#794 Omnipod 5 Reset

Cate's child has celiac and type 1 diabetes and he uses Omnipod 5.

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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 794 of the Juicebox Podcast.

Kate is here today her child uses Omni pod five, and they've done a reset of the Omni pod five. So it's a big conversation. But somewhere I don't know about 40 minutes in we're going to talk about how they started over with new settings. You'll see. 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 for becoming bold with insulin. If you're looking to start with on the pod five, or you've gotten started and want to know more, I have a three part series that I produced with Omni pod all about it. You can find it at juicebox podcast.com forward slash Omni pod five, or by going to episodes 736 737 and 738. Do you have type one or are you the caregiver of someone with type one? Are you also a US resident? Well, you're in luck, because if you go to T one D exchange.org, forward slash juicebox you'll be able to join the registry. Fill out the survey help people living with type one diabetes, move diabetes research forward, help yourself maybe get involved in research yourself if you want support the podcast so much is going to happen when you go to T one day exchange.org forward slash juice box and complete that survey. This episode of The Juicebox Podcast is sponsored by Omni pod makers of the Omni pod five, and the Omni pod dash. To get started today. Go to Omni pod.com Ford slash juice box. You can be tubeless and automated with Omni pod five or tube listen. Well not automated. Without the pod dash to grade systems. You take a look see which one's best for you. The podcast is also sponsored today by the Contour Next One blood glucose meter. This is my favorite blood glucose meter. The best one I've ever used, held touched, or thought about in my dreams contour next one.com forward slash juice box. There's a number of reasons to love the Contour. Next One, and I'm gonna tell you all about them in just a little bit. Today's show is also sponsored by us med. Get your diabetes supplies the same way we do from us med go to us med.com forward slash juice box or call 888-721-1514 When you go to the link or call the number you can get yourself our free benefits check to get started right away. We get on the pod and Dexcom from us Med and you could too as well as a number of other things they'll tell you about me.

Cate 2:50
My name is Kate. I have three children, all boys that are 10. seven and five. I am teacher at the school that they go to. And my 10 year old Grayson has type one diabetes and celiac disease

Scott Benner 3:08
10 Seven, five.

Cate 3:11
Yes. All boys. All boys. Yep.

Scott Benner 3:15
I send you a picture what my mom looks like now because that's your future.

Cate 3:19
Oh my god. Yeah, the hardest part about setting this up is just like making sure like they aren't here so that they don't come in the room a million times.

Scott Benner 3:28
So while you are getting this together. Yeah, we're tiny bit of technical difficulties. I thought that I heard a young man yell. Oh my god, the cat got out.

Cate 3:38
Yeah, that was Grayson. So the little to my younger two boys, I got out of the house because there's I can't function with them here. And my oldest Grayson is still here. So I'm like, you have to take the dog like that's your job, get the dog in your room. And he left the dog out when he was trying to help me with my headphone issues. So.

Scott Benner 3:58
Okay, and when you say the other two, aren't there? Yeah. Are they alive? Because it's, it's early in the morning. Like, where are they at?

Cate 4:07
Yeah, I just told them to go, you know, outside. I locked the door and they'll be fine. They'll entertain themselves for an hour

Scott Benner 4:12
in the street. Right? Yeah, absolutely. Well,

Cate 4:15
I don't know. No. They're there at the museum for the for the morning, which is good.

Scott Benner 4:20
Oh, I'm just putting it together. Now why you can do this. Today's Columbus Day.

Cate 4:24
Yeah. So we're off from school, which is good, because I'm available. I'm not working but also not good because the children are home. So yeah, it's

Scott Benner 4:33
not not a real day off. The boys are by themselves or there's somebody with them?

Cate 4:38
No, they're, there's somebody with them. Okay. They're supervised by an adult who was surprisingly willing to take them and we'll see how that goes.

Scott Benner 4:48
We lived on a very busy road. So okay, yeah, I mean, people might be imagining just like a street where like you But cut through town or something but I'm telling you we lived on a on a five lane road. Oh God, my house. It's terrible. My house was 25 feet from the sidewalk. And if it was constant traffic, and there during the summer as a matter of fact, like when the sun was shining at the at the front of the house if a truck or tractor trailer would go by and it would eclipse the room it would scare the hell out of you like it was like that. And we want through my younger brother, but naked out. So,

Cate 5:30
yeah, that's pretty much what it's like around here. Like, I live in a neighborhood but people drive really fast. Which is crazy to me. I'm kind of like on a curb. So I feel like you really can't see the kids if they were happened to run on the road.

Scott Benner 5:44
Well, if they're Neko

Cate 5:46
Oh, yeah, absolutely. They would be like glaring, but they like last year when I moved in here. I bought this thing on Amazon. It's, it's uh, it looks like the construction gate. And it goes at the end of your drive. It's like this big orange. Oh, I know. Yeah. Yeah, Master gate. And so it stops them from like when they're playing basketball, running into the road, like Chase her ball. Now as you come in the neighborhood, like the lady with the gate, like I went to a block party and people like, oh, yeah, you're the house that has like that orange gate.

Scott Benner 6:17
So yes, because my kids will run into traffic. Do you understand? Yeah.

Cate 6:21
Which makes me sound like a really good parent. So

Scott Benner 6:25
let's get this recorded before these kids kill you. Because it's probably not gonna it's not gonna take much longer. Oh, no, for sure. Okay, boy, mom, here we go. Your 10 year old is the type one he also has celiac and tell me his name again. Grayson, right? Yeah, Grayson, yeah. Okay. All right. So how long has Grayson had type one?

Cate 6:45
He was diagnosed in July of 2021. We're like, just over a year.

Scott Benner 6:51
Okay, pretty recently, celiac before or after diabetes?

Cate 6:56
It was they told me, Well, they apparently tested him, like at the diagnosis of the type one, but I didn't know that. And they called me like, 10 days later to tell me that his celiac

Scott Benner 7:07
panel was positive. Had you noticed anything about it before?

Cate 7:10
No. Like he literally had no celiac symptoms at all. It was like, switched on when the diabetes came on?

Scott Benner 7:19
And is he keeping a celiac diet?

Cate 7:22
Yeah, yep. So she's been on that for about a year. Did

Scott Benner 7:25
the rest of the family change with him? Or did you? Yeah,

Cate 7:29
for the most part, yes. You know, and that's like, tricky, because my little boys sometimes don't understand, like, why can't you know, we went to like a farm this weekend, for like a fall thing. And they want apple cider doughnuts, but there's no option that's celiac, you know, friendly. And so that's been a little tricky. But over the course of the year, like, I'm starting to learn how to bake things to to supplement the things that they all want. So if one wants donuts, then we can figure out a way to make a doughnut for gray or find you know, an option. We're lucky to have some grocery stores around that are celiac friendly. So that's been good. But for the most part, we all eat gluten free.

Scott Benner 8:07
Okay. What are his symptoms? If he has gluten?

Cate 8:12
He is like immediately sick, like in the bathroom? Like lots of diarrhea.

Scott Benner 8:19
Well, that'll. That'll make you eat gluten free. That's for sure.

Cate 8:22
Yeah. So that I mean, not that I want him to have those symptoms. But I know like people that don't have bad symptoms, I could see that being hard to stick to, you know, a celiac or gluten free diet, but because it makes him sick, like he doesn't want to do that.

Scott Benner 8:37
Well, Caitlin, I now feel absolutely compelled to say that I have learned through the podcast, that even if you don't have symptoms, you can be doing serious damage to the internal portions of your body, which could lead to things as serious as cancer. And if I don't say that people with celiac will yell at me online. So I now.

Cate 9:02
Yeah, I heard that episode where I appreciated the woman. I can't remember her name, but she came out and I think she had written you an email about how like, you can't just like eat the cupcake. Yeah, no,

Scott Benner 9:12
I got the cupcake. I'm not even bringing that up. Caitlin. All right. Well, I'll bring it up. All. All I did was this guy was having serious mental health issues. The Father Yes. And his son, had I got guests gotten a celiac diagnosis but was having from what I understand, like no symptoms whatsoever. So you could either hand listen, if celiac was a thing, he could eat a handle full of it and nothing happened to him. But then obviously there's I said obviously because I do not want to get yelled at but obviously there are there are still impacts that can be had even though you're not seeing them physically, that are fairly serious and up fairly serious up to really serious And I was trying to make the point that while the guy was figuring things out, yeah, maybe just let them have the cupcake. Because also, I would like to say, Kate, that He also described a scenario where the kid wasn't really having cupcakes. It was just this. He was. You have to go listen to it. He was in a panic.

Cate 10:18
And yeah, I heard I heard it. I know exactly what I'm talking about. Yeah.

Scott Benner 10:21
It was like he was he was having real trouble. And he, he couldn't add one more thing to his plate. And, and he's like, Well, what about at a birthday party? Like he was crying? Like, what about your birthday party? He wouldn't be able to have a cupcake. And I was like, Well, does he have a lot of cupcakes? And the guys guys like, No, you I'm like, does he go to a lot of birthday parties? He's like, No, I'm like, well, then until you can pull this together. What if you just let him have the cupcake. And then the letters came?

Cate 10:47
Yeah. It's funny, because the reason why Grayson is still here is because he's actually going to a birthday party today. And so he's he's getting picked up in a little while. And like, it is a thing where like, I have to pack a lunchbox with gluten free pizza, the gluten free cupcakes, they're going to a sports place where they're going to drink Gatorade. So I've got it, you know, sugar free Gatorade, and you know it, I could see what he was saying where it like feels like another like another hit that you're like, God, like the diabetes was bad enough. Now this and it's more annoying sometimes. Because I don't want to like, bake and cook all this stuff in preparation for my kid to go to a party. You know,

Scott Benner 11:31
I completely understood which was why he was trying to save him into Yeah, until he was Josh. By the way. Josh has been on twice. He's an incredibly like, open. empathetic, yeah, person. His episodes are called Josh has all the fields. And Josh has added more fields. So go listen to them. And please don't write me a note and yell at me. But yeah, but food quality. I mean, I I listen, it's not the same thing. But Arden has been at college now for about a month. Yeah. And the quality of food at college is not what it was in our house. Right. And we are like fighting with almost every meal Bolus, because the food, the food's just not as good as what she eats at home. So, I mean, there's part of me that feels like I'd like to be walking around behind her hand in her lunchbox every time she went through me.

Cate 12:24
Yeah, you know? Yeah, yeah, for sure. And I think that's the thing in the first year, like, I definitely understand, you know, from listening to so much of your podcasts, like what needs to be done. It's just it takes experience to figure out like, how do I Bolus for this thing that he hasn't eaten before, like yesterday, he had a chocolate pudding. He's never had pudding before. And like, you know, something happens that you don't expect you have to figure out like, how to Bolus for each food. And once you have that, you know, under your belt, I feel like eventually it'll get a little bit easier. But we still are fighting with a lot of, you know, meal Bolus, especially with the gluten free food because it just hits a lot harder.

Scott Benner 13:04
Yeah, gluten free doesn't mean low carb. That's for sure.

Cate 13:07
No, it's like twice the carb when people say they're doing a gluten free diet to lose weight. I'm like, You're crazy. Like you got it wrong.

Scott Benner 13:14
Do you remember me saying on the podcast once the doctor made me go gluten free for a month to test something? And I was like, Oh, I'm eating healthy. I gained 10 pounds. I was like, Wait, yeah.

Cate 13:23
Yeah, it's definitely not good. And like when I say we eat gluten free, like I primarily eat mostly gluten free, but I don't eat any of the gluten free products. You know, Grayson does because he's a kid and he wants a sandwich. And you know, he wants pretzels and things like that. But they they definitely are all made with like rice flour and things that are really hard to Bolus for. So that's been tricky.

Scott Benner 13:45
Yeah, you definitely have to be careful. Gluten Free can also mean processed. Yeah, with a lot of those a lot of those prepared foods anyway. Okay. So, keep that's not really why you're on today. Right? You're on because Grayson has been using on the pod five? Yes. Okay. So how was he managing? I almost said straight out the gate. And I don't know why.

Cate 14:12
No, that's what it's gonna be called, isn't it?

Scott Benner 14:14
Oh, no, I don't think so. Because that's my phone. Because I said, Hey, how was he managing straight out the gate? And then I thought, there's a phrase I've never used before, but, okay, I didn't get a ton of sleep last night. So this could get hairy. But no worries, no worries. But when he was diagnosed, and he and he came home, what do you have?

Cate 14:33
So we left the hospital with pens, you know, pretty much like everybody else. And then I would say within about a month he we got him on to Dexcom which was very helpful. And I'm kind of like the type of person like I don't like to wait when I like make a decision. Like I knew pretty early on that I wanted him to pump and he was a little bit nervous about that. So we you know, It took some time settling in, but I had joined a local support group and I, you know, was talking to them about pumping and how the, you know, the endocrinologist wants you to wait six months or a year or whatever. And the ladies in the support group were like, No, you don't have to do that, like you can. You don't even need to go to the pump training. You just research them on your own, decide what you want and tell them and they'll order it. And I was kind of like, Oh, I didn't realize like, I could just tell them what I want to do and skip, you know, their their rules, per se. So probably within like three months, maybe I think November he started on Omnipod dash.

Scott Benner 15:37
Okay, so in a month Dexcom and a few more months Dash. And then how long ago did you start five?

Cate 15:44
He was he started on the five at the end of May.

Scott Benner 15:48
May, June, July, August, seven months ago. About?

Cate 15:53
Yeah, it's a pendant lamp. Well, June, July, August, September. Yeah, maybe like five months or so

Scott Benner 15:59
five, six months? On the five. Yeah. And all right. So when you first started it, you were pretty some it's it feels to me like you got it right away when it came out. Is that about right?

Cate 16:13
Yeah. Yeah. Like I said, I'm not super patient. So you know, I was waiting, I got that email that everybody got from Omnipod saying it was available. And I called my endocrinologist that day. And they were like, What are you talking about? Like, they didn't even know that, you know, it was rolling out. So that was fun. And they didn't know how to prescribe it. They were like, we don't have codes yet. Like you just you've got to wait. So probably a week went by until my endocrinologist put in the script. And then when it got to the pharmacy, then the insurance became an issue. So I had like a two or three week battle with my insurance company to get them to cover the intro kit, which has like the PDM in it, or the controller. Yeah, I

Scott Benner 16:57
think they figured that out that all that coatings figured out by now. But yeah, I remember that. Yeah.

Cate 17:02
Yeah. So like I was calling our insurance company all the time, like, trying to figure out why wouldn't go through why were the pods covered and not the controller. And finally, one day, I was just so fed up with it. I just told the people there, you know, they are diabetic experts. Like, they were like, no, no, it has to go through DME like it definitely does it. And you know, we're having this battle. And the lady was thought I was talking about the Dexcom. Like, she was confused. And I was finally like, I just want to speak to your manager, like whoever's above you like, I just, I'm ready to just move on from talking to you. And my kids thought that was hilarious. And like, called me a Karen, they were like, You asked to speak to the manager? I was like, I'll do it. You know,

Scott Benner 17:48
okay, at one time, I said, you know, I need to speak with your manager. And there's nobody here above me. And I said, I find that completely hard to believe you're in charge. Even as I was saying, and I bought it sound like a thick, but whatever. Yeah.

Cate 18:03
Yeah, it's fine. I'm like, if I'm gonna get what we need here, I'm totally fine with owning that Karen status for a little. So eventually, they, they did. I talked to the manager, and he literally was like, I'm just going to override it. It's fine. And I no joke had the pump the next day.

Scott Benner 18:20
He's like, will you hang up? If I do this?

Cate 18:23
I know, I'm like, God, I should ask the manager more often because we got what we wanted.

Scott Benner 18:28
Okay, so on the pod five comes. So the picture we're painting here, because by the way, all those insurance problems that you just described, where we're like a launch issue, it doesn't exist anymore. Like nobody's gonna tell you, you can have the pods but not like your stuff like that. So. But it's an indicator of how early on you were into it. So you had it before I even put out those three episodes about starting on the pod five, right?

Cate 18:55
Yes, sadly, yes. Because we were, I was like, kind of jumping in blindly with what to do with it.

Scott Benner 19:02
So you know, if you go back and listen to those three episodes that I made in conjunction with AMI pot about starting on a pot five, you're gonna hear that the closer your settings are to a 5050 split between Basal and Bolus insulin, the easier time that the algorithm is going to have getting itself set up and straight so when you started it the first time do you remember how you had your settings?

Cate 19:29
Yeah, we definitely I did not put in settings that were aggressive enough for sure. So I think we were definitely also relying on basil.

Scott Benner 19:41
Krishna one job here kale. You know, and I mean, you didn't let him down you got on the on the pod five right away when he needed it. Now. This kid can't hold on to the stock. What do you think he's doing that I thought right or do you think he's ignoring it going? Like I asked my son that take the dogs to take take care of the dogs And I come down. I'm like, Hey, you took the dogs out. You just not yet. I mean, you've been down here for half an hour. Yes. They don't seem to be in a hurry. And I was like, well, when they peed on the floor, or whatever they're gonna do if you don't let them out like, well, you clean that up. And he was like, no.

Cate 20:15
That's about it. Yeah. Well, FedEx truck just pulled up. And so that's what he's barking at. And I'm sure like gray clearly has already forgotten that.

Scott Benner 20:24
He's been talking for 20 minutes. So yeah, I'm sorry. I apologize. So you I'm sorry. So you said you set it up with your settings. How are you? How are you? I guess my first question is when you were on dash, were the settings like super tight? Was he super stable at a low number or were you still working that out? US med carries everything from insulin pumps and diabetes testing supplies to the latest and CGM, like the FreeStyle Libre three and the Dexcom G six, and we get Ardens on the pods from us med. As a matter of fact, US med is the number one fastest growing tandem distributor nationwide, the number one rated distributor index com customer satisfaction surveys. And they're the number one distributor for FreeStyle Libre systems nationwide, you're gonna get better service and better care from us Med and that's what they've given to the over 1 million diabetes customers that they've helped since 1996. US Matt accepts Medicare nationwide and over 800 private insurers. 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I know you're thinking how much information could I need Scott about a blood glucose meter. Well, I don't know how much you need, but it's there at contour next one.com forward slash juicebox. Here's what I think you need to know. In a nutshell, easy to carry, easy to hold fits in your pocket or your purse. Bright light, easy to read screen test trips offer Second Chance testing in case you don't get enough blood the first time, which is not to say that it needs a lot of blood. It uses a very tiny drop. But if for some reason you fumble around you don't get it but you get some you can head back get the rest without ruining without ruining. I'm just gonna keep talking without ruining the Jesus mother of God. It's Sunday night I'm sorry, without ruining the accuracy of the test or the strip itself which will save you money and give you peace of mind. You deserve an accurate blood glucose meter. And whether or not I can say my words or not, doesn't matter. This is the one you should be getting contour next.com forward slash juicebox. We've been using it for years. It's terrific. Okay, last one today guys. Omni pod five. Now the Omni pod five is the only tubeless automated insulin delivery system that integrates with the Dexcom G six CGM and it uses smart adjust technology to automatically adjust your insulin delivery every five minutes, helping to protect against highs and lows without multiple daily injections. And you have the option to control it from a compatible smartphone. The Omnipod five is also available through your pharmacy, which means you can get started without a four year Durable Medical Equipment contract that comes with most other insulin pumps. This counts even if you're currently in warranty with another system to get started with the Omni pod five, just go to Omni pod.com Ford slash juicebox. I mean, we're talking about it today, you've only heard half the story. Where do you hear the rest of it? I think you're going to be running, not walking to get an omni pod five, for full safety risk information, free trial terms and conditions, as well as a list of compatible smartphones. You can also go to omnipod.com forward slash juice box but I just realized I said free trial terms conditions but I haven't told you about any free trial. So let me just tell you that you may be eligible for a free 30 day trial of the Omni pod dash now that's not the only part five not the automated system. But the dash which is an amazing tubeless insulin pump that you control Omni pod.com forward slash juicebox go find out which way you want to go you want to go five you want to go down Ash, you want to try the free 30 days, it's up to you really get in there, fight for yourself, whether you're looking into Omni pod Contour, Next One or US med or any of the sponsors, please use my links when you click on my link, it supports the show. Those links are available at juicebox podcast.com. In the show notes of the podcast player you're listening in right now or in your head, if you remember just the type of in a browser, all those ways count. Thank you very much.

Cate 25:29
I feel like for being in our first year, I was really happy with how we did on dash when he back in April only got to say once T after he had been on dash, you know, for about six months. He was at a 6% which I was happy with. Yeah, and you know, it's not do I think some people run lower? Yes, I would say he was averaging around like 121 30. Somewhere in there. Which you know, for an active 10 year old it was working for him. It was a lot of work though, for us. Like we were doing a lot of like Temp Basal, like constantly trying to adjust and give a little bit more and take a little way to keep him in range, which was difficult,

Scott Benner 26:15
right? Which means you don't know exactly what his settings were because you were adding. Right. Okay.

Cate 26:22
Yeah, yeah. So I, we had done some basil testing. And at that time, I was working with Jenny. So she was really helpful and helping us kind of tweak things here and there. And I felt like we got to a point where we were doing okay, like his setting seemed good. But I do think looking back now we were probably relying a little bit on his Basal. So his ratio, it was not 5050 When he looked back in his settings, so

Scott Benner 26:50
you're saying you had like a heavy Basal rate? Yeah. So yes. Okay. So you were bumping around a lot, because you were feeding the insulin and then going back up? Yes, yeah. Okay.

Cate 27:02
Which I could kind of do at the time because Grayson went to the elementary school that I work at. So I would like to sneak down to his room and like, give him a little more take a little way. Like I was doing a lot of management during the day at school,

Scott Benner 27:15
and the kids who were teaching can't count now, is that correct?

Cate 27:19
Well, I teach reading, so they, they might be able to count but um, they might be below in reading. So

Scott Benner 27:25
I don't know this word but Grayson's Okay, so everybody's,

Cate 27:29
yeah, they totally new like, they do the chaos of like, diabetes. And, you know, sometimes a kid came with me, I'm like, Hey, Grayson's low on the playground, we gotta go find him. You know,

Scott Benner 27:41
let's go on an adventure. Or as I call it at my house, how?

Cate 27:46
They were fine with they're like, Oh, we're getting none of our lesson plan. Right?

Scott Benner 27:49
Yeah, right. Yeah. You're not gonna make me read? I'm down. Yes. So when you start it? I mean, I guess just tell me how it went for you the first couple of weeks.

Cate 28:00
It didn't go great. In the beginning. Like all of a sudden, we were seeing a lot of highs after meals. And you know, we had some lows, the night time was a little bit better. I know a lot of people have said that too. But what I ended up realizing was that his carb ratio was very wrong for the Omnipod. Five. So we ended up switching I think he was at one to 25 when he was on Dash. And we ended up at like one to 15 Eventually. On Omnipod. Five, like Jenny had told me Jenny was like, I would put it down to one to 20 I'm like, what that's like, way too much. That sounds crazy. And she was right. And then some because we definitely needed more insulin at mealtimes, for sure.

Scott Benner 28:44
Yes, she was trying to move you incrementally and you weren't moving. Were you? I

Cate 28:47
was just, I was nervous. I was like, Oh, I'll try like one to 23 like I just did it very slowly.

Scott Benner 28:56
Do you ever think of this from Jenny's perspective, because I just occurred to me like, like, your call ends and she just like smacks her head on the desk and goes

Cate 29:05
I feel like Jedi and I, I feel like we've got each other because there was a couple of times I was on the call with her. And like, all three of my kids are jumping on my bad like she's a boy mom. I'm like, life is crazy over here. You know, she got it.

Scott Benner 29:18
Yeah. It's nice. It's also interesting to hear. She's very good at what she does. Oh, yeah. Yeah. I don't even know if how well that translates when she's on the podcast. But yeah, having her help you with something is a is a hell of a bonus. That's for sure. Yeah. Okay. So you finally listen to Jenny, you move the carb ratios a little bit. But yeah, I think I'm not gonna say the problem. But the issue here is that the algorithms trying to learn and what you told it up front was pretty far off. I mean, one to 25 versus one to 15. Yeah, it's a big difference. And yeah, and so you were that far off on the carb ratio. How what about the Basal would you tell the bay Isn't wasn't started

Cate 30:01
the Basal I had him set when he was in manual mode for something like I would say 8.5 units a day. Yep. And I would say averaging now when I look through, he's getting like 10. How would you like 10 to 11 units of Basal, I believe,

Scott Benner 30:23
okay. Let's just tell people 8.5 divided by 24 is point three, five ish. And what are you happy now? More like 10?

Cate 30:33
Yeah, like, I would say like 10 and a half to 11 Some days.

Scott Benner 30:37
Let's say 11 For fun. And we divide 11 by 24. And that's point four, five an hour. So an extra point one an hour. Which mean, he's 10 years old. Probably hasn't hit any kind of puberty yet. What he probably what weighs like 85 pounds, like in that space? Yeah, yeah, I

Cate 30:54
think he's 80 pounds right now.

Scott Benner 30:55
Okay, so yeah, so that's a fair amount of change point one an hour for basil. And then this is the a big eater. Like, how many carbs is a meal ish?

Cate 31:09
Um, yeah, he we are definitely not low carb by any means. He's a big eater. He likes to eat all day long. I mean, I don't even want to say it. Like, sometimes the school nurse is like, seriously 120 carbs for lunch, you know? Like, he definitely eats a lot of carbs.

Scott Benner 31:26
Okay, so So that's interesting, because like that many carbs 120 carbs divided by 25 is 4.8 units. But 20 carbs divided by 15? is eight units.

Cate 31:39
Yeah. Which he never yeah, like I was eight units is is probably high for what he gets. But like, I would say on average, I try to pack him for lunch, around 80 grams.

Scott Benner 31:51
Okay, we'll see. It's funny. Kate, you're hearing my statement from a different perspective. You're like, don't tell people he eats a lot. I'm not I'm saying look at the difference between how much insulin a meal needs versus what he was getting. So there was a moment where he was getting 40% less insulin than he needed. And point one an hour basil. And then you're asking the algorithm like keep him steady. But here's what I told you versus here's what he needs. Yeah, yeah.

Cate 32:21
So like, we must have just been doing a lot of corrections and a lot of like, you know, adjustments to his Basal during the day to try to accommodate for all of those things. It felt like a lot of work to keep him in range. And obviously, we just, you know, didn't have his his settings quite right. Yeah. But of course, when you go to the endocrinologist, they saw as a one C six in April, and they're like, Okay, yeah, you're good. Keep doing whatever you're doing. So there's wasn't a whole lot of like, guidance into like, maybe you could change this or that so that you're not having to like, set Temp Basal all the time,

Scott Benner 32:59
where you had you listen to the Pro Tip series of the podcast?

Cate 33:04
Yes, probably like three times through.

Scott Benner 33:06
Because the one you missed was bumping nudge to the one where I say, Hey, if you're bumping and nudging a lot, your settings?

Cate 33:13
Yeah, yeah, a quarter percent? No, I definitely listen to that. What's funny is like, I think I listened to them too early in his diagnosis where I didn't fully understand what everything meant yet. I just like stumbled upon the podcast and started listening. And looking back. Now, if I was gonna do it differently, I was listening to like, the defining diabetes, like really learning what all these things are, and then listening to the protests, but that's why I listened to them more than once. Because six months later, you're in a different headspace where you're like, Okay, now I know what he's talking about. Yeah,

Scott Benner 33:48
I've heard that a lot from people. Okay, I'm just pointing out for people listening, not explaining something UK that you already know, at this point. But if you're forever fixing blood sugars with a little more insulin or a little more food, then there are settings that you could have that would make stability that would keep you from having to make those adjustments so frequently. Yeah. So.

Cate 34:10
And the other issue, I think we had to is pretty quickly into starting on Omnipod. Five, the controller started having app errors. So I don't know if you've experienced that, but it would just like it would almost look like it was on a loading screen. And then when it would go through the little loading almost like it was updating it then it would like be really loud and say app error, call it in. And the first time it happened, I hit okay, like I'm gonna call it in and the screen went, that notification went away. And it was working fine. I'm like, Oh, that was weird. I don't know what that was. And it was already gone. So I'm like, Well, I don't I don't know how to like, call that in, you know,

Scott Benner 34:53
right. Yeah. Go Yeah, it happened. What? Well,

Cate 34:57
that happened many times. And we made the mistake of just waiting too long to, to correct that and get in touch with Omnipod. And we ended up with a new controller in July.

Scott Benner 35:12
Okay. All right. So you fought with the problem you didn't have to fight with, if you were to call them and tell them they would have been like, just give us an update. We'll give you another one. And 100% Yeah, stick with it for a while. We didn't have any errors with the controller. But I do remember it beeping at times where Arden was like, why is it beeping? Yeah, the same thing you did. I was like, I don't know, I don't have time to figure it out.

Cate 35:36
And like, I feel like subconsciously, I knew that if he got a new controller, we had to start all over with the learning. And I was thinking that that wasn't a good thing. I'm like, I don't want to do that again. And he was in July, he was heading to diabetes camp. So I was like, I really don't want to start on a new controller, you know, a week before he goes to camp. And so I waited until he got home. And then we started him on the new controller, which actually ended up being a good thing. Because this time i i feel like i put in more aggressive settings. And the learning happened much faster.

Scott Benner 36:11
Okay. Yeah. So there's the irony, right? You? Yeah, if you want to just call it about the controller, you would have had to restart. So this is this is I think, if I'm remembering correctly, why was excited to have you on because you had this experience of setting up on the pod five with settings that probably weren't so good. And then having to restart which made you rethink your settings? Because I'm assuming when you put them in the next time, you use different settings, is that right? Yes. Yeah. In the end, can I ask you Would it have been as easy as just taking his total daily insulin? Dividing it by five by half? Putting? And then like, I don't know, let's just make up a number. Let's say his total daily insulin was I mean, I guess we could actually figure it out. 10. Let's just say it was 40 units. Let's I'm sure that was a big number. But if his total daily was 40, then you could take 20 of it. divided by 24. Tell him that is Basal rate is point eight ish. And then tell it the total daily insulin is what it asks for. And then that would have been it like just going to a 5050 on total daily, do you think that's pretty close to where your settings were?

Cate 37:20
Where do Yeah, I think I think you could probably do that, like I, I might have made it like far more complicated than it needed to be. When I set up the controller, the second time, I, you know, I want the basil, I can tell you exactly like what hours of the day he runs a little lower and what hours he runs a little higher. So he's never been on like point three, five every hour of the day. So it's like lower between 12 and 2am super high in the morning hours, you know, higher Basal between like eight and 10pm when he gets a little bit of a spike from bedtime snack. So I didn't want to just do that, because I wanted a really good Basal in case I needed to get into manual mode. So I you know, he's still got that like, very adjusted sometimes the Basal tie some hours, it's set low, it still looks like that now, gotcha.

Scott Benner 38:15
No, I I'm, I'm actually just looking at Arden's Basal right now. And hers is running at like, almost double what it says that she's asleep at college, or no, she's on her way to class now. She's probably on her way to class now. But yeah, I mean, it's, it's amazing to watch the algorithm work, right? Like, take it away, give it back, you know, it's a give you extra give you less, it's pretty, it's pretty cool, actually. But, but so in, I don't want to, I don't want to be the one that tells everybody reset your system, if it's not working the way you want it to. Because I don't know, I don't know that that's a cure all. If you're having if you're unhappy with how the algorithms work, and maybe there's other ways that you could be messing this up, too. You can be miscounting carbs significantly, there's, you know, there's you could be eating a lot of fatty foods and not covering it. And, like, so I don't know everybody's situation. But it is interesting to hear that this happened to you. So prior to the controller change. What do you think? Like, Where were your average? I don't know how to ask you to measure. Yeah.

Cate 39:23
Well, so what's interesting is actually he had an appointment at the endocrinologist in July, like, so three months, you know, into being on the system right around the time when we were about to switch controllers. And we got as a one C back because I was like so curious to see like, what's going to happen to his agency like now that we're on this different system. And so going from April to July, he went from a six to a 6.1. Okay, okay. So I mean that a huge,

Scott Benner 39:56
right, it was a creep, like in that direction.

Cate 39:59
Yeah. So which, which makes sense, because, you know, I think we didn't have the settings right, you know, you're trying something new, it's, it's definitely not, you know, just set it and forget it, there's still a lot of, you know, thinking that has to be done, like you said, you know, get a cell card count, right and make sure your settings are right. There's still a lot of variables,

Scott Benner 40:18
putting the putting the six to the six point wine aside for a second. What, what's the variability like? In the beginning? Like, was there a ton of stability? Where you higher than you wanted to be a great deal of time? Are you finding lows? Like, what was the actual usage? Like, before you made the changes?

Cate 40:36
I would say we weren't really fighting a lot of lows. I think the system does a good job of being conservative and avoiding a lot of lows. I mean, the only time we really were seeing lows was like, if he would go swimming, and you know, he. Okay, I lost you. intense activity. Okay, that might have happened. I'm sorry. We were definitely still fighting. So

Scott Benner 41:03
I'm so sorry. I lost you for a second. I lost you after the word swimming.

Cate 41:08
Oh, so like, if you went swimming, you know, and he's in the pool for an hour and was away from his Dexcom. You know, he might come out and end up low, like some things like that, I think are tricky to control. But for the most part, we were still fighting with some highs.

Scott Benner 41:26
Okay. And high being what, like in your mind, what's the number that makes it high?

Cate 41:31
Well, I don't really like him running over 200. But mostly, it's like mostly post a meal spikes. And they would last. Yeah, that would sometimes last. Yeah, that's like I'm looking at his number right now. Like he and part of this too, is just, he's got, we have other factors because we've got the gluten free. We're still trying to figure out how to Bolus right for that. And like so this morning, he ate a friend of mine big 10 muffins, these gluten free pumpkin muffins. And he ate that. And he's at 285 right now, which is obviously not not a great number. I obviously missed the Bolus on the muffin.

Scott Benner 42:16
Also the way you said that was hilarious. You said this morning he ate and you paused and you said a friend of mine. And then you made muffins. And it was great that I loved it because I was like, Well, this morning he ate a person that'll definitely drive up. Yeah, that'll

Cate 42:31
do it. Yeah.

Scott Benner 42:32
I mean, it's not a ton of carbs and people but the adrenaline's gonna be crazy, don't you think? Yeah, yeah.

Cate 42:39
And now he's going to the birthday party. I just saw him leave now. He's gonna go eat like gluten free pizza and cupcakes. And it's probably not going to be a great number.

Scott Benner 42:48
So what do you do? Like you've you've got a big number, because you missed on a Bolus? Do you correct it? Yes. Just let the algorithm do it. What do you how do you handle it?

Cate 42:57
No, I, and this is where your episodes would have come in handy when we were getting on Omnipod. Five. But right away, I definitely corrected a high if I saw that he was high. I'm like, I don't care if the algorithm is going to learn or unlearn or whatever. I'm going to correct it every time. And, and so we always do that. Where things are sometimes tricky is if he's high, and I go to put in a correction, and it tells me he needs nothing. I'm, I'm always like, Okay, so do I just override this? How much do I decide to give him? And I think in the beginning, that was hard for me to figure out like, should I just give him a little bit more? Because I know he needs more? And I think the answer is yes, it's just how much so if I give him too much, I think you can end up stacking because the pump is trying to correct the high as well. You have to be careful, like overriding, I learned that kind of the hard way. So if I'm gonna give him a little extra even though the pumps telling me he doesn't need it, it's usually like point one like I give him you know, I'm pumping and nudging just a tiny bit because I don't want to,

Scott Benner 44:12
well, there's a balance in what you're doing, right? Because the the algorithm is correcting at its own speed that could end up taking longer than you want it to. So you you you say well, I want to push it a little harder. But then you also kind of have that in that moment. Now that you've added extra insulin. You've put in too much insulin, there's going to be a little later at some point, but you have this odd expectation like oh, the algorithm will stop it. But right you've put it into a situation where it can't stop it. Right. And that's that's the one thing about every algorithm based system. It literally like every one of them that people have to understand is that it's not smart. Like you don't I mean, like a sentient being. It's not looking and going okay, well, grace and how Add food at 10. And even though his mom told us that it was 20 carbs, it's looking like it's more. So all. You know, it doesn't do that. It just it, it believes you. Yeah, I mean, 100%. Yeah, it's like the setting say this, they said this, I believe that we are moving forward based on this as being true. And then that means if your settings are wrong, your carb count is wrong, or you're eating something that has more glycemic impact than its carbs might indicate or anything like that, you're not going to get the outcome you're looking for. And the algorithm is not going to just, it can't make a conscious leap after that. It just keeps doing what it's doing.

Cate 45:39
Yeah. And I think we were relying a lot on an extended Bolus to which worked really well, for the high glycemic foods, all the gluten free foods, like he would eat and then I would just toss in like 10 grams and extend it, you know, almost at every meal, he was having something gluten free. And that worked really well. And so that we had to figure out like, how do we deal with that now that we can't use extended Bolus when he's in automated mode?

Scott Benner 46:07
What are you doing?

Cate 46:09
So I think part of it was just the carb ratio issue. Like, I think once we will, of course, like if his carb ratio was set at one to 25, and then I'm adding 10 grams, like, I should have just seen that it was really just a carb ratio issue. So now that he's on a ratio that's better suited for him, he doesn't need that extra 10. Okay, I do still think that when he's eating fat or protein, that's when I also would have used an extended Bolus, and I just set a timer on my phone. And I Bolus for the app for the cat an hour later.

Scott Benner 46:45
Okay, that is definitely what I would do with both of those scenarios. But this is the part where we have to tell people, here's the thing about AMI pod five, you set it up and told it one to 25 carb ratio. Yeah, if you realize, weeks or months later, oh, it should have been 115. Yes, just going in the settings and changing it does not impact the algorithm. It only impacts the settings that you'd be using. If you took the the pump out of the algorithm and used it in manual mode. It doesn't, it doesn't relearn because you change your settings. It's already doing something that I don't think any of us understand, I believe on the pod calls it proprietary information, how it's making decisions. So the only real way to make a big change like that is to start over. And people don't want to do that often. Because it's because they've got this idea in their head like, well, it's a learning system. And it took six months to get us this far or three weeks to get us this far. However long it took them. And so they're like, I don't want to start again. I don't want to go through that learning again. But the learning, I'm guessing the second time was much quicker for you. Am I right about that?

Cate 47:59
Yeah, I would say the second time was I not no joke. Like I think within like four days, I felt like we were we were good. It was i i wouldn't have even really noticed that you had we had reset the controller. If if I didn't know it, like it happened so fast. And it was easy. And I think a lot of people are going to be put in that situation. What eventually there's an app, I'm assuming if you switch from a controller to using an app on an iPhone, it's going to start the relearning over again. Is that right?

Scott Benner 48:35
Oh, good point. So at some point, when it's iPhone compatible, you're saying everyone's gonna bail from their controller for the most part, and everybody's gonna get this experience, then?

Cate 48:45
I think so I feel like Jenny said that that was the case, if you switched over to the app, you would have to start the learning

Scott Benner 48:52
over again. So I can't say that with 1,000% certainty, but I think that's right. And, and the point is, though, if they switch and they still take their bad settings with them, they're just gonna, it's just gonna be the same thing over again. But if they learned like you did, Kate, look at you, right?

Cate 49:08
I know, that.

Scott Benner 49:10
They learned like you did. And it is interesting, isn't it? You're like, I should have just known. It. Just it's so simple. In hindsight, isn't it when you're talking about it? Yes. Yeah. Well, you're in it. Yeah, it's not it's not that simple.

Cate 49:23
No, it's not. But now, I definitely do not feel at all nervous about switching to the app at some point. Because if we go in with good settings, I don't think you're even really going to notice, quote, unquote, a learning period because your settings are going to be right.

Scott Benner 49:41
We should I even Oh, I'm sorry. No, no, you finish your thought.

Cate 49:45
When I set up the basil the second time, what I felt like he normally would use in a day. I even like added a little bit more than that, too. So I like maybe more than I even thought would be cool. racked, because I was like, I just I want it to be aggressive and work from that. And that seems to have worked. So you

Scott Benner 50:05
were doing that method while you're cooking. You're like half a cup of butter plus a little more.

Cate 50:10
Yeah. Exactly. Just add a little more.

Scott Benner 50:14
So, see, you're saying, by the way, nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise. But yeah, what you're saying was, you're like, Well, let me just give it a little more to work with. Yes, because your thought was it could take it away, but it has trouble adding. Yes. I don't know if that's something I'm allowed to say out loud, legally, or anything like that. But okay,

Cate 50:35
well, I can say it right. I'm not a doctor by any means. But it seems like I was like, Oh, I think he needs about nine units. So I'm gonna just put in 11 and see what. So and that seems to

Scott Benner 50:46
have worked. Well. What's this a one see now on the system?

Cate 50:49
That's a good question, because we haven't had it tested since July. So I'm not sure. Interesting. What he's out now, but I would say for the most part. He I'm just looking at his Dexcom.

Scott Benner 51:02
Do you not have clarity setup on Dexcom? I do

Cate 51:05
have I'm looking at clarity right now. But it doesn't have.

Scott Benner 51:09
It's not. It's not an estimated anyone see it's an estimated something else.

Cate 51:13
But yeah, it says GMI. And I never like when we went for his first a one C test. Well, that I can remember back in April, the GMI said 6.8. And when they tested as a one C they said 6.0. And I was like are you sure? Like?

Scott Benner 51:29
Yeah, I've heard people say that either that estimate comes very close to what they have, or sometimes it doesn't. So yeah, I don't know how to explain that, honestly. Yeah.

Cate 51:39
I mean, he runs about 85% in

Scott Benner 51:42
range, most of the time, what's your range set?

Cate 51:45
His range is set at 70 to one ad. That's excellent. Which, you know, and I know a lot of people are able to run lower than that. I think the thing that I have found, especially with like a young boy is like, he's so unpredictable. Like, he'll be laying on the couch one day, and I'm like, Oh, he's gonna need more insulin, because he's playing fortnight and he's, you know, just hanging around, and then I'll correct him or whatever. And he goes outside and jumps on the trampoline for an hour and then ends up in a low. So it there's that unpredictability of kids where I feel comfortable with him running, you know, a little higher, then maybe he will choose at some point as an adult

Scott Benner 52:27
in case he suddenly decides to play basketball for two hours.

Cate 52:30
Yeah, and then run past the construction gate into the road you never know.

Scott Benner 52:34
Exactly. And he's the older one. So can you imagine? Yeah. All right. Well, this is this is excellent. I'm glad you're you came on to talk about this. I mean, I've seen people online, they're like, I'm gonna restart it. I'm going to restart it. I listened to those episodes. And now I realized that I didn't Baba blah, whatever they think I didn't do. I'm gonna restart it. I'm gonna restart it. I'm always like, I'm not telling you to do that. But I mean, it goes, see what happens. If somebody's gonna do it and tell me so when I realized you did, and I was like, Oh, this will be great.

Cate 53:08
Yeah, I'm not even sure how you would restart it. Like, if you had a current controller. I don't even know how you go about, like,

Scott Benner 53:14
I'm sure there's a reset button somewhere.

Cate 53:16
There's gotta be there probably is. And, you know, I'm not saying you should do that either. But I think naturally, that's going to happen. I mean, a lot of people have iPhones. I think that's one of the benefits is eventually he's going to be able to Bolus from his phone. Like, I definitely think people are going to start over once. That's an option.

Scott Benner 53:34
No, I, I don't think you're wrong at all. Actually, I think you're gonna see a lot of people hear stuff like this or go back and hear by the way, those episodes are episodes 736-730-7738. They're available. In your podcast player. They're available. I think I have a page for them on the website. juicebox podcast.com, forward slash Omni pod five. I actually think Omni pod has them on their website. is amazing. Yeah. Isn't that cool? I think it's Omni pod.com. Although I mean, just go to mind. You don't I mean, like, no worries. Yeah,

Cate 54:10
just go Yeah, you don't even you don't need to plug them.

Scott Benner 54:13
There's no way they put. If you do juicebox, you end up at my site to start with it.

Cate 54:20
And those episodes were so helpful, like, even just listening to them. After we had already been on it. It it's, it still is helpful. Because I think the thing about new technology that makes it so tricky is there's not a lot of resources. So even the endocrinologist is like not really sure what to tell you. And when I was working with Jenny at the time, she, at that time, hadn't tried it yet. So she was, you know, using her experience with what she's been doing with other families to try to help guide us. Yeah, when you don't, you can't like pull out a book and read how to do it. That was I kind of felt left to just I don't know, figure it out, and hope for the best. So once those episodes came out, I felt like I wish I had had those three months early. I'm

Scott Benner 55:07
glad actually, I wish I had them before Arden started off about five. What do you think of that? Yeah. So an ardent used on the pod five for probably nine or 10 weeks, if I'm right around there. And it worked by the time it learned and we, you know, figure things out. It did exactly what I expected. I was like, this is this is it, this is what they that's what they told me it would be and it is. And but she said, I, she's like, I don't want to carry this controller. And I was like, okay, but she just she had context. From loops. She's like, Look, I I like running this from my phone better. And right now, you can't run this from my phone, she does get back to me when this has my my phone is is covered. I was like, okay, so we switched her back over. But it's neat to see. Interesting to see for me that any problems we might have had, you know, and I don't mean problems, like difficulties. I mean, like, you know, life with diabetes, with with loop, they kind of were almost the same anomaly part five, and then vice versa, right. Like, it's, it's the limitation of an algorithm. Like I said, being stupid at some point and not being able to see, like, oh, he had pizza. This isn't just 15 carbs, it's cheese and sausage and stuff like that.

Cate 56:22
Yeah. And I think, you know, I had talked to some people that were, you know, kind of saying some things like, Well, we still have highs and this still happens, or that still happens. And it's like, well, it's not none of this is ever going to be you just, at least for now. Like you turn it on and you do nothing. There's still a lot of input from the user. And you need, you know, if a high happens, you need to correct it. Like you said, it doesn't. It's not a person. And so I think if I had advice would be like going in with the expectation that like, you're still going to have a little bit of work, but you're going to get a great night's sleep. You know, you should take that and run with it. But you're never going to be able to just turn it on and never think about diabetes ever again.

Scott Benner 57:08
Yeah, no, I mean, listen, Arden. Like I said the earlier in the episode Arden's eating at college now, and it's not great. And so yesterday she had, she had something that drove her blood sugar up, and we fought with it and fought with it. Like she fought with it. I was texting her. And then we got like, super aggressive with it over many hours. And then she sat down to do homework where she's very sedentary, but also kind of like, I think she's a little jacked up still from school. You know what I mean? Yep. So over like six hours, we're pressing against food, and then some adrenaline, and maybe some anxiety even. And then she gets hungry again. And boluses doesn't wait long enough. Now we're six or seven hours into this blood sugar. And I'm like Jesus at this all day. And we finally got the drop. And then she goes to bed. I'm thinking like, she's gonna get low. Like she's Yeah, definitely gonna get low. And, you know, like, three in the morning. She's She texted me, she's like, Hey, I just drank a juice. And I did this. Do you think that's enough. And the loop was trying its hardest. It was like take it saw the drop coming. It had been taken basil away for an hour. At that point, it still couldn't stop like a below 60 blood sugar that she had to hit or something. And then, and then, in the course of being tired, I forgot to tell her to like shut off the part where it boluses without food, like so. So the auto Bolus version of lube can micro Bolus with carbs or without carbs. Okay, we're one or the other or both. And so I should have said to her when she corrected I should have said shut off the corrects without carbs. Because what we don't want is for her to finally get her blood sugar back up and for it to go over like 110. And if you go oh, no, and then Bolus, which of course because we didn't shut it off. That's what it did. Talking about an algorithm being dumb, like, right, like we fixed the low, we're good. Don't give her insulin. And then 90, but not even 90 minutes later, an hour or so later, she started getting low again. So you know, is

Cate 59:20
that like, terrifying for you after her like her prom experience?

Scott Benner 59:24
I mean, Kate, it is what it is. Right? So yeah, yeah, I just Yes. I just didn't sleep very much last night. That's all.

Cate 59:32
Well, that's the thing. Like, that's how I've I feel too, like so Grayson goes back and forth between my house and his dad's house and like, even when he's not here, you know, you're still paying attention to those numbers, you know, and it can be a little bit scary, but for the most part, I feel like Omnipod five does a good job overnight of keeping him from getting low unless there's some other thing happening like last week on Tuesday. I had put on a new I changed his pump and his Dexcom sensor, they just that never happens. But they were both due on the same day. And he was reading high, like over 300 I'm like, What in the world is happening? And this was probably like, between eight and 10 ish PM. And sometimes he does get a little bit high with a pump change. So I was like, Okay, well, maybe just the, you know, the pump is getting on and getting insulin going again. And, you know, so I'm correcting him and, and it's, it was getting corrections, like it was definitely like, giving quite a few corrections and like, okay, you know, who must really need it. And then it occurred to me, I'm like, this seems really weird, because he's not usually over 300 At night, so I start finger picking him, you know, every now and again and realize that the sensor was off. And I'm like, oh, no, you know, the sensor was reading a lot higher than what His fingerprints were reading. Yes. So then I'm like, okay, he's definitely maybe had too much insulin, we need to change the sensor. So this is it. Like midnight, we changed the sensor, and I just didn't sleep for like two hours. You know, I'm waiting for the warm up to happen. And sure enough, I was trying to like calm myself down and be like, I'm just overreacting. He's not going to be low. I'm sure it's probably fine. You know. And when he came back on it, too, am, you know, the Dexcom is just screaming low at me. And I run in there and wake them up. And you know, we're giving them juice. And it was like, after that I'm like, Oh, my gosh, is is great as all this technology is like you still have to trust your gut like, yeah, it's still sometimes not right. And that happens well,

Scott Benner 1:01:45
so the other day, we were fighting with a high blood sugar. And I finally stopped and I thought her blood sugar should be lower than this. Yeah, it's, I did everything. I know what I'm like, I know what I'm doing. And I did the thing. And this isn't where the numbers should be. So I'm starting to decide, is this an insulin delivery problem? Because if it isn't, then oh, hey, Arden, test your blood sugar. And, and in that scenario, her blood sugar was like, I mean, we were breaking a high like 200 and her blood sugar was more like 180. And it was telling us she was like, 220. And I was like, that's not right. And, and that's a big difference, because one ad indicates that we're we've got a fall happening from where we were. Right? Yeah, you have to listen. I there. I mean, I'm a little like, you know, I want to make sure everybody understands, like their sponsors, all these companies, but I'm still going to tell you the truth. Like you know, Dexcom is not always going to be perfect. Your pumps not always going to work, right? You know, like nothing, you know, you might test your blood sugar and be like, oh, you know, it's, it's the best that exists right now. And I think that the podcast is supported through advertising through some of the best stuff that exists. So I'm not like, I'm not apologizing for it. I'm just saying you have to use your own common sense still. Yeah, you know, I mean, take anything self driving car, even Lane Assist cars, you see people like, oh, I don't know what happened. I had an accident. The thing usually tells me if I'm gonna get to the lane, I'm like, that's what you're counting on. Like, you know, like, yeah, keep your hands on the wheel look forward. You know, yeah, yeah. And I

Cate 1:03:25
think, you know, I said to grace in the morning, like, but the good news, I think it was Wednesday or Thursday that the Dexcom released the g7. And some other countries, I'm like, soon there's only going to be a half hour warm up and and then I that probably wouldn't have happened, like I would have seen you dropping and known to treat that faster. So like, it's it's always like progressively getting better.

Scott Benner 1:03:50
Yeah. No, it's It's amazing. I just, you know, you have to listen to an episode once in a while with people who have had diabetes for 50 years and hear them talk about not just not just how they started, but the three generations of technology that came afterwards that right now, if you are you with a kid who was diagnosed, you know, 15 months ago, any of their explanations of diabetes is like, Oh, my God, what? Like, that's insane. You know, and you're like, and you're like, Well, when I switch a sensor, when I switch the thing that sticks to his skin that reads this interstitial fluid and tells us if his blood sugar isn't if it's moving, etc. Sometimes there's a warmup period, and it's not always accurate right afterwards.

Cate 1:04:32
Yeah, yeah, we're definitely spoiled for sure. I mean, yeah, and that's why I wanted to try out a new pad five, you know, right away because I knew it was going to create less work. And his even with a little bit of issue with the controller that I probably should have switched sooner. I mean, it's a one C was still 6.1. So, I mean, we really can't complain about that.

Scott Benner 1:04:57
Would you say overall, you're very happy kind They're happy, like, where are you on the on the scale?

Cate 1:05:03
I think we're, we're very happy with it. And, you know, I definitely wouldn't go back to, to doing manual right now I think, especially for a child who, like I said, is unpredictable. I think it's amazing. And you know, I'm curious about looping. And that's something I've read about and maybe we'll explore at some point in time, but for where we are, is early in his diagnosis. Right now, I think he's on the best option, and just it being tubeless. Like he, he refuses to try anything that has a tube, like he said, right away, I'm not doing that. Which I get because he plays sports. And that's what's important to him. And he doesn't want to feel like something's getting in his way. And Omnipod definitely does not get in his way. So

Scott Benner 1:05:52
well, I can tell you, I would I mean Arden's over 18. And I am I am speaking for her, but I don't think she would leave any kind of an automated system. If loop didn't exist right now. She'd be like, give me that Omnipod five back right now. You know, and all I'll work with the controller. I think that I still believe that moving forward, whatever. I don't know, whatever on the pod five morphs into. I do think that eventually, that's what Arden ends up on. Because not that I don't think lupus is terrific. But I mean, there's just work involved in making it run. And there's things you have to know that most people don't know. And she's not going to at some point in her life, you know, be an app developer, so she can wear an insulin pump. I don't see her being that person. You know?

Cate 1:06:42
Yes, I could see that. Yeah, Grace, kind of like that, too. Like, she makes me laugh when she's on because she's kind of like, this is just my life. Like, what do you want me to say about it? You know, and he's kind of like that, too. Like, yesterday, I introduced him. I was really excited. I introduced him to a friend's daughter, who also has diabetes and celiac. And he just was like, shrugged her shoulders like, Yeah, so like, what? She has it too? No big deal. You know? Great. Like, I don't think he would, you know, he doesn't care about an an app or being a developer or whatever, just to keep himself in control. Like he just wants to use you want. Yeah, he wants to be a kid. No,

Scott Benner 1:07:18
no, I hear you. I listen, I think it's terrific. i It's tough, because I assume that people hear Scott tried on the pod five with Arden. And then they switch back and they think something happened. But it's not the case, like Omni pod five, again, did exactly what I thought it was going to do. It acted exactly the way I expected it to. And I thought it was terrific. I thought it worked fantastic. It's different, like, you know, because it's got that, like learning phase to it. And they don't exactly show you everything that's happening with the insulin. So you're guessing sometimes while you're trying to figure it out, but my expectation is, I mean, I don't know, obviously, I don't work there. But my expectation is they're going to keep fine tuning this thing. And the generations will come in common at one point, you probably won't give a crap what it's doing. Because, you know,

Cate 1:08:08
yeah, you want I know, that is it is hard to not be able to like see exactly how much he's getting. Because I get their point. Like, we don't want you to have to think about it. We don't want it to be work. But I think there's a lot of us, like, just out of curiosity, I want to know what his needs are in case, what if I had to do it? Or what if, you know, we had to switch for some reason. And so that's it is tricky to not have all of that information, but at the same time, it's working well enough for us that I'm like, Oh, it's this is fine. Yes. Good

Scott Benner 1:08:41
in that scenario, and based on nothing, anyone has said to me like this is my supposition. It's that the algorithm is making so many decisions and changes that it doesn't translate right back to your Basal is this and your carb ratio. Is that, like, I don't I wonder if that's not the case. Like if what it's doing just doesn't simply translate back to manual care. Does that make sense?

Cate 1:09:07
Yeah, it does. And the only time

Scott Benner 1:09:11
okay, I'm just guessing. But

Cate 1:09:12
yeah, in the only time like that I have realized that we I do switch him over to manual is the activity mode is excellent. Like if he's going to have a friend over and it's going to be playing or like we went we were hiking yesterday and I popped him over to activity mode. And that worked well. But when he's going to he plays travel soccer and he's had a couple of tournaments where even on activity mode, he just was low the whole day. And we just could not keep him up. Like I was just throwing Gatorade at them. And so I talked to the endocrinologist after that and they were like, you know, you might just occasionally either have to switch over and pause insulin during a game or settle really low Basal profile for that type of day and then switch into manual mode just for that day. And we've done that. And that has worked. And you know, those are extremes. It's like a day when he's gonna have he had like four games in 112 hour period, which is crazy.

Scott Benner 1:10:16
Well, I think that a lot of people are going to find just like with regular diabetes care, they're going to find ways to make these things work for them. And in that, if that works for you, then great. And then somebody else might find a different way to do it or, but it's not going to be I mean, we're not up to perfect we're not up to perfection yet in 2022 Give me yeah, we're up to this is pretty freakin amazing. And, and I sleep more. And there's fewer lows. And that's good stuff, you know?

Cate 1:10:46
Yeah. And it's so for him to be able to sleep through the night like as much as I want myself to be able to sleep. I don't. In the first year he was there were days where he would end up in the nurse's office at school napping. Because I would have had to wake them up to treat a low and you know, he's growing. He's at that age where he wants to sleep more and not having to wake him up constantly. is so nice. Yeah, that's been great.

Scott Benner 1:11:11
I'll share this with you last night. While Arden when I called Arden first she called me. And she's like, Hey, and I'm like, What's up? And she asked her questions. She's like, I did this and this, do you think that's enough? And say, oh, it looks like enough. And then I forgot to tell her to shut off the micro Bolus thing. So you know, anyway, yeah. The next time I had to, I texted her a couple times, she did not wake up. So I called her and woke her up. And it's like, I mean, you know, it's four o'clock in the morning, and she's Yeah. My hay yards. I'm like, we're gonna have to drink another juice. And then, you know, okay. And then I hear this, like, I swear to God in my

head. And I felt I felt terrible. While that was happening. No,

Cate 1:12:02
I know. And then she's got to get up and go to class. Like, that's tough.

Scott Benner 1:12:07
Arden also put herself into something. You know, I don't think we've we haven't talked about it a whole lot. But Arden did something that I don't think a lot of people would do. She's a really good student in high school. And if she were to pursue something on the more academic side, she was thinking about pre law. But instead art and went to school to learn how to design clothes. She was yeah, she went to art school to study fashion. Yeah, and she's not a out of the womb, talented artist. So she's got a lot of vision. And she puts things together, but she did not spend her life drawing or painting or working in charcoal. So Arden, like, willfully gave away an academic pursuit that she would have been good at, to go to try to teach herself something artistic. So she's seated at a desk most of the day, you know, learning how to draw. And in as a as a freshman. And it's a I mean, it's, I don't know if I've couched it so that everybody understands correctly. But, you know, this was this was the this was something this is a person in a lane, who said, I'm gonna go way over here into this different lane and see if I can figure this out. That was a pretty big leap. So, you know, on top of all that,

Cate 1:13:36
yeah, yeah, it's not easy. I mean, she didn't pick the thing that would have bet maybe come naturally, but she's gonna work hard at it. And, you know, and I, I always feel bad when, like, after Tuesday night, I mean, we were up most of the night and I said to grace, and I'm like, I could not go to work that morning. Because that only after a night like that, am I exhausted, but like the adrenaline of all that happening? Yeah. Was it takes a toll, you know, and I'm like, I'm in front of kids all day. I'm like, I can't run on on zero sleep. So I called in for the morning and I told him, he could stay home. And he just was like, no, no, I'm not doing that. He refuses to miss school. You know, he just started middle school. He doesn't. He's like I literally while he's having a low blood sugar, he just computer out. He was trying to do his math homework. I'm like, can you not do that right now? Like he he was like, slurring his words. He asked me What's four plus nine? I'm like, buddy, like, now's not a good time to do that.

Scott Benner 1:14:35
No, I know. Do you know? I don't know if she said this or not in her last episode. But after Arden had that seizure, and she was rebounding from it. It was Sunday morning. You know what I mean? Or Saturday morning, it was very early on and she was she started emailing one of her teachers. Oh my god. She was like, Hey, I'm not going to be able to get this thing done. I just had a seizure. And oh, and she was being she thought she was being rude. responsible? Didn't really mean but she was Yeah. Still a little, like, still recovering. Yeah. And the guy, like I emailed her back and he was like, okay, like, are you okay? And you know, like, he was almost saying like, you really shouldn't be worried about this right now.

Cate 1:15:20
Yes, yeah. And they need to hear that, like, I tried to tell him like when you're like your health is the most important thing. And then school like, I appreciate that. You want to do your math homework, but also you probably can't, you know, obviously a four plus nine, it's, it's hard for you right now. It's like, not a good time to do that. Anyway,

Scott Benner 1:15:40
but I take your point, I've seen Arden do the same thing. I've seen her have long nights in high school. And I'd be like, if you want to just skip a first class and sleep a little longer. You can? Yes, like, No, I'm okay. And I'm like, All right. I mean, listen, I got up this morning. Not gonna lie. Yeah, I slept like four hours last night. Oh, God. And I don't feel terrific right now. But I'm working it out. And by the way, I have to get off with you. Because I'm recording again and a half an hour. So Oh, my God. Okay, set up. So this is me, like, I really wanted to talk to you. And I'm thrilled that you came and gave me this, this explanation of how things went for you and for grace and everything. So I just like get you in to the, to the, to the schedule somewhere. Because right now, it's October 2022. Yeah. And if I gave you my scheduling link right now, like I gave you the VIP link, I think right. So if I gave you if I gave you the scheduling link, you would not find a slot until October 2023.

Cate 1:16:36
Yeah, that's insane. Yeah, that's, that's amazing. Well,

Scott Benner 1:16:39
and I wanted this story fresh in your head. So like, I can't wait that long. By the way, man, respect to everybody who contacts me to be on the podcast. And it's not daunted when I send a link and say, Hey, you're not going to find a space for about a year. And they're like, no problem. I always think I always I'm like, thank you so much. It's just so very kind thing everybody does.

Cate 1:17:01
Yeah, I mean, you should feel good about that, like people are willing to wait a year to talk to you. So that's pretty amazing. Oh,

Scott Benner 1:17:07
adults, Kate, who have learned patience, which I am proud to say I have finally learned in my life, are okay with him, like we needed a new refrigerator and I wouldn't the guys like well, I won't be here for two months, I was like, that's fine.

I'd like to thank Omni pod makers of the Omni pod five and the Omni pod dash, and remind you to go to Omni pod.com forward slash juice box. I'd also like to thank us Med, go to us med.com forward slash juice box or call 888-721-1514 to get started today. And of course, the Contour Next One blood glucose meter is available at contour next one.com forward slash juicebox. You may be paying more for test strips right now through your insurance than you would at my link. And of course, let's thank Caitlin for coming on the show today and sharing her story. If you're looking for the diabetes Pro Tip series, go to juicebox podcast.com and hit the menu at the top. Actually, all of the series and the podcasts are now listed there. Don't miss it. And if you're looking for a real supportive place to talk about diabetes, or just watch people talk about it, because sometimes just watching the conversations kind of brings you along with the idea. Anyway, you can do that on my private Facebook group Juicebox Podcast type one diabetes, it's 100%. Free. It has over 30,000 members in IT people just like you adults living with type one. Caregivers of type ones up jeez, a lot of people who have just become pregnant and gotten that gestational stuff. I type twos are in there any kind of diabetes, you can imagine. They're there. They're willing to talk to you. I really think you should check it out. Thank you so much for listening and for supporting the podcast. I'll be back very soon with another episode. So keep checking that app. You are listening in an app? Aren't you like Amazon Music Spotify or Apple podcasts? Please tell me you are out overcast. There's a lot of free. Look, there are a lot of free podcast apps. A lot of them are terrific. They're great places to listen to podcasts and to subscribe or follow. Please don't be listening online. What do you like you my grandma? You don't I mean? Let's get you. Let's get you an app. Alright, we're on your phone, Apple. Android doesn't matter. Don't know where to get one. juicebox podcast.com. At the top, there's links. Go into the Facebook group. Ask them, you can do it. You too, can be in the cell phone age. I'm just kidding. Most of you listen in apps. I just please subscribe or follow that to actually while we're talking. That's actually a huge help to the podcast. Subscribing and following in an app is a major help. only bested by sharing the show with somebody else. If you really want to help the podcast share the show. Subscribe today. AP support the advertisers when you can take the T one dc exchange survey like there's a lot of ways to do it but Subscribe and follow follow and subscribe please.

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