okay.
And then they sent me to the specialist, and I was like, okay. This is not enough. I was running in the four hundreds.
And For two months?
Yeah. Not not not all day. You know?
I'm 300,
300, 200, 300. You know? So they say they sent me to the specialist, and then she was like, well, you need to use fast acting insulin. And she gave me at that time was a Humalog Lispro.
Yeah.
And she was like, and you can even combine the NPH with the with the to mix it. I could mix the NPH with the Humalog in the morning and at night when I was taking dinner.
That's what you
were doing. But nobody told me about pre prevolous, you know, like, nobody told me about it.
I mean, that that's a weird that's a kind of a weird setup. How long did you do that for, the the Humalog and the Miles per hour?
Until 2019.
Wait. Did you say 2019?
Correct.
Wait. Hold on a second. It's 2026 now. That's seven years ago.
Right.
Uh-huh.
It took so long. I mean, I was just doing good with it. I I always stay under you know, my a one c was around six, seven. Six, seven.
Were you low much?
At night. Yes. I actually kinda, like, had a period of time, and that was when I went to another specialist because I was like, okay. This insulin is not is not good for me. Like Mhmm.
I knew at 3AM I was awake until 3AM because I knew I was going to have a load.
Oh, gosh. Every every night every night you'd sit up, Zenia?
Every night. Yeah. For and that lasted, like, a complete year.
Oh my god. Like
yeah. So I went with the new specialist, and he was like, yeah. We need to change you. I don't know why you are taking this insulin. Like, this is the oldest thing in Earth.
And he changed me to Lantus, and that was awesome. That started working great. Obviously, I could not mix it anymore.
Yeah. But you did that for how many years did you do that? How many years did you do that for?
The NPH and the Humalog was for thirteen years.
Oh my god. How does no one mention are you in Mexico the whole time?
Yes.
Okay. Nobody ever says to you, hey. We have a more modern insulin. It's called Lantus. Would you like to try it?
I knew about it, but you know what? I was like, yeah. What I mean, this is working. And I was still going to the public health system, hospitals and doctors and stuff. And they were like, oh, you're doing really good.
Because I was really I was doing good. Thankfully, I I can say right now that I don't have any other complication. Yeah. Knock on wood. No.
But I'll knock on it for you. There you go. So so it was working, and somebody did mention Lantus, but you thought, well, this is working. It's I'm not gonna change.
Yeah. Okay. Until I was like, okay. This this is not I need I need to, you know, do something else.
What pushed
also start using the because I was, you know, MDI, and I was not using any sensor
until 2019. I gotta be honest with you. If you were on Miles per hour, but you had a a CGM, I would have been like, I I don't know how that happened. So so you're without us how how many times a day do you think you tested for that time?
Oh, I was testing, like, every every time I cool. I was spending a lot on test strips. Like,
yeah. You think you were testing 10 times a day?
Easy. Yeah. Even more.
Yeah. Yeah. Wow. My gosh. So but when you changed, were you in Mexico still when they said Lantus and CGMs, or had you moved by then?
Okay. So in Mexico, they released the the freestyle in Mhmm. I think 02/2019, and that's when I switched to it. Okay. It was the fourteen days, and it was not it was like the flash one where you had to
Hold the
scan it with your phone.
Yeah. Yeah. Yeah. To scan it.
Yeah. Mhmm.
Yeah. That was fun. Well, I guess it was better than nothing. You were probably thrilled you could stop testing your blood sugar all that time.
Oh, it was fantastic.
Yeah. No kidding.
I was like, I don't need to be pricking my fingers anymore.
Right. Like, what a what an upgrade for you. Right?
Yes.
Yeah. Yeah. Okay. Alright. Well, I mean, thank god it you don't have any, you know, long term complications and you and you get modernized, you're moving along.
Is there a big change for you of a serious, I don't know, upgrade having moved to the Lantus? And, I am assuming your Lantus and Humalog and then a CGM, or is it just like, oh, I still do a good job, but it's easier? Like, what's the what's the viewpoint? No? No.
Modernizing: Freestyle, Omnipod 5, Dexcom24:04
No. Definitely, it's been a huge change. You know, I stay well, right now, I'm using the Omnipod and the Dexcom seven.
Okay.
But, yeah, it definitely improved improved when I started using the the the Freestyle and then when I moved to the pens and then I moved to the Omnipod. So it's been great.
A one c go down or just the amount of times you have to touch diabetes got better?
Both. Both. My time on range and also my a one c went down a lot.
What's your time in range? Do you know?
Right now, it's 85, 86%.
That's awesome. What what range are you measuring?
I go from 75 to one sixty.
75 to one sixty, 85% of the time? Yeah. Good for you. And that's Omnipod five or Dash?
The five.
Five. Wow. Awesome. Did you get the, the update for the new 100 target?
Oh, yes. I did, and I immediately changed it.
Good for you. I people are are enjoying it a lot. I hope it I hope it shows something. I mean, I guess maybe you're a good person to ask, but you've had it for a few days, a week.
Yeah. It's been a couple of days. What I'm having trouble right now is with my DexCom seven is the fifteen days, and it was crazy. Like, last week last weekend? Yeah.
I think it was last weekend, like a week like a week ago.
Okay.
We went out, and we went to eat sushi, and I was feeling fine. And we went to a bar next to the restaurant, and I was like, okay. I'm gonna, you know, I'm gonna prepare for it. Because I knew I was a little a little high. Mhmm.
But I was like, okay. I'm gonna take a couple of of units, and I'll wait for my drink because I know my drink was going to have a little bit of sugar. Mhmm. And I was like, you know, it doesn't match what it's saying. So my sensor said I was hitting the three hundreds, and I was like, no.
No. No. No. No. Thankfully, I have my my glucose meter with me, and I check on my finger, and I was actually two hundred and ten.
And you had taken a lot of insulin?
Yes. And I was like, oh. So my friend went to the to the bar, and she was like, hi. Can you give me a doctor Pepper? Was like, doctor Pepper?
Yes. I like that one.
I'll take that one. You didn't get low, though. You you're able to figure it out. But you're saying that your sensor was saying 300 when you were more like two ten.
Yeah. Which is, huge.
Is that a thing you didn't experience with the g seven ten day?
No. No. Okay. Neither with the g six when I was using the g six. So
Okay. Arden is using her Arden's using her first fifteen day right now. So, I mean, so far so far so good. It's been it's been okay. I think we're, like, four or five days into it maybe.
But we didn't mean to switch. We had some of the other g sevens still, but I think she sent her boyfriend to the drawer to get something, and he grabbed one of the new ones by mistake, and she just popped it on. So, I guess we're, I I guess we're gonna ride it out and see and then probably go back to the others, use them up, and then switch over for the rest of the way.
Right.
Yeah.
Time to try it.
Yeah. What made you move to, The US, and where'd you move about where'd you move to?
Nebraska, football, and a stadium low27:37
Yeah. Well, I moved here in two thousand twenty one because I got married, and my husband is from here. So, yeah, I'm I'm now here, and and it was a a fun experience, actually, the first time I came here to visit his family and meet them all. Because here in Nebraska, you know, it's a big thing, the college football. And
You're in Nebraska. Wait. You're in Nebraska now? That's hilarious. I'm in Nebraska.
Kinda hilarious, isn't it? Yeah. Yeah. Yeah.
Yeah. So he was so excited. He was like, okay. For my birthday, we're gonna have the tailgate, and it's gonna be the kickoff from today.
City. Gotta tell you.
And I was like, oh
You're you're you're kinda fair complected. You must you must confuse the hell out of those people.
I know.
Yeah. Yeah. I'm sorry, guys.
But it is what it is, and I'm here now.
They must they must hear your accent and be like, I don't know what's happening.
Yeah. They are like, what?
I'm sorry. What what about the I I I confused. What about the college football? What were you saying?
So the first time I came to you is my husband when we were still in our relationship. Mhmm. He was so excited. It was his birthday, the kickoff of the college football, and we had tickets for that game. Mhmm.
And so it was going to be a long day. I had everything with me. I had, you know, a couple of juices and snacks and everything if I have a low. But at that time, I was still MDI and using my finger Yeah. To check my blood sugar.
So we went there. We were tailgating. And, obviously, I mean, we were drinking. Not a whole lot. I was always very, you know, like, to not be not be, like, over drinking because it scares me.
It actually gives me a little bit of anxiety that that point where you are fine and where you are not and then you don't have control of yourself, and I don't know if I'm gonna go low. So that's I I try I try not to cross that point because of that. And it was time to go to the stadium. So we start walking, and I was like, I'm having a terrible low. I told my husband, I can't keep walking anymore.
I can't. I'm gonna die right now. I I'm gonna die. I'm gonna die here. He was like, no.
No. No. I'm gonna get you something. He runs to get me something. You know, it was so packed.
All the people was walking to get into the stadium. Mhmm. And he had to call 911 and the ambulance. And so the ambulance got there. And I don't know this lady.
If she's listened to to this podcast, thank you so much for giving me your Pepsi. I think it was a Pepsi or a Coke. I don't know her. I just drink it.
Yeah.
And I start throwing up. I when I go low very fast, I throw up. So I don't know if there's more people who have that and happen to them the same way it happens to me, but it's just something that I
You if you drop if you drop
when I'm having trouble.
So you're telling me if you drop quickly, you vomit? Yes. Do you get nauseous?
Yeah. Yes.
Yeah. Okay. Alright. And that so you know if you start having that
recognize blows.
Yeah. You start having that feeling. You think, oh, I'm getting low.
Yes.
Okay. Okay. So he's got a call, but are you just dating at that point?
Yes. It was the first time I came to Nebraska.
You're like, he's gonna take me back to Mexico and leave me there. Yeah. Yeah. Well,
he was so worried. Like, the next day after everything this happened, he was like, oh my gosh. I was so scared, but I was going to tell your parents. And, like, yeah. Your your daughter came to visit me, and now, you know, she's dead.
You know? Like, he was so worried. Sorry. I killed your daughter at the at the Nebraska game. Yeah.
Yeah. Exactly. Well, the good thing is that, there was a storm, so the Nebraska game never happened. So it was fine. We didn't, you know
Wait a minute. No. I I know this is apropos of nothing, but there was a storm so strong it ended a it made a college football game get postponed?
Yes. That's crazy. The first the first game of the season and the first game for Scott Frost. Frost is his last name.
Okay.
He was the head coach. Yeah. Yeah.
And and they can't they they rescheduled a college football. Football doesn't get rescheduled for weather very often.
That's Well, it did that day.
That day. Mel, that's good. Did you get to go to the game then? Yeah. Yeah.
See, it all worked out. Maybe they post standard for you there. Like, you know, Zinni is out there. She's throwing up and dizzy and everything. Doing very well.
Yeah. Yeah. Yeah. Let's make sure she sees her first game. Well, what did did they treat you on the scene and then leave you there?
You did did you go to the hospital?
No. I I went to the hospital, and they put some IV and everything, and I was fine. Actually, they treat me on the ambulance. They gave me a couple of, you know, those gel packages Mhmm. With glucose.
Yeah. And when I got to the hospital, I was fine, but they still wanted to make sure that I was okay. So yeah.
They got you on the hook now for the bill. They they wanna they wanna finish up, get you they wanna get all the money. Yeah. Yeah. I hear what you're saying.
Well, does this stuff happen to you often, the passing out?
No. No. No. Like I say, it was totally an accident because we ate very early, and I just I didn't have in my mind how much of walking it was. Yeah.
And, you know, I was just sitting there talking with people. Everybody was so happy to meet me. You know? Like, oh, this girl, my best friend's girlfriend from Mexico.
Yeah. Right. No. It's exciting.
We were talking and talking. I sat down. I start feeling bad. And then my my now husband, he was like, hey. We need to go to the to the stadium.
And I was like, okay. I start walking, and I was like, I can I can keep walking? Like, I'm I'm dropping so fast. And, yeah, that's what happened.
How long ago how long ago was
that? That was 2018.
2018. Right before you get a pump?
Yeah. Well, I I think I got my pump. The first time I used it was in 2022.
Oh, wow. Okay. Mhmm. Wow. Jeez.
Why she came on — for the teenagers34:22
You've had a whole little life here around this. Made you what made you wanna come on the podcast? Like, what what got you to reach out? Because it's the big deal. People don't like you said before we started recording, I've never done this before.
I'm a little nervous. Like, what makes you follow through and actually do it?
I think just sharing the experience, you know, especially when you are like, I think I would like more teenagers to listen to this because it was hard for me being diagnosed when I was a teenager in Mexico. You know, the diabetes education there is I hope it is better now, but at the time was very different. And I never met someone with diabetes in Mexico.
Never?
No. I do remember one of my friends told me, like, hey. My neighbor has that thing that you have, and he wears a pump. And I was like, well, that's very far from what I can get right now. And I think he was getting a pump in The United States or I don't know where.
Like, he has to travel to get it or something like that.
Had it worked out somehow.
I was like, oh, okay.
So not a person you even met, just a person down the street that somebody knows about, and that's it. And so so Yes. If a teen heard this, what would you hope that they took from your story?
Well, you know, you will get there. You will learn about life. And I know they get so worried about especially women because one of the things they told me is like, oh, you're probably not gonna be able to have kids. Oh. Well, guess what?
I have I have twins, actually.
Made them both at the same time. What do think of that?
Yeah.
So So do you think girls get told maybe you won't be able to have a baby, and it's scary, that kind of stuff?
Yeah. That's scary. You know? Like, they tell you all the complications complications about about being pregnant and having diabetes. Mhmm.
And and then they tell you about, you know, you wanted to start your life. You started becoming an adult, and you want to start drinking or just enjoying a drink, you know, like, or traveling. You know? It was so scary for me. Like, how am I gonna travel with all this?
What if I don't have enough supplies?
Well, where'd you find the
You'll get there. You can do it.
How how do you how do you think you do.
This is scary.
How do you think you gained all that knowledge to do those things? Because you traveled out of the country. You dated a guy, you know, not from where you're from. You had babies. Like, you got married.
Like, where do you think the is it just practice, or how do you how do you wrap your head around Yeah. How you were able to get this done?
Definitely practice, but also I like to read. I like to read. I like to investigate. You know, like, figure it figure things out. Like, if this is not working, well, what else?
You know? Like, I need to figure Mhmm.
And
find, you know, problem solving. Yeah. So I think and, you know, when you just feel comfortable, comfortable, you you need need to to get get out out of of that that zone. Zone.
Okay. Okay. Yeah.
Just be other things that are better.
Have experiences
happened to me.
Yeah. Yeah. Well, I mean, I I guess whatever doesn't kill you makes you stronger. That kind of an idea. But, also, you don't wanna be in terrible situations.
The blue shoes nobody explained37:32
Do you wish that you would've changed insulin sooner? Do you wish that you would've had access to technology sooner, or are you happy for how your path was?
No. Absolutely. I would have liked switch sooner.
What do you think having been a person who somebody, you know, said Lantus to you, but then you didn't change, like, what is it you should have been more open to hearing when somebody was making suggestions?
I would have liked to hear more like, hey. This will act this way. This is not like, oh, there's another insulin in this one. But how it works. You know?
And maybe I should have done more questions Mhmm. I think.
So you are you telling me that, you know I don't know. You somebody gave you a a red pair of shoes, and then they said, there's blue shoes too. And you said, no. Thanks. I like my red shoes, but they forgot to tell you that the blue shoes make you fly, and they come with a thousand dollar check.
And, like so nobody told you what the benefits were of the thing they were offering you. They just said, would you like blue shoes? And you said, no. I'm good with my red ones.
Exactly.
Like that. Okay. Alright. So Mhmm. Don't just turn to if you're a doctor, don't just turn to somebody and say, hey.
Do you wanna try this? Tell them why maybe they would want to give them some background so they can understand.
Exactly.
Have you have you found the care in America any different than in Mexico?
Yes. It is different. Like I say, I never went to the I I did I did go to, some private appointments, but I never stick to it, you know, like, keep going with those doctors. Maybe because I was just doing good. But here, my endocrinologist, she's also type one.
So I love that because she really understand, you know, how I can feel and all the ups and downs, not only, like, what the book space.
So having a doctor who understands better is helpful, but at the same time, you need to take a little responsibility too and ask more questions if if the information is not being offered?
Exactly.
Yeah. That's one of the things you've learned over time. How do you think that's gonna change you moving forward? I mean, obviously, you have Omnipod five now, but if, you know, Omnipod five comes out with another version or another company says something that you're like, oh, that's interesting. How are you staying, Are you maybe, maybe you're not?
But how are you staying up on what's going on and making decisions about whether or not where you are is good or if you need to change?
Well, definitely following, you know, the the page in Facebook helps to keep updated because sometimes I don't even open my emails. Mhmm. Like, I just get so many emails. We work, and then I have the teen the the the boys are are teenagers right now. So life is busy.
Right? But, you know, following people who can bring more information. I think now with the social media, you can get that information right away.
Kinda keep up a little better.
So being being open to try new things as well. You know? And if it doesn't work, you you can just go back to what what it was working Mhmm. For you. So, yeah, definitely, if if if Omnipod comes with something new, I will definitely try it.
I also I've been looking on other prompts, like, I willing to try something with you know, that is not too blessed or yeah. Right now, I'm good. I also the other thing is, like, insurance. You know, that part of the insurance. Like, if I switch, how will we if it's if I switch, am I gonna do it?
Do I wanna do it? Do I want to spend that money on that, you know, if I'm if I'm doing good right now? It's like you know, there there's a lot of factors that you have to take on
Yep.
Take that decision.
Hope for the Eledon trial41:30
Is there something that you're hopeful about? Like, things you've heard about that you think, well, I can't wait for that to actually happen?
Yeah. I'm very excited about the Elodon trial that they are doing right now. It seems promising. Mhmm. And, yeah, I wish they they could, you know, work on that isolate, act faster, and get it set, more people can get the the trial.
And See where it goes. What would
it I see it very, very, very close. You know? They say five years, and he's been 21. So Yeah. Me, at least.
I know there's people waiting for longer.
Yeah. Yeah. I don't usually ask questions like this, but what would it mean to you if that I don't know. Let's say that procedure just becomes the way things are done. You get type one diabetes.
You go see somebody. They put some islet cells in your liver and give you a anti rejection medication that doesn't cause cancer, hopefully, and then you aren't using insulin anymore. Like, what what do you think that how do you think that fundamentally changes your life?
Well, I think that the first thing will impact is the time. You know? This is time consuming. But I don't know. I mean, just
Time's a pretty good answer.
Taking decisions.
Yeah. Not thinking about it all the time.
Many decisions. Exactly. Yeah. It's like my kids also ask me things like, hey, mom. When is my driver's license appointment?
And I'm like, I cannot keep all of that in my mind. I have enough, but I do have the calendar so you can check-in there.
When is my driver's license appointment? I have diabetes. Leave me alone.
Don't leave me alone. No. I'm I'm pretty good about it, but there's some times that I forget about things too, and I'm like, I don't know. It's just go to your calendar. I have enough things.
You know?
And No. No. I hear you.
Being a mom with twins43:22
Yeah.
How does it impact being a mom other than that, or does it not? And how much of this do you share with your kids? Like, how aware are they of your health and and how it is and what you do?
Well, they are they are amazing. Like, sometimes I'm like, hey. I know you would like to take some of my Sour Patch, but I'm not gonna share with you
because
I'm far from home. And if I need them, you don't want me to die because you are the only one here with me. You gotta figure it out. He's like, no, mommy. It's fine.
The lady
with me.
You're the lady turning Sour Patch Kids into medicine. That's no fun.
Yeah. So Do they No. They're doing good. If I ask them, like, hey. Can you bring me a juice from the fridge?
They would do it.
Right? Know why.
They understand.
Yeah.
Yeah.
Yeah. Could they help you if you had a seizure?
Yes. I know they will be able to help me. Actually they just got the American Red Cross CPR certification and all of that. They are lifeguards. That as well.
Oh, they're they're lifeguards?
They don't freak out.
There's a all I heard all I heard was there's a pool in Nebraska. That I didn't expect at all. But
That that that is is here.
They're life are they identical or fraternal twins?
Identical.
No kidding. What what what's the one thing that helps you tell them apart when you see I mean, I imagine at this point you just know them, but what's the thing about them that is obvious to you?
Well, right now, one of them is using braces and has short hair. That will be the fastest.
That's helpful. Do they have any like, are there any like, what do you see, though, as your as their mom? Is it their eyes? Where do you see it when you look at them? How do you know it's them?
Definitely, their eyes and their voice is different.
Their voice is different. Okay.
Like, if they call me, I know for sure who is it even if I don't see who's calling.
Mhmm. They look more like you or your husband?
Me. Yeah. They are totally my my dad Wow. That's so my brother.
That's so cool. Isn't that nice? How about your husband now? Does he have a lot of inner working knowledge about the diabetes?
Yes. Yeah. No. He's on top of it. He, when I was m I MDI, I I told him, like, you need to learn to put insulin.
So he was not as scared of the syringes and anything. He was I was like, okay. Do seven units, and I'll put it on my arm. And, yeah, I trained him. He's really good.
I actually I sent him a video of the glucagon, the Oximie.
Yeah.
Yeah. And he was like, oh, now I know how it is. And I was like, yeah. You need to know just in case. I have a couple on my counter.
Yeah.
Pay attention.
Pay attention. Yeah.
Did he ever talk to you about that incident when you were dating? Did it scare him? Make him think twice about dating someone with type one, anything like that?
Not at all. I actually told him. I was like, I can't believe you keep dating me. Like, he was like, no. I mean, I got scared for you.
But other than that, I was like, yeah. Whatever.
Didn't frighten him away.
He's not no. No. Not at all.
How about you? Did you have concerns? Like, did you think, oh, maybe I'm gonna be like, maybe that'll be the end of it for me here? Like, will he be embarrassed or worried or anything like that? Or did you have a relationship where that didn't come into your mind?
You know what? It didn't come to my mind.
Mhmm. How long had you been dating at that point?
Like, three months.
Are you serious? Well
Yeah.
Well, he likes you. That's for sure.
Definitely. Yeah. Yeah.
Is it a big Yeah.
I don't know about it.
Yeah. You mentioned that the kids did trial net more than once, it sounds like. Is that a big worry for you?
Yes. I think that's that's a that's the biggest my biggest worry. Like, now that they are 15 Mhmm. That kinda, like, decrease, it doesn't worry me that much anymore because, you know, they are becoming adults. So I know it will be easier if that happens than if they were a toddler.
So still, it will be super scary, whatever. I don't I you know, nobody wants their kids to be diagnosed with type one diabetes. But Right. I think it wouldn't be for me as bad as I thought or as vast as bad as it was when I was when they were younger.
You think that's because of technology or because you understand it?
Because I understand it. K. I mean, technology is great. I know it also helps a lot, but I know it is because I understand it better now.
Alright. Hold on a second. Sorry about that. I just something caught my eye. It it messed me up for a second.
The nurse who prayed for her48:37
Anything that we, haven't talked about that we should have? Like, I wanna know if I'm missing anything in your in your story. Because you told me before we started, like, you're like, I have a lot of good stories, but, like, maybe I'm not getting to them as much as you would want. So is there, like, one in your head you're like, people need to hear this one?
Well, I think the big one was when I came visit my my husband the first time.
That's a good one. Yeah.
Yeah. That was totally a good one. Yeah.
What about when you how often do you get back to Mexico?
Well, we are planning on going probably during the winter. We don't go very often because we are not, like, too close from where I used to live in Mexico. Not too far, but not too close. So it's not like a it's not the place where we will go driving because it will take at least two days.
Right. Right.
Uh-huh. And so if we are going, you know, flights are not cheap right now. So
No. I know. I saw I had to fly somewhere recently. I was like, what do they this is I mean, I guess it's the cost of gasoline, I imagine. But but it was crazy.
What what how do you make a plan to to travel for a long like, because you if you go, you're gonna stay for a while. So you bring a ton of supplies, but is there any other thoughts you have around traveling? Any concerns that you have and ways that you figured out around them? You
know, the good thing for me is, like, I know how pharmacy and doctors and everything works in Mexico, so it's not very scary. Like, I know I will be able to figure. Like, okay. I forgot my insulin. I don't have insulin anymore.
I will just walk to the closest pharmacy and get the insulin.
So you don't need a prescription. You can walk in and just get it?
Yes. Oh, well, at least that was five years ago,
but I was
just still living there.
Gotcha.
So yeah. I don't think that have changed.
Right.
And if that's the case, like I say, my uncle is a doctor, and he pretty knows, like, that I am diabetic. So he will make a prescription for me for sure. I wouldn't have a problem about it.
Yeah. I was gonna I was gonna say, do you have still have family there? How about brothers and sisters? Do you have brothers and sisters?
Yeah. I have one sister. She's three years older than me, and I have a a brother. He's six years older than me.
Back back when you were diagnosed, so they were they still in the house at that point, or were they not living at home?
Yeah. My sister was there. She was actually she was very scared because she say that when they took me to the hospital and then they send me back home, before I peed my pants, I was sleeping. And we used to have kinda, like, not like the bunker bed, but the one that you pull out of the it's like a twin bed and you pull out one
Yeah. Under And there's one underneath of it. There's a name for that that it's escaping me at the moment. But yeah.
Yeah. I don't remember the name. So I I used to be on that one, that the one that you pull out and she was higher. So she could see me and she say that my eyes were were rolled back. Like, my eyes were completely white.
Mhmm. Like, she could not see my pupils. And she was super scared because it was hard for me to breathe because of the my heart rate. So I was like and she say that for a moment, I stopped breathing.
Yeah.
Just went quiet. And she was like, Xenia. She starts shaking me. Mhmm.
She
was like, are you okay? And when I woke woke up, that I didn't woke up, she say that my eyes were, you know, black. Not black, white, like, roll it back.
Oh, oh, yeah.
Yeah. And I look at her and I say, yeah. I'm fine. And she freaked it out.
I would imagine. Yeah. She freaked out. She's like, great. This one's possessed.
We gotta go. Yeah. Yeah. Exactly. Yeah.
By the way, trund trundle bed. I can't believe that's such a simple word escaped me. But since my kids both had one, it made me feel silly. It's like I go when I couldn't think of trundle. So she thought you were possessed, obviously, then you went to the doctor, and, and they found out just diabetes.
All of them possessed by diabetes, really. If you think about it, it's in there now. You're not getting there. Right. Yeah.
Yeah. Yeah. I mean, I guess we could pray over you, but I don't think that's gonna work. So I think it's I think it's gonna stay.
Let me tell you Let me tell you. Oh, this is part of the story. When I so when I was in the hospital for three days when diagnosed, they the last day I was in a room. I was not in the ICU username. Right?
Intensive care. Mhmm. So I was out of the intensive care, and they sent me to a room. So I was by myself. My mom was not there.
I think she went home to get clothes and change and whatever. And so someone knocked on the door, and she was like, can I come in? And I was like, yeah. But I didn't know this lady. So she entered the room and she asked me, but she couldn't, like, really speak.
She was, like, holding her mouth, like like, trying to hold her cheek. And she say, are you seeing me? And I started freaking out, you know, like, what the heck? And I say, yeah. That that's me.
Who are you? And she say, I am the ER nurse. And when you got here two days ago, I really wanted you to make it, and I was praying for you.
Oh my gosh. Yeah. That's scary when you realize that somebody saw you and really thought that this girl's not gonna live.
And she told me that she had her wisdom tooth surgery that morning, and that's why she had, you know, like, PTO, and and and she she did it at the same hospital. So she went to to make sure that I was there.
Oh, that's nice.
So she found my room. She asked for my room. She went to my room, and she told me that she was praying for me, and I really appreciate that.
Well, that's lovely. Well, I guess you never know what's going on around you, really. That's nice.
Yeah. I regret I didn't ask her name. I I don't know.
Well, I think maybe you were a bit out of it sounds like you might have been a bit out of it still. So
Oh, yeah. No. For sure. Yeah. Yeah.
Everything was so weird. Actually, when I got out of, you know, the hospital and, you know, I started doing better and then they added the Humalog, Vispro, I remember that I was not feeling very well and my hands start shaking, and I didn't know what was that. I don't know. Like, I couldn't relate the symptom to something, like, associated. Yeah.
Yeah. And so I checked my blood sugar, and I was one zero four, 104. And I was like, okay. That's how it feels when you are having a low. I have not been in the hundreds for so long that now being in 104.
It's like if I'm having, like, low blood sugar symptoms.
Okay. Yeah. Does that that doesn't still happen anymore, though. Right?
No. No. Not at all.
No. Very nice.
No. But
Surgeries, pregnancy, and a 4.9 A1c55:48
Did you, I'm sorry. I, for the first time, looked at your notes. You had do you have some surgeries? Why did you wanna talk about those?
Oh, yeah. Well, surgeries, I had my wisdom took actually couple months after I was diagnosed. Mhmm. They have to do one side first and then the other one because they did one side and then I was, like, 120. And so the dentist was like, you know what?
I prefer you to come back so you don't, you know, be on a risk of a low because you cannot eat, obviously. So I was like, yeah. That's fine. So and then they scheduled the other side of my wisdom too
I see.
In another day. That was one. Then I had a c section when I had my boys. I recovery very fast. No problems about the the surgery.
Mhmm. Then I had my appendix. Also, no problems. I was still using not using any technology at that time. Okay?
Mhmm. Recently, I just did a hysterectomy, and the only thing I had to do was to put the activity mode on my Omnipod. Okay. And pretty much that was it. It worked perfect.
I had not problems with low or high blood sugar during the surgery.
Very nice.
It was easy peasy.
How about the I I I meant to ask you earlier, and then I got away from me. But pregnancy with the twins, like so is that a natural, or did you use IVF? And what was the pregnancy like with diabetes?
Yeah. No. It was natural. So my dad's mom, she had multiple pregnancies that were multiple. Mhmm.
She was the only child of, I don't know, if 16 siblings or 16 pregnancies. I obviously, I didn't know that runs in my family because my dad doesn't have siblings, and my mom doesn't have twin siblings in the family siblings in the family. So so I was like, yeah. I don't know what it is. And yeah.
No. But it was natural.
Yeah. Did you not get pregnant a second time because you thought I don't want four kids?
I did not. And then I started a couple of problems, like fibroids and stuff, and that's the reason why I did the hysterectomy.
But you know Yeah. My wife's going through that right now.
Yeah. It's not fun.
No. Are are are happy that you did the hysterectomy?
I am super happy. Best decision ever. I was having a mild anemia before because of those fibroids and
Mhmm.
And all, you know, the heavy heavy bleeding
Yeah. How about during the period. Was it painful too? Did you have pain?
Just a little bit, you know, the first couple of days, but not too bad.
Okay.
It was this was a laparoscopic robotic assisted.
Mhmm.
So
How long ago did you do this?
Not not very invasive. That was in January this year. Oh. So just a couple months ago.
Well, let me just, ask questions that are just for my wife and not for anybody else. How was the, recovery? Because they they make it sound like the recovery is pretty long.
Yes. So they usually give you six weeks. That's kinda like the Yeah. Like, the regular. I start feeling better after the second week.
Like, start feeling myself. Like, okay. I I'm I'm seeing you again. Obviously, the first week was horrible. Not horrible, like, bad bad, but you cannot do anything.
Yeah. Sleep, some pain medication, sleeping. Right?
Exactly.
Yeah.
So, yeah, after the second week, like I say, you start feeling yourself again. And then I went back to work, which I actually, I work remotely right now. I do go to work, like, to the office a couple of times during the month. But
Mhmm.
Like I say, it's just an office work, you know, like
Yeah.
Yeah. Sitting all the time. So the first days, I was actually using one of those seats for people with
Hemorrhoids. Hemorrhoids. Yeah.
I don't know what they have.
The the the doughnut. You use the doughnut?
The doughnut. Yes. Yes. It I use it, like, two days, and I was like, okay. I'm fine.
Kinda like I push myself to get used to, you know, be sitting for longer hours because at the beginning, they felt it kinda, like, felt like, I cannot be sitting, you know, like, not even an hour. So I was taking breaks.
Yeah.
Breaks. And, yeah, everything worked out. I Good. If you ask me, do I recommend if you're having serious problems with weighted, yeah, do it.
It was it was worth it.
I can tell you it was worth it. Yeah.
Well, that's good to know. Thank you. But going back to your pregnancy, like, were there adjustments made for your diabetes? Did your care change? I mean, I'm I'm trying to do the math.
Were you using NPH still during your pregnancy?
Yes. Yeah. Yeah. I was using NPH and Lispro, and, yeah, there were changes. I had to increase my NPH.
Mhmm. And I did not increase, I think, the the Lispro. I think it was only the NPH, like longer like, higher doses
Okay.
Of NPH. I actually they had to use steroids by the end of my pregnancy to develop the lungs of my babies. And I can tell you that it did not affect my blood sugar, which is weird because I know that some that's that's the name. Right? That's how they call it.
Steroids?
You have to use steroids. Yeah.
Yep. And and what were what were the problems the babies had?
No problems.
No problems. No problems.
But they Okay. They they tried to use that before the end of the pregnancy because they don't they didn't know if they, if they could be in Spanish, it's which means that they will be big babies.
Did you have what was your a one c like through the pregnancy? Do you know?
Oh, I hit the fours.
Oh, you were that no kidding.
I was, like, 4.9. Yeah.
Oh, so big big big babies because they were worried about you because there's two in there, not because of your diabetes.
Yes. I gotcha. So they were checking in every month or every, like, three weeks. They run the a one c's every three weeks just to make sure that I was doing fine. But the thing is that if you're running high, like, with high blood glucose during your pregnancy is when you have the risk of having a big baby, like, heavy Mhmm.
Baby. Because I don't know. And and and and don't trust me about this. There's some doctor here that could say how it really works. But so it's like the baby is trying to send insulin for your high blood sugar.
Okay. Okay.
So I don't know how that can affect the baby and make it big.
But that was one of the concerns. Okay.
That was one of the concerns, which, thankfully, that didn't happen.
Didn't have a very
good a one c's during the pregnancy. Yeah.
Did your insulin needs change very quickly after you delivered?
I don't remember.
You're like, that was a while ago.
I don't remember. Yeah. I I
don't remember.
But I I I do remember I had to adjust, but I don't remember how fast it happened. Like, if it was right away or or not.
So your memory of this is really just you kinda followed along with what the doctor said and and things worked out well?
Yes. Yeah.
Cornhusker family, and Panic Room1:04:04
Alright. That's nice. Are you still a are you a Cornhuskers fan? Do you still go to games, or was that a one time thing?
No. We are going to all the to every time we can, we go, and we watch them. Yes.
Nice. Nice.
It's a Cornhusker family.
I would imagine. And your kids do your kids play sports or anything like that?
They do. They do wrestling, football, and soccer.
Oh my gosh. So you're always somewhere on a court or in a on a field or something.
Yes. Yeah. Yeah.
Which do they like
tell you. Resin resin is the one that can affect my blood glucose the most.
Why? Because do you get upset or excited?
No. No. I I get excited. I get, like you know, every time they get on the mat, it's like, I'm like, gosh. I don't know what's gonna happen here.
I just don't wanna see, but I have to see.
You get nervous for them?
Yes. Do
you? Oh, that's nice. That's very nice. That they which one do you think they like the best of the sports?
Football.
Football? You don't do you mind them banging into other kids, or are you okay with that?
Oh, no. I'm okay. They've been doing that since long ago. Since they were born.
Yeah. I I
They tackle each other.
Oh, I was gonna say. Right? They're they're they're probably probably so interesting to raise twins. My neighbor had two sets of twins. And Oh my gosh.
Yeah. One was one set was boy and a girl. The other set was two girls. Okay. Yeah.
It's a lot because they all they all come due for college at the same time. You know?
Right. Yeah. That's that's the next the next journey here in a couple of years.
Yeah. Do you think they'll go?
Yeah. Yeah. We are planning on it.
Very nice. That's nice. Well, is there anything that I haven't asked you that I should have or anything that got missed?
I think we cover everything. Yeah.
Yeah? You feel good about this? Were you happy with how it went?
Yes. Awesome. Happy.
I'm glad.
Really, I wish I could say more about, you know, the teenage years. The, I say, if there's a new a new kiddo diagnosed, you know, when you're a teenager, you're gonna get there.
Yeah.
I wish I didn't worry as much as I did at that time. You know?
You were very worried as a child?
Yeah. Yeah. I used to cry of my when when I when I went to my nieces and nephews in Mexico, Pinata parties, I used to be like, I have You know? And and I was so worried about it.
But All worked out okay.
I was not. You know? Yeah. Yes.
Well, take care of yourself. Right? Keep up with trends. Do a good job, and go live your life. Right?
Exactly. Yeah. And they have it easier now with all the technology. So
Well, and that's you talking from experience. You you find it just easier to exist this way than it was previous.
Yes.
Yeah. Do you imagine there's even e like, aside of, like, you know, a cure, do you imagine that there's easier than this to be had, or is it hard for you to imagine anything being as good as what we have now?
Can you repeat that, Scott?
Do you think that technology will get better again, or do you think that it's about as good as it's gonna be for diabetes care?
Oh, no. I definitely think they will keep improving. Mhmm.
Yeah. Mhmm. I
I Every time they come up with something better, you know, so yeah. I mean
It's happening faster now.
Yeah. I mean, the idea will be like, hey. We don't need the technology anymore, you know, because they're secure.
Yeah. But until then
Yes. Yeah. And it is great that all the improvements, you know, being able to watch to use that a watch to look at your blood blood glucose is
Even that's amazing. Yeah. No. I agree with you. Okay.
Well, I appreciate you doing this.
That movie. Did you watch that movie where this little girl has a watch and she could see her her blood glucose on it.
No. I remember that movie. No. Is it recent?
No. It's a very old movie. I don't even remember who's in it and, like, in the name of it. I just remember that they kinda, like, they bought a house, and it had an elevator. And there were two people who was trying to get into the house.
And at the end, I do remember very
well Panic room.
She grabbed
Panic room with Jodie Foster?
Yeah. Yeah. Yeah. Yeah. And she grabbed a bunch of needles and start, like, put it on the this person trying to, you know, like, kill him or something.
Yeah. How did I remember that? That was awesome of me. From your by the way, from your description, no one should have been able to get that. I'm very proud of myself right now.
Description was like, you know, she had a watch with her blood sugar on it, and they people were trying to get in the house. And I'm like, oh, panic room with Jodie Foster. You know, I think the, the, the girl in that movie is the is the the vampire girl. Hold on a second. Panic room actress.
It's gonna tell me Jodi. But Kristen Stewart. I knew it. Look at me. I win again.
Yeah. Kristen Stewart was the little girl in that movie.
I never associate her with that movie.
Yeah.
I didn't know it was her.
2002. That's a long time ago. Wow. We're old. Jesus.
Yeah.
Yeah. I'm seeing a a How
old are you, Scott?
I'm 54, but I'm looking at a recent photo of Jodie Foster here in one of her in 2002, and I thought, uh-oh. My life's almost over. That's what I thought that's what I thought when I saw that. I remember her being a little girl in movies. This is a problem.
Anyway alright. I'm gonna let you go, and I I do really appreciate you doing this with me. Thank you. Can you hold on for just a second, though? Don't don't don't hang up.
Okay?
Yeah. Okay.
Today's show is sponsored by Tandem Diabetes Care, the Eversense three sixty five, and Touched by Type one, who you can learn more about on Facebook, Instagram, and at touchedbytype1.org. Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem MOBI system. I'd like to thank the Eversense three sixty five for sponsoring this episode of the juice box podcast. And remind you, if you want the only sensor that gets inserted once a year and not every fourteen days, you want the Eversense CGM.
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