#1830 72 Days Later - Part 1
Kelly opens up about raising two teens diagnosed with Type 1 at age six. She discusses international living , multiple miscarriages , alarm fatigue , and managing different sibling personalities.
Companies that Support Juicebox
Key Takeaways
- Early Symptom Awareness: Recognizing signs like excessive urination (saturated diapers) and extreme thirst is critical for a timely diagnosis, especially in toddlers.
- AI as a Medical Tool: Utilizing tools like ChatGPT can help parents synthesize symptoms and seek urgent care, though it requires verification by medical professionals.
- Rapid Tech Adoption: Moving quickly to CGM (Dexcom G7) and Automated Insulin Delivery (Omnipod 5) can lead to impressive initial outcomes, such as a GMI of 6.9 within the first 100 days.
- Dynamic Honeymoon Phase: Physical activity levels, such as starting daycare, can dramatically shift insulin needs and cause unpredictable blood sugar drops in newly diagnosed children.
- The "Why" of Autoimmunity: Statistical data shows a significant surge in autoimmune conditions over the last 40 years, likely driven by modern environmental and lifestyle factors rather than genetics alone.
Resources Mentioned
- Able Now: ablenow.com
- Dexcom G7: dexcom.com/juicebox
- Omnipod 5: omnipod.com/juicebox
- Integrated Diabetes Services: integrateddiabetes.com
- Juicebox Podcast Facebook Group: Join the Community
- Wrong Way Recording: wrongwayrecording.com
Introduction and New Beginnings
Scott Benner Welcome back, friends. You are listening to the Juice Box podcast.
Zach Alright. Hi, Scott. Thanks for having me. My name is Zach. Upstate New York is the location. My daughter was diagnosed with type one diabetes exactly seventy two days ago.
Scott Benner If your loved one is newly diagnosed with type one diabetes and you're seeking a clear practical perspective, check out the bold beginnings series on the juice box podcast. It's hosted by myself and Jenny Smith, an experienced diabetes educator with over thirty five years of personal insight into type one. Our series cuts through the medical jargon and delivers straightforward answers to your most pressing questions. You'll gain insight from real patients and caregivers and find practical advice to help you confidently navigate life with type one. You can start your journey informed and empowered with the Juice Box podcast.
Scott Benner The bold beginning series and all of the collections in the Juice Box podcast are available in your audio app and at juiceboxpodcast.com in the menu. While you're listening, please remember that nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan or becoming bold with insulin.
Scott Benner This episode is sponsored by Able Now, tax advantaged savings accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs, and many people in the diabetes community do. With ABLE Now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. Learn more and check your eligibility at ablenow.com. You spell that ablenow.com.
Scott Benner Today's episode is also sponsored by the Dexcom g seven, the same CGM that my daughter wears. Check it out now at dexcom.com/juicebox. The podcast is also sponsored today by the Omnipod five. And at my link, omnipod.com/juicebox, you can get yourself a free—what I just say?—a free Omnipod five starter kit. Free. Get out of here. Go click on that link. Omnipod.com/juicebox. Check it out. Terms and conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox. Links in the show notes. Links at juiceboxpodcast.com.
Seventy-Two Days of Chaos
Zach Alright. Hi, Scott. Thanks for having me. My name is Zach. Upstate New York is the location. My daughter was diagnosed with type one diabetes exactly seventy two days ago.
Scott Benner Really? Yes. Wow. What has you here with me so quickly?
Zach Well, I guess I tend to go down rabbit holes, and I'm quickly discovering that type one diabetes may be the ultimate hole. It's a hole. Alright.
Scott Benner Yeah. There's a hole where I throw all my happiness and everything into. Yeah. Seventy two days ago. That's such a specific number. You're not, like, putting lines on the calendar or anything, are you?
Zach No. I did that math just this morning. I was trying to think of—you know, I don't have a story like your last guest, Lauren, on your Nobel award winning greatest podcast ever—so I was trying to think of what's interesting about my story. And I guess you might say the perspective I have is just sort of that first hundred days of chaos. Yeah. And I said, how many days has it been? December 27.
Scott Benner Yeah. Yeah. That's a story in itself. I'm glad you're doing this. But wait. Two days after Christmas?
Zach Yeah. Correct. Oh my goodness. Alright.
Scott Benner Well, let's find out about it. So prior to that day, anything on your radar, noticing changes, concerns, or did it all just happen at once?
Zach Yeah. So my daughter was saturating her diapers. Right? I know that's one of the most common things. We were, I think, maybe motivated to try to potty train her because our other daughter was born 10/13/2025. And so we didn't wanna have two in diapers, but it became sort of urgent when those diapers were multiplying seemingly.
Scott Benner Were you saying you don't wanna be buying diapers for two people is what your main focus?
Zach I wouldn't put it on the financial aspect or just the physical. So I'm a 41 year old father of a two and a half year old and a two month old. I already had a bad back going into it.
Scott Benner Zach, I feel like we need more background. Hold on a second. You have two kids. Is that right? Correct. Is this your first marriage?
Zach Yep. This is my first marriage. We started kinda late, I guess. We got married in 2017. So we took our time with the kids. Some of that was because, you know, we weren't a 100% set on it from the beginning. And the other part of it was because by the time we decided it was what we wanted in life, it had become a lot harder than it might have been if we started earlier.
IVF and Genetic Questions
Scott Benner You didn't have the energy to have sex, or there's just it wasn't taking—what was happening exactly?
Zach Who knows what the cause was? Undiagnosed infertility challenges we did have. So both kids were IVF, so they're actually fraternal twins. I don't know what that means in terms of the chance that my younger one will also be type one.
Scott Benner Oh, wait a minute. So you—if I use the wrong word, stop me—but you harvested two eggs, implanted one, then waited a little bit, and did the second one?
Zach Yeah. So the way it works with IVF often is you're trying to get a bunch of healthy embryos, and then they kind of study them and they figure out which one has the best genetics, and that's usually the first one they'll put in. And some of them don't make it through the process of freezing and studying the DNA and all of that. So, you know, if you get 12 eggs and then, you know, a certain number of them make it to day five, which is when they freeze them, so then maybe you're left with six eggs. And then they study the DNA, three of them have imperfect genetics, which is, you know, what causes miscarriages. So then maybe you just have, in our case, three good embryos. And this was after, you know, multiple other trials where we didn't even get any good embryos, and so that could have just been age. They don't know why that happened in our case.
Zach But eventually, you know, we had a beautiful daughter, and she's wonderful. But eventually, we learned she had type one diabetes. But yeah. So her sister was from the same clutch of eggs, and that's essentially the same thing as being fraternal twins.
Scott Benner Do they use the word clutch or did you just say that?
Zach No. I don't know where I got that term from, but it's sort of like when they take the eggs out of your wife, you know, it's like sort of a clutch of eggs. Yeah. No. I mean, that's a great term. I hear it all the time when people are breeding animals and reptiles and stuff like that.
Zach Well, that's what we're doing, Scott. Yeah. Yeah. I was like, by the way, when your first ends up with type one, do you go back to the doctor and go, like, you told me you pulled out the healthiest. Like, what were you looking at exactly?
Zach So, Scott, as you know, I think most people who get this diagnosis, they say, how did this happen? In our case, it's even more so because they've done all these assessments to make sure these are the perfect embryos. And—but I guess that in those tests that they run, there's not one that finds whatever codes for the precursors of type one diabetes even though after diagnosis, we found she had the two—what do they call it?—antibodies or whatever, two of the three markers that indicate you will eventually get diabetes, so they're able to confirm those.
AI Diagnosis and Hospitalization
Scott Benner I mean, I don't even have any idea if that's a thing they could look for in that stage. But—
Zach I guess maybe it develops later. The story does get a little better, Scott. So listen to this. Our second daughter is born, and my wife had some sort of, like, morning sickness, but the whole pregnancy, and that's called hyperemesis gravidarum. But, anyway, the baby comes out. The baby's healthy. She's a couple weeks early. She's okay on weight, but she is the first percentile of human height. So that combined with a couple other things, the doctor said, we wanna run a few more tests. This baby looks okay, but we wanna rule out a couple things. So I take that information. I enter it in chat GPT, and it tells me there is a one in seventy thousand chance that my daughter doesn't have a horrible genetic disease. So we are panicking from October to December that our second daughter has some rare condition.
Zach We—now all the tests they ran came out negative. She does, as far as we know, not have a rare genetic condition, but that was like a crisis in and of itself. And then our other older daughter gets diagnosed with type one diabetes after all that. And what happened one morning was my older daughter had an ear infection. I entered that along with, "hey, she's also been drinking a lot of water and saturating her diapers" into ChatGPT. And ChatGPT says, "go to the emergency room right now. Your daughter has type one diabetes." I tell my family this. They don't believe me because of what happened with the other daughter.
Scott Benner Yeah. No. AI told us the other kid was gonna grow a horn, and it didn't. So it's—wow. No. By the way, nobody trusts AI. So right. Did you lie and tell them you googled it? I might have done that if I was you.
Zach No. I was honest. Yeah. My wife wanted me to go to the doctor for the ear infection, so I went and they pricked her finger as soon as I told them about the excessive urination.
Scott Benner How about that? There it is. Yeah. My goodness. Well, how long do you think it would have gone on for if you didn't go to ChatGPT and just ask it? Do you think you would have figured it out on your own without something just mirroring right back to you and going, hey, that's—
Zach You know, what's interesting about that question, Scott, is that so far, other than maybe some crankiness with highs, our daughter doesn't have the recognizable symptoms of highs or lows. And so I don't know how we would have known something was up other than the urination becoming intense, which, you know, I was like, well, maybe she's just, like, too big for the diapers now, and that's why they keep filling up so quickly.
Scott Benner I had all those same kind of silly thoughts. How old is she exactly when she was diagnosed?
Zach So she'll be three on April 15.
Scott Benner April. So it was December. She was—
Zach Two and a half ish. Arden was, like, a month past her second birthday. Yeah. I know. And we had that whole vibe thing going on too, like, the heavy diapers, and Arden was sicker than what you're describing.
Zach Yeah. So they said we were in DKA, but maybe a mild form of it. So I think the acid wasn't too high or the ketones. Her blood sugar was about five eighty five. Our A1C at diagnosis was 12.2.
Scott Benner You would have—I'm guessing it would have rolled over her pretty quickly in the coming weeks if you wouldn't have figured it out right then. So good job. Yeah. I mean, I'd hate to know what that looks like.
Management and Open Source Exploration
Scott Benner No. It's not a lot of fun. So well done. I hope you felt good about it. I mean, I know that's a hard thing to say, but, like, you figured something out and saved her a lot of heartache.
Zach Yeah. I guess maybe in a way. So day 72, I'm looking at a fourteen day GMI—if most of your audience knows what that is—of 6.9. We just crossed over that threshold from seven, which feels like a win. Feels like we're getting somewhere.
Scott Benner Well, no. That's insane. Like, how are you accomplishing that? I mean, she's three. Right?
Zach Yeah. So within two weeks, we were on a Dexcom. In less than a month, we were on an Omnipod five. We have been to our local pedendo practice who we got frustrated with, maybe unfairly because I was deep down the rabbit hole, and they weren't there with me quite so quickly. You know, as you know, some of the doctors are pretty conservative and guarded, especially with the little one trying to avoid lows. Right? Well, what does that mean? That means highs. So, you know, we then went to specialists at Yale, but they don't take insurance out of state. So now we're working with Columbia, and we've brought Jenny's firm Integrated into the mix. And we're not stopping. We're on Omnipod five, but we may be on Trio pretty soon here.
Scott Benner You think you might try a DIY system?
Zach I think so. I mean, I haven't listened to too many open source episodes yet, but I look forward to doing so. I mean, if I read the tea leaves on the forums, if I listen to the way a diabetic reviews Tandem or an Omnipod five, you'll hear things like, "but I'll never get the control I get on open source." So my instinct is let's go. You know? Let's do as good as we possibly can for my daughter.
Scott Benner Yeah. I mean, don't know, man. It's—I think it's so personal and variable specific, right, down to, like, how active you are, how you eat, how particular you are about making sure your settings are good, pre-bolus. And there's a lot of different things. Right? So I see people do incredibly well on retail systems and all of them. Like, forget Omnipod five—but, yeah, I see people do well on all of them. I can never tell—I guess what I would wanna say is that I can never tell when someone's online and they're like, you know, product A, I didn't like, but product B is perfect for me. Sometimes I sit back and I wonder, like, is it maybe that they just learned more between the first one and the second one?
Zach There's definitely some truth to that, Scott.
Scott Benner Yeah. You know what I mean? Like, because you can make reasonable arguments for all the different algorithms. Right? Like, you say, well, Medtronic has that meal detection technology. I hear people who love that, love that. And there's people who are telling you, like, Omnipod five, like, look, it is, like, truly tubeless. That is incredibly important to me. People on Tandem talk about how well Tandem goes now. People are using Twist and enjoying that and etcetera. Like, they all seem pretty similar to me. Right? When they say personalized, I think there's just a lot more to it than that. And when somebody tells you they did vastly better on one than the other, it is always gonna make me wonder if I was there, what would I see that they're not seeing?
Sponsorship and Daily Management
Scott Benner The Dexcom g seven is sponsoring this episode of the Juice Box podcast, and it features a lightning fast thirty minute warm up time. That's right. From the time you put on the Dexcom g seven till the time you're getting readings, thirty minutes. That's pretty great. It also has a twelve hour grace period, so you can swap your sensor when it's convenient for you. All that on top of it being small, accurate, incredibly wearable, and light, these things, in my opinion, make the Dexcom g seven a no brainer. The Dexcom g seven comes with way more than just this. Up to 10 people can follow you. You can use it with type one, type two, or gestational diabetes. It's covered by all sorts of insurances and—this might be the best part—alerts and alarms that are customizable so that you can be alerted at the levels that make sense to you. Dexcom.com/juicebox. Links in the show notes. Links at juiceboxpodcast.com to Dexcom and all of the sponsors. When you use my links, you're supporting the production of the podcast and helping to keep it free and plentiful.
Scott Benner Today's episode is brought to you by Omnipod. Did you know that the majority of Omnipod five users pay less than $30 per month at the pharmacy? That's less than $1 a day for tube free automated insulin delivery. And a third of Omnipod five users pay $0 per month. You heard that right. Zero. That's less than your daily coffee for all of the benefits of tubeless, waterproof, automated insulin delivery. My daughter has been wearing an Omnipod every day since she was four years old. She's about to be 21. My family relies on Omnipod, and I think you'll love it. And you can try it for free right now by requesting your free starter kit today at my link, omnipod.com/juicebox. Omnipod has been an advertiser for a decade. But even if they weren't, I would tell you proudly, my daughter wears an omnipod. Omnipod.com/juicebox. Terms and conditions apply. Eligibility may vary. Why don't you get yourself that free starter kit? Full terms and conditions can be found at omnipod.com/juicebox.
Zach Maybe I can give you a sense of who you're talking to, Scott. So I'm not a very good golfer, but you should see how many golf clubs I have in my basement.
Scott Benner Think you're gonna own all these insulin pumps by 2027 maybe?
Zach That may be where the sense of—
Scott Benner Why is that? Why do you think? I've seen people collect insulin pump systems before too. They're always switching.
Zach Yeah. So I think we need to get to a stasis pretty quickly for our own sanity. There's one feature of Trio that's particularly compelling. I think maybe Loop has it as well, but it's a remote bolus feature. The reason why that's important is my daughter recently returned to a daycare that my wife has been at all day helping them learn—that does not have a nurse. Today's actually the first day she's not there. And so Trio will give us the ability to do remote bolus. Now on the one hand, the better solution might be the Omnipod five as a very simple interface. Right? Let's get the staff trained and trust them. You know, if we switch to Trio with remote bolus, the onus might be back on us to manage her diabetes all day. But then I hear Lauren talk about the 150 units, and I'm pretty sure which I prefer.
Scott Benner Oh, that's the one you're talking about. Oh, yeah. We just reran—
Zach Oh, was that a rerun?
Scott Benner Yeah. We reran school nurse mistake as the best of this week. It is really interesting, isn't it? Well, listen, man. I'm probably gonna sound opposite of what people are expecting me to say, but if you're a three year old who's only had diabetes for seventy two days, has a 6.9 A1C, I don't think I'd be in a huge hurry to change anything. I think that's pretty great.
Zach Yeah. Well, thank you. That makes me feel good. But too bad, Scott, because I'm—would you like to see my other putter?
Scott Benner I don't know. I really think it was the putter. It doesn't go in the hole. No, man. I think I'd ride it for a while just to see, like, what it is you can figure out. Because like you said, like, it's easy for, you know, people at day care to understand. What is your fear? Take the joking aside for a second. Like, what do you feel like isn't happening that needs to happen?
Financial Savings and Long-Term Care
Scott Benner As I told you earlier, Able Now is sponsoring this episode. Able Now, of course, tax advantaged Able accounts for eligible individuals with disabilities. If you or your child lives with diabetes, you may qualify for an ABLE account because of ongoing medical needs. Many people in the diabetes community do. With ABLE now, you can save for future expenses without affecting eligibility for certain disability benefits such as Medicaid. And thanks to updates to federal law, ABLE accounts are now available to more people than ever before. That means more individuals and families can use ABLE now to save and invest. Funds in an ABLE now account can be used for a wide range of everyday needs, including education, transportation, health care, assistive technology, and more. There's no enrollment fee, and you can open an Able Now account with a small initial contribution and build from there. Learn more and check your eligibility at ablenow.com. That's ablenow.com.
Zach Yeah. I mean, so you're speaking to someone who is in a current right now that will not stop moving of information and experiences managing diabetes. Right? So and I guess it's possible I'm not giving each iteration enough time to have its full effect. But I have heard things from clinicians who have said things like "my patients on Omnipod five are here, my patients on Tandem Mobi are here," and I don't even know what open source is. So there are some people suggesting better control, but I know—I guess when you say Arden's been on Omnipod for fourteen years, you don't mean Dash plus open source. You mean Omnipod five.
Scott Benner No. Arden uses Trio. And before that, Loop, and before that Omnipod five and Dash before that. She used to have the Arrows pod too. Arden's been using Omnipod since she was, like, four maybe. But what I'm saying to you is—and maybe I'm wrong—maybe you've jammed your brain so full of information that you're not at that point yet, but I would wonder if you even know why you're turning the knobs you're turning at this point. Like, maybe you just need more experience, time in the simulator.
Zach When we're high and we're actively giving corrections and somebody tells you, "you shouldn't have to do that, you need a more powerful algorithm that will do some of that for you." That's the kind of thing that makes me wanna switch. Right?
Scott Benner How many times are you correcting during the day?
Zach Oh, I don't know. I'd have to count, I guess. But, you know, we've had some pretty good days at day care, but there's a lot going on there. You know, she's a toddler. Right? We don't know how much she's gonna eat. So we do the partial pre-bolus, and then we do the rest when we see how much she ate. Right? Yeah. So what that means is you're gonna have timing issues with your insulin, and then you're gonna start chasing things here and there and giving gummies at the bottom and, you know, the roller coaster and just trying to tighten the roller coaster and find those rolling hills.
Scott Benner I'm wondering, like, how many times do you have to interact with it over and above the bolusing for the meals?
Zach Well, I don't know. There's two boluses per meal in theory except when she's like, "I want more berries. I want a banana." You're just giving more and more and more, you know, if you're behind the curve.
Scott Benner What's your expectation that—Trio is an example—what's your expectation that Trio would do that Omnipod five isn't doing?
Zach Well, if there's three moments a day where we're going from 200 to two fifty and giving three corrections as it creeps up and none of them seem to be powerful enough—even though, really, we're probably just not waiting long enough for the insulin to work—maybe with Trio, we give one correction, but because the basal's already more aggressively chasing it, we don't have to do as many of those. I guess that's the theory.
Honeymooning and the "Reptile Expert" Analogy
Scott Benner I know I've probably mentioned more than enough times that I have a couple of reptiles that I keep. And I talk to people who are experts. Like, I've made a couple of, like, close friends who have been doing this for a really long time and have decades and decades of experience, and they'll tell you the same thing. You can buy an automated misting system for your reptile's cage. So you can put it on a timer, and it'll squirt at a certain time for as long as you want and keep the humidity where you want it to. But most of those experts will tell you, when you first get the animal, just get a bottle and mist them by hand because it makes you get in front of the cage and look at it, and it makes you just experience it and have touch points, and you learn by standing there doing it yourself a little bit. And then, you know, you'll figure out where the impacts are coming from and where you need a little more water and a little less or etcetera and so on. And then you'd go ahead and buy that system if you want to that does it automatically because you'll know how to set it up right. And I feel like it's the seventy two days thing. If this was six months into this or a year into this, I'd be like, yeah, man. Follow your heart. I don't think you know enough yet to know what you don't know. You got good energy. Obviously, there's a lot of caffeine going on over there.
Zach I'm on prednisone, you know, because we've gotten, like, the flu four times this year, Scott.
Scott Benner Anything better than a steroid pack high as an older man? Your back probably isn't even stiff right now.
Zach That's exactly right. I was sitting in the car this morning and thinking to myself, is there some safe way to get this effect on a regular basis?
Scott Benner There's not. I'm afraid. You can't take the steroid pack for long or too many times in a certain year. I guess let's start over for a second. You leave that hospital with a little baby at New Year's. Terrible. You said you had a CGM pretty quickly. Obviously, they got you on Omnipod five pretty quickly. And she's at day care, or were you guys home with her for a while before she went back to day care?
Zach So we get out of the hospital on December 30, or they kick us out, I should say. We're scared to go home, but they kick us out three days later or so. And she gets back to supervised day care February, so just a couple weeks ago. And this is another fascinating thing, Scott. So her honeymooning behavior changed when her activity level went up and she went back to day care. So we're in Upstate New York. There's been a two foot snowpack since November. Right? So it's hard to get the kids active. And as soon as she goes back to day care—she goes from this aggressive honeymoon where with no insulin on board sometime after 2AM, she drops out of the sky, like, 200 points. And now that she's at daycare, she's more stable overnight. She's going low over and over again during the day. So that's been fascinating to kind of observe.
Scott Benner It's only been a couple weeks then. But you're experiencing lows every day? Around food or after food?
Zach It's in between the meals probably once the pre-bolusing and then the post-meal bolusing finally starts kicking in and she's running around with her classmates, and we get lows. Yeah. We think there is still a honeymoon existing. Her c-peptide was 0.3. So she didn't have much pancreas activity left, but, apparently, that's still enough to produce some insulin. And given that we know, you know, six hours after we've given her any insulin at night that she could drop 200 points, I think we're pretty sure the honeymoon is still active.
Lifestyle and Diet
Zach We're trying around the edges to control. One of the things that's been really interesting, Scott, is the idea of trying to learn how to bolus for anything versus—I started making my own chicken nuggets. Let's offer lower carb options. Let's have cottage cheese for breakfast. Let's put the strawberries in and not the pineapple and the blueberries because we're learning about glycemic index. There's an individual named David who's very active in some of the forums online—I think he's in Australia somewhere—and his kid's 99% in range. And he's super low carb. I don't think it's gonna be easy for us to get there right now. Because if our daughter doesn't have what her classmates are eating, she's gonna throw a fit.
Scott Benner You're so new to this. I wish I could explain to you how new you are because you've done a great job of, like, absorbing a lot in a short amount of time. Is that your nature?
Zach Yeah. I mean, I'm a management consultant. I used to work in the health care industry. Now I work in the water and sewer industry. I deal with a lot of technical information, so I guess it's in my nature. Researcher. Honestly, my first reaction to the question of what I've learned is just the humanity of the diabetes community. It just warms your heart. All these people kind of struggling together and thriving together. I can't tell you how many people I spoke to in those first few weeks just because you find a family friend who knows somebody who knows somebody who has type one, and they say, "please give me a call. I've been there." This whole idea that open source exists, Scott, is completely absurd. There are some people who would never trust it, right, because they don't trust technology at all. There's the MDI crowd.
Scott Benner I have a great interview somewhere of an older woman who just said she's like, "I don't know. The pumps, they scare me." And I asked her why, and she's like, "well, what if China hacks into my pump?"
Zach No. But I understand the perspective. I'm amazed by the open source community. By the way that this community has sort of grabbed ahold of this disease and is trying to wrangle it. I met somebody in a local shop who was a diabetic and told me that she calls her diabetes her dragon. You can never control it, but you try to manage it the best you can. But just this great community that's kind of grown up to help each other through it has been absolutely inspiring. Of all the positives you can take from diabetes, I'd give it away tomorrow. I'd do anything to get rid of it for my daughter tomorrow.
The Surge in Autoimmune Conditions
Scott Benner I don't think there should be any reason for you to rush to make a change. I think that you should probably absorb just more time in the simulator so you can make a better decision. If you expect Trio to just solve all of the problems you're having, I don't know that that's gonna happen.
Zach We're 75% in range over the last two weeks with a 46 standard deviation. We're only seven and a half units a day, basal and bolus combined. She's so small, probably thirty seven pounds. Her vocabulary has blossomed. I mean, getting insulin into every cell in her body, you can see neurological effects. It's just been amazing. Is there an episode you guys have done that's talked about these environmental factors that they suspect are driving up the rates of T1D in our youth in this country?
Scott Benner You think they're moving up?
Zach Yeah. Marty McCary, who's the head of the FDA right now, I heard in an interview say that one in six girls born today is diagnosed with an autoimmune condition, and they do not know why.
Scott Benner Yeah. There's a lot of autoimmune. To diabetes specifically, the one thing that has always kinda struck me in the last couple of years is how many people are diagnosed after an illness, but kinda more specifically a virus. So if the whole world got a virus in 2020, it makes sense to me that more people were diagnosed after that.
Zach That's fair. But in theory, those people would have gotten it anyway, Scott. My understanding is that the incidence has gone up significantly over more like a forty year time frame.
Scott Benner Let's ask the magic machine. I have Gemini Pro here. "The incidence and prevalence of autoimmune disease in the US has accelerated significantly over the past forty years, increasing at a much steeper rate than it did the forty years prior. Genetics play a role in autoimmunity, but human DNA does not mutate fast enough to account for such massive population-wide spikes in just a few decades. This points to modern environmental and lifestyle shifts as primary drivers. Researchers tested preserved blood samples and found that the prevalence of antinuclear antibodies jumped from eleven percent in '88 to sixteen point one percent in 2012. The prevalence of type one has nearly doubled in the past forty years, and celiac disease has increased fivefold."
Zach That's what I'm talking about. Nobody knows why, Scott.
Scott Benner Food's probably worse. Stuff we spray to keep weeds down. At some point in our history, everybody's growing food on their property. It works until there's a bazillion people and somebody says, "what if we put all that stuff in a pile and made food out of it that didn't rot right away?" Go buy a loaf of bread from a bakery and it's green in four days, but the other stuff isn't. You start microwaving plastic, all those processed oils—it can't be good.
Zach Did you guys go, like, all glass everything? Is that part of where your diabetes journey took you?
Scott Benner We don't use much plastic here. We don't use Teflon pans. There's coconut oil and olive oil. But I don't know, man. Like, maybe there's radon in my basement. What am I gonna do? We all gotta live here. There's no other place to go.
Zach I know you're doing something right, Scott. And I just hope for the same success for my daughter that your daughters have. Seventy two days in, here we go.
Scott Benner Let's call the episode "Seventy Two Days Later." I've been messing with a little reference library at juiceboxpodcast.com/jbpaiex for 32 different autoimmune conditions. You can check off symptoms like depression, back pain, fatigue, and it shows you overlaps. It's not a diagnostic tool, just educational. This is part one. Make sure you find part two in your feed right now.
Scott Benner I can't thank you enough for listening. Please make sure you're subscribed. I'll be back tomorrow. Check out the private Facebook group—beautiful group, wonderful people. Juice Box podcast, type one diabetes on Facebook. If you want your podcast to sound fantastic, Wrongwayrecording.com.
#1829 Relationships that Heal: Affection, Connection, and T1D Safety Nets
Scott Benner and Erika Forsyth explore the landmark ACE study , introducing how positive childhood experiences (PCEs) build resilience and counteract early stress for families.
Companies that Support Juicebox
Key Takeaways
- Having affectionate, steady caregivers who respond calmly during highs, lows, and nighttime checks helps children feel safe rather than like a burden—check your facial expressions and vocal reactions around blood sugar numbers.
- Instead of saying "I get it" when your child with diabetes is frustrated, acknowledge that while you understand the caregiving burden, you don't experience what they physically go through—this validates rather than dismisses their feelings.
- Find at least one adult outside your home (teacher, coach, neighbor, or mentor) who genuinely understands your child's diabetes and can be a quiet safety net—this reduces isolation and shame.
- Helping your child stay part of groups (sports teams, activities, support groups) after diagnosis reduces the "why me?" mentality and normalizes their experience even while managing blood sugars.
- The best thing caregivers can do for their children is manage their own trauma around the diagnosis—unresolved parental stress transmits directly to children and affects their nervous system regulation.
Resources Mentioned
- Medtronic Diabetes - MiniMed 780G system with Instinct sensor
- Contour Next Gen - Blood glucose meter
- "Childhood Disrupted" by Donna Jackson Nakazawa - Book on how trauma becomes biology and how to heal
- PACEs Connection Science Initiative - Research on protective and compensatory experiences
- Juice Box Podcast Private Facebook Group - Community support for diabetes families
Introduction to the PACEs Series
ScottHello, friends, and welcome back to another episode of the Juice Box podcast. Hello, friends. Welcome back to the second episode of the Paces series with myself and Erica Forsyth. Living with type one diabetes means dealing with stress, uncertainty, and a lot of daily decisions, But research tells us something encouraging. Supportive relationships can actually buffer stress and help the brain handle challenges more commonly.
ScottIn this episode, we're looking at the first category of PACEs, protective and compensatory experiences. We'll talk about the people who make a difference, caregivers, friends, teachers, and communities, and how those connections can build resilience, confidence, and emotional safety for people living with diabetes. If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome.
ScottType one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan. Today's podcast episode is sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott.
ScottWould you like to unleash the full potential of the MiniMed seven eighty g system? You can do that at my link, medtronicdiabetes.com/juicebox. Today's episode is also sponsored by the Kontoor Next Gen blood glucose meter. This is the meter that my daughter has on her person right now. It is incredibly accurate and waiting for you at contournext.com/juicebox.
Understanding Protective and Compensatory Experiences
ScottErica, it is part two of our pace series, episode two. I don't know how we'll end up, like, breaking these down. And I see here by your header, proactive and compensatory experiences. Is that where we're starting today?
ErikaYes. Well, we're gonna start yes. So in our first episode on the PACE series, we've kind of reviewed the ACE study. We then talked about so those are the adverse childhood experiences we talked about. As a result of that landmark study, there were positive childhood experiences that were analyzed because we wanted to discover what makes these children who've had exposure to the ACEs land well and show resilience.
ErikaSo we talked about what the the positive childhood experiences are, and then we talked about and sometimes people call it now that your PACE score, your positive and adverse childhood experience. And so then what we're gonna be talking about, though, are the the PACE, the protective and compensatory experiences that can be applied even after you've been exposed to trauma as a child. And that was research that was and and the paper that was written by Amanda Sheffield Morris and Jennifer Hayes Grudeau that was published in January 2023. So we're gonna be kind of focusing on those protective and compensatory experiences.
ScottI I think that's exciting. I probably mentioned it before, but, you know, if the idea is, you know, you've had a certain number of these things from this aces list by the way, if you haven't heard part one, don't even listen to this. You gotta go listen to part one first or it's not gonna make a ton of sense to you. Once you've understood those that list, that ACEs list and how it can impact people, the next question I had was, you know, is there a list of things that happens to people that maybe points to a better outcome for them as as an adult? And then through that learning that not only is that possible, but you maybe could take some of these things and go back and reapply them to people who have had adverse experiences in their life and and change it for them.
ScottI I found that to be, like, the kinda most exciting part of what we talked about last time. So I am, I'm good to go to dig into this. So wherever you wanna start, please do.
ErikaOkay. Great. I I wanted to add as we were kind of thinking about this series and I was researching, I came across an additional resource that I thought would be helpful to share. I have not read this book personally, but the author is Donna Jackson Nakazawa. Nakazawa. Hope I'm pronouncing that correctly. And she wrote a book called childhood disrupted, how your biography becomes your biology and how you can heal. And, basically, the the summary she describes the summary of this book that no matter how old you are or how old your child may be, there are scientifically supported and relatively simple steps that you can take to reboot the brain, create new pathways that promote healing, and come back to who it is you were meant to be. So I just wanted to share that as a resource as we talk about these experiences, that you can dig dig deeper.
ErikaThere's lots of great resources from her website and also the PACE PACE's connection science initiative. So with that, we're gonna we talked about there's two different parts with these protective and compensatory experiences. The first one that we're gonna be talking about today, the first category are is relationships that heal, and the second one is resources that build skills and resilience, which we're gonna talk about in the next episode.
Why Supportive Relationships Matter in Diabetes
ErikaSo why is it important that we we're we're gonna kind of talk about this through the the lens of living with diabetes, these, different categories. But, yeah, obviously, it's important. Living with diabetes, you're it's full. We know of so many stressful moments. And so having these supportive relationships that we're gonna discuss can buffer those stressors.
ErikaThey can heal some of those stressors and teach the brain you're you're not alone. That this is this is hard, but you're safe. Right? We're always wanting to come back to what is the child and you as an adult experiencing a safety in your body. And so these relationships and these connections can change how the brain handles stress.
ErikaSo that is the important part that even if you're listening to these things and as an adult and you did not have these experiences, they you can work on them, apply them, and it can actually rewire the brain and heal. One other note before we go on to talking, if you're listening to these five different points that we're gonna talk about that that nobody is pair is perfect. No parent is perfect. And I just invite you to hold grace for yourself if you're listening to these things and you think, gosh. I don't do that, or I do that really well, or gosh.
ErikaI don't I can't do any of these things. This is not prescriptive. This is hopefully helpful and supportive, but we're not this is not supposed to lead to shame.
ScottRight. No. Absolutely. No. Please. Please don't let that be the takeaway. Right.
Point 1: Affectionate, Steady Caregivers
ErikaSo the first one is number one, having affectionate, steady caregivers. In your life as a child. I thought it might be helpful to talk about, yeah, what does that look like with living with type one or or diabetes in general. So having a parent who does nighttime checks without shame or anger. So you might you might feel that irritation of having to the alarm goes off, but kind of checking yourself, taking a breath before he needed to go into the room. Even though the child is asleep, people with diabetes are very attuned to all sorts of thoughts, responses, facial expressions and being really aware that they don't want their diabetes to be an irritation for other people.
ScottYeah. They don't wanna feel like they're the reason you're upset, sad, whatever. So it's up to you to not I think not just reflect that onto them, but to not feel that way. Like, you have to figure out a way to go in and do that blood sugar check gracefully, you know, in a way that makes people feel like, this is nowhere else this guy would rather be right now but helping me. And that can be tricky. I'm sorry. Go to the next one.
ErikaBe tricky. Yes. When your child's presenting as an affectionate steady caregiver, when your child is high or low? I know I am not I my children do not have type one, so I do not know what it's like to be a caregiver to someone with type one. But I do hear stories from the children and teens that I work with.
ErikaAnd when they are experiencing a higher low, if they're sitting across from their caregiver who is panicking, who is annoyed, who is scared. I hear all of those things, and I understand why you might be feeling those things as a caregiver. It can then it's triggering the child's nervous system that this high or low is really bad or I'm bad or this is really scary. And some of those things, it is scary to be high or low sometimes. So I'm not trying to dismiss that. But just being mindful of how you're showing up when your child is high or low and how that might be interpreted within your 10 year old or your 16 year old.
ScottMy wife stopped me years ago now, and I don't think it's a thing that I adjusted immediately. But she's like, every time you see a number that you don't like, she's like, you kinda mutter under your breath. Like, or you'll you'll go like, oh, something like that. And she's like that like, Arden hears that. She's like, I hear it. It makes me nervous. And I was like, okay. And it's funny because I never I wasn't angry. I didn't mean anything by it. I think it was just like a like a throwaway reaction that I was having that had an impact on other people I didn't realize. So I I appreciate somebody having pointed it out to me. I wish it was something I would have been able to adjust more quickly than I did, but it is something that I I got handled eventually. Still, I I I guarantee it had adverse effects on on art and the people around me. But yeah. And unknowingly too. Sorry.
ErikaYes. No. That's good. It's a good example. Yeah. So having being being a parent or caregiver who comforts your child during site changes or, you know, pump failures or hospitalizations. Donna points out in the research the author I referenced earlier, the significance of eye contact that we talked a little bit about in the first episode and and a twenty second hug. So we're talking not only about kind of physical emotional affection, but also physical affection and what that does to the nervous system.
ErikaI hear so many fabulous and wonderful examples of support for your child during some of these traumatic things. One thing I also wanted to highlight is a common maybe frustration that I hear from the the children and teens I work with is when a parent might say, like, I get it. So the the child is maybe feeling frustrated about a a pump change or having to treat a low or having to wait to eat because they're high, and the parent might say, I get it. Now I understand. I'm guessing as the caregiver, you're trying to connect with your child.
ErikaYou're trying to make them feel less alone in that moment. I understand you're not saying I get it because I have type one. Right? Unless maybe you do. And then that's the separate situation. But what the child is hearing in that moment is not connect. They aren't feeling connected. They're feeling like, no. You you don't get it. You don't have type one. I know you're getting it that you're getting the burden, the burnout of of of dealing with the chronic illness, of dealing with the diabetes. But what the child might be feeling in that moment is, well, you don't get it. You're not having to be aware of, you know, when you're going to the bathroom and pulling your pants down and not wanting to rip off your pump site. You don't get, like, having the beeps go off and all your friends looking at you.
ErikaSo just being mindful of when you are wanting to connect and show that affection and that connection with your child, maybe saying, you know, this is really hard. Or you're wanting to show up for them. You're wanting to calm their nervous system, but be mindful of that word, that phrase, like, I get it. Because you get it as a caregiver, but not as someone living with it.
ScottIt's more than just a difference in wording. There really is the the truth is, no, you don't. You're empathetic and you you know, to me, it runs right along with, I would take this from you if I could. Like, please don't say that. Like, because you can't. So it's pretty falls pretty hollow when when you say something like that to somebody. But I I even think the thing I try to do, I don't think is perfect. Because now that Arden's older, I'll say, you know, I'm, I look. I'm doing my best to understand what's happening to you. I completely understand that I don't know how you feel, but I, you know, I see this as hard. Even that, I think, is, like, I think that's better, but I don't think that fixes the problem.
Managing Your Own Trauma as a Caregiver
ErikaBut you can also go back and repair to say, Tommy, you know what? Those times I've said I get it because I'm trying to support you and I'm trying to, like, connect with you. I realized I I don't get it the way you get it. And I'm so sorry.
ScottAnd you can almost let it go for them if you if you come back with that apology. It occurred to me while you were speaking a minute ago that there are probably people out there that are like, oh, there's burnout. It either happens to you or you don't. But I think that's because of the word maybe. Like, they they think of burnout as like a flame out, like a complete, like, collapse. I believe that every person living with a chronic illness is going to experience some version or level or degree of burnout constantly. And I don't think there's a way around it. I don't think you're gonna get rid of it. I just think it's a fact of the situation. And you you can't possibly you're not just either living fancy free with this or you're collapsed on the side and need therapy. Like, it's not it's not a one or the other situation, but I do think it gets treated like that sometimes. I just think that there's, a spectrum of what that looks like from very low level to I can't even begin to take care of myself anymore and everywhere in between, and I don't think that there's anybody not living in that spectrum that I've met so far.
ErikaYeah. That's a good point. Yes. And and on that spectrum, if you because you are I guess we're speaking mainly to caregivers right now. You know, if you have had your own medical trauma from seeing your child just either live with diabetes, have a seizure, be in the hospital, a diagnosis, or DKA, it's important to do your own work to process the trauma because so often, again, unintentionally, it might spill over that you are experiencing a traumatic response every time your child has a sight change or every time your child gets sick and you're running through this, oh, no.
ErikaLast time you got sick, well, you had to go to the hospital because he got into DKA. And so that is running through your body and and understandably so, but you don't want us that it it can become indirectly placed on your child's diabetes and then directly internalized by your child that that they are a problem or that they're scary and what they have is scary.
ScottAnd and I don't think we could say enough times that it's this is not anybody pointing to you and saying, like, look, you're doing a wrong thing. But you also need to I do think you need to see the connection between you know, the reason that aces list is interesting to me is because if you experienced these things growing up, like, somebody's physically harmful to a spouse or your mother to your father, your father to your mother in your household. Right? And then you see that growing up, it has detrimental effects on you. And it's easy to say, well, yeah. Well, the mom just shouldn't have punched the dad or the dad shouldn't have yelled at the mom, whatever it was. Right? But if you go back a generation, you'll see why that happened to them. Right? Like, somebody did something in front of them that caused that. And while that's true and completely excusable, I think, because you are now wired that way and not necessarily how you want to be, I understand both arguments that you should be an adult and overcome that and not do that. I also understand the argument that says that, like, maybe it is beyond your control. You don't have the tools or the knowledge to stop it.
ScottNone of that makes it untrue though. So, like, if that's the case and you flip this over into diabetes and what you just said is, like, you've got your own medical trauma. You've watched your kid go through this thing. You're having your own reaction. That's all true. You're welcome to that, but you cannot ignore what the outcome of that's going to be when you do that then in front of your kid later. They are going to carry some baggage forward with them because of your experience and how that experience came out in front of them. Does that all sound right?
ErikaYes. And your this quote that I found from Donna again, I have no personal connection to her. I've not read her material, but it's connected to a lot of this ACE and PACE work. She says the best thing we can do for the children we care for is to manage our own stuff. Adults who've resolved their own trauma help kids feel safe. So that's, yeah, kind of just from from the research, and it's hard. It's like, when do you have the time to do that? You're just trying to keep yourself and your child alive. I I totally hear that. And, hopefully, through some of these conversations things get a little better. Some tools.
ScottThat's all yeah. That's all you're looking for. I mean, not no. I don't think I don't think any of us are getting to perfect, but we certainly could be moving in the right direction. And running off and living in a cave is not the answer either. You can't just remove yourself from the situation thinking they'd be better off without me or, by the way, not leaving the house, but removing yourself emotionally thinking as if I'm not interacting with them, at least they won't get my crap. They're just gonna get different crap from that. Ain't no winning. There's only levels of not losing. Okay?
Point 2: Having a Best Friend
ErikaOkay. Here we go. So well, let's move on. Yep. The number two, and there's five of them, is having a best friend. And so what does that look like for two with living with diabetes? So a friend maybe having a friend who knows and could even actually verbalize and advocate for your your child with diabetes. Like, oh, she she needs like, if she's eating in class, let's say you're low, and you need to treat your low. Your best friend sitting next to you is kind of like your protector. Like, oh, she needs to eat sometimes. Or you know, he he has a pump. It's okay. Or when the sub says, who's, you know, who's beeping back there? No phones allowed. The best friend can say, it's a medical device. You know? I'm, like, shouting, you know to to the teacher. She needs it. And not that you want it you need to be reliant upon that best friend all the time, but it just it does kind of share some of that burden of advocacy.
ScottI don't wanna go too far down the rabbit hole, but, also, if you're that friend, get ready to be a nurse later in life, you know, because, like, this experience is gonna put you into a caregiver role in your and you're not even gonna realize it. The spider web that is personal interaction is fascinating. Like, right, because the the minute you become that person's best friend, it changes probably the direction your life goes. You don't even realize. But very valuable community in general. And a community I just got done saying this to somebody. A community can be two people. It really can be. So you need a little bit there. It doesn't have to be a thousand people for it to be a community.
ErikaNo. It's good. And and having this best friend and this can be, you know, if you're adult living with diabetes who who doesn't act annoyed or scared or surprised, who someone who maybe you don't feel like you have to apologize in front of. You know, we in the body grease series, we talked a lot about how we live in a in a stage of apology often. I'm sorry. I gotta change. Like, are you okay if I do this thing right here right now? So someone who really gets it in that way. And then having a buddy, like, maybe as a caregiver, you trust not only the family, but the friend who can be another person of lookout for sleepovers or after school activities, field trips, and such. And what this does for the the person living with diabetes is you you feel less alone.
ErikaEven though they don't have it, your best friend does not have type one, that maybe they do. That would be kinda cool. But even if they don't, knowing that someone truly gets as much as if they can and is your peer reduces that isolation and kind of normalizes the experience, and you're not the one always having to advocate or explain.
Point 3: Adults Who Stand By Your Child
ErikaAnd the third one, adults other than caregivers who stand by the child during hard times. So this one might take some education, right, from you as the caregiver, from a team, a medical team. So this is gonna take a little bit extra work. But what does it look like to have an adult who stands by your the child with diabetes during hard times, having a teacher who really gets the highs and lows and is super aware of their nonverbals. And this applies to also nurses and coaches. If you have either a sugar pixel or something in the room or maybe they can hear the alarms, maybe they're following. You know, there's everyone has different setups. But for at school, having a nurse and a teacher and or a coach or PE teacher who really gets it and isn't doesn't show in a sense of annoyance, but real empathy and compassion. And, again, that if you don't if that if those things feel impossible, there are other ways. But I know just thinking about, you know, where your child spends most of the days at school. And so having one or it doesn't have to be all of them. And it doesn't have to be it could be just like the the library instructor. It could be one other adult in your child's life who really gets it.
ScottSo instead of, like, a health advocate, almost like a like a happiness advocate or a totem in your life that you walk past once in a while and you just look up and you go, there's there's missus Smith in the library. If I if something happened to me, she would know what to do. Like, that kind of feeling. To feel like there are people in your life and in your orbit who understand and would have your back if necessary, but aren't necessarily running around constantly yelling like, hey. Save forests. It's not like that all the time. Right? It's just knowing that they're there quietly in the background. So as a parent, you have to try to set those people up in your kids' lives, or do you wait to see if they spring up organically, you think?
ErikaOh, that's a good question.
ScottBecause sometimes they do. Sometimes they spring up organically, and there they are, and then you have them. But for some people, like, how do you go initiate that conversation with somebody without it feeling stilted or weird moving forward?
ErikaSometimes those people might kind of present themselves as you're having conversations. They might say something like, oh, my my niece has type one, or, they might have a personal relationship to a chronic illness may or may not be type one. That's usually kind of a first indicator that they understand that things happen out of their out of their students' control. Yeah. Also, maybe, like, their rigidness around their instruction, around their teaching style. And and just kind of can I just kind of having that warmth, right, that they might get it? But I think you made a good point that it's not someone sometimes this can drive some of the people that I work with, like, the PE coach is like, hey. Like, screaming across the yard. You know? Timmy, you're low. Like, go to the nurse now. That's the opposite of what you were looking for.
ScottI've just I've heard too many stories from people that are like, oh, I thought their coach understood. I thought this one understood until something happened, and then you realize they're kinda nerd nicks and they didn't really get it or they didn't understand it as well as you thought they did or whatever. And then they become, like, the anti hero in the story. Like, the person you thought was gonna save the day ends up becoming, you know, the the reason for your your bigger problem. And so, I hope that these people pop up organically, but if they don't, I'd be very thoughtful about how you choose the people you approach to be this. Just because they are a thing in your life doesn't mean they're gonna be good at this job, I guess, or want it even or do, you know, or do well with it for you. It's a slippery slope. It's not an easy thing to figure out, you know, from my experiences and from my conversations.
ErikaThat that is it is because you you would hope that your child's teacher or you would hope that the school nurse would be this person. And that they might not they might be some years. They might not be every year. And that also, you know, the way you're responding as you're trying to find adults who stand by your child during hard times. It also I know we're talking about it very specifically and narrowly with diabetes, but it could be the other parts of their life. You know, maybe they're really supportive if your child has, you know, learning differences, and they are really attentive and attuned to that.
ScottI bring it up because I find that one of the places people push back with, like, mental health support in general or, honestly, a lot of times where you end up with a checklist of things to do for something is that they're nice to say, but, like, yeah. Yeah. Sure. I should go get my librarian or my kid's soccer coach to be nicer to him, but I you haven't met these people. They're idiots. Or I you know, like, who knows? He's not the one I can go to for this. Right? And so it's I I get scared that people hear that and then they go they take the next step and they go, that's not really viable for us. That won't work. And then they I don't want them to give up on it. I do think there's somebody out there who would be a great best friend who understands your diabetes or, you know, a mentor within the community who is the right person to be this. I just don't think it's as easy all the time as it could be. And there are some people that live in in cultures and and communities where they don't trust a soul outside of their their life. That can be tough too. You know, as much as I believe that your human connections are probably maybe a little more valuable face to face. There are plenty of times where you have to rely on the Internet to to bring together this group of people that you're desirous to find but cannot find in their in your own life. There's don't think there's anything wrong with that either.
ErikaYes. So that that is those are all very valid points because you could be listening to this and hearing, like, well, I've tried everyone at school, and no one is can fulfill this role. Yeah. And that is obviously very frustrating. It could be a neighbor in your community. We're gonna talk about more resources in the next episode. It could be someone within your your faith community, but just a mentor. There are, you know, diabetes mentor groups out there. Just somebody else besides the primary caregivers is really the point.
ScottYeah. No. Of course. It's because you don't want your you you don't wanna be walking out to the mound to tell your own kid that they're not throwing strikes. Like, sometimes that's just not the best way to get the point across. I just wanted to you know, as we're making space for things, I just there's plenty of people who are more worried about not getting shot walking home than finding a neighbor that could be valuable for them about their diabetes and, you know, and and everywhere in between on that too. So just because it's difficult doesn't mean it's not important, I guess, was my point. Like, don't just skip it if it's not easy to just point and go, that person could be helpful to me. That's all. Anyway, good luck.
ErikaNo. I I those are great points to, yeah, to spread the idea that it's it's not just school based. It's not just community based. It might be really hard to find somebody like this. Yeah. And that is valid. I think the in the line of, you know, the adults who stand by your child, I know this probably doesn't need to be said, but I'm gonna kinda say it around the the medical professionals, you know, being in a space where the doctor, the nurse, the nurse practitioner, whoever you're seeing isn't just focused on the numbers, but is attuned to your child's or to yourself if you're the adult listening to yourself as a person. My I've had a range of endos from grading my a one c's as a child to my current endo who the I probably have said this before, and this is a new and a fabulous experience. He's like, how are you feeling? How are you doing?
ErikaBefore he pulls up the graphs, before he pulls up the data. And and it's only probably a two, three, maybe five minute conversation, but that is such a a gift, right, that he's seeing me as a person and not just my diabetes and my numbers. And there are people out there who are who treat that way. So I just wanted to kind of point that out as well.
ScottLook. Listen. And there's a lot of value in hearing that from you specifically because you've had diabetes for, like, you know, wait, what, more than say more than thirty five years. So you know the value of being treated that way and and and the difference when you're not. Also, I, I'll give you a compliment right here. Somebody reached out to me recently and said, I like that Erica is sharing more of her real life in the episodes. So I I I actually got some feedback about that I wanted to tell you. So they said they feel like over over the episodes and the years that you seem like you feel more comfortable talking about yourself and your diabetes.
ErikaThat is a very an observant listener. Yes. Awesome. Well, I'm often yeah. It's it's an interesting experience as a as a therapist that you don't typically disclose much.
ScottYeah. There's a little bit of a blur here for you. Yeah. Erica's like, I got this I got this thing too. Yeah. I'm sorry. We gotta get back to your list.
ErikaSo let's keep moving. So, really, what does this do? Why is it why are we spending time about having, you know, having an adult who is supportive for your child or for yourself? It reminds them that there that there's safety outside even though that might, for yourself and your community, it might not feel safe outside your home. And I think it's important to validate that. But where you can and if you can reminding your child that there are people out there outside of your home who can be safe, and then that also kind of mitigates and protects against any kind of shame narrative or feeling like you're the burden living with with diabetes.
ScottYeah. All with the goal of giving you positive experiences around your diabetes that will help you be a a more fully formed happy adult one day.
Point 4: Being Part of a Group
ErikaYes. Yeah. Okay. Number four, being part of a group, which you just kind of alluded to that a community or a group can be, you know, yourself plus two. And some of these are are fairly obvious that we talk about, you know, participating in support groups, particularly for teens. Those are highly popular, participating, attending diabetes camps. And then separately, even if so the where yes. It's diabetes focused, those things, but being on a team, being in a choir or a dance group where diabetes management is integrated into their rhythm and their life, I know that can feel really scary for people. And and often, I do hear and and understandably so, after diagnosis, there's a pause from integrating some of those things into your child's life because you're trying to learn how to manage. But I do encourage if your child is is, you know, hungry for that to to reintegrate them back into those things where they feel like they're a part of a group, where they belong, where it's not just about their diabetes is so important.
ScottSome of the more interesting stories that I've people have shared with me, a lot of times people are diagnosed right before a planned trip or something, adults and kids, and they still do it. And then every one of them in hindsight is like, thank god I did that anyway. Because somebody tried to tell me, oh, maybe you shouldn't travel right after this or so an adult that told me recently about how they were they were literally trying to get insulin on the way to the airport because that's how close their their diagnosis was to, like, a, like, a long plane flight that they had. And if they look back and they're like, I'm so glad I did this. I did ask. If that was happening to your kid, would you want them to go? And she said, oh, no. I wouldn't. It was great because she validated that going anyway was super important. And she was going far, if I'm not mistaken, like, another country. And I said, what did you like, what did you think would happen if you, like, would you have gotten on the plane if you couldn't have got insulin? And she's like, probably, because I know I would have landed and people could have helped me still. Like, she was very, I could get it done when I get there. Great message. Great energy. I said, would you let your kid do the same thing? She goes, no. I don't think so.
ErikaI hear I hear similar stories. Yes. Going off to college, going abroad, going on trips. It's a tough decision trying to decide to be carry on even though we know it'll be more stressful. But then I wonder how significant making the choice to go becomes integrated into your narrative of, like, we can continue on with life.
ScottI go blinders because I realized a long time ago that if I put my fear on those kids, it's gonna be worse for them than whatever's gonna happen to them if they do something, it doesn't go well. Right? So but there are still times where, like, the pull inside of you is just, like, don't let them do that. That's a bad idea. Don't like, just say no to that. You know what I mean? I just, like, I shut my eyes, and I go, I know it'll be better for them to do it on their own than to not have it happen, and I'll just stop looking. And that way, maybe I won't feel like or at least maybe I won't open my mouth at the wrong time. You know? And that goes for, like, health stuff, dating, like, all that stuff. There's times you wanna be like, are you sure about that one? But you think, no. It's better to have the experience than for me to be the reason that you make a decision. Like, you need to make that decision. I can't make it for you. My experience is not just because you've lived through something and you know the right answer doesn't mean that giving them that answer is gonna get the outcome that you want. You're skipping them over an entire like, letting them have a lived experience in there that will be much more valuable to them than whatever the thing is you think you're gonna save them from, unless it's not. Like, you know, I mean, if the guy's got that serial killer stare, maybe grab your daughter and pull her back in the house. But, like, anyway you know what I mean? But moreover, it's just better for them to go find out he's a jerk and come back, you know, or or whatever this the thing, I think. Unless it all goes wrong. And then, of course, you'll second guess yourself for the rest of your life. So congrats. But I think, generally speaking, that's the way to go.
ErikaSo so being part of a group, obviously, it sometimes can cost money and time, and that is maybe not a luxury that that we all have all of the time. I used to see people on the the Juice Box Facebook group post like, hey. I live in this ZIP code. Anyone wanna meet up at such and such park on this date?
ScottYeah. I see people do that.
ErikaYeah. Yeah. I thought I just think that's really cool because it's it's very loose. It doesn't cost any money, I don't think, to show up at the park. And I just think that's a be a beautiful way to to feel connected without hopefully spending any money. A lot of these things do cost money. So the why why is this important? I think particularly getting your child back into, you know, whether it be school or sports or activities, it can reduce that feeling of why me? Even if their blood sugars are all over the board, and I know that that is super scary, I'm thinking about, like, their mental health component of, why can't I I used to love playing baseball. Why can't I do that anymore? That is such an important aspect to reduce that sense of loneliness and isolation or that why me? Why and then and then why can't I do this? Oh, it's because of my diabetes. So the belonging and identity and support is really important.
Point 5: Stable Employment for Caregivers
ErikaOkay. Should we do the last one? Number five.
ScottYeah.
ErikaHaving one caregiver at least one caregiver with stable employment. Now that one, I know, is is hard. Right? Like, some of some of us might think, well, it must be nice to have stable employment for one of us for between my partner and I, or maybe you are living you are a single caregiver to your children or child. And so I I hear that, and I wanna acknowledge that. I think it's also important to note, you know, what would be the benefit of that, not only financially, but emotionally.
ErikaSo having you know? And particularly if this employment has insurance. Now having predictable access to your insurance, we know it can be obviously very helpful with diabetes. But even if you have stable employment, so often that your employer might change insurance plans, and that is so frustrating and irritating and having to find new doctors and getting new prior auths and all of that. But with with having access to insurance with stable employment, you obviously have that kind of known rely you know, like, you can rely upon having access to your devices, your insulin. And in general, for you as the parent, this is all obvious. You know, reduces your own stress and financial stress, and your children can live in that and pick up on that if you are more stressed financially. But, basically, the the stability reduces that kind of background stress. When are we gonna get the devices? When are we gonna get insurance? And your child will feel more secure and safe. But, again, these are these are obvious, and this is hard to do perhaps all of the time to have one caregiver with stable employment, but this is what the research has shown.
ScottYeah. I just looked while you were talking, and it says that children living in families without secure parental employment in The US, about 18,400,000 children or around 25 to 31% lived in families in 2023 where no resident parent worked full time and year round. That means no parent worked thirty five plus hours per week for most of the year. That's a bigger number than I imagined it. Wow. Yeah. Yeah. That's it's a lot of people. Anyway, that was a bummer. But I yeah. Yeah. But I I appreciate you you saying it doesn't stop again, this doesn't stop the truth from being if one of the parents is gainfully employed and the kids can what? Expect that their pumps and CGMs and supplies will be available to them when they need, if there's not financial stress around their lives. Kids pick up on that. Like, if you can reduce those things, you have a better out you have a better chance. By the way, you could also do all these things right, and your kid could still be a show one day. I like the none of this or vice versa. By the way, that was the thing that really freaked me out. The first episode, you could have a ton of those aces on that list and not have adverse events from it in your adult life either, which is also good news. But yeah. I mean, I don't know if I cut you off, like, if you got to go over everything you wanted to in part five or not. But just because it's sad or unfair or whatever doesn't mean it's not true, I guess, is the is the point.
Summary: Relationships That Regulate
ErikaYeah. Yeah. So these these five things, you know, having affectionate steady caregivers, having a best friend, adults who stand by your child during hard times, being part of a a group, and having one caregiver with stable employment. These all are, you know, relationships that are significant that ultimately help regulate your your child's and and also your own, you know, nervous system.
ErikaAgain, under the umbrella of protective and compensatory experiences, these are things that will help buffer, mitigate, heal the experience of being exposed to to trauma or stress, in this case, diabetes, but obviously can be applied to other stressors that the ACE list recognizes and and ultimately helping your child feel safe and and that their nervous system is regulated even when they're exposed to hard things living with with diabetes.
ScottRight. Because if their nervous system has responses to these outside influences when they grow up and become an adult and those stressors happen, you're they're more likely or or they're likely at least to have those kinds of reactions that then create this problem moving forward for their children and generations to come if somebody doesn't break the circle at some point. Yes. Yeah. Yeah. Such a simple and yet complex idea at the same time. Right? And and I have to understand the physiology of it to even believe that it is true. Because I think there's most people there's plenty of people would say, like, look. Just be an adult. Don't do that. But I it just doesn't seem to me that that's the way things work. So I appreciate you doing this with me very much.
ErikaYeah. Yes. You're welcome.
Sponsor Messages and Closing
ScottI'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes 20 four seven. It works around the clock so you can focus on what matters. The Juice Box community knows the importance of using technology to simplify managing diabetes. To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox. Having an easy to use and accurate blood glucose meter is just one click away. Contournext.com/juicebox. That's right. Today's episode is sponsored by the Kontoor Next Gen blood glucose meter.
ScottOkay. Well, here we are at the end of the episode. You're still with me? Thank you. I really do appreciate that. What else could you do for me? Why don't you tell a friend about the show or leave a five star review? Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me or Instagram, TikTok. Oh, gosh. Here's one. Make sure you're following the podcast in the private Facebook group as well as the public Facebook page. You don't wanna miss please, do you not know about the private group?
ScottYou have to join the private group. As of this recording, it has 74,000 members. They're active talking about diabetes. Whatever you need to know, there's a conversation happening in there right now. And I'm there all the time. Tag me. I'll say hi. My diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control. I'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips.
ScottThe diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, or you can listen to it at juiceboxpodcast.com by going up into the menu. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen. Truth be told, I'm, like, 20% smarter when Rob edits me. He takes out all the, like, gaps of time and when I go, and stuff like that. And it just I don't know, man. Like, listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired Rob at wrongwayrecording.com.
#1827 From ACEs to PACEs: The Science of Rewiring the Developing Brain
A four part series on the powerful impact of early stress on brain development and long-term life outcomes. Hear science-based strategies for leveraging positive, protective, and compensatory experiences (PACEs) to foster healing and build enduring resilience within the diabetes community.
Companies that Support Juicebox
Key Takeaways
- Brain Development and Stress: Early toxic stress can alter neurological systems, making the amygdala (brain alarm system) oversensitive and weakening the prefrontal cortex, which manages regulation and focus[cite: 2412, 2442, 2444].
- ACE Study Results: High Adverse Childhood Experience (ACE) scores are statistically linked to higher risks of chronic diseases like heart disease, cancer, and depression, as well as reduced life expectancy[cite: 2462, 2463].
- The Power of Resilience: A high ACE score is not a destiny; researchers found that many individuals with traumatic backgrounds thrive as adults thanks to positive experiences that "buffer" stress and rewire brain circuitry[cite: 2398, 2399, 2561].
- Predictable Connections: Simple, consistent actions like being present when a child returns from school, maintaining focused eye contact, or offering physical touch build lasting trust and security[cite: 2501, 2505, 2530, 2531].
- Diabetes and Adversity: Families living with type 1 diabetes can intentionally build "PACEs" (Protective and Compensatory Experiences)—such as safe neighborhoods and stable routines—to offset the emotional and physical burden of a chronic condition[cite: 2371, 2621, 2693].
Resources Mentioned
- US Med: usmed.com/juicebox or call (888) 721-1514 [cite: 2379, 2483]
- Tandem Mobi & Control IQ: tandemdiabetes.com/juicebox [cite: 2383, 2474]
- Cozy Earth: cozyearth.com (Offer code: juice box) [cite: 2465]
- Juicebox Podcast Facebook Group: facebook.com/groups/juiceboxpodcast [cite: 2372, 2375]
- Wrong Way Recording: wrongwayrecording.com [cite: 2726]
Introduction to the PACES Series
Scott Benner Hello, friends, and welcome back to another episode of the Juice Box podcast. Friends, welcome to the first episode of my Paces series with Erica Forsyth. This series is about something very powerful, the experiences that shape our brains and our lives. Research from the Landmark ACE study showed that early stress can affect how the brain develops and how our bodies respond to the world. But newer research adds something equally important.
Scott Benner Positive experiences can build resilience and help heal those effects. In this series, Eric and I will explore what science says about adversity, support, and connection, and how families living with type one diabetes can intentionally build the kinds of experiences that help kids and adults grow stronger over time. If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome.
Scott Benner Type one, type two, gestational, loved ones, it doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. Nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. Always consult a physician before making any changes to your health care plan.
Scott Benner US Med is sponsoring this episode of the juice box podcast, and we've been getting our diabetes supplies from US Med for years. You can as well. Usmed.com/juicebox or call (888) 721-1514. Use the link or the number, get your free benefits check, and get started today with US Med. Today's episode is also sponsored by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem MOBI has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Scott Benner Erica, the other day, I sent you a note, and I said, we talk about the ACEs sometimes. Is there something opposite of the aces? And I went to, the Internet to try to figure it out, and then I just threw it in your lap. And you've come I said, you know what? You get this. You don't want my brain picking through it. But but it occurred to me if there are things that, you know, studies say if you grow up around these things, you may be you know, you may have certain outcomes that are not positive. Are there things that people grow up around that give them positive outcomes more often than not? And I just found myself interested in that, and I wanna know what you unearthed when you were looking through all this.
Reviewing the ACE Study
Erika Forsyth Yes. Great. So well, lo and behold, even in your, you know, inquiry and thought, those things these lists, these studies do exist. And so we are gonna talk about the kind of the the opposite of the ACEs. I think it might be helpful to start with reviewing the ACEs study. And I know we we did do a resilience series, and we talked about the ACEs study pretty extensively, but thought we could start with that and then end today with talking about what the opposite of the ACEs are, which are, you know, adverse childhood experiences. So the opposite are positive childhood experiences. How does that sound?
Scott Benner I think that's terrific. And and you can please tease here a little bit that it maybe isn't as black and white as these things happen to you. So you're going to have positive outcomes or these things happen to you and you're gonna have negative outcomes. There's also maybe a more of a gray area?
Erika Forsyth Yes. So the results of the ACE study, which, yeah, we can we'll get into in a minute, but I think what the biggest kind of outcome that researchers kind of unearthed was that even if you have a high ACE score, a high adverse childhood experience score, if you were to take the the test or the survey, They realized that, wow, still a lot of people grew up and and this is for, you know, adverse childhood experiences between birth and 18 years of age. They found that as as adults, despite having high ACE scores, they showed up in life with healthy outcomes across the board, mental health outcomes, in relationships, in profession. So it there wasn't this you know, it wasn't, an equal it wasn't proportionate to the amount of know, if you had an ice high ACE score, that meant that you were gonna have a really challenging adult life. And so that led the researchers to wonder, well, what what was it that kind of aided people in having healthier outcomes later in life?
Scott Benner We'll talk about that. That's awesome. Okay. So, yes, please, let's review what ACEs is just, you know, for anybody who's uninitiated.
Erika Forsyth Okay. So the ACE study was conducted by the CDC and Kaiser Permanente of Southern California and by two doctors, doctor Vincent Felletti at Kaiser and doctor Robert Anda at the CDC. And so they conducted studies surveys with over 17,000 members from Kaiser here in my hometown in Southern California. And from the years of 1995 to 1997, there were two waves of these surveys that went out. And so the the kind of the landmark study and this article came out in 1998 as a result of these surveys. It was titled relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults. So that's a pretty, you know Intense title.
Scott Benner What a title.
Erika Forsyth Yeah. Okay. So they kind of continue to dissect and analyze the data and the research, and this continued into the February. But, basically, the summary of of the findings said that that the child's brain, you know, grows in a very sensitive way step by step. And during childhood, the brain is building, as we know, all of the systems that control your emotions, your learning, your memory, your stress response. And so because the brain is still developing when the child between newborn to 18, they have early experiences of stress or trauma, they will have a big outcome, right, and a big impact for better or for worse. Okay. So shall I keep going?
Defining the 10 ACEs
Scott Benner Can I just list them for people very quickly? So the ACEs are depending on how you read the list, I I I see them as being broken up into a couple of sections. Abuse, neglect, household dysfunction, I think are kinda like the three, you know, big ones. Inside of abuse, it's physical abuse that a parent or other adult in the household often or very often push, grab, slap, throw something at you or ever hit you so hard that you had a mark or you were injured. That's physical abuse. Emotional abuse that a parent or another adult in the household often or very often swear at you, insult you, put you down, humiliate you, or act in a way that made you afraid that you might be physically hurt.
Scott Benner Then sexual abuse did an adult or person at least five years older than you ever touch or fondle you or have you touched their body in a sexual way or attempt or actually have oral, anal, or vaginal intercourse with you? So that's the abuse section. Neglect is physical neglect. Did you often or very often feel that you didn't have enough to eat, had to wear dirty clothing, or had no one to protect you, or your parents were too drunk or too high to take care of you or take care of or take you to a doctor if you needed it. Under neglect also, emotional neglect, do you did you often or very often feel that no one in your family loved you or thought you were important or special, or your family didn't look out for each other, feel close to each other, or support each other?
Scott Benner And then under household dysfunction, which gosh. I guess they all could have, like, fallen under this one, but divorce or separation, were your parents ever separated or divorced? Domestic violence. Was your mother or stepmother often or very often pushed, grabbed, slapped, or had something thrown at her? Or sometimes often or very often kicked, bitten, hit with a fist, or hit with something hard, or ever repeatedly hit over the at least a few minutes or threatened with a gun or a knife. Jesus. Is the last time. Number eight, substance abuse. Did you live with anyone who was a problem drinker or alcoholic or who used street drugs? Number nine, mental illness. Was a household member depressed or mentally ill, or did a household member attempt suicide? And 10, incarceration. Did a household member go to prison or jail? And depending on how you answer those questions, you're, you're given a score. Is that that's how that works?
Erika Forsyth Yes. It is a heavy list. Yeah. I believe we went into the results in the resilience series, but a high percentage of people from these 17,000 participants a high, high percentage had one or two. But I don't unfortunately, I actually don't have the numbers in front of me at the moment, but I I believe we went into it, and you can probably find those pretty easily if you were to if you were curious.
Scott Benner Kicking around. Yeah. Yeah. So, anyway, that so, anyway, it's such a weird transition. Yeah. That's the ACEs list. And, you know, if you've had these things happen to you, what did the study say? It does what for to you?
Neurological and Biological Impacts of Stress
Erika Forsyth Okay. Yeah. So, yep, what happens when if you are exposed to any of these adverse experiences? So the research, even amongst not only humans, but also animals, have shown and indicated that too much stress, and particularly stress that is scary and unpredictable and repeated or repeated, can change how the brain works. It alters, the systems. And so if we can go into that, like, what does that actually mean? So the brain's alarm system, which is the amygdala, becomes extra sensitive. Right? The child may react more strongly to stress, fear, or conflict if they are exposed to these things that are scary, unpredictable, or repeated. The prefrontal cortex, which is your your thinking and kind of calming regulating system, can weaken, and this can make it harder to manage the big feelings. It could make it harder to stay focused, remain calm. The body's stress response system, which is the hypothalamic pituitary adrenocorticole, otherwise known as the HBA axis, is thrown off balance. So this the HBA axis is is designed to help you to respond to challenges. But if you get if you're exposed to early stress, it can lead you to feeling, overreactive. And maybe that's why sometimes people are are described or feel like they're being too sensitive, but that's really often a response to something like this or under reactive, and your body's just trying to shut down. Again, these are all systems and things that as a newborn or a child up to 18 develops to just try and stay alive. Right? Like, it's they're just trying to keep going, and so this is how your system responds.
Scott Benner Can I jump in for a sec? Is this a good place to pause you? Give me a half so I have the scoring here. A score of zero. None of these 10 things happened to me, reported by roughly thirty six percent of the population. One to three reported by roughly fifty one percent of the population, and those people also saw a moderate increase in health risks. A score of four plus reportedly by reported by roughly twelve percent of the population. This is often considered a critical kind of tipping point where the risk for serious health and behavioral consequences rise dramatically. It's also asking me to remind you that a high score does not guarantee a bad outcome just like a low score doesn't guarantee a healthy one. But once you get four and over, compared to a person with an a score of zero, individuals with an a score of four or higher are statistically more likely or much more likely to experience the following. Two times the risk of ischemic heart disease, two times the risk of cancer, two and a half times the risk of a stroke, three times the risk of chronic lung disease, four point five times the risk of depression, significantly reduced life expectancy. Some studies suggest that up to twenty years difference could be between the scores of zero and six and over. And then behavioral health risks, seven times risk of alcoholism, 10 times risk of using injectable drugs, and twelve times risk of attempting suicide. So that's that's some pretty impactful data.
Sponsorships and Resources
Scott Benner This episode is sponsored by Tandem Diabetes Care. And today, I'm gonna tell you about Tandem's newest pumping algorithm. The Tandem Mobi system with Control IQ plus technology features auto bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandemdiabetes.com/juicebox. This is going to help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever. Control IQ Plus technology helps to keep blood sugars in range by predicting glucose levels thirty minutes ahead, and it adjusts insulin accordingly. You can wear the Tandem Mobi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately, clip it discreetly to your clothing, or slip it into your pocket. Head now to my link, tandemdiabetes.com/juicebox, to check out your benefits and get started today.
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Healing and Rewiring the Brain
Erika Forsyth Yes. No. I think that's that's it is helpful. Yeah. So kind of going through what why that happens, we're kind of going through the kind of biological, neurological systems that are impacted by the stress that lead to some of those outcomes. The last two, the hippocampus, you know, which is where memory and learning is stored, the stress hormones can slow down the growth of those new brains brain cells, which impacts, consequently, your learning and memory. But also on a positive, a nurturing and enriched environment can help repair some of those damaged brain cells. And we're we are we're gonna get to the positive stuff soon. It's coming. So, basically, the yeah. Your brain chemicals involved in in mood and relationships are are shifting, you know, in in these develop years. And so it can make it harder to regulate emotions, forming secure relationships, and feeling really safe and secure internally, which makes sense that some of that a lot of the outcomes that you listed occur because of this shift in brain development.
Erika Forsyth So we can why why are we kind of reviewing this? Why we wanna kind of just remember the impact of of the ACE study was so significant and holding that you know, stress obviously impacts your child and not and they're not just being dramatic, but it is it is a chemical experience, right, as their brains are being wired. And positive, predictable, caring relationships are incredibly powerful. So and there can be healing. There it's not like if you're listening and you're thinking, well, either I, as the if you're an adult grown up now listening to this and that you experienced a lot of those ACEs, things can be rewired. Things can be healed. Things can be also prevented. So we're gonna kind of switch and talk about studies that came out as after the ACE study. I'll pause there.
Scott Benner Okay. Well, I mean, I don't know how other people parent, but it's my core belief that that part that you just said about being predictable, I think that's just super important. You know, just that your kids know they're getting what they get from you, and it's there if they need it, and that's it. That you're I used to think I know this isn't something everybody could do, but I always thought it was really valuable that my kids knew when they got home from school, I would be there. Like, just a very simple thing. I'm gonna open the door, and that guy is gonna be there. Right? Like, that's a thing I can count on. It happens every day. It builds trust. It builds it builds a lot inside of them. Right? Confidence. And then I have something that they I need to talk to you about. You stop and talk to them. You spend time with them. Listen. My my son's 26 at this point almost, and he he still lives here. He's, you know, trying to save some money up to, you know, move out. At the same time, he's been teaching himself to play guitar recently. And last night, I was busy. And I mean busy when he rolled into the kitchen and he was like, hey. Check this out. I taught myself this riff on the guitar. And I didn't even think twice. I just stopped what I was doing, leaned on the wall, I was like, show me. And he showed me once. He showed me twice. He showed me how he taught it to himself. And it's not easy because there is a voice in your head going, you're supposed to be doing something else right now. Right? And I just I fought the voice off, and I was like, it doesn't matter. Like, nothing matters except hanging out here with him for the next couple of minutes and let him share this with me. And then once I gave that away, I was enjoying it too. Not that I wouldn't have, but I was literally being pulled from one moment into another one. You know? I see that as the the successful end to him believing that when he has something to say, I'll stop and listen to him. And therefore, he came to show me because otherwise, if he didn't think I was interested, he would not have sought me out to show it to me to begin with. And I think all of that just builds together very nicely. Anyway, I that's what struck me of everything you just said, consistency and I don't I forget the words you used, but, like, the the belief that you're gonna be there or do or do a thing. It I mean, it's just as powerful as it is. The opposite is destructive. Right? If if if that same kid believes that when they come to me, I'm gonna dismiss them or that I don't care or I'm not interested or that, you know, if something gets said, they're gonna get hit, smacked, yelled at, screamed out, whatever. Like, you can see how that would would create a completely opposite situation. Anyway, sorry. That's, that's what you made me that's what you made me think of.
Erika Forsyth No. Absolutely. I'm sure I feel like we maybe have mentioned this on another episode, but the studies show that upon reconnecting with your child, it could be after school, it could be when you're getting home from work, that it's quality over quantity. So if you were to connect with eye contact, it could be for one minute. It might be a little bit more, but it's it's just brief. Drop everything. Eye contact. Connect. Have some physical touch of comfort, hug, kiss, whatever you do is way more impactful than feeling like you need to go like, kind of not having that moment and then feeling like you need to go do something that maybe is not enjoyable for you as much for hours and and kind of half being there. Kinda maybe you're on your phone, but you're also kind of throwing the ball.
Scott Benner I think the physical touch thing's really important too. I try to just lay my hands on them at some point, whether it's, like, on your shoulder as I'm walking by or, like, you know, tap you on the side as you walk by somebody. Just let them know, like, you're aware of them, I guess, is is is the way to put it. You know, with Arden, I think it's as as they've gotten older, like, I'll kiss her, like, on the head maybe or give her a hug when she walks by. But there's a thing. You can see it on people. Like, there's a moment in everyone's day. If you stop them and give them a hug, they're gonna melt. They're gonna be like, oh, thank god. I am tired of holding myself up. You know? And it just I don't know. Anyway, so hopefully maybe that stuff's gonna pop up on that that list in a little bit.
Defining PCE, PACE, and PEACE
Erika Forsyth It it probably will. Yes. Okay. So I thought it was important for us to kind of clearly define and explain the difference between these two different acronyms as a result of the ACE study. So one is the PCE, and I guess we'll just say can we say PEACE or maybe we just say PCE? Positive childhood experiences. And then the other acronym that came out is after the ACE study was Protective and Compensatory Experiences. So we're gonna get into that a little bit today.
Scott Benner That sounds like just a smart person trying to play off the aces, and then they got wordy.
Erika Forsyth Yeah. Yes. Well and then it also that also exists is now in within the kind of ACE community world they now refer to it as your PACE score. So you can also take a positive a PACE survey. Right? So then they'll say, what is your positive and adverse childhood experience score?
Scott Benner There's ACE, PACE, and PEACE? Is that really it?
Erika Forsyth Yes. Yes. Yes. Alright. Basically, I wanna make sure I understand. Okay.
Erika Forsyth Okay. The positive child experiences. So the study comes out. You know, the article comes out in the late nineteen nineties. People are dissecting the research. They're trying to determine why are people showing why are adults now showing up with such resilience even with high ACE scores? So doctor Christina Bethel released the results of a study in in 2019, and the study kit was conducted of 6,188 adults at John Hopkins. And she was seeking to identify what what are these qualities, these positive childhood experiences that could buffer against the health effects of the traumatic ones, the what that basically, all those things that you just listed.
Scott Benner Yeah. Right? So because what we just explained, people are are showing up with kind of healthy, normal development, good adult emotional health, wanting to understand the why behind it.
Scott Benner So somebody looked at somebody with a high ACE score and was like, I don't understand why is this person not suffering some of the same consequences we expect from people on this the the score high on this list. Exactly. And that leads to this. Okay. And that that leads to the study. Basically, it identified seven experiences that are statistically linked to good, positive, emotional, and mental health in adults. Okay? So this is kind of leading to, like, you know, how we went into this again a little bit in the resilience series of, like, how does one become resilient? How does one have up with resilience later in life? And these seem to be the, the outcomes. So here should I go ahead and list them?
The 7 Positive Childhood Experiences (PCEs)
Scott Benner Yeah. Do it. Yeah.
Erika Forsyth Okay. Okay. So the seven positive childhood experiences are:
- The ability to talk with family about your feelings and feeling safe to do so.
- The sense that family is supportive during difficult times.
- The enjoyment of participation in community traditions.
- Feeling a sense of belonging in high school.
- Feeling supported by friends.
- Having at least two nonparent adults who genuinely cared, like, maybe coaches, people in your your faith community.
- Feeling safe and protected by an adult in the home.
Scott Benner Wow. That seems like pretty basic stuff. I guess not. I'm sorry. You're saying something positive and I got negative. You're like, there's some great things that happen to people, Scott. I'm like, why don't they happen to everybody? And but some of these didn't happen to me when I was growing up. But, just hearing them back, it I don't know. It just doesn't seem like a big lift to, I I mean, support somebody during a difficult time, for example.
Erika Forsyth Right. Right. And and, yeah, I think that there you could look at it from two different, you know, perspectives of, like, wow. It's remarkable that people, even with high ACE scores, still were exposed to these situations that buffered the stress that kind of helped heal, maybe rewire some of the the negative experiences that they had as a child.
Scott Benner Right. I'm gonna choose to think of it that way. Thank you. Yeah. Yeah. Seriously. Because if you're in a household that also has the those ACEs thing going on, if you're experiencing any of that, that means that somebody is probably fighting through their worst demons trying to bring this to you as well. Right? That's the situation where you find yourself talking about your parents later, and you go, well, they did the best they could, which meant they were they were limited, and they still pushed through in some areas. And okay. Alright. I'm sorry. I shouldn't have come negative. Okay.
Erika Forsyth No. No. It's okay. But I I think it yes. We one could also look at this list and think about it as, yeah, it seems like common sense. Seems like, you know, it would be nice to feel like a sense of belonging in high school. It would be nice to feel supported by friends, but also when you're thinking about those adverse childhood experiences, it also makes sense why some of these things would be highly difficult to be exposed to. But with that so the this list is, I think, just important to note that, like, it is something that has occurred for these these later in life, these adults who also experience these positive experiences that help them, you know, succeed in life or at least health be healthy and thrive.
Scott Benner So I I'm looking at, like, an offsetting. Right? Like like, I don't know. The aces put three on, and we took one off, and it got a little like, that kind of thing. Okay. Yes. Alright. Yes. Okay. So that's that's the positive childhood experiences. So kind of moving forward and saying, okay. Well, what if like, must have been nice. Right? If if you're you're listening to this and you're thinking, well, gosh. I didn't I didn't have any of those things as a child, and I do have a high ACE score. Or perhaps your family system is experiencing a lot of these, stressors currently. I think where our hope is in that, you know, today and perhaps in the next, you know, one or two episodes is that we can provide some hope and some tools that things that if you have not experienced yet can be helpful to even heal now wherever you are in your age and stage of life to heal some of that pain and trauma.
Updates to ACE Scoring
Scott Benner Before you move on, I wanna add something about the the ACEs scoring because it struck me as odd, so I've been looking into it while we were talking. I thought, why does it not affect me poorly if I see a woman batter a man in my household? And it turns out that's a fairly common flaw, understood flaw in the system, and more modern clinicians have added it to say, do did you witness a parent or household member being hit and sold or threatened, etcetera? So but the the the the description's interesting that it said in the nineties, they they what they were trying to say was, have you seen your primary source of safety be assaulted? And that assumption back then that the children saw the mother as the primary source of safety. And that's why so the the question was designed on purpose like that, but it's been it's been changed, over the years. So, anyway, it just just as we were talking, like, I was like, that seems so strange. Why does it matter what sex is beaten on what sex? Like, that doesn't make any sense to me, and so there's your answer. Sorry about that.
The PACEs Science Initiative
Erika Forsyth That is interesting. Okay. So, as a result, the there was a a kind of a community initiative called the PACES Science Initiative. And this acronym stands for Protective and Compensatory Experiences. So and, again, this was developed after the ACES framework. And so we'll we'll go over the list, and then we can the hope is that we'll be able to go into more detail and even perhaps apply it to some, you know, diabetes Specific work as well in the next two, in the next few episodes. So these these are 10 specific protective experiences that that not only like like the positive childhood experience that can buffer or counteract, but also repair the harm from the ACEs.
Erika Forsyth So they these the PACEs fall into two different categories. One is relationships that heal, and this might these sound similar to the the PCE. So:
- Having parents/caregivers who provide affection.
- Having a best friend.
- Having adults who stand by you during difficult times.
- Being a part of a group, whether it's school or church or or other sports or activities.
- Having at least one caregiver with a steady job.
- Participating in hobbies or community activities.
- Living in a home with predictable routines.
- Attending school that feels safe.
- Having neighborhoods where people look out for one another.
- Having access to healthy food.
Erika Forsyth So these these are more kind of actionable, right, things that that a family or a community or a school can can focus on and intentionally build and apply. So with that and we I think we kind of already discussed kind of identified the difference between the the PCE and the PACEs. And, ultimately, the PCEs are what helps the kids thrive and be stronger later in life, and the PACEs are are things that have been identified, again, through research that helps kids heal and thrive.
Breaking Generational Patterns
Scott Benner Oh, yeah. I think this is really awesome because when I when I had the thought, it really was just a fleeting thought. I was sitting here working and doing something else at night. I thought there's so many times that I refer to this in the in the podcast. I'm like, did this happen to you? Have you heard about the ACEs? That thing I thought, is there not? Like, some like, didn't somebody do a study to, like, figure out the other side of all this? And, like, I I'm happy to know I I wasn't the first person to think of it, obviously. I actually feel a little silly now, but that's not the point. I like getting this back, like, especially because the resources here are they're just not heavy lifts, you know, like so what I'm reading is if if you're not living a life full of aces and you are, you know, doing some of these these, you know, piece or paces, then you're looking at a a a hopeful outcome. And even if you are struggling with things and you you could maybe facilitate some things that would offset and and really leave your kids in a better place. I mean, it's it's just a matter of you understanding that that's what's happening, and that's why we're doing it so that people can hear it and maybe hear because I I would also say that I wonder how many people are hearing this and thinking, oh, that's that's a horrible thing that happens to other people. But that's not me. I'm from a good family and blah blah blah. But I'm telling you now, I've interviewed enough people. We all have some of those aces. Like, I I don't know that I've ever met anyone who's heard those 10 things and gone, nope. Not me. Haven't heard about it. So, you know, if you have some of that stuff happen to you, and you're effectuating other people's lives based on the building blocks that you came up with, you might not even know you're doing it half the time.
Scott Benner I mean, there have been examples throughout the podcast that were, you know, not nearly this dire that, you know, I I I think of this one this one lovely woman who came on one time, and she was talking all about how her mom hid her health stuff from from them. They never she was never honest about her health stuff. But as she was telling her story as an adult, I was like, you hide things from people all the time. And I said it to her. Like, I'm not you know, she's allowed it to be on, I'm happy to talk about it. But I was like, do you not notice that about yourself? And she really didn't. I was like, you talked about being covert here, here, not sharing this, not sharing that, and then easily flipped into talking about how your mom you couldn't believe your mom didn't share these things with you. I was like, that's I'm like, that's great. She's like, what should I do? I'm like, definitely go see a therapist. But but at the same time, like, this is what it makes me feel like. Like, you know, as you sit here and, like, wonder about, like, a magic wand fix for all this that doesn't exist, but as you try to imagine it, I mean, I quickly recognize there's no stopping this. This isn't gonna, like this isn't a light switch problem. Like, this is generational slow building. Maybe fifty years from now, we won't be experiencing all this if you're lucky kind of movement.
Scott Benner But for those people who are interested in it right now, I mean, again, I don't living at home with a predictable routine, you you must be able to, like, accomplish that. Like, that's not tough. And I'll tell you too, I get uneasy when my household gets off of routine too far. You know? Like, it just it feels like everything's mixed up all of a sudden, and I don't know why that is. It because my dad yelled at me? Apparently, maybe. You you you're like, like, I don't know exactly, but that adds a ton of a ton of grounding. Even just watching my son, like, teach himself to play the guitar because we spoke about it one time. He seems more content. He's you know, in his free time, he's doing something valuable. He feels like he's getting somewhere. Even though it's not going incredibly quickly, he seems very proud of himself. He can come show with us. We are proud of him. We're happy to share that with him. You know what I mean? Like, in build, build, build. Guys could all do this is, I guess, my point in bringing all this up.
Increasing Positive Experiences
Erika Forsyth Yes. And I think what what is encouraging and hopeful, you know, that after the ACE studies came out, a lot of the discussion and emphasis was on, you know, how do we decrease these adverse childhood experiences which is still a movement and still an emphasis. But I think as a result of a lot of this research and identifying, you know, resilience and wanting to learn and understand it more, the the research and a lot of you know, even the clinical interventions have been focused on how do we increase these positive childhood experiences. And my hope is that as we kind of go through, it does seem like a very, maybe, basic list. It also might be a really complex and challenging list as you're thinking through. Well, how do I do this? I can't afford it, or I don't have time, or I don't have a community around me that feels safe. Our our hope is that we can kind of go through these two different categories, the relationships that heal and the resources that build skills and resilience, and talk about some practical ways that might seem maybe very obvious for some, maybe not as obvious for others and and go into more detail through these two different categories.
Scott Benner No. I take your point. I look forward to having the conversation and having you point out to me that that's not so easy for everybody. Like, seriously, because just because it seems obvious to me doesn't mean it'll seem obvious to someone else. And, also, I might be thinking I'm doing it and not really accomplishing it too. You should go ask my kids. But, actually, don't ask them. But, like, you should yeah. It might be like, I don't know what that guy's talking about. None of that happens here. But I don't know. I I again, I look forward to looking through it and trying to make sense of it so that the people listening can identify things that maybe they've seen in their past that maybe are impacting their future and can wonder out loud about how to stop it. Because it's all like, I hate to sound like an Oprah, like, episode from '86. But you were just trying to break patterns, really. Just trying to stop the circle from from perpetuating onto itself. Because you do it to them, they're just gonna do it to somebody else. And, you know, it's never gonna stop until somebody figures it out. And luckily for me, I have a lot of episodes to make, so I have plenty of time to talk about stuff like this. And I find this to be incredibly interesting.
Fascination with Human Behavior
Scott Benner I I think you know, Eric. I imagine people listening though, and this is not some unique thing about me, but I am you know, there are plenty of people who feel this way, but I am just endlessly fascinated by people's decisions and what they do and why they do them. I'm probably just trying to figure out why somebody treated me a certain way, but that's fine as long as we all get to talk about it and it helps somebody. I think that's part of, what building a a a complete community looks like. And Yes. But and like you said, after you get this part hammered out, it's not too hard to adjust it and point it at diabetes a little bit. Like, there's easily gonna be ways to look at this and think about how do I be more supportive of people with their diabetes. And, you know, it it's just as easy as easily as you could sit here and say, if these things happen, then down the line, I might end up being an alcoholic. Right? It's easy it's easy to say if these things happen, then down the line, I might not be taking care of my diabetes the way I should be. So what could we do to offset some of that to give people a chance at at long term health and and happiness at the same time? So if we can help people a little bit with that, I'm gonna call this a big success. Appreciate you doing it.
Erika Forsyth I'm excited about it. Thank you. I know you are. Actually, she was shot out of a cannon. Those were her words when we started recording. She's like, I'm so excited about this. And then they put a lot of pressure on me because I'm like, oh, god. I'm gonna screw this up. I know for sure. And I was like, she's got it all worked out in her head. I'm gonna say something dumb, and then she's gonna be like, no, idiot. And then we're gonna, like, go off on a oh, you know what I mean. And then we're gonna go off on a tangent. You're such a therapist. She's like, no. I don't think you're an idiot. I know you don't think I'm an idiot. Stop. I got a lot of good feedback about you recently. I just wanted to share that with you. People really, really, really love these these conversations with you. So I yeah. Thank you very much for adding them to the show. Alright. Well, next time we get back together, we'll keep this going.
Erika Forsyth That's right. Awesome. Thanks. See you soon. Bye.
Conclusion and Sponsorship Credits
Scott Benner Today's episode of the Juice Box podcast was sponsored by the new Tandem Mobi system and Control IQ Plus technology. Learn more and get started today at tandemdiabetes.com/juicebox. Check it out. Arden has been getting her diabetes supplies from US Med for three years. You can as well. Usmed.com/juicebox or call (888) 721-1514. My thanks to US Med for sponsoring this episode and for being longtime sponsors of the juice box podcast. There are links in the show notes and links at juiceboxpodcast.com to US Med and all of the sponsors. Hey. Thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the Juice Box podcast.
Scott Benner My diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control. I'm joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down complex concepts into simple, actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, where you can listen to it at juiceboxpodcast.com by going up into the menu. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen. Truth be told, I'm, like, 20% smarter when Rob edits me. He takes out all the, like, gaps of time and when I go, and stuff like that. And it just I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired Rob at wrongwayrecording.com.