#29 Fear of Insulin and the High BGs it causes us to accept

A HUGE thank you to Beth for her bravery and transparency!

D-Mom Beth Riegger is an open book in this episode as she talks candidly about the higher than she would like BGs that her son has and her fear about tackling them. This is an episode full of type 1 diabetes parenting honesty that you may just see yourself in... 

This episode of the Juicebox Podcast was sponsored by OmniPod, the world's only tubeless insulin pump. Get a free Demo kit today.

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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
Okay, I'm not gonna lie. I'm pretty excited to speak this next sentence already. This episode of The Juicebox Podcast is sponsored by insolate, makers of the Omni pod system, the world's only tubeless insulin pump. Can you hear me? I can hear you now. Oh, great. I didn't have all my buttons clicked. I'm sorry. It was a couple of minutes. Like,

Beth Riegger 0:28
that is just fine, because I was too.

Scott Benner 0:30
Great. Are we going to use your last name? Sure. Yeah. Is it Rhaegar? It is. Okay. All right. So that because we were going to talk originally about one topic, and now we're not going to we our topic list, which I think is, which is good, actually. So if you don't mind, I think we should just start chatting and kind of see where it goes. I have a little bit of an indication, I think what I want to talk about, but we'll see how comfortable you are. And we'll keep going. sound right. Sounds great. Excellent. This is episode 29 of the Juicebox Podcast. It's a conversation with D mom, Beth Rieger, best son, Gabriel is 12 years old, he was diagnosed two years ago. They are they use a good bit of technology Nightscout on the pod Dexcom. They're, they're involved in the community. And when I asked out loud, I think on Facebook, if anybody wanted to come on the podcast and talk about the whole CrossFit thing, which is covered back in episode 24. And a little bit in the episode with with Chris Freeman. When I asked Beth was one of the many people who responded and said they would love to talk about it. Now I ended up going with Eileen Grable because Eileen, I don't know. I don't know why she just gave me a good feeling on the subject, but so did Beth. So I called Beth and we talked for a few minutes about what we were going to, you know, what we would talk about on the on the podcast, and I told her I'm sorry, you know, I think I have somebody to talk about CrossFit already. But I was still very interested in speaking with her. And during our kind of getting to know you conversation we had, she mentioned, I heard her say, kind of across the room off the telephone to her son, Gabriel. Let's see if we can get that that blood sugar below 200 today, and there was something about the tone of her voice that made me feel like maybe 200 had become a safe number for bass. And that is what I wanted to talk to her about. And you'll hear in the beginning of the podcast, I kind of trepidatious Lee tell her that I have something I want to talk to her about. But it takes me a while into the episode to to gain the nerve to actually ask her because it is a very personal question. And I thought it was possible that Beth could have been insulted by it. But instead, I think she took the opportunity to be introspective and to also maybe talk in an honest way in a way that might help you and anybody who's listening. So my heartfelt thanks to Beth for her honesty and her desire to help herself and help the community. I hope you you really liked this one as much as I did. Okay, so Beth, you are the mom of a teenage boy or is he not quite a teenager?

Unknown Speaker 3:12
Oh my dear God in heaven. He's only 12 He's

Scott Benner 3:15

  1. Okay, now listen here. You're acting like he's not almost a teenager, but Okay, so, so

Unknown Speaker 3:22
100%

Scott Benner 3:25
So your 12 year old son, are we gonna use his name? Sure. Yeah, it's

Unknown Speaker 3:29
Gabriel. Okay, Gabriel.

Scott Benner 3:30
When was Gabriel diagnosed with type one diabetes?

Beth Riegger 3:33
He was diagnosed October 13 of 2013. Okay, before my husband's birthday,

Scott Benner 3:42
so you're almost two years, almost two years and it

Beth Riegger 3:45
feels like it's been a lifetime.

Scott Benner 3:47
Yeah, no kidding. How are we managing right now? Are we pump shots, pen?

Beth Riegger 3:53
Pump, the Omni pod

Scott Benner 3:55
using Omni pod. Okay. And I thought in our email, you were saying you have a glucose monitor too.

Beth Riegger 4:02
Yep, he wears the Dexcom. And we are also on what we affectionately call Skynet, which is Nightscout

Scott Benner 4:11
they're using Nightscout sound. Very nice. Okay, so everyone's hooked up your as technologically savvy with the type one diabetes as you could possibly be. How? How are things going?

Beth Riegger 4:22
Well, just a little side note, technology thing. My dogs are not my Gabriel's diabetes educator. Her daughter was just diagnosed with type one diabetes.

Scott Benner 4:38
Wow. That's, that's crazy. It is crazy.

Beth Riegger 4:41
But she said because of her relationship with me. She knew to download the mom my sugar app right away. She knew to download the glucagon app right away on her phone on her phone. She knew our experiences with the Dexcom I mean, she's a Diabetes Educators. So she's got those other things going for her, but because of Nightscout, in our experiences with Nightscout, and all of the stuff that we do with my fitness pal, and just all the technology stuff, she's like, I got this.

Scott Benner 5:14
Yeah. And that's something you were she was kind of being supported by the diabetes community before she needed it. Almost. Exactly. And then she got it to reach right into well, that's, that's kind of amazing. And I'm sorry to hear about her child. But that's really, yeah, that really is kind of uplifting to think that stuff that you've been sharing back and forth with her. You know, wasn't just she wasn't just nodding away when you were talking to her as your as your diabetes educated, but she was really listening and hearing the value in those things. So

Beth Riegger 5:42
I really felt incredibly supported by not only our educator, but our, our doctor and our nurse practitioner, as well. I see on our groups on Facebook, how people, and those are crazy. And school nurses are crazy. And all these unsupportive families and significant others and siblings and we are supported all the way around. You're not

Scott Benner 6:12
having that same experience, which is fantastic. Good. It is.

Beth Riegger 6:16
So you asked about how we're currently doing in management. And right now we are on the roller coaster ride?

Scott Benner 6:25
Is, is Gabriel hitting, do you think? Is he starting to grow? Are you having just are you having issues with carb counting or insulin? Or what do you think's going on?

Beth Riegger 6:37
I think it's insulin. I think we're having issues with the Omni pod. I think we're having issues because it is 917 Central Standard Time. And he's still sleeping. Right, which are child even since birth has been an early riser. So all of the fantastic adjustments that you can do down to the time of day on the Omni pod are all off because he's not even rolling out of bed until 930 10 o'clock.

Scott Benner 7:10
So you mean like, I'm not falling? I don't think so. Like you want to give him insulin, but you can't or you want to change? Because he's sleeping?

Beth Riegger 7:19
Yeah, so he's. So normally, he would have breakfast during the school year, around 730. Right, right. And the insulin to carb ratio on the pod goes until 10 o'clock, at one rate, and the Basal rate is at one rate until 10am. Okay, he's not even getting up until after 10 Or sometimes at nine, sometimes at 830. So I have not dove in deep enough to figure out how we should change those things. And I was just recently introduced to dye ascend, where I can upload both the Dexcom and the Omni pod. And I put in our clinics or endo clinics code. And they can log in at any time and see what's going on as long as I upload the information.

Scott Benner 8:13
Okay. So like let's use like a real world example. Like you said, he's sleeping right now. So both of my kids are still sleeping, and it's an hour later here than it is there. So my son is 15 and growing, it seems by the moment and he seems to sleep away most of his life while he's growing. And Arden stayed up very late last night and is going to a party this afternoon. So she told me very specifically last night, I didn't want to wake up till about 11 or 1130. And I was like, oh, okay, and she's like, then I'm gonna get a shower go right to the party. I was like, well, good for you. What a lovely day you're going to have I'll sit around the house and clean while you're sleeping. And so in so for instance, like, like right now you told me in an email like your son's blood sugar's high, and then the number is not important, but have you given them insulin or is it because he's sleeping? You don't want to go in the room and wake him or or like, why not Bolus now?

Beth Riegger 9:06
Why not? You're right. Why not? Why wouldn't I? Yeah,

Scott Benner 9:10
it because even if you don't want to, like wake him, I don't know what your experience is or how your house is built. But like Arden's on the second floor, for instance, and she's above our dining room. If I stand in our dining room, I can get a status update from her on the pod and I can give her insulin from the first floor. And then I don't even bother or so like in the morning this morning, when I left her room. Earlier, you know, a few hours ago, her blood sugar was a little high I Bolus while she was sleeping. And then I brought the PTM downstairs with me. And I've made an adjustment to her Basal rate and given her one more small Bolus, in the few hours that I've been awake literally from the first floor to the second floor of my house. And are you just so you're two years into it? So So are you just Are you frightened? Because he's sleeping that you don't want him to get low while he's sleeping? Or what's, what's your impediment here?

Beth Riegger 10:06
You know, that's feel like you're my therapist right now, Scott,

Scott Benner 10:09
let's do it like that, that because I think this is a good idea, and people are gonna relate, listen, you're two years into it. Let me let me go backwards a little bit to make you feel more comfortable. Two years into type one diabetes. Arden was four years old. I had trouble driving places, like, because I thought, what if this happens, like I What if myself right into, into into being frozen into no motion at all. And so it took me a little more time to kind of get past that and get to the point where I'm just like, hey, Bolus now do this more insulin, you know, like, like, keep going push. And, and like so for instance. I think if I was you, and I don't know what your level of comfort is right now, but if you're looking at his blood sugar, and you have the Dexcom you have no. I mean, in my opinion, you don't have anything to really be too scared about because what you can do is you can Bolus and if you've gone completely awry, then you could wake him up and give him something. But you could also take a shot at it. Like pick a pick a, I don't know, let's see in the let's say you need his blood sugar to come down 100 points. Do you have an idea of how much insulin that would take?

Beth Riegger 11:24
Um, yeah, we're 50 for every or we're 50 for one unit. So that would be two units.

Scott Benner 11:30
Okay. So if he was, let's, let's just make up round numbers right now. Like, let's say his blood sugar was 250. Right. Now, if I said to you, right now, if go give him two units of insulin, you would say? Okay, yeah. You just need somebody to push you a little bit. And so and so.

Beth Riegger 11:47
Definitely, right. It's definitely true. So when you do it on your AMI pod, do you put in the Dexcom blood sugar? Or do you just go Skip, skip and then just do a Bolus?

Scott Benner 12:00
Well, it depends on the situation. So okay, so I see what you're saying. You're scared to Bolus based off the ducks calm right now. I get that. Like, I absolutely get that last night. When Arden went to bed, she had we went to a restaurant kind of late in the evening, when we left the restaurant, her blood sugar was on her Dexcom around 80. And she was kind of drifting a little lower. So we made a little sidetrack and stopped and got like a baked good on the way home. She had this little tiny kind of piece of a doughnut thing. And a couple of hours later, her blood sugar was hanging right at like 130 on the Dexcom. And I'll admit that I was thinking like, I wonder if that's right, like we should test because I'm not usually that good with like bakery stuff. You know what I mean? Like, like, so let's, and as I was thinking, let's test the Dexcom told me, you know, we'd like it threw up a blood drop that indicated it wanted to be calibrated, right. So I tested her, and she was actually 180, not 130. And I was like, okay, so I put in the 180 into the DAX and I Bolus for the for the for the blood sugar. And she was already asleep. By that point, it was probably Gosh, 11 or 1130. So her blood sugar was 180. And I gave her a significant pretty significant Bolus because her her Basal rate gets cut down for bed around 10 o'clock, it goes a little lower. And when the Basal is lower, for sleeping, it's harder for me to move her blood sugar with a Bolus. So I increased I Temp Basal and her Basal back up again to where I wanted it to be for an hour and I Bolus on top of it. And you know, she's upstairs now still sleeping. It's, gosh, it's 11 hours later. And I can look at her blood sugar now and tell you that it is 140 right now. Now I'd like it to be a little lower than 140 While she's sleeping. But you and I were going to talk and her sensor is at the end of its life i It's popping in and out like I'm losing the signal. So when you and I are done, I'm actually we're going to when she wakes up, we're gonna switch the Dexcom if the Dexcom was working well, like if we were in the middle of the seven days and not, you know, let's be honest, if we weren't up towards the 11th or 12th deck, and so and so it's just if it was working where I expected it to be. I would absolutely Bolus the 140 right now because the it's the directional arrows in my opinion. Batfleck right. So it almost kind of doesn't matter what Gabriel's blood sugar is right now if it's 100 or 200 or 300. If you want to move it, go ahead and move it and then use those directional arrows as your indication that you've done what you've meant to do. Or it's gone awry in one way or the other. And that's when I talked about like earlier in the in the podcast, you know, I don't know Round episode 10 or so like when I tried to get people to just be bold with insulin, like, I remember talking to my nurse practitioner and she said to me that the biggest problem she has is getting parents not to be scared of the insulin. And I understand why. I mean, you understand why we all understand why. But that, you know, and then I don't know if you've even heard that episode, but I think it's worth going over again, because it's been so long ago, like, if if Gabriel's blood sugar's 200 Try to make it 150. And then when you see what it took to make it 150 The next time it goes to 200 Try to make it 120 You don't I mean, it just kind of keep pushing yourself until you see what's too much what's not enough. And I mean, in your around him still, right, you know, the history of what he's eaten and what's going on, and things like that. He's been sleeping for a long time, he's probably dehydrated by now. You know, there's all kinds of like, I don't know, there's all kinds of reasons like so. So tell me a little bit about your fear. That's what I want to hear about.

Beth Riegger 16:04
So, I'm just sitting here kind of in awe of how you play with the numbers. And you are bold with insulin. Because like, our biggest thing is, I just want to get rid of these extremes. These are extremes are which are what cause a lot of anxiety with me personally, I'm not really sure if it does with my husband or not. But like, so for breakfast. I absolutely hate banana crunch, because I will Bolus appropriately for banana crunch. And I will make sure that he's got insulin on board for at least 20 minutes, if not 30 before it even enters his mouth, but still are pushing 300 for a couple of hours.

Scott Benner 16:54
Here's a basic my role, let's call it my role of type one diabetes. Serial. Not okay. Never gonna work. You're never gonna like master it. It's just not just make cereal go away. So we're leaving Arden's endo appointment years ago, and she's a little kid. And I think it was the first time that she started really understanding what the endo was talking about about our agency. And we get out into the lobby, and she says, she asked me, Is there something I could do to help my a one C go lower. And I thought about it for a second. Oh, and I said, you could stop eating cereal in the morning. And she was like, okay, and that was the end of it. And she now there's like a little bit of cereal in this vacuum thing in our house. And it's like, if she gets a really low, she'll look at me and she'll be like, I could have cereal now. And I'm like, absolutely. But so she at a pretty young age, changed her morning habit and stopped eating cereal. What I can tell you from watching cereal effect Arden's blood sugar and what you probably know from watching it affect Gabriel's is none of us should probably be eating cereal, it just can't see really, it just truly the truth cannot possibly be good for you if it's that hard to affect with insulin. And so I think that even when you're trying to be more healthy with cereal choices, there's still a lot more sugar and in them than, you know, than we would like to think. I mean, that's how it seems to me at least. And when it's not sugar, then it's just very carb heavy and very grain heavy. And you kind of can't get away from it and your Pre-Bolus say, look a half an hour Pre-Bolus You got my respect, you're not scared of anything. I have our Pre-Bolus is is fantastic.

Beth Riegger 18:44
I do I do that because he's been running high. And both my husband and I are like trying to coach each other. The agency is not our report card. It is just it is what it is. We are not the numbers. You are doing these mantras to us because we know his agency is going to be Jack

Scott Benner 19:03
and Beth, let me tell you something when you say that I can even hear your voice like that's something you tell yourself for your own sanity. Right. Right. But do you really believe that?

Beth Riegger 19:15
I do. Think you aren't. How could it not be our report card?

Scott Benner 19:21
Right? Right. So so that's the that's the catch. 22 you you go listen, I agree I hear people say it all the time and understand for like the overall you know, your mental health like it's important not to chase numbers. I don't chase numbers. I don't feel bad about a high blood sugar or a low blood sugar. Like I don't get stuck on any one place. But over the long term. If Arden's a one C was way out of range, I wouldn't just see that as like I wouldn't even think of it as a failing like, don't get me wrong, like I would look at it as like we obviously don't have a grasp on this the way we need to. Yeah, and it in my mind doesn't seem any different to me than If Arden got her leg broke, and I just never took her to the doctor to get it set, like if I just kept going like, Oh, listen, kids rough and tumble, she broke her leg. There's nothing I can do about it. I'm just gonna like, I don't know if I'm making sense or not. But she's 100%. Yeah, like, at some point, the reality of the situation has to overtake my need to be mentally comfortable. And I have to say to myself, we're not doing something we need to be doing. God knows, I don't know what it is exactly. But let's just start throwing things at the wall and trying stuff until something works. And I think that's something you could do, especially because you have the technology because you have the CGM. And because you have, you know, you're using a pump. So you're in control of how much insulin is happening and Basal rates and all this kind of great stuff. Like, just start thinking of Gabriel's blood sugar, like your science project, and just kind of quietly on your own, try to figure out what makes it tick. And, and then once you figure it out, then you'll be able to manipulate it, I think, you know, with less stress and more ease. Is that something you feel like you're working towards?

Beth Riegger 21:06
You know, I don't feel like we're working towards it. No, but I feel like because both my husband and I are so numbers oriented, like science type technology type that, why haven't we been thinking of it? Like, what you just said? Why haven't we

Scott Benner 21:25
because Because, because, listen, let's talk about why. Because if you give a person too much insulin, they die. That's why and so it's kind of the unspoken part of the whole thing. You know, they you know, insulin saves your life every day, if you have type one diabetes, and type two diabetes, some people but if you know, at the same point, if I miscalculate or the carbs don't act, the way I expect them to are, etc, and etc, and etc. If one of these things happens, too much insulin could end my my child's life. And therefore, I always err on the side of caution. But I would say that when you think like that, you're just trading now for later. And I don't think that's anyone's intention. But I do think that the fear gets in the way. And that's why maybe the most important thing in the first couple of years, in my opinion, is to dispense the fear somehow, to get rid of it somehow. And I good first step, and it's especially possible because you have a glucose monitor, and you're watching with a Dexcom is to just take some crazy stab at a high blood sugar one time and just watch it and go, Okay, this is what happens. And then do it again the next time. And when it starts mimicking itself over and over again, what you can say is nine times out of 10, I'm going to trust that this Bolus is going to do this thing. And for the one time out of 10, that it doesn't, we're going to be prepared by testing at the appropriate time, or watching closely the glucose monitor. And then, you know, I tell people all the time, like, you know, like, especially at school, when you're prepping teachers and kitting, people for school, like, like I say, don't like when we're going over all this, I know that you think I'm telling you that if we do the steps, that's going to make everything go well. And what I what I really mean to be telling you is you need to understand all these steps for the time that something goes poorly, unexpectedly because it's going to, and it might not even happen this year, it might happen next year. Like it doesn't I'm not saying it's gonna happen every week even but understanding diabetes on that level, and how the insulin works, you know, with a person with type one, it helps you in the moment when the wheels come flying off the bus and the double arrows point down and you're and you're running in circles going like this. Is it this is it, this is it. But it's never it. Like I mean, listen, don't get me wrong, if if, if your kid hits a double hours down 33 At four o'clock in the morning, you're in a bad situation. But if that if that thing happens in your living room, you're really just a juice box and a bowl of cereal away from it being Okay, again, it's scary and it sucks and it's terrible. But it's not worth in my opinion trading weeks and months of high blood sugars for I mean, I don't know. That's just my opinion, I guess. But it's those are some

Beth Riegger 24:21
really powerful words. And I think that parents of T ones need to hear that. It's just really

Scott Benner 24:29
well, that's I'm glad you you feel it that way when I'm saying it because it's not judgmental on my part. Like I'm not saying no, we're doing things wrong. I'm saying I completely understand the fear. I've lived through the fear. But I have I am just as afraid of waking up a senior citizen to a phone call from my 40 year old daughter telling me that she's losing her eyesight as I am going outside to water my plants and coming back in I had to find out that my kids blood sugar's 40. Like, you know, like there's, there's no difference between those two things. They're they're both the worst things I can think of. Except that one could happen today and one I have, I would have the luxury of just saying, well, baby, that won't happen. And I'm just not a, I don't like the we'll cross that bridge when we come to it way of living. I just I don't, I don't like that. So I'd rather just look ahead on a map, see what the bridge looks like and have a plan for getting over it. I don't like hoping that the future will bring something that I want. I like being prepared, I guess. So. That's just how I would live my personal life. And it's translated into how I've tried to manage Ardens type one diabetes and how my wife has to it, it's by no means an indication that I'm not aware of what could happen with too much insulin or a low blood sugar or that I'm not worried about it. I just, I just don't want to trade one for the other. That's all. That's it. I feel like we should pause here and you can go go give Gabriel insulin and then come back, I think you mean the same thing. This episode of the podcast is brought to you by insolate. Now the back to school is in full swing, the control you get from continuous insulin delivery is more important than ever. And continuous insulin delivery is just what you get with Omni pod. 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But you know, so when I made the decision that I would accept that an ad if if one came for, for the podcast, I really wanted to be sure that it was only going to be something that that I could I can full heartedly stand behind. And I'm really pleased that insolate was the first company to reach out and maybe there'll be more but I will only take ads from companies that I believe in or that I know are providing a quality product that can help you it doesn't have to be something that Arden uses. But in this case it is I can tell you without without pause that the Omnipod insulin pump is a mainstay in our lives that has a huge impact. It is one of the main reasons that Ardens a once he is so low, I love the fact that she can. And others I gotta check on Oregon's blood sugar just a second little alarm for school. I love the fact that she can play sports without disconnecting. I feel I feel bad every time I see a kid who has to disconnect to play sport and then ends up with a high blood sugar afterwards. I honestly, I mean, obviously if you've listened to the last 28 episodes of this podcast, it probably sounds like an ad for insult anyway, but it wasn't. But huge thanks to them for reaching out and wanting to be involved and wanting to support this. I am I'm genuinely appreciative. And trust me the the ads are going to help keep the podcast going. So again, check it out. It's my omnipod.com forward slash demo. You can you can try it on the pod demo a nonworking pod for for free. And see if it's something you might like. I've spoken to you twice now once just getting ready for this over the phone and now here on the podcast. And both times. You've indicated what what Gabriel's blood sugar is to me and I've wanted to not even knowing you say to you please give him insulin right now. Like like do it, go do it. It'll be okay. And and so, you know to is you're going to see in a very short amount of time if you if you can find a way to kind of like listen, if you can't get rid of the fear right now. Just lean on me. Like you don't even mean like like just use me as a crutch instead like when you you know just send me a text and say this is blood sugar and I want to give him insulin but I'm afraid and I'm gonna be like Go for it, do it. And then it'd be that easy. It really well. Like everything in life is kind of that easy. You just need one friend with no common sense and no no fear, no fear of going to jail to stand next to you and be like let's do it. And that is why

Beth Riegger 29:56
it is so honestly Chris Are Easy, amazing about the diabetic community is that it's like I found my people, because I'm that way with perfect strangers what you just offered text me Gabriel's blood sugar is this What should I do? And want to give them this? Should I do it? And you're gonna be like, Yeah, do it better go for it. And that's what that's who I am. That's where I've always been, I was I've always been a helper and a supporter of people, even perfect strangers. And I've never found a lot of people who are like that, but the diabetes community is that we're all there to help each other and support each other and say, that's wrong, you should do this and way to go.

Scott Benner 30:42
I believe that that's an indication of two specific things, I think it's an indication that diabetes is much more difficult than an outsider would imagine to manage day to day, 24 hours a day. And when you get a bunch of people together, who understand what it really means. I think that it's difficult knowing what it's like, and living with it to not look at somebody who's a little behind you in the timeline and say, Hey, I've already been through that. Why don't you try this, this? And this, because it just feels I know, for me, it feels wrong and unfair not to pass that information on to somebody who wants it. Because for sure, you know, it's just it's like knowing there's a cliff coming up in a mile. And it's hard to see and not stopping your car and waving your hands at people, you know, like it just like, how would you not do that. And, I mean, that's what's kept my blog, Arden's day will be in a couple of weeks, I'm looking at the counter, it'll be eight years old. And I don't take ads on it. Although I've been offered ads. I've been offered free insulin pumps, I always say no, I just like to ask for ads, like all I've ever wanted was for people to be able to trust that if I'm sharing something, it's coming from a place of me saying, hey, this worked for us. Or now that I know that this is happening, I hope you can be on the lookout for it too. And maybe maybe something I say here will help you. It's certainly not money. It's an it's an it's a work of passion, this podcast is the same thing. You're just really looking to share what you know, and hope that it helps somebody else. So that's why even like, like I said earlier, like when you and I were we're going to originally speak about a certain topic. And then I got, excuse me kind of too many people talking about the same topic. I said, but we should still talk. And, and I was telling my wife, I'm like, I'm going to talk to this girl named Beth and, and she's like, What are you gonna talk to her about, I'm like, I don't really have any plans. I said, but I really hope her son's blood sugar comes up because I would if it was just a phone call you and I, this is what you and I would be talking about right now. Like, you know, that we weren't being recorded. But I think that since you're willing to talk about it like this, which is amazing, by the way, and since you're willing to record it, so other people can hear it, which again, you're you're just trying to give back into the community. And at the same time, get something out of it, like you're stuck in a spot. It's interesting, right? It's kind of very, it's kind of very layered, you're stuck in a spot, you really do need somebody to come along and put their hand on your back and be like a bath, here's something simple you could do that might really help. And at the same time, you're letting people see who are stuck in that same spot with you that you know, there's there's a way out of it for them to. And it's I think it's super important because I think there's definitely a moment when you get used to blood sugar's being 200. And you say to yourself, Well, look, he's fine, or I'm okay, if it's you even it's personally you. And there's nothing I can really do about it. I've tried, and I've tried and I've tried and I can't. So you kind of put your hands up in the air and you go, this is my normal, I live at my blood sugar right about here. And the fact of the matter is that at some point that's going to come back to bite you in a way that's you're not going to be able to get away from you know, so. So you should be congratulated for sharing your struggle. And being willing to let other people hear that you're having it because then somebody's going to listen to this, and identify with you and then hopefully, listen a little bit to what I'm saying, even though at the beginning of the podcast, but we will say very clearly that nothing on the Juicebox Podcast should be considered advice, medical or otherwise, because God knows I'm not a doctor. But hopefully someone will hear something that they'll identify with and talk to their doctor or find the you know, find the courage to make a change on their own. And I'll tell you something here about me personally. I hear people say we went to the endo and they made changes to our Basal rates. And three months from now we're gonna go back and see if they work and I'm like, you gotta be out of your mind. Like I'm not waiting three months for anything. You know? Oh, the phone Beth, if I told you the phone doesn't ring for days and days at a time I'm, I am not lying to you. Let's listen for a second to hear what? Yeah, somebody from California wants you to buy solar panels I guarantee it. or Windows Oh, you don't you get those calls, Windows solar panels. I love the guy that calls. And he goes on. Hi, I'm calling from Microsoft, because about your computer problem. And they must hit 10s of 1000s of people a day until one of them goes, Oh, I did call Microsoft about my computer problem. I can't believe they call me back so quick. And then when the person goes, Oh, great, thank you. The first thing they do is ask you for your credit card number so they can give you the service and then they steal your credit card number. And that's and then they do pretty much get off the phone with you at that point. You don't get those calls, I get them constantly. Well, I

Beth Riegger 35:46
don't have a home phone anymore. You're a genius. But I get the call on my personal cell phone, not my business line that says this is Google calling. And it's a 612 Minneapolis phone number.

Scott Benner 36:00
You know how Google does calling me maybe they're mapping cars calling you from Minneapolis, or out front? They said we're gonna be by on your street in a couple minutes. If you want to move your trash cans, you'll look much better on Google Maps.

Beth Riegger 36:12
Well, these ones are we want to help you with your business listing, right. And so I stay on and I play with them.

Scott Benner 36:21
Okay, what's the I have to have a hobby? Right? So but So Beth, can you and your husband? It sounds like you guys are kind of, are you equally? Handling Gabriel's blood sugars and stuff like that? Or is one of you more involved than the other because of

Beth Riegger 36:35
definitely me more involved than him? I work from home. I do go out and have meetings outside of the home. But for the most part, it's me.

Scott Benner 36:47
Do you feel like you have to talk to him about things you're going to do your husband? I'm sorry, we're calling him him? Must have a name is Rick. Rick, do you feel like you have to speak with Rick before you make adjustments? Or do you have no Okay, good.

Beth Riegger 36:58
But we do lean on each other. And because you know, this morning, we're texting back and forth going. Alright. Do you think it's a bad pod? Right. Do you think that it's a bad sight? Because he's sleeping knee shouldn't be this number.

Scott Benner 37:15
Yeah. Well, there's so many things that could be he could be laying on the pod, which doesn't help it. He could be he could be. Like I said, a little dehydrated. Like, I would think in this situation. The first thing I would do is give him a big glass of something to drink that had a lot of water based in it and Bolus.

Beth Riegger 37:36
Oh, we're being snappish right now.

Scott Benner 37:38
I wouldn't be too if my blood sugar was

Beth Riegger 37:39
fine. I know. And we're a pre tweet. preteen. So we got that going for us too. I asked him to have some water and he says I already did.

Scott Benner 37:53
Oh my God. Every time I talked about whatever the Lord and she looks at me like I've asked her to, to cut off her arm. So but she also knows it's true because she's seen it work. Like time and again, like my blood sugar stuck. It won't move. Drink some water. You know is are my blood sugar stuck? It won't move. Are you in? Are you in your classroom? Yes. Is it really hot in there? Yes. Drink some water, you know, and then all of a sudden it starts moving again. And I'm like, see, there wasn't this better than the alternative which was to spend the whole afternoon testing and retesting and you know, talking about maybe it's the site, maybe we should change the pump. You know, instead like just drink a glass of water first. And let's see. Let's see if it starts moving around a little bit.

Beth Riegger 38:37
You know, I never thought that water that never even entered my mind that water would have an effect on the blood sugar.

Scott Benner 38:44
It's pretty much the key to the whole thing is the the insulin just won't move around your body properly if you're if you're dehydrated. So

Beth Riegger 38:52
isn't that something that's so much from you today? Scott, you've learned

Scott Benner 38:57
nothing trust me you knew all this already. And and you just needed to I think you just probably needed somebody to tell you hey, go try it like you don't I mean like so. Do you would you be comfortable before we going off and talking like would you be comfortable talking through like a plan for yourself like what you what you want to like set a goal here and and kind of figure out steps to walk to get towards it?

Beth Riegger 39:25
Or no appointment is on Friday? So I know there's gonna be some conversation because he's been running high. I mean, it's been summer. We just got back from a vacation in the Black Hills and his insulin was exposed to 95 degrees almost every day. Right. And you know all of these factors, but the fact still remains is he was freaking High as a kite the whole time we were gone.

Scott Benner 39:52
Yeah, so now but I will tell you that Arden plays softball rather competitively. So all summer she was out in the heat too. And we did have to change insulin pumps a little more frequently at times because of that. So the pod, we didn't leave on for the full three days all the time, some days, it would come off in the middle of the second day. And then we would change it a little more frequently to kind of combat that. But other than that, like, you know, extra insulin that we carry to softball fields just goes into a cooler with ice and stays cool that way. But I assume what you're talking about, it's the insulin, it's actually in the pump while he's wearing it.

Beth Riegger 40:40
Um, no, it was the extra vial of insulin as well. Okay, so

Scott Benner 40:43
you were kind of out in the middle of nowhere.

Beth Riegger 40:45
Yeah. And through sharing that experience with my educator, she told me about this little insulin wallet that you find online.

Scott Benner 40:57
Is it called a free OPAC? Yeah, the free option? Yeah, it's got little jelly things in it. You soak it and like cold water or something. It stays cold for like, 12 hours or something like that. Yeah, that's crazy. Yeah, right. Exactly. There's a weird technology it's been around for I think we use that the first time to go to Disney when Arden was like three years old, like 6.7 years ago.

Beth Riegger 41:17
And, and 12 or two years into this, and nobody's told me about the Frito pack. Yeah.

Scott Benner 41:24
Yeah, it is. It's really sad. I mean, for just a day trip. I mean, we just, you know, we take a cooler of drinks when Artem plays softball, or when Cole plays baseball, and so we just kind of protect the insulin a little bit and put it in that space where it stays cooler. And that seems to be it. But But yeah, I mean, I just definitely think that if, cuz I, you know, we're not talking about his exact numbers, but but, you know, for a high blood sugar, I would just, like really attack it and see what and like, right now, like, don't tell me what your blood sugar is, if you don't want to, but, but I would just I would go after, like, really hard right now.

Beth Riegger 42:03
And just what the pump says to do

Scott Benner 42:05
it well, yeah. So I mean, if let's just play with a number for a second. Okay, let's say Gabriel woke up this morning. His blood sugar's 300. Right now, if he's my kid. And if Arden comes downstairs and our blood sugar's 300, the first thing I would do was I would do an increase Temp Basal 95% increase for an hour. And I would Bolus, so whatever I thought was going to bring that 300 down to 100. I would Bolus on top of the Temp Basal. And so for art, and let's think about art. It's so small. She weighs like 68 pounds. But so for Arden, I think off the top of my head if her pump thought she was 300 It would probably want me to Bolus a unit. And if Arden's blood sugar was 300, when she woke up this morning, I would probably Bolus two units. Because without testing her, I would assume she has ketones probably from being that high. And even though they would be there's a lot of assumptions going on here. But but but I would, so if your son had ketones right now, if he had, you know, a ketone, your you would be told by your endo to Bolus a unit of insulin for each point of ketones that you had.

Beth Riegger 43:24
You have a ketone meter, there's this do the P stick.

Scott Benner 43:28
We have the precision extra it's a blood ketone meter. Okay, that's really cool. You just it needs a slightly bigger drop of blood and a new tester and but to say that I test for ketones three times a year is probably excessive. So but so there's a lot of like theorizing in there. Like if if if I knew Arden's blood sugar was 300 for a couple of hours, I would assume ketones, and there'd be an extra unit of insulin with whatever I Bolus just because if she's wearing a Dexcom, so if for some reason that's wildly too much insulin, she'll start falling fast, it will tell me and I will just combat it with food, I think it's much easier to stop and control a low than it is to affect the high. So you know, like, there are times when even her blood sugar just seems stuck a little bit like it's at 180. And I've given her insulin and I'm like how it's not moving. We've tried water waters not doing it blah, blah, blah. Sometimes I'll just say Bolus for 15 carbs right now. And let's just do that. Don't eat anything, just do the 15 carbs, because that's how much a juice boxes. And so if that insulin works great, and if it's too much, then we'll drink a juice box. And then that's it. I don't know if that makes sense or not. But I think you just have to find yourself I just aggressive is a good word actually, like I think you just have to aggressively go after high blood sugars. And then once you know how to affect the high and a stop a peak, is the next is the next step like so. So say art and eat something for lunch today. And I count the carbs and I give the insulin and I Pre-Bolus. And it's all right. And then 30 minutes into, you know, after she's eaten, if if 30 minutes after Arden is eaten, her blood sugar is 160. And there's an arrow going up, I will blindly Bolus another unit. And that's really because because I've done something wrong, she's still going up in over 160. And so, because again, here's my thought, if, if I'm right, then the arrow stops and their blood sugar hangs, and then we drift back again, because I missed. And if I'm wrong, it's only a unit of insulin, it's you know, it's about nine or 10 carbs for Arden. So if I'm wrong, when we can just eat a little more food or pumping a little more sugar somewhere. But avoiding the highs is most important to me. Like that's what I avoid the highs and the peaks by aggressively stopping them. I want to be completely clear, if she wasn't wearing a Dexcom glucose monitor. Right? I would never do that would never be that I wouldn't be I wouldn't have any ability to to make that kind of decision. But, you know, it's just like, I don't know, like, you know, making dumb like, you know, say you're learning how to drive and you're, you know, some persons teaching how to drive is like, okay, so when you go to stop, you push the brake slowly, right? So when you're out driving, and you're pushing the brake slowly and you're still going to hit a telephone pole, don't you push it harder, like, you just go on, they told me to push it slow. I guess I'm just gonna crash into this pole. Like, No, you'd be like, No, I'm stomping on the brakes here, I'm gonna react. And to me, that's the greatest gift of the glucose monitor is the ability to react and to and to do something that your doctor would flatly tell you not to do, which is stack insulin on top of it, you know, because, because, and it's great advice, don't stack insulin, because if you do, you could create a low later. And it could be it could be a big deal, though. But if you've got a glucose monitor, and you can see the trend and how fast you're falling and rising, then it's a little more reasonable to think maybe the insulin is a little less effective today because it was out in the heat. Maybe I miscounted the carbs, maybe this food is going to hit her harder than this amount of carbs usually does. There's so many maybes. But at 160 Straight up, I definitely don't have enough insulin right now. Or my blood sugar wouldn't be 160 Like, right, like, I mean, isn't that the idea? Like like when somebody Pre-Bolus Is something and they get this nice, gentle rolling line? You know, the idea is oh, I gave enough insulin at the right time and the car balances right so if Oh, basil, please we're talking about insulin. Just you know, he's barking at something plastic he the

Beth Riegger 48:20
dog is Yeah, might have been pacing because they're like it's 10 o'clock and we haven't had breakfast yet. Are you kidding me?

Scott Benner 48:26
Oh my god, no. Breakfast. I'm gonna let you feed your dog first. But But does that make Does that make sense to you?

Beth Riegger 48:31
It does make sense to me. And I love the analogy of the learning to drive and slowly applying the brake. And the high is running into the telephone pole.

Scott Benner 48:43
Right? React do something don't just have a question for you to ask your questions.

Beth Riegger 48:48
So on the Omni pad, I tried to increase the Temp Basal to 95% and it says requested Temp Basal is the bots delivery range.

Scott Benner 49:01
Did you just try 90? Oh, no. It's possible that me? Okay, well, you go ahead and do it, buddy. If he can hear me or not, but he can hear you. Yeah, just do a Temp Basal increase. Try 90% for an hour and see what that does. See if it'll let you do that.

Beth Riegger 49:22
The dog was licking. So I'm wondering if the dogs can sense his Hi.

Scott Benner 49:30
My dog can't sense that a broom is not dangerous. So I'm not sure what dogs can do.

Beth Riegger 49:38
Okay, I'm down to 70% increase and it's still not enough because

Scott Benner 49:43
it's outside of his range. I have to decide if it'd be something I'd have to look into. Like do you have maybe your insulin limit your breakfast? It might it might. It might be your insulin limits that are set in things but I can find out and get back to you Okay, because it does happen to us sometimes too. And sometimes I just think it's a I don't I don't honestly understand when it does it why it does it sometimes. But you should be able to do it a Temp Basal increase. Do 50% Just see what it what it says about that?

Beth Riegger 50:18
I'm down to 30%. Interesting. Okay, when we're done

Scott Benner 50:21
this, we'll figure it out together. Okay. So it doesn't talk this doesn't turn into like, troubleshooting best insulin pump was

Beth Riegger 50:30
okay. Do a 20% increase for an hour?

Scott Benner 50:34
Not enough. I want more more insulin. Do what you can do, and we'll figure it out in a little bit.

Beth Riegger 50:42
Yeah, you can. Hey, Scott, you see his nice face here?

Scott Benner 50:48
Hey, what's up, man? Sup Gabriel? i How are you brother? Tired, tired. So here's the other thing. And this is tough. And this is a tough parenting spot. He wakes up high. And or Arden wakes up high. And she's like, I'm hungry. And I'm like, yeah, the tough eat something without carbs in it. But we're not going to start this day, piling carbs on top of a high number. Like, let's let's wait an hour, and get this in a better place so that we don't, so that this next decision we make doesn't inform the next three or four or five hours because you know, you're not going to get out of it. Right? Like if you, if you eat something carb heavy on top of a high number, that by the time you're even getting it back to where you need it to be, again, it's going to be time for another meal, you know, like, and then you're stuck. And you don't want to and you give it a whole day away then have a high blood sugar. And so I talked about it. I'm sorry.

Beth Riegger 51:46
We have been riding the high train for three months. Yeah. Or and we have not been attacking it. Like you've like you've said, You've advised and I've I've kind of done what you're exactly saying like I've okay, this is just our normal, we'll get it down. We'll do this. But I've been

Scott Benner 52:09
a day sorted into a week and a week turned into a month and it seems Yeah, it doesn't seem as bad anymore. And so and so. Okay, so I'll tell you what will will absolutely do when we're done. I think what we've talked about here is going to be incredibly, you know, interesting for people who are struggling with what you guys are, I don't think we need to talk about your personal life anymore like this. When we're done here. I'm gonna literally call you on the phone. And we'll talk about a little bit and see what we can figure out. But before we do, I want to tell you that I just spoke with Chris Freeman. He's the 20, episode 26 of the podcast. And Chris is a four time Olympian. He's a cross country skier who has type one diabetes, he's

Beth Riegger 52:54
Yeah, he was here for the tour to cure.

Scott Benner 52:57
Absolutely right. And so Chris and I were talking and a little, and we were talking very specifically about nutrition and blood sugars and being kind of aggressive like this. And I think it's interesting for you to hear and it also, it's, it's probably a little scary. But I told Chris how I think about high blood sugars. And it's a very kind of visual thing that pops into my head about what's actually happening in Arden's body during a high blood sugar. And as frightening as it is. It's what keeps me it's what keeps me motivated in moments when I'm like, oh my god, like you know, there's a moment when you want to throw your hands up in the air. And be like the dramatic person on Facebook who's just like, my life is terrible. Somebody please come over here and pat me on the back, I've absolutely got to go put my head under a pillow right now. And when those moments come to me, and they come to me just like they come to everybody else. I think about like the real, the reality of what like high blood sugar means and it snaps my ass right back into into line again. So I think you have been really, really like brave to sit here and talk about this. And I want to thank you for all the people who I think are going to be helped by listening to what you talked about today. And they listened to me a lot too, because I over talked. But is there is there anything else that you want to talk about? Or cover or say or? I mean, you just were very open a second ago saying that I think this is what's happening to me I'm we're stuck in a place where I'm accepting things that I don't want to accept. I don't know that you could possibly be much more honest than that. So you may have nothing left to say.

Beth Riegger 54:34
I think I mean, I don't I guess I don't know where that stuff came from. I don't know if it's out of fear of getting too much insulin or what it is, but I think that it's definitely a message that okay, you're in diabetes. Now you've you've got it. You've got your carb counting down. Now. You know about a one C you've got the every three month checkup? Well, now it's time to really get serious about it and attack it. Like you said, it's just a process that you have to go through.

Scott Benner 55:09
I do too. I definitely believe that in the beginning, there's a lot of this fear. I would also tell you that what you're going through right now, I'm pretty certain I was happened, excuse me what's happening to me and Arden's first two years. But I didn't have the benefit of any of this technology to actually see what was going on or didn't didn't have a CGM. In the first two years, I would have no idea how, how far off from what I was hoping to be accomplishing with insulin. I really was.

Beth Riegger 55:33
We called it blissfully ignorant. Well, you know, it's not it's not a derogatory thing. Yeah, we were we didn't know.

Scott Benner 55:41
It's funny. When I was talking to Chris, he was talking about how people treat food consumption. And he called it willful ignorance. He said, I think people ignore what they're eating so they can eat it. And it's funny how often in different walks of life, we end up doing that for ourselves to kind of cut ourselves off. And it's fine and most elicit it's fine in most walks of your life. And then in some others, it's it's a little more dangerous. So Alright, listen, let's say that this was really cool this one way better than I was hoping I, the part of me thought you were just going to be like, I'm not talking about this with you shut up. But but this was really apparently you are when Thank you very much. And, and so let's just say goodbye here. And then I'm going to stop the recording and we can keep talking for a second if that's okay. Sure. All right. Thank you so much. Gabrielle. I will I'm going to talk to you a second brother. You okay. He's back in Israel left I would have went back in my room. If I wasn't an adult. I'd be in my room. So. All right, God. All right. Thank you again for coming on. Thanks, God, I appreciate it. You can check out my type one diabetes parenting blog at origins de.com. Find me on social media at origins day or at Juicebox Podcast. If you are enjoying where you're listening right now hit subscribe. But the Juicebox Podcast is available anywhere podcasts or are procured your favorite apps apps you may never have heard of. You can listen at juicebox podcast.com. If you're a listener through iTunes, please subscribe and leave a rating and review if you're enjoying the show. Thank you very much to Omni pod for sponsoring this episode and we'll be back next week.

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#30 Talking to School Administrators that Don't Get Type 1 Diabetes

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#28 Talking Dexcom G5 FDA Approval with Dexcom's Steve Pacelli