Transcript
Speaker: Hey, before we get into today's episode, I wanted to take a moment to thank our gold sponsor, Omnipod. The Type 1 Club is all about sharing real stories, creating connections and helping families feel less alone as they navigate life with Type 1.
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Speaker: Welcome to the Type 1 Club. Hello and welcome to the Type 1 Club. am your host, Jacqui Kidman. I am a type 1 mum to my boy named Harvey, who was diagnosed in June 2022 with type 1 diabetes at the age of seven. So we are four years in to our diagnosis at the time of recording here.
Speaker: I welcome you all back to the podcast. And I have a guest today that I would love to welcome, who is Ronnie. She is a fellow type 1 mum. Hi, Ronnie. Welcome to the podcast. Thank you. Thank you for having me.
Speaker: super excited for you to share your story of your son's diagnosis. So let's dive straight into it. So would you like to share Mulai's diagnosis story? Yeah, for sure. So my son, Mulai, he's 12 years old at the moment, and he was diagnosed on the 31st of January this year, so 2026. So we are almost six months into our well New life. Yeah. Mulai is an ADHDer, which is autistic ADHD. And he's always been like a, quite a tall, lean kid. And we decided to put him on some ADHD medication, maybe.
Speaker: when he was about in year four, I think, which was really helpful for everything at school. But then, yeah we just found that he wasn't growing as much as he had done in previous years, which I guess can be a bit of ah a side effect of taking ADHD.
Speaker: medication. Yeah, because it affects your appetite. You might not want to, you don't feel like eating sometimes. Yeah. So he was on that for about two years. And then, yeah, we made the call to take him off that in December of 2025. Because yeah, he just he wasn't growing.
Speaker: We went, we had been to his pediatrician and his GP. And yeah, I guess they were monitoring it. But Yeah, he yeah was had nausea, other sort of symptoms as well going on. And there was lots of blood tests done and things like that. But unfortunately, no one thought to test his sugars or anything like that. And then over the Christmas holidays, the 25, 26 Christmas holidays, when he was off the medication, yeah, he became...
Speaker: quite ill and initially we thought that he was coming down with gastro or something like that and yeah he was unwell for a few days just really didn't have much energy and was just quite nauseous but then he he started vomiting and i think it was after about It was probably a good 15 hours of him just not being able to keep anything down, like even water.
Speaker: And yeah, we made the call to take him to the hospital. i took him to the hospital actually, and my husband stayed at home with our young, with our nine-year-old. And Yeah, by the time I got him, was only 15-minute ride to the the John Hunter near us. By the time I got him there, he was actually not really able to walk very well. And when we walked into the, got him into the emergency, like we weren't even triaged. The nurses behind the station there just glanced over and they all...
Speaker: came running out and he was just like, yeah, just rushed straight in. And I think in hindsight, now thinking about it they all knew what was going on just I think from the look of him.
Speaker: Yeah. So yeah, straight through to the emergency room. And then it wasn't long after that we were then getting rushed up to ICU. i think we were there in there for two and a half days in the ICU with, yeah, like a insulin infusion and,
Speaker: Yeah, all other stuff going on, which was a nightmare really. Wow. So did you notice once he was in ICU and getting insulin, how quickly did he improve?
Speaker: It was, i think probably over slowly over the next 24 hours, i would say there was an initial improvement when they first started giving him medication. But then I think he was just so exhausted that yeah.
Speaker: Do you know what the blood sugars were and his ketones? So his ketones were, I think from, oh, no, I don't quite remember. I know they were very high. i know the blood sugar just said high on the, when they did the finger prick, which I've heard is, means it's plus 40 plus or something. Title 1, yeah. Yeah, yes. And his ketones. Classified DKA.
Speaker: DKA, yeah. His ketones were like 5.5 something. Yes, like quite high. Nonny, had you ever heard of type 1 before? One of my cousin's daughters is a type 1 diabetic, but i it's she's not a close family member, so I'd heard that.
Speaker: I knew that's what her daughter had, but I didn't know anything about it other than its name. Yeah. Yes. Yeah. And that's the scary part, isn't it, of that that diagnosis of you're at home with a child that's not able to keep things down. You know, it's that call of do I go to the hospital or not? That's right.
Speaker: Yes. Like scary. Yeah. area It's really scary. That can change when you said in that 15 minutes. That's right. And I think as well, when you have every eighty ADHD kid's different, but for Mullah especially, like his emotional responses to things, I guess they create a bit of an intense baseline in general. And so that also makes it quite hard to know how serious is this? Is is this a the emotional response or
Speaker: taking over from his anxiety or is this really serious? Because we've had a lot of situations with him where it might be something very minor.
Speaker: But for him, it's this it's a huge thing. And so it's really hard to decide. Yeah. And in hindsight, yeah, like I wish I had gone to the hospital earlier. Like I know that wouldn't change the outcome, but it just, yeah, that did make it really hard. When you say that, do you mean like earlier before the vomiting started or do you mean like weeks earlier?
Speaker: Yes, months earlier, probably, because I guess as well, he has anxiety and there's complaining of nausea that can be like quite an anxious reaction as well, like to have a sore belly.
Speaker: And yeah, we'd had multiple doctor visits checking out. get reflux and that sort of thing. And everything's just pointed to anxiety, which when they looked at his diagnoses of autism and ADHD, that is reflective of that. They just put it down to that and just said it's anxiety. so yeah, yeah, it had masked the symptoms.
Speaker: So do you think that taking him off that medication... Like, do you, so you feel, because you were saying months before, so do you feel that the medication was masking the symptoms of type one? Yes, I do. He's also not hungry. Like he's not eating as much. So he's probably keeping his sugars a little bit low anyway.
Speaker: if he's that's right yeah so then so then by taking off that medication then it started to you've been able to see a little bit more but then you're also not sure if it's because he's not on the medication that now you're seeing a little bit more of the other adhd and other stuff that's right up yeah oh wow yeah okay i'm starting to build a piece now so yes yeah yes that's tricky and it's one of those things isn't it i always whenever i hear people's diagnosis stories It brings me back to when Harvey was diagnosed and Harvey was diagnosed very early and wasn't in DKA.
Speaker: I think his sugars were maybe 22 when we tested them at the GP and he had no ketones. But I can still remember those little things that I think were maybe 12 months, a couple of years before were little signs. you're like maybe that was but of course you would never go you know like but be let's test or and I've even heard that even if they do test the sugars it gets a diagnosis that early no diagnosis or even late like I've heard people will could be in that two months before you could have tested the sugars and then the GP could have said no it's fine it's not that
Speaker: might have still read a little bit higher than out of range, but they say, no, it's not type one and send you off. But there is actually an interview I've done with a guy called Aaron and he's exactly the same is that he was actually taking ADHD medication. And he did feel like it masked some of that. It's interesting, isn't it? It Yes. Yes. And there's also it's quite a large, I've found out after this as well, that that if you're ADHD or ADHD, that you have a 40% higher chance of developing type 1 Yeah.
Speaker: 40% higher chance if you are and an ADHD or autistic or an ADHD. That's, I think that's crazy. That's such a high percentage and something and that I guess I wasn't in this space before. So I wasn't aware of things like this. But now that I know and I have read a bit about it, yeah, ah it's such a massive overlap. So there must be a lot of people, yeah, in the same boat. Excuse my ignorance, but so ADHD, it's not like, this so we've got, you've got type one classified as an autoimmune disease, but ADHD isn't.
Speaker: No. Yes, that's right. So it's more of a, like a ah neurodevelopmental condition. Yeah. Do you think there's a link with the medication that can again trigger something?
Speaker: action there Yeah. was just thinking, two years before his diagnosis, he started medication. And then they can say like say little virus or something triggers it and it can present up to two years later.
Speaker: Something's triggered it. Yes. Although as well, have also I've also read that a third of adults that have type 1 diabetes, when they've been screened for ADHD symptoms, that they are but they're undiagnosed.
Speaker: They present as ADHDers. So I guess all those, they would never have been on ADHD medication because they... It's just interesting, isn't it? Yes. Very interesting statistic.
Speaker: Yes. Because we say autoimmune diseases love to call their that call their all their friends to join in. Quite often there'll be the thyroid stuff or celiacs or that sort of stuff. Yeah, linking like with that statistic around the ADHD. One of those things that I guess as a pediatrician, I would be thinking that would be.
Speaker: yes in their for Yes, in their mind that, yeah, these are conditions that, yeah, that these kids might end up with. I think celiacs is another, like that's a really common, I hate this word, they say comorbidity, but.
Speaker: Oh, yes. Yeah, yeah, yeah. Just say co-occurrence or I don't know. say Yeah, come up with a better word because, yeah, that's awful. But, yeah, yeah that I know that, yes, celiacs and being neurodivergent go hands in hands as well. So, yeah. Ah, okay. I didn't know that too. um yeah I know celiac and it's always tested, the celiac and with Harvey anyway, that's tested. These bodies are tested.
Speaker: because he's type 1. And I have Hashimoto's, which is an autoimmune thyroid disease. and i'm And I'm always tested for celiac because I present with one of the genes or something. So I've actually got to do a blood test today.
Speaker: And I've looked at it, did say celiac again is on there. So that's always fun. Yeah. So I do know that there are parents that are celiac and then their children become type 1. Not necessarily whether that's another link, but I guess it's an autoimmune...
Speaker: disease yes we're all clussed together a bit very interesting very interesting he gets the diagnosis sorry we've i do i find those topics very interesting and sometimes it's not that i necessarily have or want or the answers but it's definitely a good topic to explore because sometimes you know let's say for example that pediatrician that's prescribing And then you were saying we're going to take him off because he's losing weight. And i don't know, maybe it is just a screen that that is encouraged to be done through those specialists. I don't know. I'm just thinking out loud of how would you, in order to prevent more kids not getting type 1, but having the experience where you've had where you've had a child that is severely unwell and has got had to go into ICU because they are DKA, you know, yeah that's that's a really traumatic experience.
Speaker: experience all of you and if that can be prevented yes that that would just be yeah like whether you could get told because there is the screen test that you can do which is the finger prick and that can tell you whether your child is going to likely to be diagnosed within the first couple of years of within that two years or something like that so we don't know i've got james who's harvey's brother we've done that fingerprint test Oh, yes. Yes. You've got the antibodies. Have you done that for your other child? We have, yes. Which I just found out you need to redo them every couple of years until they get to a certain age. So that's going to be fun as well. Yeah, you know. So it's not like you get it for life, like you get that it's okay. yeah It's every couple of years you have to do it. Whereas, yeah, I think James was 13 when we did his. so
Speaker: I think the older they get, the less that it the time stretches out. So he doesn't need to get one done for I think it was five years. But I think if they're below like 12, it's every two years. It's okay. Yeah. do yeah But, yeah, there's depth that would be definitely something I think for people...
Speaker: maybe if anyone's listening to this that has a child that's not type 1 but has a child that is ADHD, that maybe that's something to think about is getting a screen. Yeah, absolutely.
Speaker: Yes. Yeah. I think, yeah, I would definitely, yeah, urge people to say. Yeah, it is tricky. It's tricky to reach those people that aren't aware of it because unless you've got a type 1 diagnosis, you don't really want to know about type 1. to be honest, because it's not something that you want to have to know you don't have to. So you're six months into this new world of managing blood sugars and all that sort of stuff.
Speaker: How's it going? Yes, absolutely. I think we are finding our feet a little bit more now. as ah a family of ADHD is it's a bit of a comedy of errors. Just time blindness and inattention, poor organisation, all the things that go along with ADHD have definitely made it challenging.
Speaker: He started Year 7 this year, so that's been a really positive experience for him. His classmates are all really, really positive and they hear his alarm go off. They'll all help him and stuff. If it's teacher that doesn't know him, they'll say, oh, that's all right, miss. Small eyes low. That sort of thing. So that's really good. Living with type 1 diabetes can feel overwhelming, but you don't have to do it alone. At the type 1 hub in Geelong, you'll find connection, support and real people who truly get it.
Speaker: From families newly diagnosed to seasoned T1D warriors, the hub is a place to learn, share and belong. You can also shop a wide range of diabetes products and supplies, all in one convenient place.
Speaker: Visit us at 251 Moorable Street, Geelong. He is going to start a medical trial in about a month's time with an insulin pump and a new CGM that is going to be coming out. So the pump is a pump that's already been around for a while, but it's to trial the pump with this new CGM.
Speaker: And so that's how we've managed to go down the pump pump road. We're trying to access it, which... Yeah, it takes a a long time, unfortunately. So, yeah, this has fast-tracked that a bit, which I think is going to be really helpful for us.
Speaker: Yeah, because those, like you were saying, with time management and remembering to do things and all that sort of stuff, like when you're on the pants, it's a little bit quite easy to go, oh yeah, did you dose, didn't you dose? get Yes, yes.
Speaker: to do things. Absolutely. It's so true. Or even doing counting carbs for dinner and something or something and then going, oh, hang on, we just got back from soccer training. I was meant to underdose that.
Speaker: Or yeah, just things like that as well. Yeah, the planning, the executive function component of it is has definitely been challenging. Yes, yes. Which it's just like I ah often say is it's like learning another language and then trying to implement it. I think regardless of when you say like the audio HD stuff, those early days, i remember just it was tough. It was really tough because you felt like you have this immense responsibility to get it right.
Speaker: And if you get it wrong, you feel like I see people do this all the time and why can't we get it right? and um Yeah. But... They've actually gone through this too. Yes. You know, it's on social media. All you see sometimes is the highlights reel.
Speaker: Like we've all got to go through those trial and errors in order to completely to to be able to master soing Absolutely. i can Yes. I can personally say like Harvey's on a pump now. He's been on a pump for over 12 months on the Omnipod 5. And he, that's, initially I was very hesitant because I was, that's another thing. We just, I feel like we've just mastered the pen, even though really hadn't. But with your working out your car ratio and that sort of stuff. And you can jump.
Speaker: pump but then now you feel like you've mastered the pump to a degree and even then I don't there's not necessarily there's still those times and I'm like uh I've we've counted too many carbs and he doesn't eat it as well oh yes yes that is challenging yes yes have you gone back on the ADHD medications Not yet.
Speaker: It is something that we are wanting to do and Moolai's wanting to do that as well. He's finding it quite difficult at school at the moment. I suppose it's not just the concentration part of it. I think it's also socially because guess to just to slow down and to make connections with people, sometimes as an ADHDer that can be tricky.
Speaker: Yeah, so, yeah, we're hoping... hoping sometime this year to do that. Just not sure what it's going to look like. Like you're saying, if you don't want a dose and then not eat something, you're taking a medication that's going to take your appetite away.
Speaker: That's really tricky. And yeah, if they don't take their insulin, they're not going to grow as s well. Yeah. yeah So it's it's hard to know, isn't it? That was it the ADHD medication that was causing the non-growth or was it also that he was going through a bit of a change in the type one stuff so that was so tricky it really is i think when I think about in hindsight I feel like there was a time when his growing really did slow down and i think that was the type one just from
Speaker: Like things like but but him being a bit sad one day sort of thing when we were out and all like let's cheer him up and here, i'll let's buy some donuts or something like that, something that's like full of sugar and then we've given him that and then he's felt lousy afterwards and they're not wanted to, he's like, I hate donuts, that sort of thing. Whereas, oh, but you loved donuts and that sort of thing. And not wanting to eat cake. Because he was so high. Because he was so high. Obviously it's like his sugars and he felt. Yes. yeah
Speaker: Yeah. Yeah. yeah but a few of those moments actually Yeah. You look back on and you're like, oh yeah. Like before he was diagnosed, maybe like even 12 years. six to 12 months, there was a few things where we've been somewhere and he's maybe overdone it with the party food or something like that. And and he felt really sick that he was like, like that he felt like was going to throw up. And think I wonder whether that was because his sugars were so high.
Speaker: Yes. That, yeah, it's just interesting of, you'll never know. We'll never know. No. It does sound like he's settled into year seven. That must've been quite tough.
Speaker: being diagnosed and then starting year seven at a new school yes as well. How did you go communicating that with the school and all that sort of stuff? I guess it was a bit tricky at first. I think the the day, I think school started on, it must have been the second, the first or the second of February school started. And so we went into hospital. He wasn't there. And so I think with everything that happened, i just totally forgot the school called me ask where he was. and
Speaker: went down the road that way sort of thing. But I guess they were so supportive and they had two they have two kids there in older years, two boys who were type 1 diabetics at the school. And so they were very, ah they're very aware of how it all works. Actually, one of the ladies in the office, I didn't really understand what she was talking about. Now I know, like she'd say, oh, you know, about pre-bolusing. And I just thought, oh, i even know that is. An acronym for Stabula. What? What's that mean? i don't know. yes
Speaker: Yeah, so they've been great and, yeah, it made him feel really safe, I think, as well. Yeah, it was really scary, though, yeah. Does he go to, does he inject in the classroom or what does he, does he leave to go and inject?
Speaker: He usually goes, there's like a little room behind the office. It's not like the sickbay, but it's just like a little room they've got. And he prefers to go there. he doesn't, he I think in that phase, he doesn't like doing it in front of people, which I'm hoping he will...
Speaker: become more confident with because i don't want him to feel shame over it or I think he's slowly getting there but yeah he'll go there and inject but at school he doesn't wait to eat he'll just go there maybe five minutes before the bell he'll inject and then he'll just go straight out and eat with his friends rather than leave early and yeah.
Speaker: Yeah. Yeah. Yeah. You just got to work it in with what's it's a, it's trying to get that balance, isn't it? Of that you don't want to, he doesn't want to seem too different by going 15 minutes earlier or just making a big deal of any of that. So you just got to do what, you know, that he's got insulin on board.
Speaker: Yeah. What can you do? just got to, at least he's injecting. That's right. Yes. That will then change when he goes on a pump too, because he should just be able to do it in class.
Speaker: Yes. Yes. We're to learn all, yeah, all of that is on its way. So that's going yeah, that's going to be fun learning all that. Yep. It'll, I do, I hope that it, the tech supports him and you guys when you do make that sort of adjustment, but it is, it's learning something completely new. so it's,
Speaker: it takes yeah again it takes another time it took us nearly three years to get on to changing over to from pens to then to a pump so at the time but yes didn't change and but i'm sure that it will be as it'll be supportive for you guys um yeah so i i've found this conversation very interesting ronnie so i really do appreciate you that mullise diagnosis and the all the ADHD, 40 HD sort of stuff. I'm aware of some of it, but obviously more that we can learn and know, the more better off at our kids will be well. So absolutely yeah, I always like to wrap up these podcasts by asking the last question, which is what is Moolah's go-to hypo treatment?
Speaker: ah but Yes, I knew that was coming, actually. I think it depends what time it is. If it's nighttime, we try and do the glucose tablets, like the sherbet-y sort of ones that come in those little tubes, just because they're the least disruptive and...
Speaker: They're actually pretty yummy. But if it's daytime, then he'll usually grab ah a popper or a glass of juice or, yeah, we pre-pack little party mixes and stuff. So, oh yeah yeah, he'll just grab one of those out of the cupboard or, yeah. That's good. Yeah. So it's just like you pre-packed that the amount that he needs. Yeah. Yeah. Yeah. yeah yeah yeah yeah That's very good. Awesome.
Speaker: Thank you so much for reaching out and agreeing to be on the podcast. I really hope that everybody that listened to this today got a lot of value and insight out of it. And I look forward to bringing you another episode of the Type 1 Club very soon. Take care, everybody. Thank you.
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