#1926 Hero of the Day -Part 1
Hero of the Day (Part 1)
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 Felix 3:02
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 something 3:26
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.
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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: diabetes 13:27
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 DKA 16:01
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 numbers 20:14
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 insulin 23:41
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 out 31:15
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 antibody 35:37
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 diagnosis 43:09
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 way 46:47
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 tears 52:13
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 followed 54:22
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 MODY 57:19
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 continued 1:03:12
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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- 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.
