#835 The Kookaburra Laughs

January 26, 2023Scott Benner

Anne's son has type 1 diabetes and more.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends, and welcome to episode 835 of the Juicebox Podcast.

On today's episode, we'll be speaking with Anne, and as the mother of a child with type one diabetes. And I need to tell you that for the first like three minutes of the podcast, we're using a microphone that we don't finish using for the rest of the podcast. Anyway, and sounds bad for the first couple minutes, but you need to listen so you know the details. Plus, I don't know, I think it adds to the flavor of the episode. So I left it in. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, and you want to help with diabetes research, you can do that from your home at T one D exchange.org. Forward slash juicebox. You don't have to go to a site or see a doctor. It's HIPAA compliant, absolutely anonymous, and really will help T one D exchange.org. Forward slash juicebox should take you like 10 minutes. This episode of The Juicebox Podcast does not have any sponsors. So I guess two things. If you'd like to sponsor the Juicebox Podcast, reach out, I'd love to have you. And if you're looking for the diabetes Pro Tip series, ask Scott and Jenny afterdark, algorithm pumping, bold beginnings defining diabetes defining thyroid, the variable series of mental wellness stuff, it's all available at juicebox podcast.com. It's also available in your podcast app. But if you're looking for a place to pick through the episodes, see which ones you might be interested in, it's right on the website, go up to the top to the menu, click on something I'll pick algorithm pumping. Click on that gives you a list of the episodes that are in the algorithm pumping series. You can even begin to listen if you like online with a player that's there. Or you can take note of the episode number and search for it in your favorite audio app.

Anne 2:31
Hi, my name is Anne and I live in Brisbane, Australia. And my youngest son Xavier is a type one diabetic.

Scott Benner 2:41
I feel like your voice is a little low. Sorry. No, don't be sorry. I'm trying to figure out if we want to use are you using like Bluetooth headphones? No. They're they're wired is the is the microphone moving away from your mouth by any chance?

Anne 2:59
No, it's right next to my mouth hidden because

Scott Benner 3:02
when you talk with more enthusiasm, you're louder but when you were like hi, man, that it was a little soft. So alright, well then there's not much we can do about it. I guess then. Alright,

Anne 3:14
I'll just have to talk with enthusiasm. Exactly. Just,

Scott Benner 3:17
you know, like you're making that movie that we all saw the 80s and is the only reason we know about Australia. What was that called? Crocodile Dundee just always be projecting? Like, like a crazy person in an 80s movie.

Anne 3:32
Awesome.

Scott Benner 3:36
So tell me again, how old are you?

Anne 3:40
Too old about your age?

Scott Benner 3:42
50 ish. We'll call it Yeah, yeah, yeah. And we're talking about son or daughter. I'm sorry. Son, son. How old is 11 years old? Xavier is 11 Okay, how long has he had type one?

Anne 3:58
He was diagnosed in April of 2019. So

Scott Benner 4:05
can we try taking off your headphones and seeing how it sounds? Your voice is disappearing

Hello, hello. Just speak at a normal tone. You can't hear me can you?

Anne 4:35
Yeah, I can hear you now or you can Okay. Is that better?

Scott Benner 4:38
It is but are you yelling? I'm

Anne 4:45
thinking projecting. I'm projecting I'm not yelling. I'm just projecting.

Scott Benner 4:49
So be you're seated. Right? Yes. So just bring your laptop a little closer to you. And then just speak normal and let's hear it like that. Okay, hang on. Also some Yes. I think it's I think it's actually going to be better than the headphones. Okay, worse. Yes. Some is Xavier a low do you need to do something?

Anne 5:14
Oh no, he's dead say I have treated him before I came so he shouldn't be okay.

Scott Benner 5:20
You treated, treated treated. Oh, it's like, Oh, I thought you treated the kid. I thought I hear you take the

Anne 5:25
kid now. Wow, sometimes.

Scott Benner 5:29
Alright, so just to go over a little bit, especially now without the headphones. Just try not to like bang around or touch to stuff or anything like that. But if Xavier is 11 He was diagnosed three years ago. Do you have any other children?

Anne 5:42
Yes, he is. He is the youngest. Sorry, that's his diabetes.

Scott Benner 5:50
Nightscout I hate that noise that Nightscout.

Anne 5:55
No, I just turn it off.

Scott Benner 5:57
You're fine. They go back to you. That always makes that noise. Like you always open up the app to do something. And then you're somewhere very quiet. And then it makes that noise. You're like, stop, stop, stop, stop.

Anne 6:13
Exactly, exactly. Yeah, he's the youngest of six,

Scott Benner 6:19
six children that all came out of you. Yes. Wow. Yes. Look at you go was you know, I don't like to ask like this. But did you make exam you're on purpose.

Anne 6:35
It's like this, the first two were really hard to get. And they I left babies. And then the rest sort of just appeared by themselves. And you just have a different attitude. It's like, you know, what the universe sends you? And then the universe was very abundant. And then we finally went no, that's it. No more.

Scott Benner 6:58
Did you have that feeling at first like it was so hard to have children? It's it's weird to say no, when they keep happening?

Anne 7:04
Oh, definitely. Definitely.

Scott Benner 7:06
I understand that. Yeah. Alright, so let's start at the top. How old's the oldest?

Anne 7:11
A twins so I've got 19 year old twins. A boy and a girl. And then I've got a 18 year old boy. And a 15 year old boy and 13 year old girl and then save us. 11

Scott Benner 7:27
Wow. That's very cool. It was a

Anne 7:29
busy few years.

Scott Benner 7:31
I really it was only about like, if you take Xavier out of the mix. It's only about seven years, right? Oh, yeah. Seven years three pregnancies. That's not bad.

Anne 7:42
Yeah, that's Bob.

Scott Benner 7:44
Excuse me. I almost forgot one of your pregnancies with inside of the seven year window. So that's really that's crazy. See, I would have had a boy and a girl twins and I would have been like, oh, look, we're done. Perfect.

Anne 8:00
Well, I think my husband probably thinks that sometimes

Scott Benner 8:02
give me when he's at work for 43 hours a day trying to pay for everything.

Anne 8:10
But he can't get to golf up to the golf course. Because there's so many things to do for the children.

Scott Benner 8:15
Hey, in Australia don't things on the golf course try to kill you.

Anne 8:21
I think that's Florida.

Scott Benner 8:22
Oh, yeah. You're right. I was confusing Florida with Australia.

Anne 8:27
We just have kangaroos mainly.

Scott Benner 8:30
I love a good fistfight with a kangaroo. Those videos. Those videos are terrific. Any of the other kids or your husband or yourself have autoimmune issues?

Anne 8:40
Yes. Not the other kids so far, but there's quite a bit in my family. We've I've got Hashimotos my sister's got Hashimotos my mom's got Hashimotos we've got Pernicious anemia. One of Xavier's cousins has MS.

Scott Benner 8:59
MS. Yeah. A lot of autoimmune stuff in there. Okay. Yeah. All right. But nobody was looking for diabetes when he was diagnosed. Oh, no, no, he was eight years old. Right. Is that right? Yes. Yeah, he was having to present to you.

Anne 9:20
Really out of the blue. He just although I had I had it was the first term of school for the year and I had been looking at him and going there's just something not quite right with you. He had nothing specific. He didn't have the, you know, constant pain or constant drinking. It was summer so he was drinking anyway. And he just didn't look good. And he had like big black eyes and all of that sort of thing. And I thought oh, you're just not thriving. I'm I'll make a doctor's appointment for the school holidays and we'll get you seen too. And then the week before the school holidays, he He came in one night, one night on a Sunday night he they're allowed to have a glass of soft drink. And he only had diets often anyway. And after dinner, he asked for another one and I went, Oh, we don't get to eat. And he went okay and went to bed next morning, he woke up vomiting. And I went, Okay, you've got something so stay home from school and he wasn't too bad. And we got through the day, but I made a doctor's appointment for the next day. And I had noticed during the day I pulled up his shirt, His breathing was a bit funny. And I pulled up a shirt to listen to him. I could see his ribs. So I knew he'd lost weight. So then I weighed Him and He will lost a significant amount of weight. But he often got croup, so I sort of thought, Oh, it's great. It's fine. And when he woke up the next morning, he was vomiting again. And then he just was he was in a real state, he couldn't get off the floor. His breathing was shallow and rapid. And we still didn't go call the ambulance or anything. He'd still we didn't even think about it being life threatening. And we took him to the doctor's like within the hour, and the doctor took one look at him and fingerprick doing well. He's type one diabetic. I'm calling the ambulance and off we went to hospital when he was DKA. Oh,

Scott Benner 11:20
my goodness. Yeah, I was gonna say it was definitely DK. By the way, they only get one glass of a soft drink because it's too expensive to buy it for 234568 people. Is that why?

Anne 11:33
It was just, you know, we were trying to limit you know. Yeah. And they were all little them now. It's a very different story. They're all older

Scott Benner 11:42
and they don't listen to you anymore about what the drink

Anne 11:46
exactly three of them or 18. They want alcohol and stuff as well.

Scott Benner 11:51
That's funny. My son doesn't drink but he orders an iced tea that's not that's sweetened. And even that makes me upset. Like, I've never said this to him. I never would. But he'll order a sweet tea while we're at lunch. And it makes me upset because I want him to I want him to order an ensuite thing. And I'm like looking at him exerting himself over here with the sugar. So

Anne 12:15
did they make their own decision?

Scott Benner 12:16
I know. Right? Darn it. So you you sent me quite a little note here. Let's start just with coming out of the hospital like what? What's it like in Brisbane getting diagnosed?

Anne 12:32
They sent us home. Well, we had you know, some education, obviously in the hospital, and sent us home with pens. And they did talk to us about a CGM. And booked in in back. I don't know, we seem to have supply issues always or whatever. And it was months behind. So it was like four months later when we got it. But it was Dexcom. And it was a Dexcom five, hang on the I've got a puppy and she has decided she doesn't want to be where she is.

Scott Benner 13:04
So that's fine.

Anne 13:06
It's alright, if you come in and out. She's very nasty. That's what you need.

Unknown Speaker 13:16
Yeah. Great.

Anne 13:20
So and then you go back and you have classes, you go to diabetes school, and which I was really quite surprised how limited it was even with my very limited knowledge about diabetes, that it was really centered around carb counting and how that worked. And it really didn't talk about any of the other stuff.

Scott Benner 13:55
It gave you that feeling like while they were teaching you that there must be more to it than this.

Anne 14:00
Oh, absolutely. Absolutely. So where do I sign up for the next class was my feeling and of course there wasn't anything

Scott Benner 14:08
that was gonna say there was no next class.

Anne 14:11
Just go out to the world and find your own way.

Scott Benner 14:15
Well, what did that lead to? That lack of education what kind of like outcomes did you have initially? Do you think he was honeymooning in the beginning?

Anne 14:26
Um, no, they think he never honeymoon. He was he was on. He never he never really dropped from his initial dosing. And his needs just got more and more really you know, I thought we were going okay for the first few months. Although he did hypo a lot at school. And then when we got the dex calm, I could obviously see what was going on. And I'm like, I was really shocked the day we got the day Dexcom because the, the nurse, the diabetic educator, actually that said set us up was a diabetic herself and more a pump ended Dexcom. And I said, Okay, well, what do I expect to see from this? You know, what do I see post meal? What do I see here? She has autunno

Scott Benner 15:19
just didn't give you any idea at all what what to look for? No,

Anne 15:23
no. So of course, that sent me down the rabbit hole of the internet. What am I supposed to see? And what am I supposed to do? And all of that sort of stuff. And, you know, I was seeing really crazy things on his graph. And you know, he had that really big spike at about two o'clock in the morning, and it would last for a couple of hours, and then he would wake up and he'd below and

Scott Benner 15:52
when we talked about low, how low was he?

Anne 15:56
Oh, well, it shows his low on his. So under two

Scott Benner 16:00
under two. Okay, so for everyone else like a 55 ish, right around 5455 is a three. A two is 36. So like, like scary, worrisome. Low. Yeah. Any seizures? No. Okay. And then when he got hot, what would his spikes look like?

Anne 16:22
Oh, like, you know, 25.

Scott Benner 16:25
Wow. That's like 450. Yeah, yes. And you okay, this is interesting. So you were bouncing hard. Up, down, up, down, up, down. Yeah. Okay. And when you when you see this happening with a meter, I mean, how long were you on a meter before? You saw the CGM?

Anne 16:44
Ah, about four months,

Scott Benner 16:47
four months. So for four months, I imagine you were just chasing right like feed the lows. Inject the highs feed the lows and Jack the highs? Yeah, absolutely. So then the CGM comes into play. What's your first thought when you see it happen kind of in real time in front of you?

Anne 17:05
You know, I need to learn more I need you know, someone has to help me find answers. So, you know, I went to our first follow up appointment and said, This is what's happening. And you know, this, you know, I'm seeing this high in the middle of the night and what do I do? And they went, I don't know why that's happening. Really? Calculate how many I don't know it's I got but yeah, I don't know.

Scott Benner 17:32
What were you at a regular, like, so I don't know how it's how was it broken down in Australia? Like, were you at an endocrinologist?

Anne 17:40
Yeah, they had. It's, we've got a major like Brisbane, fairly big city. Yeah. And we've got major Children's Hospital. That's just, you know, a children's hospital and we were in had guests had endocrinology appointments. And there's a whole department that you go to and they've got diabetic educators. You hear the cooker virus?

Scott Benner 17:59
Yes, that was that was I thought for sure someone was abducting a child behind you. What is that? Cocoa bar is

Anne 18:05
it's the sun's starting to come up and the cooker bar is waking the morning up.

Scott Benner 18:12
What the hell does that mean? You mean? Wait, hold on. You're using words. I don't know. Are you? Are you saying chickens?

Anne 18:20
Cougar bars.

Scott Benner 18:21
Okay. Hold on a second. This is gonna be our first Australian roadblock here in the episode. How do I spell that?

Anne 18:33
Okay. You U cookoff. Bara kuca? So KWOKAB You are a?

Scott Benner 18:46
I got it. Hold on. They laugh. Oh, they sort of look at that. They're not particularly large birds, right? What are they? What big? No kidding. Yeah. Well, they seem adorable in the picture white brass brown wings and tails with little blue on the big beak. And they laugh.

Anne 19:09
Do they have

Scott Benner 19:13
that's I mean, I swear to you, I heard it. I thought I thought can add and I get these kids under control. And then tell everybody what time it is there for you.

Anne 19:25
is quarter to six in the morning.

Scott Benner 19:29
Yeah, thank you for doing it like this. I really appreciate it. I am also recording not nearly as early as you I'm later much later in the day than I normally do. But okay, so now that the cocoa Berra is that what they are cook, cook. Cook Amaro. Yeah. Okay, now that they're done or will they do it again?

Anne 19:48
Oh, they might do it again because they do it as the dawn happens. It's like that in Aboriginal folklore. They they welcome the morning.

Scott Benner 19:59
Yeah, bye My wife welcomes the morning every morning she wakes up, she says rub my hand, scratch mine. It's not the same thing from my hand a little more my fingers from my fingers. Okay, I'm over here. I'm like my hand is no, nobody cares. Okay. So so I'm sorry. So you get the CGM. And you start to be able to see these bounces. And they are as I'm expecting, right? Like you're from very low, shooting straight up very high back and forth. And then you go as you go ask for help. And the help you get is I don't know. So then Yeah. So you know, it's a problem. But what do you have? What do you do once a doctor says, I can't help you.

Anne 20:37
Go to the internet.

Scott Benner 20:40
Excellent. How do you even know where to begin? On the internet? You just Google?

Anne 20:45
Just start Googling. Yeah, I just started googling.

Scott Benner 20:50
What was your first intention? Like what were you trying to accomplish in the beginning?

Anne 20:55
Just to get more informed and to try and find some answers. Because I knew there had to be answers. There had to be more information somewhere. It just wasn't available where I was.

Scott Benner 21:11
You know how unbelievable it sounds that you asked the doctor a question like that. And they just said, I don't know. Oh, I know. It's fascinating. Like a nurse ever grabbed me in the hallway and say, listen, here's what you do, or like, nobody tried to help.

Anne 21:26
No, no, it was very, very frustrating and demoralizing. And I felt very alone. And I lost a lot of faith in the medical system completely.

Scott Benner 21:38
I would imagine, do they? Did they label him? Like are they called to use? They tell you you're not doing the right thing. But you didn't do what they told you. They call him brittle. Like any weirdness like that.

Anne 21:51
They just said he's, he's not he's not doing typical things. And at the beginning, they didn't label him. And they didn't. They weren't mean to me or anything. But they certainly weren't helping, you know, I was getting no sleep. And I'd go in and I cry, and I do all those things. And they just like, well, you know, you just got to get through it.

Scott Benner 22:14
He's only eight. How do you what do you mean? Like, for 30 years? Yeah. That's fascinating. So I mean, looking back now, where his ratios wrong? Was this basil wrong? What do you think it was?

Anne 22:28
No, we needed to do lots of changes of technology of his insulin, we needed to do lots of stuff. And we certainly have done that. And since then, but I think when you get diagnosed, the way we got diagnosed here, we have very, two very different systems. One's a public system that everybody can use and one's a private system, which obviously you pay for and you have health insurance to pay for. And when he went through the hospital, they said to me, Well, you have to stay in this clinic for 12 months, before you can go off and do anything else. Which I now know, isn't correct. But that's what I was told I was doing the right thing. And I got to, I don't know, nine months, you know, it's when I just can't do this anymore. You're not helping me, I have to find a different way. So I found a private doctor. And we went in and you know, at the first the first meeting, we changed insolence straightaway. And he said to me, Well, you know, the hospital has an arrangement with the companies, and that's the one that they use. So that's the one they use.

Scott Benner 23:49
So you actually changed like his Basal insulin.

Anne 23:53
And his and he's just on over rapid. And let me to start with okay. And we changed both.

Scott Benner 24:01
Where did you go to?

Anne 24:03
We went to human log and Lantus.

Scott Benner 24:07
And that was it was just that a difference? Or did you also start getting better understanding of the settings the amounts that needed to be used?

Anne 24:17
While he was still pretty crazy? When he changed? When he changed? Insulin, we saw a little bit of a difference. But we were battling all sorts of things. We were battling skin problems like he he wasn't a sick kid before he got diabetes. We didn't know. But he was allergic to all the medical tapes. So you CGM 's were an issue. He was you know, crying, itching and he had this all over ah, and we didn't know whether it was from insulin or whether it was from the type. His skin was really sensitive. And so we tried every medical tape in that we could get a hands on, we went down lots of different roads, you know, I've had him allergy tested, I've heard him lots of things. And you know, the diabetic educator that goes is that my endocrinologist that he's allergic to something? Well, I can see he's allergic to something, all his injection sites are red, all that sort of stuff, took him off to the allergist. And the allergist, tested him for insulin, but and said, Oh, no, he's not allergic and to do any more testing would be too invasive, so we won't worry about it.

Scott Benner 25:40
But he's just the just, I mean, it's having a reaction to the to the tape on the Dexcom. Right. At that point, that's what it is. Right. So do you. Does anybody help you like with barrier creams and wipes and things like that, or nobody brings that up?

Anne 25:56
Well, I had already, you know, I'd got on Facebook groups and all that sort of stuff. So I was well aware, I was I was more aware than they are of all the solutions. So we had tried, we've tried every single solution that is on the internet out there. We've tried every type, we've tried everything. We still don't really have an answer. And we tend to cycle through things. Even CGM, we cycle through we try different ones and and it's he seems to have a period of less reactivity with if you're with a different one, then it'll build up. It's like a buildup of toxicity or something. And then we change and go to something else just

Scott Benner 26:41
get bouncing back and forth so that nothing ends up. Does he have other allergies?

Anne 26:47
Well, you does now we've we have discovered that he's actually allergic to zinc. Really? Yeah. And so every inch one except a Piedra has zinc in it.

Scott Benner 27:00
Okay. How do you find out he's allergic to zinc?

Anne 27:04
A process of elimination?

Scott Benner 27:06
That's your long unpleasant process? Yeah. Yeah. Well, so how does that how does that present?

Anne 27:14
Well, it's just like, it's a systemic thing. Because it wasn't just, it wasn't just the tape that was itchy. It was his whole body was itchy. It was you could see how uncomfortable he was. And of course, we had him on any histamines and all sorts of things to try and counteract that effect. And when we finally discovered this, and we said, well, we have to find and think free insulin. And I had known about a pager from you. And I didn't know it was zinc free. But I'd done my research and discovered that it wasn't free. So I went into my endocrinologist and said he's got to have this one. I don't use that one. I don't care.

Scott Benner 27:58
Look at the boys. He's he lets go. Yeah. So he's go on did making that switch change his reaction to it? He's um, so no,

Anne 28:10
not really. But it certainly helped the all over.

Scott Benner 28:16
Yeah. Okay. Yeah. And how long did it take you to figure this stuff out about the adhesives in the zinc? Couple of years? Wow. That sucks.

Anne 28:27
Because I was doing it all on my eye. Yeah. And nobody, I'd go down one road, and they'd go, oh, yeah, that's too hard. I don't know. And so then I'd have to come back to the drawing board and do all this research and then go in and present them with information and go, he needs to have this test or he needs to have that test or,

Scott Benner 28:46
and you've tried and you actually try it. Like she started off with more of like the state run hospital and then you went to a private doctor who really wants you push them further things wasn't much more helpful, honestly.

Anne 28:56
Absolutely. Yes. You know, we've got, we've got a pump. And we got a diabetic educator and all of those things, but, and he will give me mainly what I want, but he doesn't have any information for me and happily says you have more access to current information than I do.

Scott Benner 29:13
Well, that's not true. He must have the internet also. Exactly.

Anne 29:17
It's about wanting to know it, isn't it?

Scott Benner 29:20
You have more access, because when you go home at night, you pay attention to this, and I don't how old is this doctor?

Anne 29:30
Oh, he's he's probably in his early 60s. I reckon.

Scott Benner 29:38
You need a younger doctor.

Anne 29:40
Oh, I know. I'm desperately searching him and I have got my name down at a different one. But there's a real lack. There's probably, I don't know, five or six, pediatric endocrinologist in Brisbane. And all of them are on the older side. Yeah, and yeah, It's like free clinics. And that's it?

Scott Benner 30:03
Well, you're not painting a fun picture, that's for sure. No, hasn't been a lot of fun. So when you get online and you start learning things, I mean, you Google, where do you end up? You end up on blogs? Or podcasts? Or what do you find first?

I am only going to take a moment to tell you about the private Facebook group Juicebox Podcast, type one diabetes, it has 34,000 members in it, don't let that overwhelm you, that's just a lot of voices, that maybe has the answer that you're looking for. So you put a post in there, you're gonna get some great feedback, you might see something that you know about that you want to share your knowledge for, or maybe you're just looking for companionship, or community, maybe you just want to lurk just so you don't feel alone. You can do that at Juicebox Podcast, type one diabetes on Facebook, it is a private group. That's important, because then you can feel comfortable there. So when you get to it, you're going to need to answer just a couple of questions. So we can make sure you're a real person. And then you'll be in. And you'll be enjoying what everyone else is doing. In the group. I literally just pulled it up now. Actually, two things. In the feature tab, if you're looking for the series that I talked about the beginning, there's a whole list of them there, as well as other featured posts that are in the group. But just out on the regular board, right? People are talking about everything. Here's a brand new post, somebody's talking about just not feeling great. Do you ever feel like there's a dark cloud, it starts out, this post has only been up for 11 minutes and 36 people have jumped in to give their support. There are all kinds of things on this page, from management, to community, something for everyone at Juicebox Podcast, type one diabetes.

Anne 32:08
I find lots of medical information is sort of where I went down the path of and I chased everything. And there was lots of organizations that I sort of I'd go into one with an organization and they'd say something and then I'd take that little bit of information. And then I'd Google that and all that sort of stuff, obviously, on online also, I was on through Facebook, I got on lots of groups and anything they said I would go on and that's obviously where I found the juice juice box. And I think for the first time I sort of took a big sigh of relief and went oh my god, there's somewhere that knows something.

Scott Benner 32:53
It's there. Yeah, that's silly. I really do find it to be silly, but it's like through Facebook that you find a thing and it's wonderful, but it's just, it's odd. Hey, I'm sorry. Do you live anywhere near I'm gonna mispronounce a word in a second to see you know, do you live anywhere near? God? What is this? into roughly into Indra? pilih. Indra Pillai, do you live near there?

Anne 33:16
No, no. Okay. On the other side of the city. We live in a suburb called Cappella Bob.

Scott Benner 33:23
Who made up these words? There's just a on my list at juicebox docs.com. A listener has suggested a provider named Rachel Baker. And she's at McIntyre health. So I wasn't sure if you live near there or not.

Anne 33:40
Yes, no, I did not. I did listen to Rachel's episode. Yeah. And

Scott Benner 33:47
not close enough. Well,

Anne 33:49
no, it doesn't matter. I would travel. That's fine. But she doesn't have a doctor. She because she's a diabetic educator. So

Scott Benner 33:57
oh, she's in the private system. So it's just her helping out? I see. Okay. Yeah, I gotcha. Gotcha. Okay. So did you think? Well, no, that's not my question. So so my question is, now you have the CGM, you've been online, you're learning about things. How do you start to they begin to find stability? What's the first adjustment you make? Do you remember?

Anne 34:25
When he got his palm? We, the process was that I would use to remain to the diabetic educator every day and we would start making adjustments. And I suppose that really when we started to dial it in, but we got to the point after six weeks and she went, you know what, he's just gonna be one of those kids, because everything we changed, changed something else. And the problem with Joe shift

Scott Benner 35:02
one of those kids by one of those kids, I think what she meant was, your kid's going to be one of those kids that I don't randomly get right. So you're screwed. And that's because they don't know because she didn't know what she was doing. Right. She was just turning knobs.

Anne 35:15
Yeah. And like, she was very experienced, and I'm sure she knew lots of stuff about diabetes. But for Xavier with his extra issues, it just, it just wasn't right. And she ended up saying to us, go to Nightscout and put in all of his insulin and food and all that sort of stuff and see what it suggests. Because it's more aggressive than I will be.

Scott Benner 35:47
I remember was that the website that are you think put it right into the app, or you think there was a website where you could kind of put in some of your, your information, and it would kind of spit out what it thought your settings were?

Anne 35:59
No, I like build the app and build his website. Yeah,

Scott Benner 36:03
do the whole thing. And then it'll tell you. Yeah, yeah. Well, that's not quite how that works, either. I feel like you know, you're describing like medical care is if you live on the edge of the world.

Anne 36:13
I know. It's ridiculous. Yeah.

Scott Benner 36:17
No kidding. It is. Yeah.

Anne 36:21
Yes. And then, of course, we've got we've got a pump that was brand new to Australia, and they sort of blamed the pump.

Scott Benner 36:34
That's the fault. It's great.

Anne 36:37
They didn't know about it.

Scott Benner 36:40
Yeah. Oh, no, anything they don't know about? It's, it's like, oh, I don't know, we don't know what that is, that's probably that thing messing up. We don't know, I can't say I don't have experience with etc. Meanwhile, how are you enjoying this time, like talking about how it feels personally, to be going through this with your kid.

Anne 37:00
I was really very, very, very demoralized, you know, and just so frustrated, and let down by the whole system. And just I felt very, very alone. And I think if I didn't have I hadn't had juicebox where I was starting to amass some knowledge, I don't know what I would have done actually, because it was the only place that I was getting any information about what I actually should be seeing and what I could be doing and what I end and giving empowering me enough to make really big changes with him.

Scott Benner 37:50
I'm glad. Did you dive into the Pro Tip series? Or did you go to the number one? Did you Oh, you're my favorite kind of listener. And thank you very much. We need all the downloads. And the best way to get them is to listen to all the episodes. But being serious. Well, actually, that I was serious about that. But being more being more serious. Did you find that just a little bit day after day added to your knowledge added to your knowledge? So you started feeling more comfortable? And then ideas started making more sense it just built? Is that how it goes?

Anne 38:25
Yeah, absolutely. And, you know, when when you're first diagnosed, they sort of say, Oh, well, you know, stay between four and 10. And you know, your ranges and do this and don't need but you know, don't correct after under three hours and all that sort of stuff, you get those rules. And it just wasn't working and to know what I should be seeing on my CGM. What was possible what spike would means, you know, if he went straight up at after he ate, then it was not enough insulin or my timing was wrong. Or, you know, if he was spiking two hours later, which unfortunately, he was, what did that mean? And was that normal? And, and, and through all of that, gradually information, I was able to go, This isn't right. What I'm seeing isn't right. And no matter what changes I make, it's not working. So what else is going on?

Scott Benner 39:28
Did you ever once you figure things out? Do you ever go back to the doctor and say hey, look, things are better. Now. This is what we did. Oh, yeah. Did they was their response, like, oh, yeah, we know that stuff. And it's good. You figured it out? Like we were trying to lie? No, they were surprised to

Anne 39:47
Yeah, and they go oh, what did you learn this time? Oh,

Scott Benner 39:50
okay. So you started turning into the person who listens to the podcast for the doctor then?

Anne 39:55
Exactly. I mean, I pay $500 for the privilege

Scott Benner 40:00
of recanting my podcast to a doctor what a deal in

Anne 40:08
bargain

Scott Benner 40:11
so what the guy say today? Hold on let me start the meter Well, that's terrible. A bit on your own. I imagine like, you know, or do you and your husband manages together or are you on your own a little bit?

Anne 40:28
I mainly do it he does it. But under instruction and he certainly isn't as attentive as I am.

Scott Benner 40:41
We're talking about him managing diabetes, right? Yeah, I said about married a long time to about how he handles everything. Is it just not? Not paying close attention and needs direction? Oh my gosh. I'm just trying to I mean, I'm paying in my mind I'm painting a picture like not for nothing. I'm not calling you old. But you're 47 ish years old when this is happening to you. You've already got you already got 1234 I mean, a lot of kids. You live in a I mean, a jungle right? Don't you live in a jungle? Yeah, that's right. Yeah, right. Right. Right. And so there's a lot going I imagine your job is just like collecting coconuts or something or I don't know exactly. Something like that. You sell boa constrictor skins or, you know, Oh, yeah. You probably own like an HR like outsourcing company or something like that.

Anne 41:38
But actually, we own an insurance underwriter.

Scott Benner 41:44
But it's mostly snake attack insurance. Is that correct? That's it. Yeah. Okay. And spiders, spider insurance, Snake insurance, stuff like that. Yeah, yeah. But so I mean, you're, I mean, I don't want to say you're later in your life. But you certainly at this point. I mean, you got five kids that were chugging along, you were kind of like, wow, this is easy, right? They come out one end, we feed them, they send them out, like, this is how it works. And now you have all this going on. And you're kind of doing it on your own. I mean, on a personal side, and then on a on a on a medical side, you're really doing it on your own, and everybody you search out in real life doesn't help you. Absolutely. Why didn't you give up?

Anne 42:28
Because of him, you know, it can't give up? You know, he had I had to find a way to give him a life because, you know, at that point, his childhood? Well, you know, his childhood has been stolen. He, it's just gone. It's all about his health and his ill health. And he doesn't feel good. And you know, We're up all night. He doesn't sleep very well, he, you know, I don't sleep.

Scott Benner 43:01
Yeah, it did feel hopeless at points.

Anne 43:05
Oh, definitely. Definitely.

Scott Benner 43:06
Did you ever have any anxiety or depression from it?

Anne 43:12
Um, I'm not that kind of a person. I sort of just get on with it. But there certainly has been times where I just you know, I think, truly, I think COVID probably saved us.

Scott Benner 43:25
Gave you a lockdown gave you time to think about it kept him at home.

Anne 43:30
And also, you know, the busyness of life. You imagine, you know, we spent a lot of time on the road, burying kids and kids were at three different schools.

Scott Benner 43:37
And yeah, it all went away.

Anne 43:39
It was all crazy. And it all went away. And they all were here. And we all sort of came in and just supported each other. And we're around each other. And I think that stopping and breathing again, probably was really good for us at the time.

Scott Benner 43:56
Right? Well, I mean, I would imagine when you when most of your life is spent running from King Kong, something like diabetes probably doesn't seem that scary. Really. You know, so Well, in

Anne 44:07
the beginning, that's how I sort of felt Oh, he's got diabetes. Okay. No worries, that's fine. We'll just get on with it. And I certainly have a look back and think oh my god, I can't believe how much I didn't know. And I would never have anticipated the journey that we've had.

Scott Benner 44:24
Well, you know, where you're where I think when I hear stories like yours, like the first time I think you're it's not lucky. It's it's it's um it's because it's not luck. It's kind of how people are built like some people hear doctors say, Well this is it and they go okay, well this is it. And they just they just agree and they move on. And if you had enough something to push back even in you're just in your mind at first so this isn't right like this can't possibly be right. Did you know any other type ones?

Anne 44:57
I have I have known typing. ones but I didn't know type ones. But they certainly came out of the woodwork. You know, I found people coming up and saying, Oh, I'm a type one did you not know? Or my sisters are type one or that sort of thing around me. But you know, it's like, I've heard you say, being a type one who's in your 50s or 40s, or 20s. Even is very different to now. Because treatments so different. Yeah. And his em have changed the landscape and pumps and all that sort of stuff. How long has

Scott Benner 45:33
g six is available in Australia now? Right? Oh, just just in the last month? Yeah. Just very recently on the PA just got there, but it's still it's not covered by your your health care system. Is that right?

Anne 45:47
Yeah, no, it's not covered at all. It's totally out of pocket out of pocket.

Scott Benner 45:50
They're still okay. What kind of pump did you get for him

Anne 45:57
is that he uses an Accu check solo, which is a tubeless pump as well.

Scott Benner 46:03
Oh, that's the I think I know this one. Hold on. I'm looking at it. Yeah, yeah. Okay. And it's got like a cartridges snaps into it. Is that right?

Anne 46:18
Yeah, it has what they call a pump base, and you put the cartridge in with the insulin, so you just load it in whenever you need it.

Scott Benner 46:27
How long does how long does the base stay on for

Anne 46:31
three months?

Scott Benner 46:32
Wow, doesn't get infected or anything

Anne 46:35
on Oh, no, it doesn't stay on the skin. So what happens is you have a they call it an assembly, but it's a base plate, which has got the cannula in it, and it sticks on to the skin. And then the pump clicks into that. So to have a shower, it just clicks out like it's a two second click out and click in. So you just take it off and change whatever you need and put it on how it works. Well,

Scott Benner 47:03
I'm sorry. Now that's what you're gonna say works. Well, code Fisher thought

Anne 47:08
works well for Zevia. Because we don't get any more than 24 hours out of the site.

Scott Benner 47:14
Okay, so the infusion sec, you have to move pretty frequently. And because of that, oh, and because and why do you have to move it so frequently?

Anne 47:26
Because he has, like a hyper immune response. So he's got insulin absorption issues as well. Okay. And it? The sites break down pretty quickly.

Scott Benner 47:38
They go bad after a while. Yeah, yeah, sometimes in 12 hours. So you sort of notice on his on his graph that the insulin is just not working the way you expect it any more than you move the site? Yes. Okay. Is that a diagnosed issue? Like do they put a diagnosis to that?

Anne 47:56
No, we're trying that's that's my current mission.

Scott Benner 48:02
That's what you need another mission. You're just trying to underwrite insurance and if you're busy get an amen.

Anne 48:11
Well, I've only just started working in the business. I've been a stay at home mum all this time. The last few months, but I'm actually homeschooling at the moment as well. So

Scott Benner 48:24
will tell me would you mind telling me a tiny bit about what lockdown was like in Australia? Because from an outsider's perspective, it seemed very rigorous.

Anne 48:34
Oh, it was, but it really didn't affect our lives very much. We didn't have a lot of COVID For a start, especially here in Queensland. And we, the kids stayed home from school, everybody worked from home, but we work from home anyway. So it didn't really affect our lives. The big thing was like extracurricular activities all got canned. And the hardest thing was finding supplies, like grocery stores and stuff, we just didn't have those supplies. So you really had to be like for us, you know, you could buy one bottle of milk and one thing of meat and all that sort of stuff, every trip, so I'd have to inbred was was you could only buy certain amounts of limited as well. So you can only buy a certain amount. So lots of things and rice and pasture and all that sort of stuff. So I'd be going to the shop slots, but only one person could do at the shops. You had

Scott Benner 49:27
to designate a person to go out. Yeah, it was me. At my house, it was me. And the first time I did it, I thought they had a meeting and decided I was expendable and that's why I'm the one being sent to the grocery store.

Anne 49:43
I don't know what they would have done if something had happened to me because I'm the one who does

Scott Benner 49:46
poor thinking on your side mind too, but you don't I mean, like at the very beginning of your COVID Like it felt like you were getting sent out like it felt like you were snooping trying to like cross enemy lines and you know World War Two like was that why Like yeah, like you went out I'm like, well this could be it. You know, I guess I'll go get pork chops and live through see if I can live through it. Anyway, I've never actually meanwhile, I've never had I mean I should knock on something but nobody here has ever had COVID so but okay so so that whole lockdown gives you time your life slows down a little bit. You don't you're not moving around as much you're able to spend more time paying attention to this new thing in your life and trying to figure it out ended up being a blessing really having the time.

Anne 50:31
Oh, absolutely, absolutely. And I could really build data so at the end of it I sort of went back to my doctor and went right I believe that he has delayed in delayed my brains gone digestion, okay digesting. And so we need to go to a gastroenterologist. So off we went. And she had some exploratory surgery and some testing some special testing done and got got got the diagnosis of gastroparesis.

Scott Benner 51:11
back quickly.

Anne 51:13
Yeah, pretty quickly, because I had the data to prove it. I can say like, because Mike because I work so hard on my CGM. I could go in and say, Look, this is where he's been. This is where he's being fed. This is where he's been injected. And this is what's happening. And so because I understood it, they didn't understand it, but I understood it enough to explain it and say, This is the proof that he's definitely something but got got something going on.

Scott Benner 51:36
So you were giving him insulin, he was getting low, and then much later needing the insulin. Yeah, they give you any, you know, it's funny, I was gonna ask if the doctor gave you an explanation, but after the last 45 minutes, I'm thinking what the hell do I care what your doctor said?

Anne 51:52
He was, I've never had a kid with gastroparesis before.

Scott Benner 51:56
I imagine that's the answer you get about everything. Like aspirin, I don't know where to buy those. Good luck. I mean, because I mean, your son was an undiagnosed for a very long amount of time. Like how does like how does something like that come on so quickly?

Anne 52:14
I actually think he had it first. Really, sorry, apparently can just get it to no reason they call it idiopathic gastroparesis, because for Eric in 18 months before he was diagnosed, and it could have been, he could have had the beginnings of diabetes. Even then it could have happened together. He started having all sorts of Gi problems and and, you know, we went to the doctor and they went, I just constipated and give him stuff. And you know,

Scott Benner 52:48
can you describe those problems a little bit for me?

Anne 52:52
So he always felt sick. He'd say, I feel like I've got acid burning. And definitely, you know, toileting issues.

Scott Benner 53:04
constipated, like constipated, diarrhea, and back and forth again, stuff like that. Yeah,

Anne 53:09
yeah. Yeah. But his teachers had also approached me and said, you know, he says, I would give instructions and he's just staring into space. And it takes you know, you have to refocus him on whatever and, you know, maybe he's got maybe he's on the spectrum or something. I mean, he's normal spectrum. I have a child on the spectrum. He's not on the spectrum. But looking back, I think probably he was having hypose and I was hypers for a long time before we ever thought about diabetes.

Scott Benner 53:46
Okay. It's interesting. Idiopathic gastroparesis, upon the three main causes of gastro precice diabetic post surgical and idiopathic. Patients with idiopathic have a constellation of symptoms, including nausea, nausea, vomiting, early, hold on early satiety.

Anne 54:09
So it feels full quickly. Yeah,

Scott Benner 54:11
satiation right post pragnell, fullness and in some patients upper abdominal pain. Interesting. How did they diagnose it?

Anne 54:20
So you do a radio, you go in and you eat a radioactive meal, and then you have a series of scans over four or five hours, so every hour for four or five hours and they because digestion is supposed to be fairly predictable and found that he has still had a significant amount of food in his stomach after all that time.

Scott Benner 54:46
Is there a way that it's treated? Is it with diet or how do they help him or can they not?

Anne 54:51
So they at the moment he has a he has a special laxative he has something for us Ah, and he has a really low dose, special antibody every day.

Scott Benner 55:06
Okay, what's the antibiotic though?

Anne 55:10
motilium is the one he takes

Scott Benner 55:17
second motilium

works by blocking the action of a chemical messenger in the brain which causes the feeling of nausea and vomiting. Okay, so that helps with some of the side effects of the, of the gastroparesis. Yeah. Are there any foods that he tries to stay away from? Or does it not matter?

Anne 55:49
Anything that's good for diabetes isn't good for gastroparesis.

Scott Benner 55:53
No. Perfect. So, like beef? No.

Anne 55:58
I mean, he, he's a very, very, very fussy eater. So he's very limited to what he will eat. So that sort of doesn't help either. But you know, nothing, high fiber, nothing. Really hard to digest nothing. You know, they like easy, simple, quick digesting meals that have got not a lot of bulk in them is what I say. They prefer, which obviously, is really hard, because diabetes likes it the other way around.

Scott Benner 56:28
Yeah, that's interesting. I'm sorry. It sucks to hear that. How does he deal with all of this?

Anne 56:37
At the moment, not very well. He, which is why he's he's we've taken a term off school to try and just give him a rest from all of the stress because schools really, really hard on him. He has, on top of everything else, he has a lot of different reactions to things. So he doesn't have the general wake up and blood sugar rise, adrenaline drops his blood sugar. So as soon as he gets drives through the gates of school, his blood sugar goes through the floor. And we spent all day he spends all day eating to the point where it goes, I don't want it any more food. Okay. And then as as it's getting close to time to come home, all of that food hits skyrocket.

Scott Benner 57:33
So have you tried, have you tried eating some uncovered food prior to school?

Anne 57:40
Well, that's the hard part. Because breakfast is of course, horrible. And you have to give him a good work of insulin to cover his breakfast. Otherwise, he's sky high.

Scott Benner 57:53
And then if you don't, then he gets low. Yes, there's no no winning really?

Anne 57:59
No, there's not really any winning. So we really have to, you know, we really, I live by stay flexible. i The arrows are really, really important for me, if he wakes up, you know, he can make up in range. But if he's arrows down, he will get his insulin over half an hour. But if he's arrows up, he will probably get it by injection.

Scott Benner 58:29
Hmm. Wow. Seems like a lot. Are you okay?

You had five and five, you were good.

Anne 58:47
I know. And I was just getting to the point where I was like, Hey, I'm gonna get a life again.

Scott Benner 58:51
Yeah. Was it really worth the one last time you had sex? Because I'm assuming that was the last time and I would have given up after that. I'd been like, I can't believe we got pregnant again. It's over now. We're not doing this anymore.

Anne 59:06
Oh, yeah. He was my sweet. He was the sweetest little boy. And he was really, he's just I used to say, when he was little that he made my soul sing. And he just, he just was I was just everything he we were such. Yeah, because he was the only one that I ever had on my own, you know? Yeah. Just

Scott Benner 59:31
feel feeling like because all the other ones were just a little older. Right. And it was sort of like, he got the focus. Well, and I'm sure he's still delightful, right? There's nothing

Anne 59:41
he's, he's diabetes has definitely impact his personality. And, you know, he is he is sweet when he's good. But I Oh, he's he can be difficult. You just

Scott Benner 59:57
described Arden's mother. There you go. That's I'm sure he's not just married to me.

Anne 1:00:07
I'm sure my husband would describe me as.

Scott Benner 1:00:10
Yes, she's great when she's okay. I mean, I don't know what the hell happens the rest of the time. I'm sure that's how people describe me as well, by the way. But i Wow, it's really a hell of a story. And it really is what made you want to come on?

Anne 1:00:25
Um, you just put a call out one day on Facebook to say, I've got some spots. Does anybody got a story? And I thought I will. ALS is a bit different. So

Scott Benner 1:00:36
certainly is yours is the only one with giant spiders. Actually, that's about to happen again, on the pod. I'm getting it's may now. And I'm getting ready to open up the 2023 calendar. Wow, I'm booked like straight through 2022. I think I'm I think I'm booked into like February of 2023. Because I had to open up the front end of the calendar to start like, sometimes I hear from people, I'm like, I definitely want to interview you. Can you pick a spot at nine, nine months in the future? Like you'd be surprised? I always just, and if I'm being honest, when I send people those emails, my expectation is that I'm going to get an email back that goes, how about you go off, but instead? Instead I get back? Yes, sure. Great. I grabbed February 23. I'm fairly excited. I'm like, Oh, my God, thank you. I'm so grateful for how like, amenable people are when they're making the, you know, they're making the recording time. So it's really cool for you to do this. Thank you, especially with the time swing is just terrible. And I'm not wrong, right. We messed this up once, didn't we?

Anne 1:01:44
Yeah. Right. And we organized it a couple of times before.

Scott Benner 1:01:49
But I was sitting here and I'm like, she's not here. She thinks this is tomorrow. And we're something because because the time zones are so far off like it's Friday for me, but it's Saturday for you. Is that right? Yes, it is. Yeah. So that gets confusing it by the way, not the first time that's happened, trying to record trying to trying to record you don't have to feel bad trying to record with Australia. It's gone wrong a couple of times, I actually have one coming up in a few months from China. And I keep thinking like, Oh, I hope that doesn't get messed up. But it might you know, because it's confusing. I will pay more attention in the future. I should have sent you an email a little sooner. And we could have talked but

Anne 1:02:29
that's okay. I was glad that you sent me one yesterday and said right, this is the right time.

Scott Benner 1:02:35
Well, I figured let's not mess it up twice. Just let you know, tomorrow at 330 My time, etc. No, seriously, it's really it's lovely of you to do this. I'm sorry to hear that he's having such a tough time. And I mean, there's a couple of things going against them here for sure. And one of them is that he's not getting, I mean that his mom's having to figure this out through the internet is not it's not it's not great news, you know, especially if stuff like this should progress a little bit or even even just for your comfort, like how do you even know when you're doing something? Like for the gas, your prices as an example? Like how do you even know you're doing the right thing, because you're taking this advice from people who let you down so many times already.

Anne 1:03:20
I always take it with a you know, I'll try that and see how it goes. approach. And, you know, because I feel empowered, and I you know, I know that I know more than they do. So I'm gonna change things up.

Scott Benner 1:03:42
Let's hop on them. Well, you're tough lady. And it's it's a very, very laudable personal trait to be able to push through when you're getting bad advice and come out the other side and figure something out for yourself. It's a it's a really big deal doesn't sound like you ever flinched, like when you got bad advice. It sounds like you just kept kept hammering away. I'm thrilled that the podcast was helpful to you. It really is.

Anne 1:04:06
It really has saved us really has

Scott Benner 1:04:09
a really it's wonderful to hear it. Certainly. I especially because you're you're so far away. You know, I know that sounds strange to people, but I'm old and I know the internet reaches the whole globe. But to me it's even crazier that you're in Australia, you know? So yeah, absolutely. For sure. I want to make sure we have have we haven't left anything out or anything like that. I don't want to cut you short, but if I'm being honest, my car was being worked on today and I have a limited amount of time to get to it. I won't be able to have it over the weekend. So I have to get but I just want to I don't want to rush you off. I still have time. I just want to make sure that we've not missed anything.

Anne 1:04:51
Yeah, um something that we've been trying lately and it's only been because he's having so much problems like we still his variability is all over the place, we haven't got to the point where he is a state stable at all, you know, some days he's really low and some days he's high. Once he goes high, I know how to get him down. And he can have an extraordinary amount of insulin. And like, you know, double, triple sometimes and it just does nothing for hours and hours hours, and then he could have a delayed reaction. It would be the next day that it all hits and we face all those lows. So we actually use glucagon instead of food a lot to get him up in micro doses. Yeah.

Scott Benner 1:05:47
Do little micro Bolus is of glucagon. You know what I was just wondering, as you were talking, and this is just happenstance that I had to record twice today, which I don't normally do, but the person I spoke to earlier was talking about a trial that her daughter's in for a Frezza for the inhalable insulin. And I'll tell you, she just talked so glowingly about how those sticky high blood sugars come down and 15 minutes with a Frezza for her daughter. Wow, made me think of it made me think of a decision just said that. So is that available there?

Anne 1:06:19
No. No, it's it's a very long process to get anything approved here. It's really very frustrating. And everybody in the medical world just seems to go oh, you know, we're a couple of years behind everyone else. I think it's not good enough. You know, we get the latest phone as soon as it's released. Why can't we have medical technology as it's released?

Scott Benner 1:06:46
I get an iPhone right away when it comes out. That's not helpful for anything. Exactly. That's it. I wonder if you could buy it. Cash Me, maybe it could, but I don't know how much it would be? Well,

Anne 1:06:58
I'm gonna be pushing them because we have done this trial with glucagon. And like I've used in the last month, 14 vials of of glucagon. So, you know, lots of people say, you know, I've never used it in my life. I use it regularly at night. I never give him food anymore because foods just not reliable. You know, I can't guarantee when it's going to hit. Yeah. And he he could sit at low on his, like, it shows as low on his CGM for an hour, two hours.

Scott Benner 1:07:33
And there's nothing you can do. Except this. But glucagon does work.

Anne 1:07:38
Glucagon does work it's not as quick as as you expect. It's not like a 15 minute nap you go sometimes it's half an hour sometimes it's three quarters an hour before it hits, but it does it is much better and then I don't have to deal with the food hitting at some random time later on.

Scott Benner 1:08:02
Do you do you ever get into a situation where nothing works and you feel like it's an emergent situation you ever end up in a hospital for this?

Anne 1:08:11
Luckily, we haven't. But then I I sort of see other people's posts online and you know hospital emergency departments don't really know about diabetes either. So going in you know they put them on a drip or they give them insulin anything well you don't really know anyway, so I just keep them at home and just keep working it give me more glucagon or giving more insulin you know making take a hot shower.

Scott Benner 1:08:43
Has he ever had a seizure from from a low prolonged?

Anne 1:08:47
He hasn't. But I think I think and that's part of the problem that we're trying to get to at the moment is that I go a lot on how his how he's reacting to me. So if he's talking to me and he's functioning at a higher level and he's able to do everything, I think okay, well that's hid in his brain, it just hasn't reached his extremities. So I think there's a circulatory issue as well. And it's just takes time to get to the outer bits and he can only wear his devices on his arms and his legs because his torso justice too active. Yeah. And even a finger stick. It takes a long time to come up because we do do one every now and again. And but if he's talking to me, obviously he's laying on the lounge and it's semi conscious or whatever. I'm much more aggressive with things. And I have come close to calling the ambulance but I have never actually got there.

Scott Benner 1:09:56
I don't know how you're living like this and you sound like you're either I don't know, like you're not either you're not human, or you're Are you medicated and you? How are you staying even keel during these things here, something taking the edge off, you can tell Scott drink a lot. Hey, he's gonna pass out, I'll have a beer while we're waiting. And I mean, it's a lot of pressure, but then you describe yourself as not a person who feels anxiety or depression.

Anne 1:10:30
And I certainly there are times where I feel down in the dumps about it and feel very low about things. But I tend to pick myself up and just, you know, you just got to keep going. There's nothing you can do. And I think the busyness of our lives is that you don't have time to indulge in that.

Scott Benner 1:10:51
Yeah, that's impressive. It's an impressive trait. It really is. To not give into it and to not be knocked over by it is really something I mean, especially we mean, these are two things you're talking about, they're not gonna go away. If they're not exactly, they're not flexible. So, I mean, the gastroparesis is either going to stay the way it is, or get worse. Yeah, you know, the diabetes. I mean, you know, I mean, we can all hope for a cure. But even if we get one, right, show, you won't get it for five years later, anyway.

Anne 1:11:25
Exactly. That's right. You know, things come out, I find that really hard, you know, things come out. And I'm, I'm on top of what's what's happening in the world. And, and, okay, you know, when Winter's coming out when we're getting it, and you just go, oh, well, two years down the track, I can't get back.

Scott Benner 1:11:41
Every time something happens with any of the companies that I do business with, I get messages from people, please tell them in Canada, we're waiting, please tell them in Australia. When are you coming to here? You know, like, it's, I think you talk to them privately. And they're like, we're trying like, you know what I mean? Like, it's, it takes a lot of staff and a lot of money and like to get law, you almost have to open new offices. And you know, it's it's a big undertone.

Anne 1:12:05
I know, it's crazy. And even with his pump, I said, every every time I renew it, because you sort of renew it every 12 months and say, Okay, tell me about, you know, we got plans for CGM. Have you got any you know, I want I want an algorithm because I think that would really make my life easier

Scott Benner 1:12:24
has made me wonder while you're talking, especially because I just had a meeting today with Omni pod were I you know what? And I'm going to tell you something, and you just don't tell anybody else. Okay. Okay. And because this will come out so much later, it won't matter. But okay. I, I suggested to on the pod. And we're going to do a small series of instructional episodes about on the pod file. Awesome, right? And the reason it made me think of it is because this, this algorithm of theirs is really a learning system like it, it takes from what happens before and makes different adjustments. And I did wonder, I wonder if it couldn't figure out the slow way that your son's I mean, like, I'm just guessing here, but I wonder if it couldn't find a pattern in his digestion? Do you know what I mean? And like if that, because that, because if it could, and I have no idea if it could or not, but I'll tell you right now, I made a note for myself to ask somebody. I, it would just be such a blessing if like, it could even just help you a little bit.

Anne 1:13:29
Oh, absolutely. Yeah, absolutely. And, you know, when we did do the Nightscout, we learned a lot about it. That, you know, putting in the stuff, you know, that we had never ever even thought about taking doing a zero rate or doing a 200% rate or whatever. And that's all we use. Now. It's either zero or 200. And he's got crazy Basal rates that go from like point one to 3.8 during the day. And

Scott Benner 1:13:58
so no Nightscout sort of teaching you how to think like an algorithm, right?

Anne 1:14:03
Yeah, yeah. So then I'm the I'm the one that's done all the changes that it's sort of saying, we don't do it all the time. But we do do it occasionally. If I think I really lost I think we need to go back and have another look or whatever. But generally, we just you know, stick with unless something's really coming up saying this is a pattern. We just have to stay flexible and deal with whatever's happening at the time and if he's you know, low return is Basal rate off and if he's high, we turn right up. But also he can only have this as another crazy thing. He can only have two units straight up through his pump at a time. So if he's having a big Bolus, he gets a bone injection.

Scott Benner 1:14:54
I say, Wow.

Anne 1:14:56
I need that we need the pump. Definitely for basil because you Yeah, and injectable one doesn't work. But he doesn't always get his boluses through for food through his pump.

Scott Benner 1:15:08
I see. But you absolutely have you need the power of shutting off the basil and doubling it up that absolutely. It's interesting like you took the more fringe aspects of how I talk about diabetes, and they're your main management ideas. Oh, absolutely. So cool. Absolutely. Yeah. Absolutely

Anne 1:15:27
lost without them.

Scott Benner 1:15:28
I didn't mean to speak over that. If you were gonna say something nice about the podcast, let me be quiet. No, no. Thank you. No, I mean, I just think you're talking about some of the bits that are a little more like, oh, once in a while, you might need to bump it this way or that way or shut your basil off or something like that. But it's a it's a big part of your day.

Anne 1:15:48
Oh, it's Yeah, absolutely. Crazy. Absolutely.

Scott Benner 1:15:52
Very crazy. Well, I'll tell you what, in those birds did not stop the entire time. i At the beginning, I found a YouTube channel that has like a video of them. And I thought oh, it'll be fun. Like I'll play play it again at the end. Except nobody needs to hear what it sounds like. Because they were just going the whole way. No, I found that I actually found that to be nice. I felt felt like it felt different, which I enjoyed. I do have to go though, but I want to thank you very much for doing this. Oh, thank you. It was it was a pleasure to talk to you. Oh, you as well.

A huge thank you to Anne for coming on the show and sharing her family story. And thanks to those birds. Or they call it again. Cuckoo cuckoo. I don't know. I'll make it the title coupe Carrera. Who could I don't know cuckoo cuckoo baby. But there's a preference no one's gonna get. Thank you so much for listening. Don't forget to check out the private Facebook group Juicebox Podcast, type one diabetes, find those series that you're looking for diabetes pro tip, and on and on. They're all there. They're in your app. If you're enjoying the podcast, please consider leaving a five star rating and a thoughtful review. Wherever you listen. Thank you so much again for listening. I'll be back very soon with another episode of The Juicebox Podcast.