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Episode 27: Navigating Two Diagnoses: Megan’s Journey with Beau’s Type 1 Diabetes and Epilepsy
71 Plays6 days ago
In this heartfelt episode of the Type 1 Club Podcast, host Jacqui Kidman sits down with Megan, a fellow Type 1 Mum, to share the powerful story of her son Beau, who was diagnosed with Type 1 Diabetes just after his first birthday — while the family was already navigating his epilepsy diagnosis.
Megan opens up about the early warning signs that were missed, the instinct that something wasn’t right and the overwhelming emotions of managing two complex conditions at once. She also reflects on what it’s been like supporting Beau through early childhood with diabetes, building confidence in decision-making and finding the support she needed as a Mum.
This episode is an honest look at mother’s intuition, advocacy, and the resilience it takes to keep showing up, day after day.
💡 In This Episode You’ll Hear:
- How Beau’s epilepsy diagnosis unfolded — and how it masked early signs of diabetes
- The missed clues and hospital visits leading up to Beau’s Type 1 diagnosis at age 1
- The shock of managing two life-altering conditions in a baby
- The emotional toll and how Megan found strength and support
- Navigating early childhood diabetes — pumps, CGMs, daycare, and fussy eating
- What it’s like when dad also lives with Type 1 — and how the family learned together
- How childcare managed Beau’s care (and the gaps in training and support)
- Megan’s reflections on self-care, therapy and finding her community
Connect further with Megan and Beau:
Instagram: @beau.t1d
Further Resources:
Type 1 Foundation Website
Follow us on Instagram
Join the Facebook Group
If you'd like to share your story with our podcast listeners, please email: podcast@type1foundation.com.au
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Transcript
Introduction and Disclaimer
00:00:00
Speaker
The content provided in this podcast is for informational purposes only and is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.
00:00:14
Speaker
Reliance on any information provided by this podcast is solely at your own risk.
Podcast Mission and Community Building
00:00:23
Speaker
Welcome to the Type 1 Club. Whether you're a parent grappling with a new diagnosis, a caregiver seeking guidance, or simply someone wanting to learn more about type 1 diabetes, this podcast is for you.
00:00:36
Speaker
Together, let's dispel myths, break down barriers, and build a community of understanding and resilience. Join us as we embark on this journey together, because with knowledge, compassion, and support, no one should ever feel alone in managing type 1 diabetes.
00:00:54
Speaker
Welcome to the Type 1 Club. Hey everyone and welcome to the Type 1 Club.
Meet the Host and Personal Story
00:01:01
Speaker
I'm your host, Jackie Kidman. I am a Type 1 mum to Harvey who is 10 years old but was diagnosed in June 2022.
Megan's Story: Beau's Diagnosis Journey
00:01:12
Speaker
Today I have a guest.
00:01:13
Speaker
She's another Type 1 mum and she's going to share her son's diagnosis story. So I'd really love to welcome Megan. Yes, I've got Beau who was diagnosed in May 2022, just before Harvey.
00:01:27
Speaker
yeah and then just after his first birthday, so also just after a birthday, But yeah, so for Beau, we sort of had, we were in and out of hospital anyway. So yeah, he's got um epilepsy as well.
00:01:43
Speaker
But yeah, so we started it was around, was on Anzac Day actually. So we, he had an event at home and then we ended up calling an ambulance and the paramedics actually tested his sugar when they came And his sugar was around 11 or so. So we had no signs of diabetes before that. had no no inkling.
00:02:01
Speaker
So they tested his sugar and it was a bit elevated. But they sort of put it down. They said that sometimes when they have seizures, it can elevate the blood sugar. So so when did you have the epileptic?
00:02:12
Speaker
Like when did when did you find out that he had epilepsy?
Early Signs and Medical Dismissal
00:02:15
Speaker
Yeah. Yeah, it was back in like January, actually. So I started noticing he was sort of, it was only very brief. He would sort of like go I don't know, he just sort of stopped responding a little bit and go, I felt like he was going a little bit blue, but I was the only one that ever saw it And I'd say to my husband, he was like, oh no, he's probably fine. Like, you know, so ah we'd gone to the GP. We actually had gone to a pediatrician.
00:02:37
Speaker
They put it down to, oh, he's probably just tired. It's probably just a post COVID symptom, really sort of like dismissed it. And then i was kind of like oh, okay, he stopped sort of doing it. So we sort of forgot about it. And then it wasn't until that Anzac day when when he like, yeah, so we're cooking breakfast. And then i turned around, he was in the high chair and he was like flopped over. He was unresponsive. I thought he was choking. So I started doing back blows. But yeah, we called an ambulance and he came to.
00:03:03
Speaker
Yeah, so we went by ambulance, got to the hospital, and then that was when he was in hospital. He had another episode, and then that's when they said that like he's having seizures. So that was sort of the first one that Damien saw. It was the first sort of one that had lasted a bit longer as well. So yeah, so it was kind of that. So we sort of I felt like I knew something was going on got dismissed, ended up being that.
00:03:23
Speaker
You knew something that was going on in terms of that there was epilepsy or there was type 1? I just know the epilepsy. I just knew that, yeah, he was like, I just sort of was like, I knew that something wasn't normal and then, yeah, it wasn't.
00:03:36
Speaker
So the paramedics came, the test of the sugar, that was...
Confirmed Diagnosis and Family Impact
00:03:39
Speaker
11. was elevated. they said it's probably from the seizure. i was like, okay. And then when we got to the hospital, they did a gas capillary test, I think it's So it's where they get blood from the heel.
00:03:51
Speaker
But on that as well, the glucose came back elevated. and I said, i was like quitting because Damien's actually type one diabetic as well. That's his dad. Yeah. So his dad's type one.
00:04:02
Speaker
Right. Yeah. so I said, could he have diabetes? And they're like, no, definitely not. Hasn't got diabetes. And I was like, okay. Well, I don't know. pretty. Yep. So I think that came back.
00:04:13
Speaker
I think maybe when the ambulance came back, was a bit higher and it had dropped. So I think they said, oh, it was still elevated. I think it was, that was around 11 in the hospital. So they were like, it was still elevated, but they're like, no, it's coming down. Like, nope.
00:04:25
Speaker
Definitely not diabetes. And I was like, okay, didn't know any better. um And then i think we ended up going to PTH as well. So we were at the Pev Children's Hospital. We were there under epilepsy. Nothing else was mentioned about the glucose. It just sort of, that was that. So we actually started on an epilepsy medication and they kind of, yeah, that that was that. We got referred to neurology, got discharged. And then...
00:04:47
Speaker
We actually ended up back in hospital. but So this it was like this start of the epilepsy journey. journey So it was just sort of after that, it was like every week we were in hospital pretty much. So i think it was about a week later, he had another seizure. were back at the hospital.
00:05:00
Speaker
They did blood tests and stuff again, but no i don't know, like no one ever, I guess, looked back at that old test either. So he was in hospital. was having ice cream. He was having all this stuff. And then I think it was this time. So we got discharged again.
00:05:13
Speaker
They just upped the seizure medication, got discharged. And then I feel like it was around this time that I started to notice he was drinking more. But then... you know, I put it back in my head, like he was only little, it was heating up a little bit. I thought, oh, maybe he's having more salty food.
00:05:28
Speaker
Maybe it's the weather. Maybe it's the medication, you know? Yeah. Like I definitely knew he was drinking. Like, I think it was just one day it occurred to me where I was like, huh, I feel like I'm filling up his sippy cup a lot more.
00:05:39
Speaker
And then, you know, I felt before that I never really noticed myself because I feel like at that age, I don't drink a lot of water because, you know, have milk or breast milk or whatever. So I hadn't noticed myself filling it up. And then I just trigger i like flipped in my head and I was like, feel like I'm filling up his bottle a lot more than I usually am.
00:05:56
Speaker
And I remember even saying to Damien, like, oh, you know, like maybe we should just prick his finger. Like, I don't know. Like, I feel like he's drinking a lot of water. And then, you know, it was just something that was like, oh, yeah, maybe we should do that. And then... just life got busy we never did it and I think for me too I had no idea that babies could get diabetes even though Damien was diabetic or is diabetic I should say and we've been together 10 years at that point I felt like I didn't actually know that much about it so Damien sort of just managed it himself like I knew his he got diagnosed at 17 so he had the usual like he lost a lot of weight he was going to the toilet all the time he was tired he was drinking so much water
00:06:32
Speaker
went to the GP, they said go to the hospital and just sort of had like that diagnosis. And that's sort of what I knew about it. Damien did his needles and all that. But I just, for some reason, I thought it was a disease that you only sort of got between the ages of like 10 and like 16. I just didn't know. I didn't know adults could get it. I didn't know babies. I really felt like I didn't know much about it.
00:06:51
Speaker
So I think I sort of thought, and i think too, I didn't realize how emergency it was as well. Like, oh my God, we need prick his finger now. It was sort of just like, oh, we should probably do that. But then i also had the doctor in my head being like, nope, not diabetes. So I was like, I'm probably just overthinking it.
00:07:06
Speaker
Just really put it down to a bunch of different things. It's interesting, isn't it? Because you've got... and on one sort of side you've got the doctors saying no no you're kind of over it like they're kind of giving you if they're not actually saying it but they're kind of implying that you you know you're a little bit of an overbearing mother yeah you know you just you know but but then it's also you've got this history are they not taking that into consideration that's for me that's like I find that quite amazing because yeah we said to them to ask oh like dad's diabetic you know and then yeah they're just like no no way definitely not and was like okay like
00:07:40
Speaker
ah Yeah, I was like, whatever. Like, didn't think about it. Yeah, then it ended up being that weekend. He had another seizure, went back to the hospital, and then they did the gas capillary test again. So they didn't do a fingerprint, it was the heel one.
00:07:52
Speaker
And then he sugars came back at, like, 29. And then they were like, oh, we think he's got type 1 diabetes. And I was like, oh like like what you know i was oh, my God, like this whole time. and then so how much was the timeframe for that? It was about three weeks, I think. So we were at Armidale Hospital, so that's our local hospital.
00:08:12
Speaker
So they didn't give him any insulin or anything there. They just, I think they just did. They confirmed it with a finger prick. And then we got, cause we were also having the seizures as well. So they were more treating that I feel at Armidale to sort of get him stable there. And then we got transferred to PCH and they sort of said like, you'll be met met by the endocrine team and everything.
00:08:32
Speaker
But yeah, we got to PCH, we got met by the endocrine team. and then, yeah, they were like, yep, he's got diabetes. I think his ketones, though, we were very lucky. His ketones were only at 0.9. So i don't know. I don't know this admission didn't happen, how long it would have taken me to really notice something or how sick he would have got. like So we're very lucky there that he was still quite early.
00:08:53
Speaker
like We didn't go to ICU. We just sort of went up onto the floor. like It was very early like diagnosis. But yeah, so they sort of like, I think the nurses came in and they gave him insulin. For me, it just really felt, I did didn't know how to feel. I feel like I just, I didn't know.
00:09:09
Speaker
like, yeah, I still feel now. I feel like, I think for us it was like the epilepsy was really the main, I just, I don't know. I think I was like, okay, this is just, I was just, yeah.
00:09:20
Speaker
Do you think because the epilepsy is such a reaction, like it's actually like a fit, you know, like, and you can visually see it, whereas type one is almost like this invisible, what they call it, the invisible disease.
00:09:32
Speaker
that you kind of think, oh, well, like, epilepsy is probably worse than... They both have such different challenges. Like, now he's epilepsy. He's been seizure-free now for over a year. So now it's, like, diabetes in our face, whereas before that it was sort of, like, the diabetes was to the side. It was, like, that. Like, we were just, like, oh, my God, we need to get this under control. So it's sort of they sort of go in, coincide with each other a little bit. They both have different sort of, like,
00:09:55
Speaker
dangers, I guess, or that kind of thing. Yeah. Yeah. Absolutely. Yeah. Yeah. Yeah. I was just thinking like, was it more that you were more concerned because you're visually seeing like, you know, like him fit and. I think as well. Yeah. Like I, I kind of, cause remember saying to the endocrine team being like, is this the cause of the seizures? I was kind of like, oh, thank God we've got this diagnosis because that's going to stop this. Like I i thought I was kind of almost, I thought we had an answer because at that time we still didn't have answers of why seizures were happening. Like we were just in the dark. So I kind of was like, oh, but yes, like an answer to this. And then they were like, no, we don't think it's related. And I was like,
00:10:30
Speaker
oh So is epilepsy like considered like an autoimmune disease? I don't really know. I think it's like there's actually so many different types of epilepsy. I knew nothing about epilepsy. I had no – we have no family history of I knew nothing about it. So there's actually so many different triggers. There's some unknown cause. So with Beau, we don't actually know – why it happened. We don't know what causes it. We don't know his triggers. Like we don't know anything. He's had like, he's had an MRI. He's had two EEGs. We've had like an epilepsy gene panel and nothing's ever come back to sort of why it happened. So yeah, there's some autoimmune types of epilepsy. There's, um,
00:11:09
Speaker
genetic like gene panel like genes like associated with a yeah they say that most people with epilepsy will never find ah cause I never find a reason yeah so what and then some like head trauma so they've had like damage to the brain or something but wow so he takes medication daily epileptic yeah yeah so he's so yeah we sort of went through the hospital and we'll on tried lots of different medications and finally we got one that worked with him and then that's just like it stopped them so we had to sort of wait until we saw neuro so you know in hospital all the time but we kept just seeing the on-call neurologist so it wasn't till we finally got an appointment where they're like this isn't working let's take away these medications put them on this one and then yeah that
00:11:50
Speaker
stopped it so thank god for that appointment but yeah so he takes yeah medication morning and night which is like a tablet or how how is that a liquid yeah so he used to be on a tablet and a liquid so we would dissolve the tablet in the liquid but now he's just on the one medication so that's just a liquid morning and night so yeah and he's pretty good with that thank god So he's now four.
00:12:13
Speaker
so he's just He's about almost three and a half. Yeah. So you're basically going through an epileptic diagnosis at the same time as a type one. Yeah. So so yes I was hoping that that was going to be the answer. And then, yeah, they kind of like,
00:12:26
Speaker
no, it's not. But then I think I was still sort of holding on hope that it was. um But yeah, so I think at the time, I think Damien took it really hard because he thought it was his fault. He was like, it's because of me. And I was like, no, it's not because I've actually, my pop had type one diabetes as well. So it's really interesting because no one else in my family has got it except for my pop. Whereas Damien sort of like his pops got it, his uncle's got it, he's got it.
00:12:50
Speaker
And now our son's got it so it's sort of and then I've had the type 1 screen like I was negative and stuff but yeah so Damien really took it to heart that he thought it was sort of his fault I was like no it could come from my family too or you know so he was sort of whereas I think I i feel like I was just a bit numb to it all I'd sort of just didn't I really feel like I just didn't know what to think I feel like I was very stoic and I was just like because I think she was like oh you know the endocrine I was like oh this is what like did you expect this or how are you going I was just like I don't know.
00:13:20
Speaker
I don't know how to feel. I just, I think I was very like, just like fine. Everything's fine. Because it's one of those things, isn't it? It's sort of like I've got Hashimoto's when got an autoimmune disease. So of course I think that it's me. I've got that guilt around, but, but I've never actually, we never really checked anything with my husband's side of, you know, like, but, um, and then, you know, you instantly think, what have I done?
00:13:42
Speaker
You know, like I can get that, but, um, But then it's also like I'm like, oh but I wouldn't have changed it I wouldn't have not had him. And I think I'm very much like the strong one too sort of in that terms. I'm like, no, like it's fine. Like it's, you know, it is what it is. He is who he is. Like everything is fine. doesn't no one's fault. Let's just like let's learn. Let's do this kind of thing. Let's learn about it. And, yeah, so. Yeah. So so you having to learn Bo's like epi epilepsy and the type one, what,
00:14:12
Speaker
do you Well, now that the epilepsy is kind of you feel like now that's been under control for 12 months, which is which is so like how amazing. Is the type one harder?
00:14:23
Speaker
Yeah. Oh, it's, it's so hard. Again, it's so hard as well. It's really hard because it's like, as well, it's, I always say when people get diagnosed, they say, does it get easier? I feel like it doesn't get easier, but you just get more confident in the the decisions you make. And I feel like every age, like, cause I felt even with Damien, he got diagnosed 17. He had those troubles of like, now he was out of the kids service. He was in the adult service and now he's gone his whole life.
00:14:44
Speaker
And he was very like, I'm not doing it. Like, no like he was but like, when Bo got diagnosed, it was like almost Damien had the education for the first time because he just was like, he didn't have a CGM, didn't have a pump, any of that. So I feel like, but then at the same time with Bo, it was like when he was little, it was easy because he would just do his needles, do his Dexcom, no dramas.
00:15:05
Speaker
But then it was hard. Like he was little and he was like, he didn't understand anything. And then but now he's three, it's hard because it's like, doesn't want the device changes and he's going through fussy eating. So it's really hard. that There's challenges Don't ignore the four.
00:15:22
Speaker
The four early warning signs of type 1 diabetes. Excessive thirst, frequent urination, unexplained weight loss, and extreme fatigue. If you or someone you know is experiencing these symptoms, don't wait.
00:15:35
Speaker
Get checked by a healthcare professional. Early detection and treatment are key to managing type 1 diabetes effectively. And do you think that, because I have heard, like, that families that have, like, more than, you know, like, a parent that's got type 1 and a child, sometimes that other parent doesn't even really know what's, like, how to manage child. I don't mean it like that. Yeah, no, yeah. It's very, like, interesting too because I feel, like, with Damien, he's very predictable. I feel like he's these older. I really i think he's older. His diabetes seems more stable. Like, he just, like, and I must say he's quite, like, he just lets his pump do his things. He just...
00:16:14
Speaker
So Damien's on a pump? Yeah, he's on a pump now. So both um Damien Bo are on the Ipso. So yeah, so when Bo got diagnosed, he, Damien straight away, got a CGM, got on the pump, like all that sort of followed with what Bo.
00:16:27
Speaker
but I think the last time we looked into CGMs, it was back when it was not covered for, there was like a subsidy or something. It was only for a certain age. You had to be under a certain age or you had to be on like the center that had to get benefits.
00:16:39
Speaker
So two thousand and July 2002 was when it went it kicked over, that financial year it just kicked over of the the CGM going on the subsidy um because I think it was only the Libre or something or, yeah, because I remember yeah i remember they said you could start on the Libre.
00:16:56
Speaker
But then we were like, we would just, let's just wait until the, because we just wanted to go on the Dexcom because I think the Libre, you still had to scan it like on your arm. And I was like, oh. Yeah. So we hadn't looked into Dexcoms for years because back when we did look into them, they were so expensive. So Damien was sort of just like plodding around, yeah, with his manual MDI and his fingerprint stuff. So it wasn't until Beau got diagnosed that he then learnt, oh, I can get this, I can get that. So, and then I feel like, yeah, so when,
00:17:23
Speaker
yeah so like with Damien like he sort of doesn't dose it he just sort lets his pump do his thing and like when he's sick and stuff like he seems to never get ketones or anything whereas I think Beau is so much more like you know he eats the slightest thing and his sugars like boom like you have to dose everything or yeah like he gets sick and he gets the ketones so it's really hard I feel like the adult is so much more ah bit more predictable and stable that's what even I think Damien finds it challenging because he just thinks like himself like, oh, I can eat this and it will be fine. Or then Bo has it. That's when he's like 22 doubles or he's up and you're like, oh, my God, like what happened?
00:17:55
Speaker
Yeah, that's so interesting, isn't it? of of it's not It's not just like type 1 just doesn't – it's trying to explain that to people. It just doesn't – it's not the same for – Everybody, you know, like it's, yeah, like you want what what what happens with one person and what foods that they respond to or whatever, um for a reason it can be completely different reactions, isn't it? It's wild.
00:18:19
Speaker
Yeah. I think because Damien, I think for so many years, he was sort of, I think he just sort of responded to what his body knew. So he would just knew that roughly this many units would give that much. it So he, i feel like, yeah, because he got diagnosed at 17, he didn't really either go to the education or he probably like maybe wasn't listening as much.
00:18:36
Speaker
Exactly. I don't think he even really cared. Like, you know, I think he was very, he was very resentful for the diabetes. um So yeah, like I said, when Beau got diagnosed, everyone told me like, oh, it must be so lucky because your husband's diagnosed. I'm like, he actually doesn't really know it. Like, you know, he doesn't know anything about ratio. So it was really like we're both learning for the first time. Like even now, like I do all David's pump ratio. I just, I think I have a better, the way I learn things or understand it. David's not that great with like the ratios and like learning it, I think.
00:19:04
Speaker
i do his ratios. I do Bo's ratios. So theoretically, let me just kind of try and cast your mind back a little bit again. You're a new mum. You've got like a one-year-old who's had these kind of two very life-threatening diagnoses.
00:19:19
Speaker
There's an element there of, you know, like where you're kind of between you and your husband, you're kind of punishing yourselves, aren't you? Of like saying, you know, like, well, I mean, you're not necessarily punishing yourself. Like he sounds like he was being really hard on himself and you were trying to sort of negate that.
00:19:33
Speaker
You know, you seem so like bright and bubbly and, you know, like how did you manage your emotions and, and yeah, like the survival of it? Like how did you, did you do anything other than just the education? if you What have you done for you?
00:19:47
Speaker
For like now, like as well, that's the thing, I had just come back from maternity leave as well. So I think I would have been back at work for like a week and then all this happened. And then I think, but I think it wasn't until after the first year that everything sort of actually caught up with me. And I think because too, we had the epilepsy going. So it just really felt like the first year I was just like in survival mode. And then it wasn't until after that, that then it sort of all, when we got that sort of stabilizer, it just hit me. And I was like, oh my God, like this has been really hard. So then I went, like I've been in therapy and I talked to like a psychologist and stuff, which has been really helpful.
00:20:20
Speaker
Yeah. Otherwise it's just like finding me time. And that's a good thing because Damien, you know, he's sort of figured it out now. So I can have nights sometimes where I'm oh my God, i'm going to go stay at my sisters tonight. he looked like, I have a few breaks here and there. yeah.
00:20:31
Speaker
Yeah, it's been really lucky in that sense as well. Look, it's really important. I ask that because I know that when I, like, you know, I had a seven-year-old and ah can't imagine having a little baby still, you know, like theoretically, like he's still little, a one-year-old, you know, you're still carrying them around like a koala everywhere. And I did find that as well, like that I had those...
00:20:51
Speaker
you know, like just those complete moments of despair and of just like, how do I keep getting up and doing this every single day? and of course you do because that's what parenthood is.
00:21:02
Speaker
but um But yeah, i I was the same. I kind of was like, I remember going to my GP and saying, i can't I can't keep doing this. I had this fear that if I got sick, something happened to me that then the world would fall apart. And I was actually was making myself sick, you know, like to be honest, like it was, you know, the stress of it was,
00:21:21
Speaker
no good and I I often say to people like you need to talk to somebody you have to talk to a professional yeah and even just all like the mums in the community as well i thought that was such because I thought we got on the is like on Instagram and stuff and i think we actually joined the JDRF buddy program at the time and that's how we got connected with Leah as so it was that there though like reaching out to those communities the Facebook groups that and just having those people that understand just to be able to talk to somebody who just completely gets it you know like when you kind of like you know with your like we just what people probably won't hear we might we might have this cut out in the podcast but what people wouldn't have heard that I had to take a phone call from the school halfway through this because Harvey was having a hypo but then he also needed his intel and administered Megan's just like get it so yeah like I've had I've had those phone calls too like we kind of you know there's always those things that
00:22:07
Speaker
I think that people don't realise that what do you mean you have to get up through the night if they drop low or, know, and what, you're waking them up to administer like juice or a needle or, you know. Yeah, because he was so young too. It's like we just got his sleep sort of downpacks and then it was like, what do you mean I'm going to go in there and like risk waking him up? And then, you know, then it's like the sleep cycle and then it's like they're awake for three hours. I'm like, no. I think nighttime hypos, it was always nap times, them hypos. Like that was, yeah. Yeah. And that's the other thing around the sleep deprivation. Like you know, like people, I think if they have children, they'll understand that newborn sleep deprivation.
00:22:45
Speaker
But then, you know, you put it into the same context of, well, it's just continuous. You know i mean? Like it's not, like at least a newborn is kind of a phase, you know, like they're generally, you know, but this is sort of still continuing on that and that worry we have.
00:23:02
Speaker
eden But yeah, I think that's where we were so grateful to get on the pump as well because we were on and MDI. So I've had a lot of people talk about the diluted insulin, whereas they seem to not see do that as much in Perth. So he was very much just on the 0.5. So we could never really get – it felt like we never had his sugars right. It was always either he was low or he's high. Like you just couldn't do it. Yeah.
00:23:21
Speaker
So that's why we were very grateful once we got on that pump too and the night times now. And like most nap time – or sometimes I feel like with naps he'll go low so I just put him in like the ease-off mode or bring it back a bit. Yeah. But you still got to be around, don't you, to do that. Like it's like it's still – yeah. Like, yeah, I know. Yeah, and daycare doesn't understand that because I try not to overcomplicate things for that and because even the lady at daycare, her son's on Medtronic. So same, same but different. So – Yeah, i try not to overcomplicate it too much for them too have like to, like, do this, do that, too because then they're like, whoa. Yeah, I know, I know. yeah Yeah, well, that's the same with me. Like I sort of say with the school, I'm like, well, technically if he's had a hypo, like Harvey's gone on to the Omnipod 5, and I'm like, well, technically if he's had a hypo, you're not to use the sensor data to, you know, like, but within, like, for and that hour, if he's had a hypo in that hour. But then it's just like, you know what, it's actually too...
00:24:12
Speaker
And then, because you don't to confuse, always worry about them, I don't want to confuse them, but then all they do that every time, because I'm like, no, no, no, that was like a once off, like we're not going to do that all the time, like we're just like, because sometimes we do, like his blood sugar might be like a 3.8, but he's had the hybrid treatment, so I'm like, okay, just put that as a 4, change it to a 4, so you can dose him, give him his food, but i'm like, okay, we're not doing that all the time though, like this is like, you know, call me first and we'll talk about it before. Like, yeah, it's really.
00:24:36
Speaker
It's tricky. And it's tricky to, it's great having the technology to be able to watch it from a distance, but it's also like,
Daycare Challenges and Communication
00:24:42
Speaker
you know, like like I said to you when we logged on this call, I was like, Harvest has had a hypo and I know that his insulin is is about to have snack and he's going to have some insulin.
00:24:50
Speaker
I could get a phone call. Boom. I got, you know like three minutes after we started the gig. Yeah. And that's even like at work sometimes I can hear people go off and they're like, oh, you're going to call ah you know, you want to call them? I'm like, it's okay. Let's give it a bit. Like I trust them. Like at the start, that was the hardest thing at the start too is building that trust and knowing like he's okay. Like we did have, we've had a few times now even where I just called like, you know, all good. Like it's going okay. They're yep, all good.
00:25:12
Speaker
But yeah, so sometimes I'm like, nope, like they've got to, I'll give it a bit. Then if it's obviously going on for a while, be like, okay, just check in to see if they're okay. But I think that too, like we I've always sort of made myself very open the, I'm like, call me whenever, if you're unsure, like, I don't care, call me 10 times at work.
00:25:26
Speaker
I don't, like, I don't care. Like as long as you guys feel, and I've gone there and I've done like a few staff meeting trainings and tried to really involve myself and build that relationship with the date. I thought that's so important to build that relationship and like, they're not, you know, don't be scared of me. Like, you know, it's okay. Like if you made a mistake, call me. Like, yeah, I'm always just like, call me, call me, text me, whatever. I don't care. So yeah, I think that's very important as well.
00:25:49
Speaker
Is that an additional educator or just she just happened to have some type 1 knowledge? Yeah, I don't know because she was, i think they needed a new educator because he was in the nursery room at the time. So they didn' need new educator for that room. And then I don't know whether it came up, maybe like we have got this diabetic child and then, you know, she's like, oh, my son. They're like, yep, you're hired. Like she's great anyway, so I think she would have got the job regardless.
00:26:09
Speaker
But I don't know if they were like, yep, we want you. like Can you start tomorrow? Yeah, because this that this is part of a little bit of a discussion around the, I think, that educators who don't have, regardless if it's childcare or school, they don't actually realise what's the requirements that are, you know, to monitor these children, these type 1 diabetics.
00:26:30
Speaker
And even the flow and effect of like if they've had a bad night of highs or a bad night of lows, like how that can then change their emotions in the day and everything like that as well. so Yeah, so there is that discussion because it's not on the, um you probably know Leah has been doing some work around raising awareness and saying like that type 1 is not on the, um It's not on there. And it's, yeah, it's very frustrating that the schools get, like in WA as well, like if, because I think it's different for the state, different states too. So in WA, once you your child goes to school and they've got diabetes, you automatically get funding and you'll get an EA. I'm not sure because Bo's not in school yet, but so I don't know how much funding you get, but you will get like an EA. So
00:27:07
Speaker
I think sometimes if there's like multiple diabetic children, there might be for a few of them. But yeah, i think in Victoria, you don't get any support, I think. So in here, if you're in school, you do. yeah but in daycare, there's that like, yeah, that's the the whole. And I think kids are getting diagnosed younger and then they're just, and I think sometimes like,
00:27:25
Speaker
Like I actually used to work in childcare before I do what I do now. And I know myself, I started in childcare when I was 17. I'd never changed a nappy before, let alone looking after a kid with a like, you know, as such a critical disease kind of thing that can go wrong at any moment. So I sort of think of stuff like that too. Like sometimes I'm like, oh, you know, you've got girls that are,
00:27:43
Speaker
15, 16, 17. They're all great. But it's that even just to have training, like because ah in WA2, the hospital goes out and trains the schools. So they multi-levels of training. Whereas in daycare, like it's up to you to train the staff. like We don't get any...
00:27:57
Speaker
because it's like a private sector or something. So yeah, like I had to go out and I had to go out and teach them all. And I'm like, I've just learned this for myself. Like I don't even know what I'm doing and I'm expected to train you guys on how to do it. So yeah, I think there's definitely a big gap there of even, even just like someone to come out and train them. That's not, me Like not the parent, I think, would make a difference. Yeah.
00:28:18
Speaker
Yeah, because ah there's like Leah's spoken about in an episode that's actually coming out, but she's talked about how she had to create these little videos and and little booklets and everything like that. Like, and yet that's not. And and look, I think you'd have to do that anyway because it is so individualised. Like you said, like your son's on ah on a um different pump to what this other woman knows of.
00:28:42
Speaker
So, You know, like it is all in very individualised but there's no information like that's there that they, you know, like as a nurse would or or a DE would go out and meet like they do at the schools.
00:28:54
Speaker
And then, you know, like I'm pretty sure Harvey's school, we've got two diabetics, ah three diabetics at Harvey's school. And I don't think they've even done the training yet. Yeah. See? And then I think sometimes it's that also, because when both the kindy Bo goes to school next year year, the other lady from Dacre, her son goes there too. So they have got a quote quite a few diabetics there.
00:29:13
Speaker
But then also you get that thing of like, oh, they've got a few diabetics. They think they're all around the same. So they all treat them the same. Or then you get the ones that, yeah, they don't know anything. It's such a hard thing too, because you think, oh, they've got lots of experience. But sometimes that can be a bad thing. And then it's, it's,
00:29:25
Speaker
I think it no matter what, I'm so stressful when Bo goes to school because I've got used to daycare now. I'm so stressful when he goes, I don't know what to expect. So, yeah. Yes. Well, you will be able to sort of have some shared experiences of people, you know, who have walked the path before. And you know what? Like Bo has lived this pretty much his whole life.
00:29:45
Speaker
He'll be the one that will teach them. I guarantee he'll be the one that will be like, no, that's because don't know if you heard before on the phone, Harvey was saying, you got to do this. And he was, he tells them what, yeah to do like he he actually does most of it himself but they just kind of double check it you know but he'll be the same you watch oh yeah definitely even now he tries to do his own finger prick and stuff himself he wants to do it and you know he's very independent I'm like you want mommy's help and she's like no I'm like really I can help you yeah but that's you know like that's what you want like as much as you kind of think it's that double-edged sword of like I kind of have those moments of like
00:30:18
Speaker
I want Harvey to be able to be independent and do it all himself. and But then I'm also like, but I also want to take some of that burden off for him because I know he's going to be doing it for the rest of his life, you know. Look, it sounds like you're doing an amazing job and, like, I know that it's not an easy gig and good on you for, like, also recognising when you needed the help, you know, reaching out for those nights off. And, you know, still every now and then, like, you know, I'm very much like, yeah, have my girls' weekends away or whatever.
00:30:43
Speaker
even just put myself to bed at like 6.30 and just say to my husband, okay, you need to take over here. Like, you know, I need a complete night off here. And, you know, it's just so so important for for us to have that energy and that strength to keep keep going for these little, little incredible little humans.
00:31:00
Speaker
I'm really, really grateful for um for your time and for you sharing Beau's story and also your husband's and your story. um what ah What a journey you've had these last three years. My gosh, crazy.
00:31:13
Speaker
So if you've listened to the podcast before, um not that this is a test at all, um I normally wrap up with the guests on one last question. Do you know what that question is?
00:31:23
Speaker
About the hypo treatments? Yeah. So I thought I'd actually give two. So when Bo was a little baby, when he was little, we used to find the fruit pouches were really good. So often at nighttime, he would just suckle on a fruit pouch or even in the day fruit pouch or we would do the glucose powder in water so now that he's older we still because he refuses any hypotreatments at night except for the glucose now so we still do that so we mix about a teaspoon or so and a bit of water and then yeah just syringe in his mouth and then now because he's on the pump he only needs about 2.5 grams of carbs so we just sort of we mix up all the time sometimes he's got sultana sometimes he's got little fruit and you just syringe it in his mouth right okay
00:32:03
Speaker
Yeah, so i sort of try and – because he gets sick of them, I feel, really quickly too. Or we've got like now at daycare too, we just keep a bottle of cordial. So they just dilute it, you know, a little bit. and he Because I found with the juice boxes, we'd open it and have – you know, try and take a juice box of a three-year-old as well. So, yeah.
00:32:21
Speaker
And daycare is good with that too. They just keep a thing of cordial. And that last – it's got such a long so shelf life. So, yeah, and he only needs that little bit mixed with water so he thinks he's getting a lot. Awesome. He's great. He's good to go. Yeah. Yeah.
00:32:33
Speaker
Oh yeah. And you can only have just a sip. Like it's like, yeah that's enough. Give it back. Thank you, Megan. I really do appreciate your time. You also share Bo's type one and epilepsy sort of journey on on
Sharing the Journey on Instagram
00:32:47
Speaker
Instagram. I think that's how I came across you.
00:32:49
Speaker
Do you want to, I will put in the show notes, but do you want to tell people how they can keep in touch? Bo, so just B-A-U-S dot T1D. And that's just his Instagram. Yeah. Awesome. Well, thank you so much for your time.
00:33:01
Speaker
That's it for these this week's episode. We'd like to thank everybody for listening and we will come back in a couple of weeks with another episode.
00:33:10
Speaker
Thank you for tuning in to the Type 1 Club podcast. We hope you enjoyed today's episode and gained some valuable insights. If you like what you heard, be sure to subscribe to our podcast on all the platforms so you never miss an episode.
00:33:23
Speaker
We also appreciate it if you could leave us a rating and review. It really helps us to reach more listeners just like yourselves. For more updates, behind-the-scenes content and to join the conversation further, follow us on Instagram and Facebook, the Type 1 Foundation, or visit our website, type1foundation.com.au.
00:33:44
Speaker
Thanks again for listening and we will see you next time on the Type 1 Club.