#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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The same place that we get our diabetes supplies. Usmed.com/juicebox. Links in the show notes. Links at juiceboxpodcast.com. Click on those links, baby.
Support the podcast. The juice box podcast has been in production since January 2015. And in that time, I have amassed just a fantastic catalog of information for you. Defining diabetes, bold beginnings, the diabetes pro tip series, small sips, fat and protein, algorithm pumping, mental wellness, ask Scott and Jenny. The diabetes variables, defining thyroid, after dark.
There's even an Omnipod five pro tip series. Come on. Pregnancy, how we eat, grand rounds, cold win, GLP meds. What else do you want from me? And if you'd like to get going now with this podcast, boy, oh, boy, you have not picked a better time.
You haven't because we have a diabetes myth series and there's even a type two pro tip series. All of this all of this is free. Free. That's right, Scott. Free at juiceboxpodcast.com.
Go up to the menu, click on a series. They're all right there. Or you, of course, could use your Apple podcast app, Spotify, or wherever you get audio. Every episode is listed on the website along with its episode number so you can search for it in one of those apps. I've done everything I can do, baby.
There's transcripts. You wanna read the podcast? Go read it. What do I care? I'm not your mother.
You do whatever you want. Juiceboxpodcast.com, Apple podcast, Spotify, wherever you get your audio, baby. Go get your audio. Why do I say baby so much? I'm just realizing now this all seems like it's something you can't believe, but I swear to you, it's a great podcast.
You'll really like it. If you want, go to juiceboxpodcast.com/reviews and read what other people have written.
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