Scott Benner 2/9/23 Scott Benner 2/9/23

#845 Ask Scott And Jenny: Chapter Eighteen

Scott and Jenny Smith, CDE answer your diabetes questions.

Is there an insulin that acts more like endogenous insulin meaning quicker acting than current options? Let’s talk about smart insulin.
If dehydrated and insulin is not working well, how much and how long does it take to get properly rehydrated?
What are the added risks of smoking to a person with diabetes?
School questions: How did Scott move from depending on a school nurse to directly communicating with Arden? How did she know when to pre bolus? Did she have alarms or did she only rely on her alerts? How did she handle texts in class? Did she wear a watch? What was your process if she missed a text? How old was Arden when she started to treat her own lows? What was your field trip protocol? Did she carry an extra pod on her?
Does a blood transfusion impact your blood sugar?
What are the settings that most often need changing when starting to Loop?

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio - Radio Public, Amazon Alexa or wherever they get audio.

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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 845 of the Juicebox Podcast.

It's been a minute since Jenny and I have done an ask Scott and Jenny episode. But here we are back answering your questions. That's right questions from the listeners, right the Jedi and just got answered for you to the best of our ability. Today we'll speak about smart insulin hydration has Jenny ever smoked, and much more? Check it out. Stay with us enjoy. While you're listening, staying with us and enjoying. Please don't forget that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, please Always consult a physician before making any changes to your health care plan or becoming bold with insulin. Now if you have type one diabetes, or are the caregiver of someone with type one, you know what I'm going to say? Go to T one D exchange.org. Forward slash juice box and fill out the survey. It takes fewer than 10 minutes. It's completely HIPAA compliant. Absolutely anonymous, easy to do. And once you finish you've helped with diabetes research. You may have even helped yourself, like the T one D exchange might come back to you and be like, Hey, are you interested in doing this? Right. And then if you are sometimes they offer gift cards. Just go check it out T one D exchange.org. Forward slash juice box. This episode of The Juicebox Podcast is sponsored today. By the Contour Next One blood glucose meter. You guys are always so generous about clicking on the Contour Next One link, I can only assume that you love it as much as I do contour next one.com forward slash juicebox. You owe it to yourself to have an accurate and easy to use meter. The Contour Next One is just that. today's podcast is also sponsored by touched by type one and guess what I did yesterday. I asked her to save the date from touched by type one. See if I can find it here. It's February now. But I could find it. Save the date it says, Hey, Scott, I hope this finds you. Well, we have begun planning our next touch by type on annual conference. And we'd love to have you join us again in 2023. Our conference will be held on Saturday, September 16. Well, that's a little something you can plan for. Check it out at touched by type one.org touched by type one does way more than this event. You can check it all out at the website. But um, I'm just saying if you can plan to come out, I'll be there making all kinds of talky talk. We'll have a great time.

Jennifer Smith, CDE 2:46
Yeah, I'm up for whatever.

Scott Benner 2:50
Since the end of the year, almost almost well, for in my mind it is because I'm making the podcasts like way out in the future. And I just edited your how Jaime eats episode, which came out really well.

Jennifer Smith, CDE 3:03
I thought of so many additional, like, additional things that I would have really added to that like, like I you know, they're just everything that you think in excess, like, I eat this. And sometimes they eat this and sometimes I gave you like this general idea.

Scott Benner 3:21
Don't be in a hurry, we can do another one. I make a lot of episodes, so don't worry. Yeah, we can come back and do a part two. Fabulous. It's like getting all that stuff together and everything and

Jennifer Smith, CDE 3:35
I'm glad it turned out well for what it was there. No, it

Scott Benner 3:38
no it definitely did in the end. I feel like they're less of a, like a checklist and more of a vibe. And I thought you did that really well. Like I think the way you think about food came across and what you eat in general comes comes across, you know what I mean? And yeah, it made an impact on me the other day i i was in between something and I walked through the kitchen and there were cookies from Thanksgiving and I grabbed a Clementine. I was like oh, I think this was what Jenny would do. So good. Very good. Yay. And by the way, very good. This is the time of year for clementines. I don't know if people know that or not. But

Jennifer Smith, CDE 4:19
it is absolutely actually growing up. My mom always had like more tangerines or oranges or something and I asked her when I got old enough. I was like here we have them more often this time of the year and she's like when we were little and my mom grew up on a farm right so they didn't have a heck of a lot. But this time of the year her dad would always go into town. Right? And like get some tangerines and they were like the best treat my mom said at this time of the year

Scott Benner 4:53
yeah, they're just for some reason. Ended November December January I must be where they where they're grown in the world. It must be the right timing for it, which is what I assumed. But yeah, they're definitely better because in the middle of the year you get them and you're like these are

Jennifer Smith, CDE 5:09
my mom always called them punky is how she said the rest of the year, they're not as juicy. The flavor is not what it's supposed to be. And you get the ones like half of your bag might be really like, dry, rather than that really big, like burst of juice that you should get your like, dry.

Scott Benner 5:29
You know, I was I know, we're not talking about where we're supposed to, but, but it's okay. Listen to people listening will decide if it's okay, if I see them clicking off, I'll know this wasn't okay. But I was in the in the vegetable aisle the other day. And there's this sign that's been there forever that I've, I mean, I don't know how I haven't seen it before. But it's tattered. That's how I know how long it's been there. All of these, all of these vegetables have been sprayed with a wax coating to extend freshness or something like that. And I was like, Oh, I didn't know that happened. I did. Did you know that happen?

Jennifer Smith, CDE 6:12
Well, you can tell though, I mean, even even like oranges and that kind of stuff. You can tell when you peel it sometimes the ones that have been coated, you can tell because it comes off on your hand. Apples as well are a common one that have that like, like, you can feel it you can almost rub it off. Because of the amount of time it goes between picking and actually getting to the supermarket, and then getting home with you. They have to do something to keep it

Scott Benner 6:44
Yeah, that's what occurred to me is that none of these things are grown here in New Jersey. I imagined. Oh, no, yeah, I'm sure. At some point they were

Jennifer Smith, CDE 6:52
right. Do you have tangerine trees in New Jersey? No,

Scott Benner 6:55
no? Well, you know, like, when I grew up, it was it was the stuff that you could grow here was grown here. In the winter, there was less of it. And we got it shipped in from the south. And anything sweet and round and yellow or orange came from an island somewhere or Florida. And that's just how it was. So now I'm realizing that they might be shipping in bell peppers from Uruguay and covering them with wax that they don't go ahead. I did not know that before. I also don't know where your way is. For clarity, just the name of the country. I mean, I pulled out of my butt, right. Anyway, Jenny, I'm going to go to our ask Scott and Jenny list. Cool of which is It's oddly extensive. Yes. And, and just scroll through a little bit, ask you a couple of questions that have been sent in by people. And we will answer them, hopefully, and move on to the good. So hopefully, if it's possible, we'll be like, I don't know the answer to this. I

Unknown Speaker 8:01
can't help you there.

Scott Benner 8:05
Do Okay, who knows? This is from Lisa. Do you know if an insulin that acts like endogenous insulin, meaning is it quicker acting than current options? is in the works. So that's a good question. Our pharma companies I mean, fiasco is here and loom Jove and a Frezza and a threat? Yeah. But are there more? I don't know the answer to that question at all.

Jennifer Smith, CDE 8:30
I know, I can tell you that there are things in in that are being researched? Yes. Where they are, I don't know. I know years ago, I attended JDRF used to have like these scientific sessions, sessions where you could come as like people with diabetes. And you could see what was in the works, right. And this Gosh, this was like 12 years ago, there was a company on the East Coast that was working on something called smart insulin, smart insulin from what I remember to the degree that this insulin would be taken once a day. And it would have almost a almost like a thermostat if you will, but but not relative to temperature relative to the glucose levels in your body. So it would see when your glucose was going up and going to rise sort of above this sort of setpoint and it would turn itself on. And then once your glucose was dropping and coming down into that setpoint it would essentially turn itself off and it worked on and off sort of all day long like that. From what I remember, it was in like the, the animal based studies, but since that time, I have literally heard nothing about it. So that's like It's like research. It's like we hear all these things. means and then there's no more news about it like where did it go? Did it get like shuffled off to Mars or?

Scott Benner 10:09
Exactly, there's the the most recent article I found online is from diatribe and it's from June of 2022.

Jennifer Smith, CDE 10:20
Okay, so not too long ago.

Scott Benner 10:23
Oral it's an overview of a smart insulin. The development of smart insulin options means designing an insulin that responds to glucose levels. Okay. We got it all that. Dr. Weiss distinguished professor at Indiana University School of Medicine explained to potential ways that glucose responsive insulin could work. Though we are still years away from smart insulins making their way to clinical trials, Oh, okay. We are years away from clinical trials. Right. Which means, what, 15 years?

Jennifer Smith, CDE 10:55
We're at work. We're nowhere near getting it into the human body to Yeah, yeah. So I think the answer to the question is, what we have right now is called Rapid insulin. It's much more rapid than it used to be years ago, and it was just regular insulin. But we're nowhere near smarter insulin that's more instantaneous, right?

Scott Benner 11:18
Like, reacts. Right? Yeah,

Jennifer Smith, CDE 11:22
it's just not.

Scott Benner 11:23
Okay. Well, sorry, Lisa.

Jennifer Smith, CDE 11:26
I know I'm sorry, to everybody. I that's just not an uncommon question. I've, I've gotten that a number of times, you know, when are we going to have insulin that just works now? And I don't have to wait and it does it faster. And it finishes when it says it's going to be done working? We I don't know.

Scott Benner 11:43
Yeah, sorry. Well, way to start off with a bummer. April wants to know, about hydration. She says she she hears people talk about it, you know, like they see a bad pump site or something or you know, blood sugar, excuse me, that's not moving. And people always come in and say, Hey, are you hydrated? Because hydration is super important. We've talked about in the podcast for a long time. What she wants to know is, how long does that take to work? Like she's saying, you know, say I am actually dehydrated. And that's the reason why insulins not working well. Is it a glass of water and I'm on my way is it I have to rehydrate my body and it's ours, I guess it would depend on how I would expect

Jennifer Smith, CDE 12:26
it's a min an average of about an hour to rehydrate. I mean, a good way to determine hydration is really the color of your your urine or your pee, right. So should be very, very mild, like a light lemonade color, if you will, right. It should not be dark. Now there are also some supplements, B vitamins and whatnot. If you take them, they can also sort of discolor the color of your urine. So that's not necessarily a good time to check. But, you know, hydration is where 60% of our body is made up of water, right. So if that's the case, hydration also means that all of the nutrients in your system that flow through your blood and need to get into the cells, they need, consistently moving bloodstream. If you are dehydrated, your body tries to pull water from other parts of your body to rehydrate and keep things moving. And so if you're not adding water back in, and you're more prone to drinking things that are more of a like a diuretic that are making you pee it out, but you're not putting it back in, you're more likely to be dehydrated, so with less fluid in the body, especially from a standpoint of a CGM. CGM is work off of monitoring the glucose in your interstitial fluid.

Scott Benner 13:55
Here's something interesting. This is NIH. Just a simple sentence. 75% of Americans are chronically dehydrated. That's it. Wow. That's a statement from October of 2022. Why is the dehydration so common? This is from Mayo Clinic. Sometimes dehydration occurs for simple reasons, like you don't drink enough because you're sick or busy or because you lack access to safe drinking water. So is this really just people just don't drink enough water? That's it?

Jennifer Smith, CDE 14:25
No. In fact, many people you know, a good strategy we talk about even in just general weight management is if you feel like you're hungry. Drink a glass of water first. Okay, most often, you your body is giving you a signal that you're misinterpreting right? You're actually not hungry. You're thirsty. So if you drink a big glass of water wait another 1520 minutes. Many people find that they're actually not hungry.

Scott Benner 14:53
Some early warning signs of dehydration include feeling thirsty and lightheaded, a dry mouth tiredness having dark colored strong smelling urine or passing urine less frequently than usual. What's now I want to know how often I'm supposed to pay.

Jennifer Smith, CDE 15:09
How often do you get to look up? How often should I go to the bathroom? Well, I mean, in general, six to eight glasses of water intake a day. And if you're hydrated enough, you should be probably going to the bathroom, every couple of hours, at least every two hours,

Scott Benner 15:32
bladder and bowel.org. Which I don't, oh, just the first one that came up. Not a number of normal urination is per day, between six and seven and a 24 hour period between four and 10 times a day can also be normal if that person is healthy and happy with the number of times they visit. So if you're not paying a lot, so then back to the person in question, I would think that rehydrating would have a lot to do with how dehydrated you are to begin with. True, right,

Jennifer Smith, CDE 16:03
right. Absolutely. You know, if you're just mildly thirsty, drink a glass of water, that probably takes care of it. But knowing as well that mild, even moderate levels of dehydration can also increase your blood sugar levels by a certain amount. And I know you've said it before, when we've talked about things like just higher blood sugars, like you force art and drink some water, drink some water and you can almost at some point, even without additional insulin, sometimes you can see a curve. Yeah, right. As you get things moving hydration that helps your body pass the sugar out of your bloodstream and you can actually pee some of it out if your blood sugar is high enough to need to do that. So yeah, hydration.

Scott Benner 16:53
Alright, I'm gonna add a little more here. How much fluid does the average healthy adult living in a temperate climate need? The US National Academies of Science, Engineering and medicine determine that an adequate daily fluid intake is about 15 and a half cups are 3.7 liters of fluid a day for men, about 11 and a half or 2.7 for women.

Jennifer Smith, CDE 17:17
Which means it goes right along with the recommendation of 60 glasses. Most people's glasses are about 12 to 16 ounces. So that goes it fits right in there.

Scott Benner 17:28
Is it the same not for children who on how much water should

Unknown Speaker 17:33
a child

Scott Benner 17:38
stay well hydrated children ages one to three need approximately four cups a day. Older kids five cups four to eight years old seven to eight cups for older children. Okay.

Jennifer Smith, CDE 17:50
And, you know, I think an important piece to bring into that too is that may be a baseline. This is just you in your normal day, right? If you are active at all, or you live someplace that is very hot, very humid, and you are active, it's very likely you need more than just the base of six to eight glasses a day.

Scott Benner 18:14
My so my daughter's home from college right now. Which means all of our girlfriends are starting to flood back in the house. Lynn, one of the girls is playing God. I hope she never hears this. Because I'm not which which is the one with the little stick. And field hockey, right? The little stick with a little curve at the end. Jenny's that field hockey field hockey, yeah. Okay, she played field hockey at college. And she's walking around with a jug of water all the time. And she's just constantly drinking and I think back to when my son was in college playing baseball, and the boys would all carry around like a one gallon jug of they were constantly drinking. Right? And these are the healthiest people I know college athletes so I don't mean I'm not I don't think I'm gonna grab a milk jug and fill it with water. But I am motivated from this conversation to do better, even though I better yes. Because I'm thinking about like, how much do I drink a day and does and by the way, let me ask you this. Does it count if it's not water, like

Jennifer Smith, CDE 19:18
you don't ensure you get some water from again it goes along with healthy eating right so you get some amount of fluid by eating fruits and vegetables because a good portion of them is made up of water. You know if you have soup that's not terribly salty. Sure that's made in a broth that is part water right? You can get it by drinking non caloric and like sparkling waters, right something like that. You're getting hydration that way. If you like herbal tea is or you know, decaffeinated tea or something like that. You're getting hydration that way so it doesn't have to be that you're drinking it eight glasses of plain old, no flavor water,

Scott Benner 20:04
right? But this doesn't count if I'm having a Diet Coke or a Gatorade or

Jennifer Smith, CDE 20:09
like the Gatorade would be hydration or it wouldn't be an electrolyte drink that they you know, Gatorade. What's the other one? Powerade. They give them to athletes, obviously. I mean, Gatorade was developed in Florida, if I remember correctly for the Florida Gators.

Scott Benner 20:25
That makes sense. I don't know that that's true. But I believe you. And but like, what about soda drinkers? Like I, I? I don't drink a lot of soda. Meaning that it's possible that a half a dozen times every two weeks, I have a small glass of some diet soda. Like you don't need me like I'm just not a soda drinker. But it's not I mean, I think we all are aware that soda is not good for us one way or the other. But am I hydrating when I'm drinking it?

Jennifer Smith, CDE 20:54
Yeah, you certainly are. I mean, there's a portion. I mean, it's not just like I hesitate to say this, because most soft drinks that are sugar in are like drinking liquid water, but are liquid sugar. But why is it liquid? It's liquid, because there's, there's water, there's fluid in it, which does provide you with some hydration, despite the fact that the other stuff that's in it isn't good for

Scott Benner 21:22
it a little like I come up on my home is burning. And I find a bucket and it's half water and half gas. And I'm like, Well, I wonder what will happen here if I just throw this off. So you're getting you're getting hydrated, but you're also getting a lot of stuff you don't need don't need and don't want. And correct

Jennifer Smith, CDE 21:41
and some of some of these beverages, too. could certainly be more of it what's called a diuretic, right? Which just encourages you to actually go to the bathroom even more than you would normally go to the bathroom. Which means that you have put back in what you

Scott Benner 21:55
sow coffee. Do you drink coffee? Yeah.

Jennifer Smith, CDE 21:57
Um, yeah, I like coffee.

Scott Benner 22:01
I've never had a cup of coffee in my entire life. So I'm outside of my

Jennifer Smith, CDE 22:05
you've never had a cup of coffee. Never. I don't think I've well other than kids. I don't think I've ever met another adult.

Scott Benner 22:14
No, I just my parents drank so much of it. And I can smell it still. It was terrible. And I associated with cigarettes too. Because it's always like a coffee and a cigarette for my father and like I just not interested. But my point is, is don't something's dehydrate you even though they're liquid, like alcohol dehydrates you. Right.

Jennifer Smith, CDE 22:34
Yeah, I mean, in many cases, it's really the caffeinated effect, right? That is more of a diuretic, which is the reason that if you really want the complete hydration, you're going to do things that are not full of caffeine. So you know, the typical dark cola based sodas, regular coffee, again, have a tendency to have more of a sort of a mild diuretic effect. Okay,

Scott Benner 23:01
because I had I recorded today before you, which I feel like I'm cheating on you. No, no. I had a cup of tea, and a glass of water with me. And I couldn't drink the tea because the tea was driving my mouth out. And I was like,

Jennifer Smith, CDE 23:20
oh, black tea. So it was a caffeinated

Scott Benner 23:22
tea. Yeah, it was and so I had to get away from it while I was drinking. Anyway. I just Googled Why does coffee make you poop so we can round out this conversation? Because because this is a integral part of some people's lives, right? So coffee sends a signal to your stomach to release gastrin this kicks off a wave of cause of contractions in your gut called PERS WHAT THE HELL peristalsis Thank you. It moves that that thing Jenny said moves food and liquid through the intestines. For some people. This leads to a trip to the bathroom in just a few minutes. Get me here seriously? Now when you go I mean next time I have to go maybe I'm gonna. I don't know. Then you need some coffee. I don't think I'm doing that. I really don't think I can. This one. Make sure it's good coffee. Well, what's good? Some people tell me Dunkin Donuts is amazing.

Jennifer Smith, CDE 24:19
How do I if I've heard the same thing? I mean, I can say that Dunkin Donuts is to me, it's okay coffee. I have grown very accustomed. After having lived in DC. I've grown very accustomed to like coffee houses that do their own roasting like in house. Okay, like I consider that good coffee.

Scott Benner 24:43
Is coffee and cigars kind of in the same vein. Like I don't know. Maybe. Have you ever smoked a cigar?

Jennifer Smith, CDE 24:49
I've never smoked anything in my life.

Scott Benner 24:52
Anything through it. Cigarettes. No cigar. No crack. Okay. Nope.

Jennifer Smith, CDE 25:00
Marijuana No, nothing I have never has anything passed my lips. Now I've probably and I'm sure I've inhaled quite an amount of secondhand smoke. In fact, I'm quite certain in my freshman year in college, my roommate who would smoke out the window, not cigarettes. I inhaled a fair portion of marijuana. Yeah.

Scott Benner 25:30
But as I get older, I just keep waiting for it to come get me the secondhand smoke. Because my dad, my son and I were talking about the other day. And he said, your dad smoked a lot. I said my father would smoke three packs of cigarettes a day, three packs of unfiltered cigarettes every day. And I mean, he would open his eyes in the morning, and light a cigarette. He'd have it in the bathroom with him. If he took a shower. He had it right till he got into the shower. If he was driving, if you if you got to a if you got to a restaurant, and they didn't allow smoking, he sometimes couldn't make it to the meal. He'd have to go outside. Like it was, like really bad. That's yeah, yeah. And he still I know him seven days, by the way. So

Jennifer Smith, CDE 26:18
I know it takes I know, it takes a certain number of years to recoup. I mean, the body is a self healing machine, right? As long as you don't continue to batter it up, was only

Scott Benner 26:33
around me till I was 13. So okay, maybe.

Jennifer Smith, CDE 26:36
So maybe you've got a lot of healing that's taken place and your lungs are back to a base.

Scott Benner 26:42
I also had a crappy job when I was a teenager. So I don't know what I buried there. But anyway, I just think about it all the time. I'm like, This is what's going to happen. I'm not going to even drink a cup of coffee. I'm gonna end up with lung cancer one day. You don't I mean, this is my Yeah, I know what'll happen. Alright, we've gotten way off the hydration path anyway. Drink water. Drink water. Yeah, it'll make. It'll make your insulin work better, and it will make your CGM more accurate.

Jennifer Smith, CDE 27:07
Well, and I think you brought up a good point, if I'm going to plug for not doing something the not smoking thing. Yeah, there you go.

Scott Benner 27:16
How much? How much more dangerous is smoking to a person with diabetes? Like what are the added risks?

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Jennifer Smith, CDE 29:53
well, many of the things have relative relevance to what smoking does to the blood vessels which we know that So we already are at risk with increased potential for damage to our vessels and to our nerves and to how our body reacts to stress. Smoking creates inflammation in the body. And those are all the things that we're trying to bring down by having optimized blood sugar levels. So it's like, You're doing all these wonderful things to manage your diabetes. But if you're also smoking, that's kind of putting some of those. It's counterproductive. Thank you.

Scott Benner 30:31
Also, you have an autoimmune disease. So inflammation is already coming for you. So yes, no reason to give me a helping hand. I don't think this one is aimed towards me, but doesn't mean we can't talk about it together. PIPA asks. Oh, oh, that's nice. I'd love to hear more about how we moved art in from relying on a school nurse to directly communicating to me, How does she know when to Pre-Bolus? Does she have alarms on does she rely on her alerts? How does she handle texts in class? Does she wear a watch? What's your process? If she misses a text? How old was she when she was able to treat her own lows? What's your field trip? Protocol? Cheese? pipa. All right, hold on. Does she carry an extra pod with her? Let's go through it one at a time. Cool. Well, I can tell you that, you know, the story of you probably know if you've listened long enough is that I realized in the summer between art in second and third grade year that I could manage Arden remotely, which had everything to do with me and nothing really to do with her. She was capable of like receiving a text and carrying out a thing in a way that I could trust. So I don't think the age is important Arden's age, I think it's Arden's ability, because if you're translating it to your kid, you know, kids are gonna be analyzed what your kid can do. 100% So, one day, I just was lazy. I didn't feel like walking upstairs. She was upstairs. And I texted her to Bolus and she did it. And I was like, oh, like, why? Like, I can imagine diabetes in my head. Now, if you don't I mean, like, you know, I don't know, like, one of those movies like beautiful mind or something. I have no idea which ones I'm thinking. I can see her blood sugar in my head. I know how much insulin is happening. If I know what she ate, I can reasonably manage her without being with her.

Jennifer Smith, CDE 32:25
And you have the benefit of looking at a CGM, as well, you're not guessing. Well, her blood sugar was at 615 minutes ago, and she was down here. I don't know if it was going up or down. You've got to CGM to be able to see where is she? I can easily text her and tell her because you also know the context that's going into the trend.

Scott Benner 32:43
Yes, but back then no. Like back then, oh, she didn't have a CGM when she was that night. Yeah, it was just coming at where it couldn't share by then. We might have a follow, we might still have it in the G four. Is that the the egg receiver? So?

Jennifer Smith, CDE 33:00
No, the Ag receiver was? Seven. That was the seven. Yeah, the seven system and then it went to the G four. And then it went to the G five and then it went to the G six.

Scott Benner 33:12
What a naming system Dexcom way to go. And so fancy back then they were probably just like, here it is. But But anyway, I realized I could do it without being with her. And that the only tripping point for me was my own fear. Because I kept thinking like, why would I do this. So we just started practicing in the house. I would just text her diabetes. Even if she was just in the other room. I was really practicing for myself. And then she went back to school in third grade and stopped going to the nurse because of that. So she could test she could send me her blood sugar's she could look at a CGM. Once it was available telling me the number that was on it. I just kind of bounced it all in my head. Did that make dependent? No.

Jennifer Smith, CDE 33:58
I think another question within that, which is sort of implied in a way here as well might be, how did you navigate that with the school nurse and the system? Right? How did you navigate saying, We've got this? These are the hit points that you have to know being the school nurse. And if needed, you would step in, but otherwise, please hands off because we have this Yeah,

Scott Benner 34:26
I might go to was usually just I just assumed they didn't really want to be doing it. And that they didn't really want to be responsible. Right? Like if you gave a school the choice between being responsible for somebody's blood sugar and not I figured they would rather not. So what I told them was, it's on me, like if something goes wrong, I did it. You're not at fault. And they were like, cool, and that was the end of it. So we did re kind of massage what what my expectations were from them. And from there, and we adjusted her 504 plan for it. But really, I have to, it sounds cynical, but the idea that they weren't on the hook anymore, I think was attractive to them. It's just always kind of how it felt to me.

Jennifer Smith, CDE 35:13
I wonder, you know, having worked with so many families, I have heard probably a good 50 different ways that school systems will or will not let things happen. I mean, whether or not they prefer to be doing it, some school systems really seem to have this, unless you don't tell them your child has diabetes at all. They have a plan that has to be followed, and much of it relies on the kid having to check in with somebody at some points in the day. So and it's hard because that many people probably want to do what you're doing.

Scott Benner 35:53
Yeah, I would, I would say that. I am not, I am not wildly different in my personal life than I am on this podcast. But I am more direct and ne than maybe some people are, and I don't be, I'm not pushing you. I'm direct. I'm like, This is what's going to happen. And then it's not open for conversation discussion. Yeah, and not in a mean way. But just, I don't leave. I think that it's, I kind of think of everything as a negotiation. And if you stop and think about how to negotiate anything, the last person who speaks wins. And so if you don't set the conversation up, where the person across from, you can respond, you sort of win by default. I don't know. That's a little. They, you know, I don't know, that might be outside of what people are comfortable with. But you have to be comfortable in the silence. You have to be comfortable saying this is what's going to happen. It's not open for discussion and be able to sit there without feeling because as soon as you feel the thing in your chest, it's when you give something up. You go okay, and then you get nervous and you give something away. And then it goes back and forth. And before you know it, you walk out you don't have anything. So anyway, going through her. How did Arden know when to Pre-Bolus? Well, that was easy. I set a lot of timers on my phone. And in the beginning, Arden had those timers on her phone as well. So her timer would go off and then we would text each other. And I'd say What's your blood sugar? If she had to test she test? If she had to tell me what was on her CGM? She would tell me and then I would just you know, say, Okay, what's Bolus this much right now Arden was using on the pod and you know, we didn't let Arden go to school on MTI. So she's been using Omni pod since she was like four, four and a half like right before she went. So that's how we did Pre-Bolus thing. It answers the question about weather alarms. How does she handle texts in class? Arden handles texts in class the same way you hear me say? Like, what I just said, basically, this is a necessity for her. We're not embarrassed by it. She wasn't, you know, she she didn't try to hide it. I mean, she doesn't love. Like she was still a kid, you know, like she wasn't looking to be texting with her dad and stuff like that. So we also kept it to a real bare minimum. Sure, yeah. That was that was that she just never want to watch. If she misses a if she missed the text, and it was, what's the process if she missed the text, depending on the context. So if it was important, or emergent, then I would go from texting to a phone call. And if the phone call didn't work, then I sent a find your iPhone signal, which is very difficult to ignore. If that would have cascaded through then I would have called the nurse's office. Sure that would have been the the last thing. How old was she when she was able to treat her own Lowe's, that was your husband, he just walked in, saw you were doing something and walked right back? He got this look on his face like oh, no, not now. And then. I don't know the answer to that question. How old was she when she was able to treat her own lows? I mean, I guess she was in third grade. Because

Jennifer Smith, CDE 39:16
I wonder if it's a little bit more depth of the question in terms of most kids can when told treat your low blood sugar by someone? They do it without question. Well, many times without question, right? They'll just eat or do what they need to do because they've been told but I think the question is really asking, would she treat her lows by acknowledging and alarm that went off on her CGM without you having to follow up and text or if you did texter, she said, I've already got it.

Scott Benner 39:52
Yeah. Oh, so if that's the question, when did I stop wondering if this is not happening? Like it's She's not handling this. Hey, I don't know, I still want her son.

Jennifer Smith, CDE 40:04
You still wonder? Right? That's

Scott Benner 40:05
a hard thing to shake, you know? Right. But I

Jennifer Smith, CDE 40:08
wonder, you know, well, if she was playing with a friend and you saw her blood sugar was where it shouldn't have been, or it was dropping fast or whatever. What age would she have already taken action on that? And said, Dad, I'm fine. I got this.

Scott Benner 40:25
Yeah, I think the answer is I don't think the answer is that clear. I, as far as timelines go, I think that I've always I mean, since we've had a CGM that shared, like Dexcom does now. I'm fairly aware of hardens blood sugar all the time. You know, like she's in college, and I'm still fairly aware of her blood sugar, you know?

Jennifer Smith, CDE 40:46
Well, you've got follow and you've got all the things to be able to watch. I mean, most parents do. So I have a

Scott Benner 40:51
lot of things on my computer. I don't even know what this is called. But I have a pulling it up. See if I can figure out what it's called. Oh, actually, it's just I have sugar me on my desk. I was gonna say sugar me. Yeah. So up on my I've a Mac computers, but up on the on the bar. Artists blood sugar is there along with

Jennifer Smith, CDE 41:14
the trend arrow? Yeah.

Scott Benner 41:15
Yeah, everything that it needs. So that's there when I'm working. But the question about when does she? So I think when she was 12, like 1011 1213. If she felt low, she would have done something. The alarms, I'll tell you, Arden and alarms. The you know, like, I don't know. I can't tell.

Jennifer Smith, CDE 41:38
Did she ignore them more?

Scott Benner 41:40
Well, how about the other night, her CGM just shuts off after she's home? And I'm like, What do you How did you? How did this happen? I'm like, it tells you all day, it's shutting off in six hours. It's shutting off. He says he'd never said that. I was like, You're out of your mind? Of course it did. No, it didn't. I'm like, Yes, it did. And so you know, like, I

Jennifer Smith, CDE 41:59
promise, that's how it's set up to do it.

Scott Benner 42:01
She swipes things away so quickly, she doesn't even know what they are. What I will tell you is that my confidence level is at an all time high, as she was learning to drive. So when she got her when she got her permit, we had a really serious conversation about that. And since then, so I guess 16 and a half right in there. I don't think about it as much anymore. Like, I know she's paying attention to it. Does she push her high blood sugar's down? As much as I wish she would if I don't bother her. Not always. So, you know, there's that. Let me just get this last little question on here. What was our field trip protocol? I went on the field trips. Does Arden carry an extra pod with her? No. The way we handle extra stuff is at school, there was supplies, but not a pump, but but not insulin. And then if she needed a pod change, I would go do it just didn't happen that often. And we didn't like leaving insulin at the school. But I guess we could have she easily could have changed it on her own. And

Jennifer Smith, CDE 43:15
now you also though it just for context, you also live pretty close to her school. So it was convenient, right?

Scott Benner 43:21
It's a couple of blocks from my house. So if if she if it was farther than I would have put insulin in the school, but I always was trying to give Arden the feeling that that that the nurse's office was not a place that she belonged. I don't know if that makes sense or not. But like I never wanted her to feel like oh, I have diabetes. So I'm one of these kids who's always in the nurse's office. Like I try not to give her that feeling. Sure, in regular life, there's like a distance in my head. If we go to the mall, it's 20 minutes away and doesn't carry supplies with her. If a pod blows up, we'll drive home. Once the drive becomes irritatingly long. You know, you go into somebody's house, it's 45 minutes away than we bring stuff with us. So

Jennifer Smith, CDE 44:05
that's well and in context there. You know, you're going to the mall, who cares if you have to drive 20 minutes back home, you're going over by a friend or something that's more of a lengthy social kind of setting. Bringing it along as in, in I guess your best interest because otherwise you're going to ruin that event. Right? Not not for the other people but for yourself and why? Right? I just have to go big just grab it when you walk out the door and just take it along.

Scott Benner 44:36
Now that she's getting older. And I'm not always with her college. Now there are times when she goes somewhere. She takes stuff with her because for that same reason because there's not a person who's just like, oh, well, I'll bring it to you right now. And that's been pretty important

Jennifer Smith, CDE 44:52
or it's a bus ride across town in order to get back to where she needs to get back to to get her stuff and then a class might be missed in the inch. You're on there. And that's not purposeful either.

Scott Benner 45:01
No, no, it definitely has a lot to do with her age and, and the amount of people who are around her to help her. Oh, cool. Cool. Let's see if we can find another one here. That doesn't make any sense. Molina I'm sorry. Does a blood transfusion impact your blood sugar?

Jennifer Smith, CDE 45:24
Oh, that's a really good question. I think we're gonna I know I can answer a question that often comes up outside of this one is, can people with type one donate blood? Yes, you can. Okay, so but blood transfusion? That is an interesting question. So what's your what answer do you find?

Scott Benner 45:47
I'm looking right now because my idea is it must. Right if my blood sugar was 200. And you infused me with some blood, that sugar was an ad? Wouldn't my blood sugar go down? But would it go down that much? Does a blood transfusion or this one? Or, or change I guess impact? I mean, my guess is it's not enough for that matter. You don't I mean?

Jennifer Smith, CDE 46:17
Yeah, there's a correlation between blood transfusion and blood glucose.

Scott Benner 46:23
Yeah, blood transfusions of bank blood products are blamed as one of the causes of hyperglycemia because they are stored in

Jennifer Smith, CDE 46:31
a glucose solution probably. Or they have glucose added to them within the other additives.

Scott Benner 46:38
I mean, I could try to say these words, anticoagulant citrate phosphate dextrose, then I mean, add it. Yeah. Good job. Good. I get through that a little bit. So here's the answer. It looks like yes, it could make your blood sugar lower. It looks like

Jennifer Smith, CDE 46:53
it could make it higher heart rate.

Scott Benner 46:55
Yeah. Conclusion we conclude the blood transfusions does not cause significant changes in blood glucose levels in the study. That's from NIH. And the question was, does sugar level increase after blood transfusion?

Jennifer Smith, CDE 47:13
But not a lot? Yeah.

Scott Benner 47:16
Does blood transfusion affect your agency? The effect of blood transfusion on a one C levels might be summarized as follows. And patients with pre transfusion a one C levels of over seven, a one C tends to fall at once, even when your agency is under seven, it rises minimally or not at all. I mean, it sounds like it has an impact, but not not a great one. And if it does, it might be on the lower side. I don't know that's a lot of information. That doesn't look like it's studied that often either. No, because here's another one, the dextrose and bank blood products does not seem to affect. So here's the answer. All the answers you can think of somebody says

Jennifer Smith, CDE 48:04
yes, it can. No, it can't Yes, by just a little bit. So in general, I would draw out of this, that it could have a minimal effect. But minimal is the important piece there that you're not going to have this exorbitant rise or drop in blood sugar because of a transfusion.

Scott Benner 48:24
Yeah, that would be okay. That was interesting. Here's one looping. Oh, God, we're up on time. Are you okay? I have five minutes. All right. One more looping. Helen asks, what are the settings that most often need changing when starting to loop? And more or less aggressive? Okay, so this is, I mean, I don't know about when you're starting? Like, I don't think there's an answer to that question. Right. You gotta get your settings, right. And then once they're right there, right, but I'm gonna go from the, from the perspective of once you have good settings, what do we touch most frequently? Because Arden's a girl, and she has fluctuations from hormones. I would say that most frequently we touch insulin sensitivity. And basil. Those are mine. What do you think?

Jennifer Smith, CDE 49:17
Yeah, I would agree. I think, as you said initially, starting with settings that are optimized before enabling any algorithm driven system, including loop gives a good base for the algorithm to then work for you. And then once you have been using your current settings, and you use loop or with loop, you probably need a good week or two to compare to the previous two weeks of CGM data and see what looks a little bit different, right? More Most common, I would say honestly most common is ISF or the sensitivity factor the correction factor, which honestly gets under adjusted in manual or conventional pumping, oftentimes the correction factor, it's like this poor little like, in the middle of nowhere, but I'm not going to consider it factor. And it doesn't get adjusted, we're probably needs to much more heavy we adjust the basil and oh, we might look at the insulin to carb ratio is but your correction factor it's not even talked about. I've even talked to many people who are like, I don't even know what this does. That's the purpose of this setting and my pump, right. But when you loo, yeah, it heavily relies on how sensitive your body is to the insulin that you have present, that it can readjust. Its predicted glucose and, and the outcome from everything that it knows about what it's given you so far.

Scott Benner 51:09
Yeah, I could make it. I don't know if I how right I'd be. But I can make an argument that your sensitivity might change meal to meal can be you know, if you're varying greatly on the kinds of foods you're eating, if you went from a salad today to, you know, chicken wings and fries tomorrow, I can see where a heavier or more aggressive sensitivity would help the french fries. And it's just, it's a weird,

Jennifer Smith, CDE 51:35
maybe too aggressive when you eat the salad, or eat the broccoli. Right? Yeah. And, and the more true image of physiologic sensitivity would really be eating clean, not terribly high fat, you know, eat a nice salad with, you know, maybe a little bit of like salad dressing on top of it or something and get an idea of how if you did get a high blood sugar? How was loop working to help you with that rise? Does it cost you back down to your target? Do you settle out there, right. And if not, then looking at another meal that did work out one time of day. And the next day, you had the chicken wings and the French fries, and doesn't look like it's working at all and you're beating it down with extra, like fake entries? That's probably not really relative to your setting being wrong. It's relative to loop working against something that's so resistant. Yeah,

Scott Benner 52:36
yeah, that's the that's the mind space, you have to put yourself in like your settings are great. If you're not, you know, for general days, if you're not over taxing, suddenly, when you over tax with a a tough meal, the settings aren't going to work for it. But we can't think about that way because people can't be changing their settings constantly. So that's when you have to start saying, Okay, I see that this food falls into a different glycemic load or index scenario, and it's just going to need more insulin than on a regular day when I'm not eating something so difficult. That's where the that's where the understanding comes in. You don't have to move settings. This person is talking about what settings move. I mean, around like I said around hormonal stuff. I like Arden's basil. I mean, I try to keep Arden's basil in a place where I don't see the algorithm having to constantly take it away or constantly add more right, you know, right where the basil seems to be working. And in the moments when it doesn't work. The adjustments that the loop has available to it are such that it can stop spikes and lows. Makes sense. Yeah. Okay. All right, Jenny, I appreciate you doing this with me today.

Jennifer Smith, CDE 53:46
Always. Absolutely. Thank you. Okay, have a good day.

Scott Benner 53:57
A huge thanks to all of you for sending in these questions. And of course to Jenny. You can find Jenny at integrated diabetes.com If you would like to hire her, she does this for a living. I also want to thank I'd also like to thank the Contour Next One blood glucose meter and remind you to go learn more about it at contour next one.com forward slash juicebox. And of course, touch by type one.org find their website and check them out on Facebook and Instagram. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast don't forget to go find the private Facebook group Juicebox Podcast type one diabetes, always free 34,000 members and counting. If you're enjoying the Juicebox Podcast, please share it with someone else who you think might also enjoy it.

#844 Would You Change Your Past

Fletcher has type 1 diabetes and discusses some deep thoughts.

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COMING SOON

#843 Cult Jam

Lisa's child has type 1 diabetes and she writes about type 1.

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Scott Benner 0:00
Hello friends and welcome to episode 843 of the Juicebox Podcast.

Today I'll be speaking with Lisa. She is the mother of a child with type one. She owns a daycare center, and she writes for her local newspaper about type one diabetes. While you're listening today, 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 healthcare plan or becoming bold with insulin. Do you have type one diabetes, or are you the caregiver of someone with type one? If you were to complete the survey AT T one D exchange.org. Forward slash juicebox. You would be helping with type one diabetes research. This survey is simple. It is easy it is HIPAA compliant. It is nonnamous. And it will take you about 10 minutes T one D exchange.org. Forward slash juicebox. Join the registry complete the survey. That's it just like that you've helped. If you're looking for the diabetes Pro Tip series, they begin at episode 210 In your podcast player, where you can find a complete list at juicebox podcast.com. We're in the feature tab of the private Facebook group Juicebox Podcast type one diabetes

this show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. today's podcast is also sponsored by the Dexcom CI six dexcom.com forward slash juice box check it out. See if you're eligible for a free 10 day trial of the Dexcom G six see your blood sugar, speed, direction and number all in one place. On your receiver or smartphone dexcom.com forward slash juice box.

Lisa 2:10
I am Lisa side tells I am a mother of four children, a wife to my husband Sam. And I own Reed preschool and camp Tuscaloosa here in Hammond to New Jersey.

Scott Benner 2:22
She has a preschool. That's interesting. Yes. How old are your children top the bottom.

Lisa 2:30
So Jaden is nine. Casey is seven. Ashton is turning five in August and Sora is turning three in August.

Scott Benner 2:40
Which one has type one? Casey,

Lisa 2:42
my seven year old.

Scott Benner 2:45
And you started a daycare just because you had so many kids, it was the only way you could afford to take care of your kids.

Lisa 2:52
So actually, this place has been in existence since 1954. And my husband and I took it over six years ago. I see. Okay. It is yes, it is beautiful to have my four children go through my own program. That's very true.

Scott Benner 3:09
Yeah. Well, and you're not paying somebody, I'm assuming you don't charge yourself.

Lisa 3:13
No, no, they're here for free.

Scott Benner 3:17
I'm just saying you have enough kids that that's a financially viable idea. Like, hey, we could either pay for daycare, or just buy a daycare. I think it's probably cheaper to buy one. That's funny. Is there any autoimmune thing your family? Do you have thyroid issues or anybody and you're connected? extended family?

Lisa 3:38
Not at all. Sam, I guess in his more further out family has some people with type one. But they're like half siblings of other people in the family. So to us, Casey getting type when diabetes was an absolute shock. It is not in the immediate family at all.

Scott Benner 4:01
Nothing you were aware of. But certainly there's a genetic connection.

Lisa 4:06
It seems so if we go off of the half sibling a few generations above us, yes. Sounds

Scott Benner 4:13
to me. How about other people with other autoimmune issues?

Lisa 4:17
Um, I don't think so. Not that we're really aware of now. Okay.

Scott Benner 4:24
So how old was Casey when he was diagnosed?

Lisa 4:28
Casey was five it was two weeks before his sixth birthday.

Scott Benner 4:33
And this is during COVID.

Lisa 4:35
Yes. Okay.

Scott Benner 4:38
How bad was it and how did you figure it out? Was it like one of those things? You just noticed something weird and followed up with a doctor or was he in decay?

Lisa 4:47
So it's a very actually interesting story is in my first article that I wrote for the newspaper describes it, but he had all these symptoms and But they, you know, as for most people, you know, unless you're aware of type one, they all seem like separate and unrelated. And, you know, it started with me noticing that he seemed to be losing his baby fat, you know, he's always been my child that had a little bit more like, you know, to him. And one day I said, Sam, doesn't he look like he's losing his baby fat? And Sam's like, oh, I don't know, you know, maybe. And then and that was actually like, you know, a few months before we discovered he was type one. But then it got to the point where my three boys like to hang together. And you know, one of them or all of them, I wasn't sure who those wedding head. And so after, like a while this happening, I was like, Okay, we gotta like, figure out who's doing this. So I separated them out. And I realized it was Casey, and like, I was concerned, because, you know, he's, you know, he was almost six and be wetting the bed to the degree, like, pick up a sheet. And it was like, it was head to toe. It was like nothing I'd ever seen before. And, and in the meantime, he was also like, to drink milk, like, every 10 minutes, and he had scratches on his face. And I'm like, Why aren't these healing and he got to the point where we had a playdate. And he's just like, he went on the couch, sat down, covered his head, and I'm like, What are you doing? Can you see like your friends over right now. And he's like, Oh, I'm just tired. I'm gonna rest. And I was like, That is interesting and strange. But okay. And then it got to the point where he came down to our school, we had opened our school, the older ages during COVID. And so that allowed him to be in the school again. And my staff member came up to me and said, Casey's really tired today, I'm going to, you know, just let him rest. And I looked over at him, and he was lying on the couch in a ball. And I was like, something's wrong, like something's not right. Like, his best friend is here like, this is this is never going to be like my son, like, you know, declining to play or engage. So I took him upstairs. And he and I started, I was like, I'll do your work with you up here, where you just, you know, hanging out with me and, and he fell asleep. Like, I'm talking like, he was like, awake. And then his eyes closed. And I was like, wow, okay, they must be really tired. So when he was sleeping, I Googled his symptoms, because there were just too many of them that were concerning me. And type one was the first thing to pop up, but because it doesn't run in my family, you know, to my knowledge, and I just never imagined that he would have that. So I read Google his symptoms, and it said, oh, like urinary tract infection. Is it okay, I don't really think it's that. And then I thought to myself, well, we'll take him to a doctor, you know. So, he napped, he woke up later, he seemed to be feeling a little bit better. So he was said to stay with a friend of ours for a few hours. That night, because Sam and I had a COVID shot, we had to go and we didn't want to bring all the kids. And she happens to be type one diabetic. And so we took two kids that to her house to concern another friend's house. And when we came back to pick him up, I had just told her ahead of time, I never mentioned I Googled anything. I never even mentioned type one, I just didn't cross my mind that it could be. And when we picked him up, Sam gets in the car and, and he says stuff thinks that Casey's diabetic. And the minute he said that, like all the alarm bells went off, because that's what had popped up on Google,

Scott Benner 8:57
that I had said, Oh, no, it's not that, right? Yes.

Lisa 9:00
And I was just, I was terrified. And I had read about ketoacidosis. So I knew it could be serious. And so we got home, and I started calling people. And, you know, his teacher was like, you know, if you're really concerned, maybe you should just go to the hospital, you know, don't wait to see a doctor tomorrow. And I called my mom. She's actually been a person in the diabetes field for 10 years. And she published his papers on it. And I said to her, how scared I was like, what if using ketoacidosis? And she said, you know, take him back to steps house and have her testing with her blood meter. And so we drove him right there. I left Sam with other kids. I took him there. She tested him and she had like one I don't know if I've ever seen one of these since then, but she had this alarm that flashed and I won't Never forget it, it flashed, she grabbed my arm and looked at me and absolute terror. And she said, This is not good. And in that moment, I thought my son was gonna die. I thought I was gonna lose him. And I burst into tears. And she retested him to be sure and his blood sugar was 676. And, and she herself as a type one had never seen a blood sugar that high. So we immediately rushed him to the emergency room, I ran in there, like, you know, we've never been admitted so fast, because I could literally say like, he's type one, he needs to be on an IV now. And he was later transferred to a much better hospital. And they told me that if he had gone one other night, they don't think he would have woken up

Scott Benner 10:53
early. So that's a lot. That's a lot to go through. And you were able to get in no problem, even though it was COVID. time they got you right in the hospital.

Lisa 11:03
Yes. Thankfully, he went right in. And I just remember, like, there was so much in those two days that we were admitted in the hospital. And I had grown up with a family friend who's a diabetes type one for about 50 years. Hey,

Scott Benner 11:26
I'm sorry, you cut out for a second, you grew up with a family friend,

Lisa 11:29
who has had type one diabetes for now going on about 50 years he got in his 20s.

Scott Benner 11:35
I want to stop? Can I stop you for a second here before you tell me about that? Because there was one thing about the previous part of your conversation that threw me for a loop. So you said that there's you didn't think about diabetes, because there was no connection to your family, you didn't know anybody that hadn't your family. But then when you said your mom worked in the field, I have to admit that confused me. So what is your mom do now? So she,

Lisa 11:57
um, she is a professor of education. And she so it actually ties into this friend, I was about to tell you about a family friend. He's had diabetes for 50 years. And I've known him for 35 of those. And so she, after observing him, over the years realized that type one diabetes is like, a job. And she's like written, you know, she's in the education field, she writes descriptions of like, what does it take to like, do certain jobs. And in the case of type one, there's no days off, there's no like, you know, holidays, or there's no night off, there's just no time off period. And she realized that to take care of type one is, is at least as complicated as a middle level job. So if you think about, like, what you have to do to respond to type one during the day, during the night, all the unpredictable factors involved, like treating a problem? Do we even this solution is a problem right now. You know, she was a comparative being a lawyer, how does it compare to being a custodian? How does it compare to this, and it's a very complicated job that people don't sign up for, and they don't want either. So the rate of non compliance for caring for type one can be like sort of low. And to her like goal over this time has been to, like spread awareness about how complicated type one is, and to help people in the medical field to almost like, like, realize that this is a serious job that people aren't going to comply with, unless you, you know, break it down to like, their individual needs, and, and levels. And they can, you know, understand exactly what's involved in have the support that they need to comply.

Scott Benner 14:00
I see. Yeah, the idea, I guess, being that, you know, if you get thrown into a thing, your ex, your understanding of it is not good. You might not be, I mean, intellectually prepared for it. And then all of a sudden, it's life and death. It's very important. The doctor sends you on the way out the door, thinking, Oh, I explained everything to them. And then if you don't have good outcomes, their expectation is often that you didn't try, when really, you were never set up for any kind of success to begin with. And now you're at odds, kind of quietly. It's interesting, isn't it? Like quietly at odds because the doctor believes you're not paying attention, but they don't really say it to you, and you think you think you're failing? And you don't really ever say that out loud, either. It's, yeah, you get into a bad communication loop.

Lisa 14:50
Yes, exactly. And, like one of the things that I realized in those days at the hospital is I said, I just don't know how someone that It's never graduated high school, for instance, can take in all this information, like my first article says, uh, you know, I'm a smart person, but to suddenly have to learn how to become like a clinician for your child 24/7 to prevent them from dying on possibly an hourly basis, it and then go back to full life at full pace and all your other obligations and distractions, like it's a job that like they're sending you well to do it with like, is almost no preparation and they're throwing all this information at you, like, oh, you should be able to absorb this in about three days or six hours. And it's not the case, you leave the hospital, feeling terrified. And knowing that you have, you know, so much that you still have yet to learn so much that you don't understand. And in some cases, like we did, we had like, almost no support from the medical field when we left because our insurance was ending the one we had it, the company had gone bankrupt. So we suddenly had to go to a different insurance that no longer accepted that hospital, and to get an appointment at the next hospital took months. So we were literally left hanging, and we relied on people in our town, our friend, like my mom, who has more knowledge than the average person to help us, you know, get through this, and even like emotionally support us. And it was at that time that I realized I was sitting down like about four to five months later, just absolutely inside, distraught, and very aware that I had had I thought I knew about type one because I grew up with someone who had it, seeing them for 35 years. But in that moment, I realized I had zero understanding of type one. And I felt terrible that here was this friend of ours, living this day in and day out in front of my very eyes. And I had no clue about what he was going through until my son was diagnosed. And when I realized that I said, I have to do something, I have to spread awareness, I have to prevent someone else's child from going into DKA. And like I have to, like make it known that like all these misperceptions about type one out there, like they need to be cleared up. I mean, I remember when Casey was diagnosed, my husband, I said, Did we feed him too much sugar? You know, and clearly that's not the case. But like, the responses we got for like, you know, how did he get it over time, like, you know that there's a lot of people that don't understand it. And those a piece in my first article, where I like had to convey what type one means. And by the time I get to the end of the article, I said, it's like you're holding a little heartbeat in your hands. And you're the number one barely trained doctor. And I say wouldn't you want to be a perfectionist too, because a heartbeat is basically in in that scenario. I was comparing it to the pancreas, you need it to live, you need it to survive every single day. And if you're not monitoring it, then you lose the life.

Scott Benner 18:31
Lisa, I used to couple things, I used to say that in the beginning, when my kid was first diagnosed, it felt like I was in charge of her breathing, and that I had to literally say breathe in, breathe out. And if I forgot to say it, she wouldn't breathe. Like it felt like that. It felt like that was my responsibility. And to make you feel a little better, maybe about having a, you know, a lifelong, like, person you knew with diabetes, but then didn't see the diabetes in your own kid. My best friend was diagnosed with type one when we were like 17 or 18. And, I mean, I don't just mean like a good friend of mine. I mean, you know, like, I walked outside, he was waiting for me. He walked outside, I was waiting for him. There are very few things we didn't do together. When we had girlfriends. We dated together like we were together all the time. He had diabetes. This was the late 80s and early 90s. And he was very private about it. And I guess even to call it private might be a misnomer. I just don't there wasn't much for him to do. Right. He shot like regular and mph in the morning and at dinnertime. He didn't really do much else other than that. But it wasn't for literally weeks. And weeks after Arden was diagnosed that I thought, Oh Mike has this. I didn't even make that correlation. Like a person I was around constantly who had type one diabetes. And then I don't know how many years later 16 years later, my daughter gets it and it never entered my mind that my Best friend has it. It just, I don't know, it just, it never did. So, and now you're having an incredibly common reaction to, to a new diagnosis, this feeling of wanting to go out into the world and make sure everyone knows everything, you know, and to say that you're maybe the, you know, 1000s, the person I've met who's had this feeling who's done something about it is probably an understatement. There's probably been more. Can you talk a little bit about the specific drive that makes you want to do that? Is it is it is it that you thought you're gonna lose your sight, and you're trying to save somebody else from being in that situation?

Lisa 20:42
So it's, I guess, a variety of things. First of all, I don't ever want anybody to lose a child, if they can prevent that. Just the fact that we could have lost Casey was absolutely traumatizing. So there's definitely that involved. The other factors are that I realized that when I didn't see what my friend goes through, I realized that diabetes is such a silent disease, like so many people deal with it, without the public eye really having a clue of what's going on behind the scenes. That that is partly why it's sort of, like almost stigmatized is something that, oh, it's no big deal. You know, but it's a very serious deal. And so I wanted to dispel the kind of thought process that the general public might have of one, like, what is type one, you know, you don't get it because you ate too many desserts. And too, you know, what people are actually going through behind the scenes that no one is ever witnessing, like, I didn't really witness too much with my friend. And I knew personally what it felt like to go through this process. So I, so like, my articles that are published monthly, are basically mine in cases journey and Sam. And what happens is something that I will write about, and I want other families to feel that they're understood that, you know, they can, you know, be related to somebody else's have feeling exactly the way they are. Or they might learn something from my articles that they didn't know, since I started writing. I mean, I've put some on your page, I haven't put all of them although if you don't have a problem with it, I I share just, you know, to help people, but I put some on your page or other pages for parents of type one diabetics. And the feedback I've gotten from them is is absolutely heartwarming, and amazing. I've had people like me saying, like, I'm like a savior in their lives for giving advice, or, like, thank you so much like no one in my family or my friends and newsstands, what we're going through, can I share your article like this will help them understand our reality. I've had people, I've actually had people, I've met people that live within my vicinity that have type one, some of them even with other kids have type one, some of them even some ham into itself, that read my article, and are like, Oh my gosh, like you're not that far from us. So it's also brought me some like really nice connections. So that you know, I can support people here and in the the thing that's amazing about it is in writing to help other people. I never realized that indirectly, it would end up helping me like my last article that's so publication now is about diabetes, distress. And I think pretty much any parent of a type one child is going to go through that. And the solution for me that I realized over this time, is that and helping other people. It helps me. It helps me get through this. And I know that if I can make a difference in someone's life, that's amazing. I thought like if my article reached one person, maybe it saved one life, even if it's like 10 years from now, someone remembers reading about DKA, or whether my article helped one person explain this disease for their family. But in the end, I saw that my articles have ended up helping maybe even hundreds of people, you know, manage through this. And like I couldn't really ask them more than that. Just knowing that I can like maybe make a difference in someone's life. There was the one article I wrote about the meaning behind a die aversary I know that none of you Every you know, wants to feel the need to celebrate a day the child was diagnosed with a life changing disease. But the article was more of like the perspective of like, well, we can't make this diseases appear, but we can decide how we respond to it. And I got almost more feedback on that article than even many of the others, where people wrote me and said, like, you change my perspective, like, I'm gonna go bigger on this celebration, or I'm going to celebrate now I wasn't going to before, like, I literally changed and maybe I've impacted someone's life for like 20 diversities to come, you know, was before they may never have, you know, looked at that day as something to try to make positive in some way. You know,

Scott Benner 25:48
where do you where do you write these?

Lisa 25:51
I, so I like them and I. So I live in a small town, and there was a local newspaper here called the Hamilton Gazette. And way back before COVID hit, my husband and I were were writing articles for them about parenting and with our experience in childcare, and then COVID hit and you know, I was unable to write, I had to focus on my business. But so one day, five months after PT was diagnosed, I sat down. And I just wrote that first article, it poured from my heart rate into the keyboard, and not one word was changed from the minute I started it to the minute I ended it. I emailed it to the Gazette. And I said, by no means do you have to accept this article. But I read in this, and obviously, I'm passionate about spreading awareness, and I plan to write more. And basically, without any hesitation, I got an email back, saying, how should we end this, you know, because at the bottom of all the articles, they say, you know, Lisa side tells and Sam side tells her the only read, please go on campus, Felisa and they have four children are active members of the community. So I said that was fine. And since then, she's been publishing my articles, I can't even begin to say how grateful I am to her, because through her, you know, publishing them, it's allowed me to reach an audience I never thought I would ever reach. And it's, and it's made actually other impacts in Hamilton. And in the type one world in ways that are absolutely beautiful. It's led to huge fundraising events supported by our town. We just recently did one with the Hamilton Lions Club, we're members of the Lions Club, and it was an Easter family event to raise money for JDRF. And because that interviewed us about that, as well. And in the event, I remember thinking, I don't know how many people will show up. And before it even hit 10 o'clock, I think it was 945. In the morning, a line of cars started coming and it just didn't stop. And when I saw it, I started crying. Because the community support was more than like, anyone could ever hope for There ended up being hundreds of people on our property. And that for that day for this event, hundreds. Excellent. It. It was amazing. And we ended up raising $7,300 For JDRF.

Scott Benner 28:37
Wonderful, Lisa, how aware are you of the podcast? You listen to it? Your podcast? Yeah.

Lisa 28:45
Yes, I so I really plan to listen to a lot more episodes, but I definitely listen to the ones in the beginning, like what you're talking about, you know, just what the different terminology means. Especially with people just starting out. I just,

Scott Benner 29:02
I only ask because your story is incredibly similar to mine. Except that happens. You know, later, you know, in time, and it's backwards as far as where you decided to write. So most of what you just described happened to me. My daughter was diagnosed, I felt an overwhelming sense of loss, and then an incredible responsibility to take good care of her. You become incredibly aware suddenly that other people might not know about this, you want to protect them or maybe put a thought in someone else's head that might help your kid one day, I started to write on a blog, which was not a thing back then. It's interesting like big blogs. Were just getting started when I made a blog and you are starting to write in print which kind of isn't a thing right now. Like like didn't really mean but you but you got on it anyway and it's it's doing the same thing. I would tell you that you In the first year or two that I wrote my blog, I describe how I reach people the same way as you, if I just reach one person, I think that's wonderful. I couldn't believe when you know, 100 people showed up at a thing, or something like that. It's very, very similar stories, which I just, I really do think that your reaction to diabetes and my reaction to diabetes initially were very similar. They just they just aren't I'm sure that most people have, you know, some variation of a certain feeling that I'm sure there's not 1000 different feelings, there's probably a few different ways people go, you want to get motivated, tell somebody else. It makes you sad, you hunker down, like the whole thing. And you talked earlier about how, how unfair it is to be thrown into this new job without any training or tools, and maybe an obviously no desire to do it, initially. And that you have to go back to your regular life and do this thing, like you suddenly have two jobs. And I, I've always felt very grateful that when my daughter was diagnosed, I was already a stay at home father. So basically, the things that I was supposed to do. If I ignored them, it just meant there was more laundry piled up, not that I wasn't getting paid at my job that I was paying the bills with. You don't I mean, like, it's, it's, it's an overlooked thing, that people get sent home, to go back to their lives, and to start a new life. And that these two things have to happen at the same time. But you don't get 24 extra hours in the day or two other hands or eight more hours asleep or something like that. Really, really, I'm just Yes,

Lisa 31:32
that exactly. Yeah. Like I would say like that maybe that's like a differentiate between us like, like, we preschool and camp Tuscaloosa are technically like two different businesses, they get different age groups of kids, and they keep me and Sam working 24/7. So I definitely felt overwhelmed. Not to mention, I have four kids total. So you know, it was very overwhelming to me, and we don't have family that lives close to us. And the mom is the closest one about an hour 10 minutes away. So we didn't even have like, hey, I can come over and you know, you know, give you guys you know, some time to recover or anything like, you know, my I did, my mom did come for the first weeks to help out. She's always been like, you know, a huge support for us in every way possible. But you still it's not like you have like the grandparents that live next door, you know, so it was definitely a lot for us to take in. And, like I am grateful that we had families and Hemington that were like if you need anything like you know, if you need advice, or you no need to learn how to do anything like put on a Dexcom I remember being terrified of putting on a Dexcom the first time so I had my friend come over and do it because her type one daughter, you know has been doing this for years more than us and in now I feel fairly like oh gosh, I didn't know how to put on a Dexcom it seems pretty easy right now, but it was terrifying because you there's it's such a high stakes disease that if you mess something up, then it's a huge problem. Certainly. Yeah, yes. And like, I think in our journey, you know, a bunch of my articles like touching different things, but I think the thing that's, like probably traumatized me the most in our journey is when a doctor made a deadly error with my son, and we almost lost Casey. Again, because of that deadly error and I don't know if you've ever talked to anyone else, or a doctor's made such a horrendous mistake before.

Scott Benner 33:50
You're gonna find out the second least because I don't know what you're talking about and I want to hear about it so Casey had had diabetes for how long when this happened

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Lisa 36:41
we met this doctor in April he was diagnosed in so you diagnosed March 1. And we met this doctor at the end of April. Okay, so it was like two months later. And at the time, I was very concerned that I you know, really didn't have too much of a good feeling about what I was doing to care for my son. Like diabetes always makes you undermine your self confidence. Like it undermines it, it makes you question everything and am I doing this right? And, you know, at this appointment, it was like pretty, like a pretty basic appointment. And I had expressed it that appointment, you know, my son's about to start our summer camp. It's active eight hours a day, I'm worried like, I don't know how his blood sugar is going to respond to this. And like, really, it was just like, Okay, well, we'll see you back three months later in July. And I was like, Okay, and so I went. And you know, we went through three more months, his blood sugar was all over the place. Thankfully, his nurse at school, her son actually has type one. So I've been blessed in having this amazing person looking out for him at the school. But our camp, you know, it's me and Sam. So So basically, when we went back in July, I was very frustrated, I said to the doctor look like I need more diabetes education, I need somebody to like, you know, that actually checks in with me more often. Like, I need more. And I need you guys to explain, like how the dosing chart works and how like what these factors are, that are affecting my son, because I know like activity affects things. Obviously, what you eat affects things, illness affects things, etc. There's all these like things that you can always put your finger on. And so I was frustrated, I demanded that and I also, you know, explained to him how his blood sugar's would just like be like so high at various points during the day. So he came back in with a new dosing chart that we were going to follow because we weren't doing the calculation part yet, we will just go off of a dosing chart. Like if he's eating this many carbs, you're gonna give him this much insulin, if his blood sugar is this, you'll add that amount of insulin. And we haven't learned the calculations at that time to do it really on our own. So in this chart, and I'm looking at it, and I'm thinking, okay, you know, it's more insulin for the carbs, more insulin for the blood sugar. I did you know, he did say we're going to try to get those high spikes down. So it's like, okay, you know, when I left, I was like, gosh, I hope you know now I'll feel more confident in managing this condition. And so I bring Casey back. I dropped him off at the camp, and I and Casey and all I can say to this day is think my son was not hungry. And he said, I'm not hungry Mom, I want to just go play at camp. So I sent him off with his counter. I told Sam who was on the property. You know, Casey doesn't want to eat right now. He has a new dosing chart with him here it is. And I had to go take my other son Jaden to the eye doctor. So on the way there, I say go run some errands to the camp, and then I'll stop at the eye doctor. So I'm literally sitting in the eye doctor's office four hours later. And the doctor is trying to talk to me about my son, and I get this phone call. And I answer it. And the nurse on the other line says, don't use the new dosing scale. And just like that, and I'm like, what? And she never says like, why, but I sense in my heart that something is terribly, terribly wrong. Yeah. And I said, Yes. And I said to her, it's four hours later, like, I can guarantee you that my husband has used this chart by now. Like, it's been four hours, and she said, Call in now, I'll call you back in 10 minutes. And I was like, okay, so I called Sam. And he had used it about an hour earlier to dos Casey. And I was just panicked, because I still didn't know why, what the problem was, but I knew something was wrong. So I said, Sam, go get him now. Like, run like you've never run before and get our son. I called his counselor. And I said, like, you know, where's Casey? Where's Casey? And she said, Oh, we just got out of the pool. And I was like, Oh, my God, like, because the CGM doesn't have a signal in the pool, right. And so I knew that nobody knew. And they wouldn't know for the next 30 minutes, probably what his blood sugar was in that moment. And so I said, Watch him to Sam now, like, stat. And so Sam gets to him. And by that time, kisi is struggling to get up the stairs to our house. Like he's crying. He's like, disoriented, like, my husband's telling me this later. And I'm terrified because I'm not even there. Yeah. And he can barely climb the stairs. And my husband uses the manual tester to test him. And his blood sugar is 26. And my husband just saw tatting him chug juice, so you can't believe. And it took, I don't even know a while until Casey's blood sugar finally climbed back up to 71. And in the meantime, the nurse calls me back. And she says, Did you get a hold of him? And I said, Yeah, I did. I said Casey's blood sugar was 26. And he just got out of the pool. And she says, Oh, no, I am so sorry. This is our fault. I am so so sorry. And I said to her, I'm not gonna lie to you right now. But I'm completely traumatized. Like, my son could have blacked out in the pool, he could have blacked out after he got out of the pool. And like, I don't know, like, you know, people have told us that they don't even know if we could have got into him fast enough with like, the, like, the glucagon, or any of that with that kind of low blood sugar. And, and she's like, well, let me call your husband right now. Like, and talk to him. So she called him and, you know, assess how Casey was doing and she had told me the doctor would call me back to the doctor eventually called me and I relate everything to him. And he's like, I'm so sorry. This is our fault. And I said to her like him, I said, How did this happen? You know, like, and he's like, Well, I a nurse took the wrong scale or have a binder and I'm like, what? And because this past before his eyes, you know, it passed before her is it bad? Or did you just hand me something from a binder and not look at it? No. So I thought to myself like you know, every single person in that practice is liable for my son was dying right now. And I just couldn't believe and he's like well you know, his tail will be under a different nurse from now on but in my head I'm like and also it will be under a different doc. You know, like this is not okay with me. And I just remember I finally got home like when I got to Casey I just like you know, housing like can't believe and and then it took and then I had to make sure you know over that time and you know through the night that that insulin wasn't still like working we had to give him like more carbs and like stop his activity at Camp obviously. Because the scale once you added the extra insulin for the cards and the actual zoom for the blood sugar, it was at least five times as much insulin giving given to him than before. And as you got higher up the scale. Sometimes it would like the highest it would be would be like nine times as much insulin like if you got that high up the scale which thank God we didn't know And it was just like an astounding difference between what they were giving before like, and we all know that half a unit of insulin one way or the other can, or even a unit can like cause some serious effects, or would you get to like five times the insulin, or more like he basically had handed us a death sentence and was having us give Casey that sentence by, because obviously, we're injecting him with that insulin. So

Scott Benner 45:27
I have a question. So do you recall, like going back to that time, like, for instance, what a unit was to cover? And then how much a unit was to cover after they gave you the new scale?

Lisa 45:40
Um, I think that's in my article, I'd have to like, look back at the article to honestly say like, what it was off memory, but I do believe I put it in the article wasn't what,

Scott Benner 45:53
I'm sorry, was it enough that you that it was like startling, or were you so new at it that it wouldn't have mattered, like you didn't have the, you didn't have the blow through it at that point.

Lisa 46:03
So looking back, so as an unexperienced person that was like, I need diabetes education, I need this and that, I didn't see it. When he handed me that chart. Like I was just too new to this. And, and that's in where it comes in, actually, that how his life ended up being saved. But by that nurse calling it she told me a few months later, when I actually met her in person that she called because of my request for diabetes education and understanding the scale like she had just seen the notice, I guess, in her computer, that down to look at this chart, do calculations, and she's like, Wait, something's not right. None of this makes sense. And that's when she called me in a panic if I hadn't requested diabetes education and help with that chart. My son might not be alive today, like I really couldn't say. And the when I look back at it, now, you're way more experienced, I would definitely say like, five times as much as much insulin to correct like, you know, some high blood sugars during the day, that's too much like the I think the max dose we would ever have given Casey. At that time, I think was like, three units or so, you know, now he's maybe gets up to like, if he's going like, all LP, ice cream party day, you know, maybe he'll get six units, but something like that was above that, right? Like, that would have been like, you know, at this point, in my experience level, a huge red flag. So it just that like these, I was supposed to, like trust these people who are supposed to know way more than I know about this disease only like five months in. And it got to a point where my type one friend who is responsible for saving cases life, she said to me, Well, 100% responsibility for his condition is staggering. Because you now have to question his medical team, you have to leave wondering, Is this accurate? Like you you lost that confidence that you're supposed to have in the medical team?

Scott Benner 48:24
Can I ask you Have they had I mean, did you leave them pretty soon after that?

Lisa 48:30
So I switched location. I never went back after that I switched location, I travel over an hour to get to this new hospital for him i because there's nothing really close to that or insurance except, and it's under a team that is just completely the opposite. When we first sat down with them, they gave us diabetes education, they asked us well, what do you know, explain to us what you know, so that they could see well, do you know what you think, you know, so we did that? They they went over stuff that we hadn't really learned well, yet. They went over like, you know, more stuff on nutrition. They answered all our questions. And they helped us they gave us pediatric supplies that I could not get under our insurance like it is crazy to me in this day and age that I am being denied pediatric pediatric supplies for my type one son. So what we ended up doing sometimes was we couldn't use a pen to inject Casey because he was only on half unit doses like increments. And the pens came in one unit so they wouldn't even give us half unit syringes either. So I would have to take a one unit syringe, put it into a pen, pull out, you know, whatever the half unit one and a half units by the half unit, inject it into KC and then the pen of course was is no longer valid because you've punctured it. So it can never be used as a pen again. So even if one day he was like, Oh, he just needs one unit insulin, I can't give it to him for the pen, I still have to use a needle. And it was like these crazy things that I'm going through between his medical team and insurance stuff. It got to the point where it's like, is this the norm for families with type one? Is this just like, crazy, unlucky knee? Because if this is the norm, like it's completely unacceptable, has that been 100 years in? Yeah,

Scott Benner 50:34
has that been the case at the new place? Or is the new placement better?

Lisa 50:37
So the new place has definitely been better. The one thing that are up to me is that we got a letter from them saying that they were unable to negotiate a contract with the current insurance we had. And so they were going to no longer be able to accept it. So on a dime, I had to suddenly switch insurance, and which meant I had to switch pharmacy medical supply company, and even like, figure out like, sometimes I get last minute that Oh, his Dexcom is no longer going to come from, you know, this one durable medical supply. Now, it's a pharmacy prescription, like things like it was everything was a mess. And I swear you not as soon as I get two weeks in on this thing, insurance, I got a letter saying, Oh, nevermind. You know, we've renegotiated we'll continue to accept it. And I was like, you've got to be kidding me. Are you serious? Give me let

Scott Benner 51:31
me do that. First thing is, I wondered if the new place was better medically, but the insurance thing, it wasn't what I was wondering. But I will tell you this. And this is a good thing for all of you to know. Hospitals will use their patients the way television programs use their viewers when they think they're going to get cancelled. So this is a, this is common practice. So like if your TV your favorite TV show looks like it's not going to be renewed by wherever it's on Netflix or somewhere, then the TV show will go out into the public and say, you know, tweet to this person, make noise on social media tell people you want to watch the show, blah, blah, blah, excuse me. I've seen this a number of times, I'm comfortable enough saying this is true. When hospitals can't get contracts with insurance companies, they gin up the patient population, they get them upset to try to get them to yell at the insurance companies. I've seen this happen a couple of times, it's really shady. But it definitely goes on. So if they think a big insurance companies shake, you know, really it's never about it's not usually about not reappearing, it's usually about contract money. And so they try the hospitals will try to sick the patients on the insurance company to get public opinion moved in their direction. You used to see it a lot when we were younger, the cable companies would send you a text and say, You're not going to have FX anymore after June 30. And you know, if you're not happy about that, somebody better call, you know, Cox Cable and let them know, you know what I'm talking about?

Lisa 53:11
Yeah, I can totally see that happening. I guarantee

Scott Benner 53:15
that's what happened there. But my question was more about medically, the new place medically is more stable and has better advice.

Lisa 53:23
Yes. And in fact, I finally at his last visit, which wasn't that long ago, I finally got the doctor I want, she has type one diabetes, and she even has the same pump as him. And she's so sweet. And she's so friendly. And I was like, finally, you know, my son finally has someone that understands what he's going through, can like, you know, give him like emotional support and not just see him in the office. And then 10 minutes later, Okay, goodbye, you know, next patient, you know, but actually relate to him when I told her I actually I showed her to JDRF has made us the 2022 family team champion for South Jersey one more, which is a huge honor. And I showed her a video that we made with Casey talking about being in one walk and she literally started crying, because she knows what it means to find a cure for type one, she knows what Casey is going through. And for me to finally have like go from a doctor that almost killed my son to someone who would never let that happen because she knows what it means to live with type one. Like I couldn't ask for anything better than that. I was very fortunate.

Scott Benner 54:50
I was gonna ask you, but you left the the first practice so quickly. You don't have an answer for it. But I but I did wonder I mean, it's a big mistake. Don't get me wrong. Like I'm not saying that's wrong. On, but it was one mistake. And so was it as easy as a nurse picked up the wrong piece of paper and read through the wrong numbers? And would that crappy care have continued or not, and I get leaving to not find out because to your point, it did have to pass over the eyes of the doctor. And you would think that someone would look at a number and go, this is a newly diagnosed, you know, six year old kid, we just, we just gave them a new chart that's five or six times greater than what we've given them. That doesn't make sense. That's not right. Somebody should have noticed I'm on but I do wonder, if you would have stayed, maybe you would have got stuck staying, if you would have learned that that was a one off problem. Or if you would have continued to have problems like that.

Lisa 55:41
I don't think I would have stayed because like, you know, some other examples where like, I just didn't feel like we got enough support. Like I did feel like it was like, Okay, we saw Casey now 10 minutes later, goodbye next patient. But also it was because like they sent me, it's like they didn't really take the time to know like what our situation is. And like they would send me like directions like to download the Dexcom clarity app so they could see his stats. And for me, like in that time of my life, it was very overwhelming. I'm not like the greatest with technology. And I was like, I call them and I said like, I would really appreciate it. If someone could call me and walk me through this. Instead of saying, here's another 40 steps on your plate to add to your normal day to day and night tonight, take one management. And so they did have a nurse call me because of that and walk me through it. And it did take a while like I was on the phone a while going through this process. And like to me that shouldn't be standard procedure that you just hit Hey dumped this in their lap to like, it should be like, hey, you know, do you need help? Getting the software downloaded? Like, let me walk you through it. And so the character wasn't what I think a type one family needs, like you're trying to do so much on your own with this disease. It's so unpredictable and chaotic at times, and like you're still trying to learn it, you need more support, like one of my article says like the first few months in a diagnosis, you should be seeing someone monthly, you shouldn't be seeing someone every three months, you know, you should have someone checking in with you weekly, you know, Hey, how's it going? Because there's definitely some adjustments in insulin dosing that you could do. Like, if you see a week oh, this isn't working. There's a new parent in this is like, I don't know Is it just me messing up. But in the end, it could just be the insulin chart is not good enough to have an adjustment

Scott Benner 57:41
or contact with somebody would be really beneficial. You know, it's funny, you brought up the decks like just like, here, download this thing, you know, I'm going to tell you the truth. For years, my daughter's Children's Hospital has had a really great online portal where you can see your tests and all that stuff. And they always give you a piece of paper like here, you should get on the online portal. And every time I go to do it, it doesn't work the way it's supposed to. And I never finished. And I do mention it to them. I say hey, I'm having trouble getting on the portal, and they'll say, oh, ask the personnel front, they'll give you the instructions. So I've seen the instructions, the instructions suck. And you know, I can't get on the portal, and then it just gets dropped. Like it's like, okay, like if the online portal is so freaking important. Like, to your point, someone go get a laptop, and let's get me on the online portal, because there's obviously something I'm missing. I don't know what it is. I'm a fairly adept computer user. I mean, you know, they'll tell you like, oh, we hear that from other people, do you? Well then maybe change the instructions or fix the, I don't know, like, Why is it my job to put me online portal, you know,

Lisa 58:49
exactly, there should be way more support for everybody managing this and, and just to go back to the other point of why would leave them is because this new place just handed me a bag full of diabetes supplies that I could not get from the insurance. And no place was like, Oh, well, you know, let's arrange a zoom call. Let's figure out how to insert a one unit syringe into one unit pin and try to somehow come across with some half unit dosing from that. And like just deal with this with other places like you can't get this here you go. Here's like five Dex comms, like three transmitters, half unit needles, and then like, you know what Lisa effort into calling the insurance and saying, Hey,

Scott Benner 59:36
Lisa, Hey, what's up half unit syringes? That shouldn't be a heavy lift to get you some half units. Like I mean, what are we talking about here? They cost nothing. You know, whether you have insurance or it's somebody just needs to get your prescription so you can get the damn things and be done with it or hand you some samples or something. Instead of just letting you flounder and making this thing that is already difficult, more difficult. You're struggling, they're struggling someone, someone should should I take your point, when you're struggling, someone should get you past the struggle not point out that you're struggling and go, Oh, here's a piece of paper, you should go home and download an app like, Oh, thanks.

Lisa 1:00:16
Like, there really was like, no support and like, and of course, someone like my mom who like meal the last 10 years has made it her living to try to make, you know, medical providers and have like, this is a full time job like this is more complicated than a job you some people go to every day, and they walk away with at least a paycheck here like, you're there's no holidays, no time off, you're not earning any money. You're just like floundering on your own, trying to figure out this crazy, complicated disease. And like with almost like no support, no, a lot of our support at the beginning, like I said, came from the town. And in the people that knew what it meant to have type one.

Scott Benner 1:01:05
We say it's a really interesting mixture, right? Because we live in a society where we say, we want to help people, but then our institutions aren't really set up to help them. And yeah, and our attitude is, Oh, you got type one diabetes. And that's tough luck. Good luck. But our outward messaging is you got type one diabetes, oh, no, you have insurance, and we're a hospital, come here, and we'll help you. And then you go to them. And then the help is lackluster. At best. Sometimes there are some places where it's terrific, your your experience, not good. And so even that's going on, because you keep saying this one thing, which I think is interesting. It's the idea of like, you've been thrust into a thing that you don't want. And yet, there's no way for you to avoid it, you have to do it. But there's always that underlying feeling of this isn't even something we did to ourselves like, it's it just happened. And then there, there's gonna be other people who hear that and think, well, listen, that's bad luck. You don't even like I didn't, I had a car accident, I didn't want to have a car accident and my leg broke. And yeah, you don't even like it. In the end, what you're looking at is, is a specific story about a bigger picture. And yet somehow, somehow, kind of the kindness of us, right, who the people who become nurses for great example, like caregivers, and people who want to help other people, doctors who say that this is their life's calling, like they all gather together in a place and then are unable or unwilling, or don't know how to reform the system that they get put in. So that all that all the things that they wanted to do when they were younger, or when they were in school can actually happen. Because this is just like medicines like politics. In that you see a bunch of well, meaning people who are like, I'm gonna run for Congress and change the world. And 10 years later, this guy's in the pocket of everybody, you know what I mean? Or, you know, a little kid says, I'm gonna grow up, I'm gonna be a nurse, I'm gonna be a doctor, I'm gonna go help people, then they get thrown into the system, and the system runs them over. And meanwhile, all this effort and good intentions never reaches the people it's intended to reach. And so instead of this well oiled machine, that could really be I mean, look at all the man hours and the effort that's being put in by the nurses and doctors. Like imagine if it was directed back into the world in a more, I don't know, well thought out fashion, or in a way where it wasn't, you know, strings weren't being pulled by money and insurance and all these other things. All the efforts were all the efforts, they're all the people are there. And the outcomes, not there.

Lisa 1:03:49
Yes. And like everyone questions to this day, why it's not just a standard procedure to test kid's blood or their urine at a checkup or yearly checkup? I've seen that question like so much. And I know JDRF is trying to change that, but

Scott Benner 1:04:05
it's like, we see you know,

Lisa 1:04:08
medical doctors out there that have no clue what type one is to this day. They have they clearly haven't been trained in it. They don't know what even symptoms to look out for. Because we all know it's misdiagnosed as flu strep stomach bug growth spurt, you know, to this day, and it's like every time I see like a new family diagnosed on one of these support pages on join to my heart just hurts because I know what they're going through. And it's like almost inevitable that that's going to happen because there's the like, the another reason for me when you spread awareness is these doctors. If you're going to be like a physician, you need to be aware of type one, and the incidence of it is increasing. I mean, the statistics in the future don't look good. The incidence and rates and children are increasing and The general public doesn't realize that 93% of people that get type one, have no family history of it. And it's going to affect any race, gender, ethnicity, any anybody whatsoever, like anyone is at risk of getting this. And so even though there were sent people like, oh, there's only like a 1% chance of me ever getting it? No, I look at statistics very differently than most people because like, I also had a 1% chance of getting a DVT, deep vein thrombosis blood clot, and my son was born and I got it, you know, my son only had a 1% chance of getting type one, well, he got it, you know. So like, I don't look at a percentage like that, like, everyone needs to be aware that this could land in your plate, or it could land in your friend's plate. If you're a teacher in a classroom, a kid in your class could get it, like everyone should be aware of what to look out for, so that that child doesn't dive in DKA will even have to land in DKA, you know,

Scott Benner 1:06:01
well, you know, in the end, Lisa, what you're saying is 100%, right, right. In a perfect world, we'd all we test everybody's here and we would, you know, everything would happen. But I'm gonna tell you right now, like just from what you're saying, and a little bit of Googling, there are 73 million children in the United States. And what's it say here from 2002 to 2015. study identified 14,638, us younger than 20, who were newly diagnosed type one diabetes 3916, dually, diagnosed with type two, even if the even if I'm finding bad numbers, the point is, if there were a million kids diagnosed with type one diabetes every year, they're gonna tell you Well, that's only a small percentage of the children that there are, and we're gonna put our efforts somewhere else. Like, it's, it's whoever makes the most noise. You know, if you really want, if you really want to get, you know, the medical community to test every kid at their wealth visit, then somebody's gonna have to throw a lot of money into it and push really hard against, you know, the governing bodies of these doctors and force that like, no one's going to do it on purpose. And the insurance companies are going to push back because 73 million tests a year, times whatever the insurance company says that test cost is more money, and then they're gonna say to you, and then you're gonna tell me you're only gonna find blah, blah, blah, many like, and then you're gonna start talking about people like numbers, and not like,

Lisa 1:07:23
just you're not gonna look at them as life. Right? You're gonna look at them as just a number. Yeah,

Scott Benner 1:07:28
because there's somebody somewhere an actuary somewhere sitting in a room that says, Listen, and I don't mean, listen, this isn't my, these aren't my words, but this is what I imagine is happening in the work the world, right? Like, what are we talking about 100 kids died a year from this. That's how they're gonna think about it. You know, what I mean, of 73 million 100 of them die. And they're gonna say, statistically, you know, not important, except, you know, to those 100 children, of course, and their families, of course, is the most important thing in the entire world. So how do you get, like, where do you point those resources that how do you make those decisions? How do you force people to make those decisions in a world where, let's not forget, in this isn't a world where a nurse, a trained medical person called you up and said, Hey, start giving your kid five times more insulin they use, though? So you're asking a lot, Lisa. Yeah,

Lisa 1:08:23
I know. All I can say is like, at least, you know, through spreading awareness. No, that's what I said, if I reach one person, and they're like, hey, like, oh, like someone paying a lot could be a sign of type one, well, maybe 10 years down the road. It's their kid or their neighbor's kid. And they're like, Why doesn't my son stop wetting the bed? Like, they're like, Ha, you know, it's something clicks well, and they think back, like, if even I say, one person, you know, or change some person's life in some positive way they give, it's not going to be at the higher level system, you know, then at least I can do what I can, you know, I think my level

Scott Benner 1:09:01
think of you, me, even in the same way, right? I think of what you're doing and what I'm doing. It's the same thing. Like we're satellites. We're just we're amplifying the signal and sending it out farther. Right. Yeah. And then the satellites are in a system where they all kind of maybe they don't talk to each other. Maybe they do actually, where, you know, you're not the only one doing this. I get I guarantee you, there's a Lisa in every town across the country. Oh, I hope so. Right. And they're, and they're writing for their little local newspaper and making sure that they know. And every once in a while, we get a New York Times writer whose kids diagnosed with type one diabetes, Nate, and they do the same thing you did. I've seen that happen in the past. I had lunch with one of them one time, they had the same feelings you had and they just had a bigger pulpit to yell from. Yeah, and they choose something. They pick something they think's important, and they amplify. And I did the same thing. Like Like, Lisa, this is, you know, I'm sitting in front of a number of computer monitors right now. And one of them I don't usually do track the downloads of the show so carefully. But this is the last like eight hours of the last day of May, for my statistics, and this month just became the most popular month of the podcast ever. So that's amazing. And so I'm watching it. And if I told you rough numbers this month has more downloads or streams, people get upset when I say just downloads they're like, but I stream it does that count, it counts, if you're listening to the show, it counts, this month has more of those than the first two and a half years of the podcast it. That's amazing. And so sometimes the message you send out, people really want to hear, and then you find ways to turn off the power on your satellite. And then you start reaching more and more people. And you might do that one day, you know what I mean? You might be doing it right now. And you don't even know what you might be reaching more people than you think. Or someone else might read what you wrote and say I'd put that in my newspaper, too.

Lisa 1:10:56
And yes, I mean, that's one thing is I was just scrolling my Facebook like not that long ago, a few weeks ago. And on my page, one of my articles shared by someone randomly on a diabetes page that said, worth the read. And I was like, Oh my gosh, that's my article. I know. And I have no idea how many other shares there are out there because like, I didn't know she shared that one, you know, but like, if my words somehow travel, you know, farther than that's amazing. My mom because she writes on diabetes. Her last paper that was published within this last year was an international journal. And she actually cited for my first four articles, and that one podcast we did for diabetes Awareness month with my husband. And so now like, you know, there are somewhere out there International, but some of these diabetes pages are also like they have people from like Australia, and like all over the place. So these people are reading, you know, the Hamilton Gazette, all the way out in you know, places all over the place. Yeah, yeah. And maybe they're sharing it with their people. And immediately, my word will spread further than I'll ever know. You know, I don't know. But if it does, that would be amazing. I know, like I told you, my goal was to reach one person just like yours was and if and if it gets bigger and farther than that, then I will die a happy person, you know,

Scott Benner 1:12:28
least I'll give you some examples. This month in the United Kingdom, more people listened to my podcast, then listen to it worldwide. In the first year, it was out. Well, yeah. And in Australia, and Canada, New Zealand, the United Arab Emirates, Germany, Sweden, Ireland, the show is in every country in the world. And it was not my intention, I did not think that would happen. And I really just, I really was just doing what you've described earlier, I had seen something. I thought it was unfair for other people not to know about it. And I said, I wonder how many people 110 100 I could reach and hopefully make their lives easier, or healthier or something. And now here I am, the 2022 I wrote that first blog post in 2007. So long time ago, you know, so wasn't wasn't instantaneous or overnight or anything like that. But it actually ended up working. And, and I just, I love your story. I think what you're doing is really wicked cool. And, and I hope you keep doing it. And I was happy to let you come tell the story here today. I have to go I'm running out of time. But is there anything that we didn't talk about that we should have? Did we miss anything?

Lisa 1:13:42
Um, no. But like, I don't know if you're able to link up any of my articles in the podcast notes, but I'm happy to show them if anyone wants to read them. Like I said, like they are meant to spread awareness but also to help people in your community, family friend or otherwise, just understand, like, what you may be going through. Yeah.

Scott Benner 1:14:05
You send me the links. And when it posts I'll put them up. Yes. And

Lisa 1:14:11
and I will never forget, I have to end by saying this. I will never forget that you said when someone asked how you got on the Juicebox Podcast to say Do you remember what

Scott Benner 1:14:22
you said? Godley so what did I do when I say

Lisa 1:14:25
that I sent you a message way too long to read. So there was just shorter and faster to interview we

Scott Benner 1:14:33
call this an interview really is specious to begin with because you are a chatty, I found myself thinking. You might not know what your husband and children's voices sound like. You were you were such a good talker, like you get going and you just you know what you want to say and you're clear and concise and you tell a good story. Do you let the other people in your house talk or now?

Lisa 1:14:54
Oh my gosh, I'm actually more laid back in my house and my husband But the funny thing that you mentioned that is my husband said, Oh, you would talk about type one all day so you'll be fine. And my mom was like Lisa, you always so well spoken, you have nothing to worry about.

Scott Benner 1:15:11
Oh, no, you're terrific. You really weren't and I was happy for it. But the first couple of times where I'm like, I've got to run her over so I can say my thing here I was like Lisa, Lisa, Lisa and then the problem he says, when I do that, my brain goes Lisa Lisa culture, and then I lose my thought for a second. But no, you were terrific. I was thrilled to have you on.

A huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juice box. Thanks also to the Dexcom G six dexcom.com forward slash juice box. See your blood sugar, the number the speed and the direction on one little look, swipe up on that phone, pull out that Dexcom receiver and the information is right there. Set your alerts and alarms where you want them next comm makes that up to you. dexcom.com forward slash juicebox thank you so much to Lisa for coming on the show and sharing her story. I really appreciate it. I appreciate all of you listening. Please don't forget to subscribe or follow in Apple podcasts Spotify, Amazon Music audible wherever you listen and tell somebody else about the show. That's our grows. What else check out the private Facebook group Juicebox Podcast type one diabetes on Facebook and don't forget the the website juicebox podcast.com. All those different series. After Dark defining thyroid bold beginnings pro tip all that stuff is at juicebox podcast.com is a big list of them there. You can actually listen to them online if you want or you can just use the list to refer back to your podcast app. It's completely up to you