#1791 Control Without Obsession

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

Scott and Jenny explore using automated technology and smart targets to achieve tight diabetes control without the mental burden.

Key Takeaways

• Individualized Targets: Advanced algorithms like the Twist pump allow for glucose targets as low as 87 mg/dL, which is significantly lower than many other approved systems, aiding pregnancy and tight management.
• The "Delta" Advantage: Seeing the point change (delta) between CGM readings provides critical context, helping users distinguish between actual glucose trends and temporary anomalies like shower spikes.
• Backup Vulnerability: Current adaptive algorithms often lack cloud-based backups for learned settings, meaning a broken phone or controller can force a user to restart the algorithm's learning process from scratch.
• Clinical Advocacy: Scott and Jenny emphasize that patients often have more granular, practical knowledge of daily management than some clinicians, highlighting the need for "outside the box" medical providers.
• Resource Navigation: JuiceBoxDocs.com has been upgraded to a searchable database of nearly 160 doctors, helping the community find medical professionals who are friendly to DIY algorithms and modern management techniques.

Resources Mentioned

• Juice Cruise 2026: juiceboxpodcast.com/juicecruise
• Tandem Mobi / Control IQ Plus: tandemdiabetes.com/juicebox
• US Med: usmed.com/juicebox or (888) 721-1514
• Eversense 365: eversensecgm.com/juicebox
• Twist Pump: twistwith2is.com/juicebox
• Juice Box Docs: juiceboxdocs.com
• Medtronic Diabetes: medtronicdiabetes.com/juicebox
• Dexcom: dexcom.com/juicebox
• Wrong Way Recording: wrongwayrecording.com

FULL EPISODE TRANSCRIPT

Introduction and Juice Cruise 2026

Scott Benner (0:00)

Hello, friends, and welcome back to another episode of the Juice Box podcast. Alright, Jennifer. Here it is. We're moving. I have intentionally wound Jenny up prior to our conversation, and then I'm just gonna ask her one simple question and we're gonna talk.

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Sponsors and Twist Pump Excitement

Scott Benner (1:41)

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. This episode is 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 tandem diabetes dot com slash juice box. Today's episode is also sponsored by usmed.com/juicebox. You can get your diabetes supplies in the same place that we do. And I'm talking about Dexcom, Libre, Omnipod, Tandem, and so much more. Usmed.com/juicebox or call (888) 721-1514. The podcast is also sponsored today by the Eversense three sixty five, the one year wear CGM. That's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the Eversense Now app? No limits. Eversense.

Scott Benner (2:56)

Alright, Jennifer. Here it is. We're moving. Have intentionally wound Jenny up prior to our conversation. And then I'm just gonna ask her one simple question and we're gonna talk. What's been bothering you around diabetes? Anything? What can we chat about today? We need a break from the bolus for.

Jennifer (3:13)

Yeah. No. That's great. Bothering. Oh my gosh.

Scott Benner (3:16)

Excited about, bothered by, something you wish would change. May go ahead, Jenny. Be the king of the diabetes world.

Jennifer (3:23)

No. I can say well, one thing as a starting on, like, a positive, I can say that I'm really excited about Twist. I really am. I think it's a step in the right direction in terms of what's being brought to the population of people with diabetes. It offers a lot more features that a lot of people are looking for, like targets that are lower, the way that the algorithm works, the fact that you've got control knobs that you have a chance to turn. You know, with the DIY community as the initial piece to building the loop tide pool loop within the twist pump, It's got a solid foundation to it. And it was built by people—like, the base of it is built by people who knew that there could be something different. I'm also excited that they chose to go with different CGMs.

CGM Interoperability and Low Targets

Scott Benner (4:19)

Which ones are are they available with now?

Jennifer (4:21)

So the Libre three plus and then the Eversense three sixty five.

Scott Benner (4:25)

Okay. Do you think DexCom will jump on, do you think?

Jennifer (4:29)

You know, I I don't know. I've asked, and I expect that it's in the pipeline just in terms of interoperability. All of the systems are hoping at some point to have a little bit more pick and choose person to person, which I think is valid given that some people can use some sensors, some people can't. I just in general, I really like—I like the places that the company looks like it's moving as, where they're starting is a good platform as long as they continue to get coverage and pick up speed.

Scott Benner (5:10)

Is the current build, a basal adjustment for higher blood sugars?

Jennifer (5:15)

It is. So it's only the—for those who understand loop to begin with, it's really only temp basal strategy. It doesn't yet incorporate auto bolus strategy. But, again, the targets go as low as 87 comparative to the other systems that are currently on the approved list. And that brings in a whole another group of people who may be—especially the population I heavily work with in pregnancy or preconception planning, it's like, well, the systems can kinda get me down, but they never really get me into that target that I'm looking for. So we end up having to do a little bit of, like, work around the edges to get that. And with this system, the target is already there, and I think it's a lovely thing.

Arden's Trio Management and Watch Bolusing

Scott Benner (6:03)

Yeah. Targeting is super, I think, super important. I hope this is a good example. Arden's using Trio, and she's very consistently, recently been using her GLP medication. Her target during the day is 80. During the night, I move it up to 90, and that keeps her from getting low overnight. The last four days, she had a kind of a stomach issue. She did not take her GLP when she should have. And now we're three or four days past the week long injection. And if I don't move the overnight target from 90 to 80, she'll sit at one twenty overnight. Just like that. And but if I put her to 80, then it'll—it somehow pulls her below 100. I don't pretend to understand the whole thing. I just know that that's how it works. Also, I'd like to say Twist is a sponsor. I didn't know Jenny was gonna say that, but Twist with two i's dot com slash juice box to learn more. Thanks, Jenny. I didn't realize that was gonna happen.

Jennifer (6:58)

No. No. Absolutely. Because that is—I also have a really nice—in my area here, I a couple months ago, I got a chance to meet with the clinical and sales representatives. Just a really nice support group. All the information that you could possibly want and everything. The other great thing is for those, again, who know Loop, Twist also has Apple Watch compatibility. So from a bolusing standpoint and everything, like, who always wants to pull their phone or their device out, right, when you got it on your wrist?

Scott Benner (7:31)

I also use Trio. Had been a looper for a long time. I never used the watch feature because it's just me, and I—I don't really care. It's like—I don't care what people think I'm doing. But for people who do, big deal. And for kids in school, I've heard, you know, a lot of kids don't wanna pull their phones out in class so they won't bolus because they're embarrassed. Happens a lot.

JuiceBoxDocs.com Facelift

Scott Benner (7:50)

You know, you brought up people who like DIY algorithms, and I—I'm gonna mention this here because I really don't know where else to talk about it. I didn't realize this was gonna happen, but I was just able to give juiceboxdocs.com a really big facelift upgrade to the way it works. If you don't know, people who listen to the podcast will reach out and say, hey. Listen. I've got a doctor, an endocrinologist, a nurse practitioner. They're really great. And we started keeping a list. There's a 160 doctors on that list now. Anyway, before, it used to be this just mess of text that you had to scroll through. But now it's searchable, and it's very simple to use. I'm on it right now. Like, Jenny lives in Wisconsin. If I type in even just w-i-s, I'm already there. It gives me back two returns in Wisconsin. It's Payola Sisto. It looks like Payola is pediatric at Children's Hospital Nena (Neenah), Wisconsin. The way it's set up now, what you have is her name, what kind of a doctor she is, where she works, and then there's little badges at the top. Pediatric for her. It could be adult. Both. But also, if they're DIY algorithm friendly, it's a little badge too.

Jennifer (9:25)

That's awesome.

Scott Benner (9:26)

Yeah. And then you can click address to get a map. You can click the phone number to call, or you can click a link to open up their website. We're updating it now. So, anyway, juiceboxdocs.com. Very nice. And so if you're looking for somebody who's DIY friendly, you can literally type in DIY in your state, and you'll get a list.

Jennifer (9:43)

That's awesome. And, you know, the doctors who are more DIY friendly would also be the ones who just in general, even if you're not looking for that, it does give a visual, and I think this is another positive note to make. It's like finding somebody who is an out of the box thinker. That's what I think when I see somebody marked as DIY friendly or willing to work with loop. They're just thinking outside the box. They're thinking in their terms of—this person needs individualization. They haven't found it here. I have to be able to help them. And that's super awesome.

Scott Benner (10:20)

The list started years ago as a list of doctors who wouldn't laugh at you if you went in and said, hey. I listened to a podcast, and this is what I figured out. That is really where it started. So but it's grown since then. And through the magic of AI coding—because I'm not a coder—I was able to—I should thank people real quick. Monica and Isabelle who helped me on Facebook, they took all the data from that website and put it into a Google Sheet basically so that the code could pull from it and populate and be searchable. I vibe-coded the search bar. So anyway, I was able to make it a little better. Okay. So that's something you were excited about, Twist. What's something you're angry about?

The Slow Pace of Diabetes Tech Updates

Jennifer (11:09)

Oh, the checklist. There's, like, multiples. Like, there's a whole checklist of things that would be lovely if they could be solved. I think it's that if there weren't halting factors in getting adjustments to our technology—the way that technology moves in terms of updates for what the diabetes community wants, it's slow. It's slow. I mean, that is a common thread of commentary across the book. When is this coming? Why is it not coming out? And as a rational thinker, you can say, I under—I understand the things that need the red tape. All the stuff that has to get done in order for it to be safe to put on the market, proven safe, doesn't, you know, give you blue dots across your face or whatever it is. But when you're the person living with diabetes and you see what's there, and then now we have—like, years ago as a kid, there was no comparison. You got what you got. There was no online community. There wasn't the DIY community. I think that's the biggest piece that puts this in people's mind as—why can't you move faster and make changes?

Scott Benner (12:42)

Right. There are these people that—most of them aren't even getting paid—handful of people spread out across the map who are volunteering their time and either writing big chunks of code or small bits or helping QC stuff and write out documentation so that you can understand what you're looking at. And look how quickly it moved.

Jennifer (13:02)

Right. Yep. And it's the behind-the-scenes then, it's my question. Like, a product comes out and I think, was anybody with diabetes on this board of configuration? Like, who—who thought this was a good idea? I just don't—like, these are the things that bother me. When people come to me with questions, I'm like, I don't know. I don't know who was behind it. Who dreamed this up?

Scott Benner (13:29)

I have a friend when you're younger would say: I think every company should have somebody with a slightly twisted mind in every meeting. And I said, why? He goes, have you ever read some of these greeting cards? He's like, they're very dirty, but I don't think they mean to be. And he's like, they needed me in there to go, well, I don't think we could say it that way. And I think very similar to what you're saying is you need somebody with diabetes in the room to go, like—have you considered this part of this? Because when you get, like, well intended business minded people in a room who don't know diabetes—I just got a recording set up with a company, and they said, who do you want to have on? And I said, somebody who understands this and isn't worried about what your lawyers think. Can I get that person, please? I'd like to speak to that person. And by the way, anytime you say that on a call, now that we all got COVID and we have Zoom now, you can see people and they all make the face—the "I know what you mean" face. I know that we send people out who just talk in circles around stuff and won't say anything. I want somebody with some autonomy. If they can't answer the question for real, then what's the point of all this, really?

Eversense 365 and US Med Sponsors

Scott Benner (14:43)

Today's episode is sponsored by a long term CGM that's going to help you to stay on top of your glucose readings, the Eversense three sixty five. I'm talking, of course, about the world's first and only CGM that lasts for one year. Are you tired of those other CGMs? The ones that give you all those problems that you didn't expect? Knocking them off, false alerts, not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link, ever sense cgm.com/juicebox to learn more about the Eversense three sixty five. Some of you may be able to experience the Eversense three sixty five for as low as a $199 for a full year. At my link, you'll find those details and can learn about eligibility. Eversensecgm.com/juicebox. Check it out.

Scott Benner (15:38)

I used to hate ordering my daughter's diabetes supplies. I never had a good experience. But it hasn't been that way for a while, actually, for about three years now because that's how long we've been using US Med. Usmed.com/juicebox or call (888) 721-1514. US Med is the number one distributor for Freestyle Libre systems nationwide. They are the number one specialty distributor for Omnipod Dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They always provide ninety days worth of supplies and fast and free shipping. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs, like the Libre three and Dexcom g seven. They accept Medicare nationwide and over 800 private insurers. usmed.com/juicebox.

Market Research and the Missing "Delta"

Jennifer (17:21)

Well, it makes me also think of I, in the past, have gone to, like, market research types of—you know, where you get to try a product. You get to play with it. You get to make the comments. Where do all those comments from people with diabetes go? I guarantee—I've often felt like they just were like: "thank you for your time. Here's your Starbucks gift card for joining in our services." And then they throw it in the—because nothing that I have ever commented on... And I feel like in the diabetes world, like, I have a brain. Might be worth listening to. Where did my information go?

Scott Benner (18:01)

I, along with countless other people—I'm not taking credit for this, obviously—but I don't know how many times I could have said to Dexcom over the years: can you please, like, add a delta to the feedback? I wanna see how far the blood sugar moved since the last reading. Just show me plus three, minus four. I did just go up to an AI input and say, wanna write code that makes this sheet searchable, and I wanted to do this, this, this, and this. And two days later, it was done, and I'm an idiot. So, like, you can't show me Delta? And so is it that you can't—like, is it that you tried and it broke something? Because if that happened, like, fine. I don't want it then. But is it because you didn't have enough people or you didn't think it was important or, like, what—because the whole community wants that thing to show Delta.

Jennifer (18:58)

100%. It's the reason that it's in the DIY stuff. It's the reason I can see on my—oh gosh. I've risen four points in this amount of time. If it's on that, it's clearly possible, and it's not rocket science.

Scott Benner (19:14)

Yeah. Right. And it also helps you now—like, now that g seven reports... I now see more—like, if Arden jumps in the shower and I see, like, a plus 12 out of nowhere, now I know—I don't think it's gonna stick there. And I think it's gonna drop again. It's not a thing to worry about. But if I just looked up and saw the number, I'd be like: "oh, I don't know what that—I think that number looks high to me." And I'm speaking because I use SugarPixel. I have a SugarPixel in my house. So, like, I look over and I see suddenly the SugarPixel looks out of whack. I go: "that doesn't make sense." And now—but I know it doesn't make sense because of the delta, not because if it was just the number, I would just think it was the number.

Scott Benner (20:13)

And I have probably interviewed somebody from Dexcom dozens of times in my life, and I have tried in earnest to mention it every single time. Please, can you add delta? People are asking for delta. And they go: "yeah. Yeah. It's on the list. It's on the list."

Jennifer (20:29)

The list. What list? Yeah. See? I've got a checklist. Like, why do these really? You've got a list? It's on the list.

Scott Benner (20:35)

Help me out. Do you have 700 other things on the list that are—better be world peace. Anyway, and by the way, Dexcom is a longtime sponsor. I love Dexcom. Dexcom.com/juicebox to learn more. But with the technology we have today and what year again did we put somebody on the moon, Scott?

Scott Benner (21:18)

I think it was in the sixties, wasn't it?

Jennifer (21:20)

See, my point being—if we've done that, which is rocket science to my baseline understanding, this should be doable. With the technology we have today, is it not just quick fix doable?

Tandem Mobi Sponsor and Missing Cloud Backups

Scott Benner (21:33)

Why can one pump company—it seems like they can more aggressively update their algorithm than another one. Is one company better at talking to the FDA than the other one? It's obvious from our perspective that, you know, some people look like they're running forward and some people look like they're not, and it gets frustrating when you're not. So this episode is sponsored by Tandem Diabetes Care. 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 powered by its best algorithm ever. tandemdiabetes.com/juicebox.

Jennifer (23:01)

Well, that brings up another one. No. This one is along the same lines. It's essentially—and this came mostly a couple years ago when Omnipod five came out. I call out the fact that when you get a new phone or your controller dies, you have no backup to your algorithm.

Scott Benner (23:29)

Yeah. Why isn't that backed up somewhere? You're gonna make me start over again? Are you kidding me?

Jennifer (23:36)

And I understand that there are tricks and things. Why should we—we live this twenty four seven. Why should we have to apply darn tricks to get it to update and get to where we had been once we finally finagled the system to get our blood sugars where we wanted them to be? Now somebody ran over my phone. So now I have to re-finagle the system and figure it out again.

Scott Benner (24:04)

Is it completely—that is a completely fair point. Again, Omnipod's my longest sponsor. I think it's a fantastic product. But what a great example. You gave us a pump that, like, makes adjustments to insulin, and then if I drop my phone in the toilet, they're all gone. Freak. Have you heard of the Internet? Do you know what the cloud is? Can it not be backed up? I'm sure most people don't even know. Just back the settings up. Is that not like—you know?

Jennifer (24:50)

And I will fairly say that it's the same thing with Medtronic. I mean, because they're both in a way similar adaptive algorithms. So in terms of—I have to get a new pump—well, great. Now all of that adapting has to start over. It does.

Scott Benner (25:11)

I can easily argue the other side of this. They're now taking responsibility for accurately backing up your settings. It's probably a HIPAA thing. Can I legally take your settings and put them with your name on a computer? Then what if that gets hacked?

Jennifer (25:31)

How about an ID number? Yeah. Like, come on. Again, I know you're trying to be very kind and very fair, but redesign it. There is no reason that that what the system has adapted to doing can't live someplace with your ID number A6942 instead of your name. And then it gets identified, and I dump it back in and, whoop, I'm all up and running again. Come on.

Dexcom Advisory Council and CGM Variations

Scott Benner (26:12)

I'm not saying that you're not right. I'm gonna be involved in an advisory council thing for Dexcom. Actually, I'm doing it later today. I'm gonna spend three hours on a call today. They're like: "hey. Feel free to send over your thoughts." I'll funnel them right in. I thought it was a good opportunity for me to funnel what people that I hear talking about back to them. What I see is Dexcom g seven last ten days plus hours for us. It jives well with her body chemistry, but I also know plenty of people who have issues. So I actually have a post up now that's collecting people's complaints, basically. It's up to, like, 250 comments. But to their credit, they wanted that. They were like: "yes. Send it. We'd love to see that."

Scott Benner (28:03)

But as part of the thing that I filled out in the beginning... I said: "it's a kind of an unfair thing to ask me what I think about CGM because I've talked to thousands of people who've lived with diabetes and insulin before CGM. And I know that if you put me in power, I'd slap one of those things on everybody who uses insulin. Any of its shortcomings, I don't care about. I hope you fix them, and you should. But way better than not having it." I have the perspective of having spoken to a 70 year old guy who boiled his urine at some point in his life. I've been very clear and honest.

Jennifer (29:14)

And I think that's a fair point that you just made too. The device companies, they are trying their best to serve the greater population. They really are. But the bigger piece to that being with CGMs, we all have under skin differences, and it's very visible when you look at who can utilize one sensor versus not another sensor. Even within one family—I have a family I work with with two little kids. One of them can wear the Libre three with phenomenal results, put a Dexcom on that child, and it is all over the place. The other child absolutely does beautifully with the g seven. They're—they're a 100% gene related.

Scott Benner (30:21)

And I've tried to make this point when I've interviewed companies in the past. Like, you're asking them to make a mechanical device that goes under your skin and works exactly the same way from person to person. Never gonna work that way. It is phenomenal how well it works now. I told them, I said, I think my daughter is healthier, safer, happier all because of Dexcom. Absolutely. 100%. Do I wish the wire didn't pop out once in a while? Yeah. I'd like for that not to happen. But if you're looking for shit to improve, here's my list.

G6 vs G7 and Product Progress

Jennifer (31:28)

I'm in the general population of people who still uses g six. G six has always worked for me. I didn't switch to the g seven because I work with enough people who have issues that I was like: "why would I switch when something works?" So now we know that it's not gonna be available anymore. I'm stockpiling as much as I possibly can. But I also see it from the other side. Our question in the diabetes population is: "why can't you just keep making both?" Hundred percent. That was my initial thought. But on the opposite of that, there's only so much energy in a company that can go into continuing to build better. What I think they should do is marry what was working and what isn't working into improving next and then getting rid of a product so that they can focus on building into the next generations.

Scott Benner (33:11)

Maybe what we don't know is that g nine's gonna be amazing. I can't give 15% of my workforce over to g six. I need them working on g eight. Seven works well. Everybody get on seven. We're gonna work on eight. In any other world except your health, people would go: "oh, that makes sense." In terms of, like—like if you take a car. You're not gonna continue building the 1975 something when today we have these wonderful souped up other things. But when it comes to health, there's a very big difference. I wanna keep my g six. It works lovely for me. It works with my system. But I get it on the other way too.

Scott Benner (34:34)

And you're gonna be okay too. Arden's had diabetes for a fair amount of time now. And it has always gotten better. In hindsight, we're farther ahead than we were when we stopped. Imagine if back then I was yelling at the wind: "I like the meter we have. Don't change it." Then you don't get a CGM. There's only a certain amount of people in there. I see this argument a lot online. They'll tell how much money that Dexcom has in the bank. There's a lot more to it—you're paying shareholders, you're paying employees. Thank God Omnipod, Medtronic, Dexcom, Libre, Twist are doing this stuff. Because if they weren't, you'd get what you get and that would be it. A lot of these pharma companies decide they don't wanna make pumps anymore and they're gone.

Medtronic Seven-Day Infusion Sets and Future Hope

Jennifer (36:06)

Where'd that one go? The Animus? Yeah. Actually, the one that a lot of people really loved was the Cosmo, the Deltek Cosmo. That one was a phenomenal pump. Whoever made that needed to make money so that they could keep making the Deltek Cosmo, and apparently, that didn't work out so well. It didn't work out. I think you need a community focus with a business minded engine. In the initial stages, you really do still have to—and a 100% should be going to the diabetes community. Ask, what is working to begin with? What are the pros? What isn't working? Why isn't it working? Medtronic has their seven day infusion set now, which is lovely. I talked to somebody yesterday who chose Medtronic because her daughter didn't wanna change that infusion set so often. She doesn't care about the tubing. She likes it because that's a piece that her daughter really liked.

Scott Benner (38:01)

Medtronicdiabetes.com/juicebox. Head over there now. Thank you. So this is something that you were excited about, something that you were bothered by. What makes you hopeful?

Jennifer (38:21)

I think what makes me hopeful is the movement. While we haven't seen anything that is yet to be out of studies, it's the idea of stem cell, that whole kind of encapsulated betas that we could have implanted. Despite not wanting something sitting under my skin, if something was, like, a yearly surgical, you'd do it. And it meant that I didn't have to have all the gadgets and the beeping, Heck. I'd be in line because that would be pretty wonderful. So I have hope for a lot of those types of things.

Scott Benner (39:03)

How do you stay hopeful for that when I'm already aware that we've been talking about encapsulation for, like, fifteen minutes? Long time. How does that make you—because—is it—

Jennifer (39:12)

I think I'm hopeful because—I've had type one now for thirty seven and a half years. Wow. I also had the original "oh, in five to seven years it's gonna be cured." But that whole idea has now changed. I think they've got a better understanding that because we do have such an individual nature within each of our bodies and there is no proven reason—they haven't found the true reason that type one gets going to begin with. To fix a problem, you have to have the reason for the problem. Because there are a myriad number of issues that could be the reason somebody ended up having type one, then you have to fix a million problems.

Jennifer (40:13)

I don't wanna say that I'm not hopeful for a cure. But in what I've lived through, I'm more hopeful for therapies that are going to actually navigate an issue that can't technically be solved but there's an outside way to manage it, which was why I was so excited about the DIY kind of stuff. It's getting easier to navigate life because of the things that are helpful in living it day to day. My hope is that some of these things that they're discovering with implantables and cells and not having to use immunosuppressive medication in order for them to work. Things are also moving faster than they ever did before in that line.

AI researchers and Immune Responses

Scott Benner (41:11)

I have a couple of thoughts. I don't know that they're gonna cure type one diabetes by solely focusing on type one diabetes. I almost feel like it's gonna be more about the immune system and the immune response. Because I watch my daughter's life. My son has Hashimoto's. You see where their physical struggles are—it's all inflammation. That's the core of the problem. I think you turn that one lock, it probably opens a lot of doors. I am mostly hopeful that AI is gonna help researchers move more quickly. Asking one person to dedicate their life to something, they get forty years into it and realize: "oh, god. I picked the wrong path." Proof that this isn't the avenue. What a way to live your life. AI might help us pull together all those ideas and have a whiteboard. I've had a number of situations now where I've just sat people down in front of an LLM and said: "just explain all your problems to it because it can keep it in its head unlike a doctor can." Jenny can't—you help a lot of people. You don't jump on with the next client and go: "oh, I remember everything about you." Having a place where all of your information is centralized and available to something that can consider it all and can see the Internet and the ideas around health at the same time and maybe draw lines for you. That might be a really big deal.

Wasted Time and Pre-Bolusing

Scott Benner (43:09)

But short term, I find myself talking a lot to people about wasted time—I find that to be their greatest sin is to waste time. Life is just too short to be giving time away for things. I've had so many conversations with people who say: "I can't believe no one—I've had diabetes for ten years. No one told me to pre bolus. My life has gotten so much better in the last six months," and then the next thing they feel is the sense of lost time. When you're promising something to people that you know might not be for ten, twenty years, that is very debilitating. To give them something, anything today and tomorrow and another year from now, I think it fills people's souls. You should be out there as a company saying: "we love our algorithm, but we think it can be better. You should know we're working on that right now." I understand that companies don't wanna disclose secrets, but there should be more outreach panels. Reach out more to the community to bring that in. Get people's real experiences about how this works or doesn't work for them. I did it with people's struggles. I made a comprehensive list. If all these companies don't have a complete understanding about how all the other algorithms work by now—shame on them. I once saw a truck full of EVs on the way to another EV company. They bought every one of the cars to rip them apart to see how they worked. If you're not doing that, you're not doing something that you should be doing.

Decade of Partnership: Jenny and Scott

Scott Benner (45:46)

Jenny, here's an uplifting little thing. Next April, April 2027, do you know how long we will have known each other for? I would venture to estimate twelve years. Ten. We are gonna have known each other for ten years. That's the first time you were on the podcast, April 2017. I was trying to estimate based on my younger son's birth because he was born in 2017. Have we known each other longer than—could be. Wait. You're right. We met in 2015. You were on episode 37 of the podcast. November 2025, we knew each other for ten years already. Okay. How about you know what hit me? So I was right. You were right. Congratulations, first of all. My wife had said that I have to now tell you that I was wrong. The reason it hit me so hard is because you were like: "you know, I've had diabetes for over thirty seven years." I realized I've said almost all those little numbers along the way. And when you said thirty seven, you even shocked me. It made me feel like: "oh, I haven't updated Jenny's bumpers in a long time." There you did it. Now I'm more aware of it. I look forward to all of these. We've been talking together for a really long time.

Descriptive vs Clinical Knowledge

Scott Benner (47:56)

I feel like our conversations have helped me a lot over the years. Have I brought any of that to you, or do you mostly walk away going, oh, this freaking idiot. Oh my god. No. I think it's valuable of a 100%. I think the value is in talking through something. I'm very used to talking to other clinicians who think very similar to me. But it's different than talking to somebody who gets it on a similar enough level but has—and I say this in a nice way—like a school kid way of considering describing it. I wouldn't say it in a nice way. You're like a child. No. It's actually a positive. It's a plus to you because the descriptive way that you can explain something that I've said in maybe more of a clinical way, it also absolutely helps me talk through some things in a different manner with people. Again, we educate under, like, sixth grade level. That has definitely helped. And then just being part of the whole community. Because you're really the one that started a really large group of people to come together for the most part of really friendly way of discussing and helping people. There's not a salesy component to the connections. Being connected to your community is fantastic. The knowledge that I have, I just want more people to be able to have it too.

Success Data and Clinical Practices

Scott Benner (50:31)

The Facebook group has 80,000 in it. The podcast itself does about a 140 to a 150,000 unique devices every 30 days. Just crazy. I am one person. I can't possibly work with all of those people. This has brought a way to be able to provide and distribute that. Educators should be doing something of the same. They should be looking at what is a successful patient? Where have they gotten their information before they came to me? What are successful practices doing differently? They should be collaborating more much like pulling apart the car. You have to honestly be able to admit: "I'm not doing everything right." You have to kinda step down and say: "well, gosh. There might be a better way for this person."

Scott Benner (52:20)

That ability to say, I don't know—that's hard to get people to do that. Do you know there's a company that actually rips cars apart and reverse engineers the whole car. Other car companies might pay them hundreds of thousands of dollars just for the report. If you're a clinician in an office and everybody's failing, instead of looking at those people and going: "you don't listen to me," maybe wonder what it is you're not saying to them. Go find some people who are succeeding and ask yourself: "why are they having better outcomes? What can we steal from them?"

Aspirational Management and High Alarms

Scott Benner (53:20)

Honestly, I think that's the core of why I've always tried to make the podcast more aspirational. When I started doing this, people told me: "do not share how you help your daughter. That's dangerous." I think that's wrong. You might hear something in what I said that resonates. People then go: "well, you're making people who aren't succeeding feel badly." That is not my intention. I hope what it really makes them feel like is that if this idiot's doing it, maybe I could figure it out. Like, I have no training in this. I figured some stuff out—like, I realized that my daughter's blood sugar was staying under 200 and that's where her high alarm was. So I moved her high alarm to one eighty, and then all of a sudden, I was keeping her blood sugar under one eighty. That was a revelation to me. Right? I'm sure to the people at Dexcom, they were probably like: "yeah, dummy. No kidding." But to me, it was a revelation. Then was like: "well, let me make it one fifty. What happens when I make it one thirty?" I was like: "oh, you get what you expect." If my goal becomes under one thirty, I seem to be getting that. I hope that looks aspirational to people. Because if you're busy running around telling them all the time how hard this is, then it ain't never gonna get better.

The Glucagon Scandal and Doctor Frustrations

Scott Benner (55:25)

I texted Jenny something the other day. I said: "please tell me if I'm out of my mind. I think I just spoke to an endo, and I feel like I know way more about managing type one diabetes than this doctor does. Is that really possible, or am I a narcissist?" I had a conversation with somebody who I was like: "you do not even have a baseline understanding of some of these things," and that was a doctor. That's my frustration in working with people as well. People aren't getting the baseline right information from the start. Several years ago, a family came to me. She asked her doctor for her early teen daughter for glucagon. And the doctor told her—this is a pediatric endo—told this family: "you don't need glucagon." Okay. Told them this. It goes right at your text that day. I was like: "in what world does this person function as an endocrine doctor for pediatric clients telling a family that they do not need glucagon."

Scott Benner (57:41)

Yeah. Hear that noise in the background? That's the people at Xeris Pharmaceuticals banging their heads against the desk. I would love if for every single insulin order that is written, a pop up message came no matter who prescribes the insulin—"does the person have glucagon?" If not, prescribe it. Add it. And then it's on the person. Nobody should have insulin in their house and not have access to glucagon. If you throw a thousand of them away—good for you. I have thrown many red kits away. And now several Gvoke kits. good for you. That doesn't mean it shouldn't be there. That is really like saying: "I don't need a seat belt. I don't have an accident every day." Pretty basic stuff. But a doctor told them that. You're not a narcissist.

MD Fellowship and Psychosocial Problems

Scott Benner (58:54)

I hope the people who only hate-listen appreciate that I questioned narcissism so that you could yell: "YOU ARE A NARCISSIST!" seriously, though, how could a pediatric endo tell you you don't need glucagon? How, when I'm explaining simple ideas about bolusing, could an endocrinologist go: "well, I don't think that's very important." You don't think timing the insulin's very important? Every time I said something, they only understood the very basic idea. It made me feel like their knowledge came out of a pamphlet. Their knowledge comes out of a fellowship. Specialty endocrinology includes all of the endocrine things. I like the example when I worked in the big hospital in DC. The head of our department was a phenomenal endocrinologist. He was adamant about not doing diabetes. He was a thyroid specialist. That is an intelligent doctor to be able to say: "this is my route, but I can't do this for you."

Scott Benner (1:00:47)

I also don't understand how you can be around it for that long and not make a leap into understanding it more deeply. After Jenny and I made the grand round series, I kept interviewing doctors. Nader Kasim, Jessica Hutchins, doctor Marwa, doctor Mueller. John Oden. These people have a deep understanding of what they're doing. The other person I talked to is no smarter than they are. They just feel like these people are more interested. I was saying some pretty basic things and they looked back at me like: "what are you talking about?" I said: "well, what about fat? How do you talk to them about bolusing for fat?" And she said: "I would appreciate if you didn't bring that up while you were here." Well, maybe I'm the wrong person. The right person then is gonna be exactly what she is. Count your carbs. Above the—just count your carbs. Also, can you speak more to the psychosocial problems? I was like—yeah. But they're all fixed by understanding how to take care of their diabetes. I'm telling you that after twelve years of making this podcast, most of those problems come from basic misunderstandings about how to use their diabetes and the cascading effect that comes from that. Yes. And then they go: "what?" I don't know what to do.

Doctor Bashing vs Improving Outcomes

Jennifer (1:02:40)

There is a lot of frustration, quite honestly. It's beating your head against the wall. You're not gonna break through because either they're so closed in accepting based on what their credentials are versus yours, or they really truly don't even know where to start with what you're saying. Why could it be possible to be correct? I'll tell you. If you're a doctor listening to this and you think I'm out of my mind, you go listen to episode five zero six. MD Kathleen Maltz. She's an endocrinologist who came on the podcast. She came on to tell me that she heard the podcast, was put off by it, kept listening to it, realized she was not helping her patients the way she should be, remodeled what she was doing. Then went to her staff and tried to tell the staff: "need you to go listen to this pro tip series." And the staff balked and said: "they're doctor bashing." And she said: "no. They're not. We're just not doing everything we could be doing, and they're pointing it out." I've never really been more impressed with a person than her coming on to admit that. You guys are missing something. A lot of you are doing great, but a lot of you are missing something.

Jennifer (1:04:22)

How many of those doctors actually have type one so that they do actually have a lived experience that does make it better? Or do none of them and they just took it on themselves? "I'm an endocrinologist. I better know what I'm talking about because there is more and more incidents of type one diabetes. I need to keep up." Those are the doctors that you want to seek. I forgot to tell you on the JuiceBox doc page—if the provider has type one, there's a badge on their name that says: "provider has type one." That's awesome. I agree. Okay. Well, we obviously could do this all day, so we should stop. Thank you. Yep. Thank you.

Final Sponsors and Closing

Scott Benner (1:05:18)

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. The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year. One insertion. Every year? Come on. Eversensecgm.com/juicebox. A huge thanks to US Med for sponsoring this episode. Don't forget, usmed.com/juicebox. This is where we get our diabetes supplies from. Use the link or call (888) 721-1514. Get your free benefits checked so that you can start getting your diabetes supplies the way we do from US Med. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple Podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, oh, I'll probably send you a Christmas card.

Scott Benner (1:06:54)

Would you like a Christmas card? 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. Type one, type two, gestational, loved ones, it doesn't matter to me. Check out Juice Box podcast, Type one Diabetes on Facebook. 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. 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, 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. Truth be told, I'm, like, 20% smarter when Rob edits me. He takes out all the gaps of time and when I go—and stuff like that. I hired Rob at wrongwayrecording.com.

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#1790 Gold Coast

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

Ava’s mom Agatha shares how she spotted type 1 early, manages school-day diabetes on Australia’s Gold Coast, and navigates parenting, pumps, and the mental load of care.

Key Takeaways

• Early Detection is Key: Trusting maternal intuition and recognizing sudden symptoms, like frequent urination at a party, can lead to an early diagnosis and avoid the trauma of DKA.
• School Management Friction: There is often a disconnect between a parent’s goal of proactive health management and a school's goal of "emergency-only" intervention; building leverage through documentation of system failures can help shift this dynamic.
• Algorithm Nuances: Even with advanced automated systems like the Ypsomed/mylife Loop, management requires understanding insulin timing and curves to prevent post-bolus drops or algorithm-driven highs.
• Impact on Relationships: Chronic management can shift the parent-child dynamic toward a "totalitarian" or "clinical" feel; conscious effort and management confidence are needed to see the child before seeing the diabetes.
• The Power of Texting: Texting is an unsung management tool for caregivers, allowing for immediate, granular adjustments that prevent the "too little, too late" cycle of high and low blood sugars.

Resources Mentioned

• Omnipod 5, Loop, Medtronic 780g, Tandem Control IQ: Algorithm Pumping Series
• Cozy Earth: cozyearth.com (Use code: JUICEBOX)
• Medtronic Diabetes MiniMed 780g: medtronicdiabetes.com/juicebox
• Contour Next Gen Meter: contournext.com/juicebox
• Ypsomed (mylife YpsoPump): ypsomed.com
• Juice Cruise 2026: juiceboxpodcast.com/juicecruise
• Wrong Way Recording: wrongwayrecording.com

FULL EPISODE TRANSCRIPT

Introduction and Sponsors

Scott Benner (0:00)

Friends, we're all back together for the next episode of the Juice Box podcast. Welcome.

Agatha (0:14)

Well, hi, Scott. My name is Agatha. I live in Australia on the East Coast in a place called the Gold Coast, and I'm the mom to Ava who has type one.

Scott Benner (0:25)

Check out my algorithm pumping series to help you make sense of automated insulin delivery systems like Omnipod five, Loop, Medtronic seven eighty g, Twist, Tandem Control IQ, and much more. Each episode will dive into the setup, features, and real world usage tips that can transform your daily type one diabetes management. We cut through the jargon, share personal experiences, and show you how these algorithms can simplify and streamline your care. If you're curious about automated insulin pumping, go find the algorithm pumping series in the Juice Box podcast. Easiest way, juiceboxpodcast.com, and go up into the menu. Click on series, and it'll be right there.

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. This episode is sponsored by Cozy Earth. You can use my offer code juice box at checkout to save 20% off of your entire order at cozyearth.com. Everything from the joggers that I'm actually wearing right now to the sheets I sleep on, the towels I use to dry myself with, and whatever else is available at cozy earth dot com. Just use the offer code JUICEBOX at checkout.

Today's episode is also 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. Would you like to unleash the full potential of the mini med seven eighty g system? You can do that at my link, medtronicdiabetes.com/juicebox.

The podcast is also sponsored today by the Contour 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 kontoornext.com/juicebox.

Diagnosis in the Gold Coast

Agatha (2:20)

Well, hi, Scott. My name is Agatha. I live in Australia on the East Coast in a place called the Gold Coast, and I'm the mom to Ava who has type one.

Scott Benner (2:30)

I really appreciate you doing this. Thank you. We do have to tell people what time it is for you.

Agatha (2:35)

I thought we could avoid this. It's early. It's 03:35 in the morning.

Scott Benner (2:39)

Three why did you wanna avoid—don't want people to think you're crazy?

Agatha (2:42)

Yeah. Kind of. Even I think that this is a bit early. I'm an early riser, I'm so not the type of person that would wanna talk to you at midnight my time. But even 04:30 would have been slightly better.

Scott Benner (2:56)

I hate to say it, but we could have done it later if you wanted to.

Agatha (2:58)

Oh god. Don't.

Scott Benner (3:01)

Sorry.

Agatha (3:02)

I don't wanna hear that.

Scott Benner (3:03)

Okay. Okay. This was the only time I had available. There. Does that make you feel better?

Agatha (3:06)

Oh, good. Yeah. Yeah. Yeah. Yeah.

Scott Benner (3:08)

You have, how many kids?

Agatha (3:11)

I've got two daughters. Ava, she's five. She's my daughter with type one, and then I have another daughter, Isla, who is three.

Scott Benner (3:22)

Oh, pretty names. Very nice. Well, of course, when people hear Gold Coast, do they immediately—if they're not from there—start asking about sharks and things like that? I'm not gonna do that. I just wanna know if that's what happens.

Agatha (3:31)

I think when people hear that you're Australian, you get asked about sharks and scary insects and spiders and things things like that. But the Gold Coast is beautiful. It's kind of our, I guess, version of Miami. Lots of beaches and warm, and people come here for vacations. So, a lovely part of the country.

The Birthday Party and Google

Scott Benner (3:51)

Very nice. Awesome. Okay. So these two little girls of yours. When was—you said Ava has type one? How old was she when she was diagnosed?

Agatha (4:01)

She was two, nearly three. So April 2023. So we'll be coming up onto three years soon.

Scott Benner (4:08)

Okay. How did you find out? Did someone tell you, or did you figure it out?

Agatha (4:13)

I figured it out. I'm pretty proud of that part. We had that day being at a birthday party. One of Ava's friends, we'd just been at a park, and it was one of those places where there were no restrooms about, and she just kept needing to use—needing to use the bathroom. And so we kept finding a tree that she could go and do a wee behind, and it just struck me as really unusual that we were there for two hours, and she just kept needing to go to the bathroom. So we came home from that, and I immediately jumped onto Google and started asking questions and put in there that she'd been drinking more water and using the bathroom more, and it popped up with Type 1.

Scott Benner (5:00)

Wow. That—so one day? Just one day's events got you right to Google? Was it just that one event? Like, did you literally figure it out from one day peeing on trees, or was there stuff before that that culminated?

Agatha (5:13)

I think that's kind of when it all crystallized for me. She wasn't terribly—like, I listened to your podcast, listened to stories—she wasn't, like, obviously unwell in any other way. You know, I think I had noticed that she'd been drinking more water. She just started daycare. You know, it's one of those things where you rationalize behavior. Lots of kids are drinking more water. She's drinking more water. There wasn't a huge amount that I can point to that kind of felt like there was something wrong. It was really just that day. I just thought, okay. I gotta sort this out. Like, whatever's happening here, let's work it out.

Resistance at the Doctor's Office

Agatha (5:46)

And so I took her to the doctor, and the doctor looked at her and said—I said, you know, I hope this isn't type one, but, you know, I just wanted to get it checked out. The doctor said that if she had type one, she would be much sicker. Didn't wanna finger prick her or do anything like—and sort of gave me the choice as to whether we do that. And I said, well, we're here. Let's do it. Now when I think about it, it feels odd, but she finger pricked her heel even though she was... I don't know. Anyway, I just now I think about it and just think I'm not sure if she had many people come in with this, but, you know, checked her blood glucose, and it was high. And then yeah. That was it. Sent us to the ER and emergency room, and and it kind of all unraveled from there.

Scott Benner (6:30)

Is there, like, more to that part of the story? The doctor didn't wanna do it, but left it up to you. I always find that interesting when they say, like, well, I wouldn't do it. I don't think it's right. But if you want me to, okay. Like, what is that all about? You know what I mean?

Agatha (6:43)

Yeah. I don't know. I mean, she'd done a test. Like, we had some of her wee in a cup, and she tested it. And I don't know why it didn't show up with sugar or why she couldn't get an answer from that and then didn't wanna do the finger prick. But I don't know. I mean, she she really didn't look unwell, and I think we caught it quite early. I can't remember what her A1c was on diagnosis, but, you know, it it that was kind of one of the things that was hard about the whole whole situation is she she seemed pretty okay. Like, you I went from having a kid that was at a birthday party that was healthy and well to having a kid, you know, who wasn't, like, pretty quickly and not with, like, a lot of a lot of significant physical symptoms that showed me that something was wrong.

Scott Benner (7:35)

How did that impact you and her, actually? I mean, she's not even, like, complaining about anything. She just peed a couple of times at a party. So, yeah, was that difficult for you to accept?

Agatha (7:51)

I mean, I think it was—yeah, I think so. I'm grateful we didn't have the trauma of, you know, DKA and all this that I hear that can go wrong and how far down it can go, but it was a real... yeah. It was difficult. It was definitely difficult to just get my head around everything is different now, and we have to adjust to doing all these things we didn't have to do before and think about all these things and just kinda complicate life a little bit more. And my other daughter at the time was, I think, 10 months old. So I was still kind of in that haze of looking after a newborn and trying to work out, you know, how to adjust to life with two small children. So then kind of throwing that in felt like a lot of the time.

Maternity Leave in Australia

Scott Benner (8:36)

Yeah. But do you work full time, part time, or not at all?

Agatha (8:40)

I do work—at the time, I was on maternity leave with my second, but I'm a lawyer. So usually, work. And since having both girls and going back to work, I just work part time.

Scott Benner (8:53)

Okay. Okay. So you had been—you had the baby and you were still—how long did they give you in Australia after you have a baby?

Agatha (9:02)

We're we're pretty lucky here. I mean, I had—I took a year off with her and—but I think I can't remember exactly how much you get paid. You you can either get paid by the government or you can get paid by your employer. Mean, the employer might give you a, you know, a better a better amount. But I think I had, like, three or six months paid off, and then the rest was just, you know, self-funded time off with the baby. Yeah.

Scott Benner (9:32)

They were happy for that? Like, is that—I know it's not what you're here for, but do you feel any weirdness when you come back? And you're like, hey. Look who's back after a year. Awesome. Or did they not treat you that way?

Agatha (9:41)

No. It's really very normal. Like, most people take a year. Some—I mean, I took with my first with Ava—I took nearly two years off. And and then with Isla I ended up taking eighteen months off. So I had a bit of a gap between stopping work and then going back to work. And I think it depends where you work and who you work for, but I'm, yeah, lucky that I've I've got a good—I work at a good place, and they value me and and other other people that work there, and they're happy for you to go and and work, sort out that part of your life and then come back when you're ready.

Scott Benner (10:22)

It's nice. Here, we say that, but then treat you very poorly for doing it.

Agatha (10:26)

Yeah. Yeah. No. No. I mean, I I don't know if it's like that for everyone, but that was my experience. And it was good to have that time and ended up having some time to kind of work out how to look after Ava as well, like, pulled her out of daycare, you know, tried to work out how we do the insulin thing and how it all works, and it kinda gave us six months before she sort of went into back into care.

The "Diabetes Goggles"

Scott Benner (10:55)

When you said that everything's different now, did you mean just, you know, the nuts and bolts of diabetes is in your life, or did you mean that it's fundamentally changed other parts too?

Agatha (11:06)

I mean, yeah, it it's changed a lot. And, like, I don't know if that's a bad thing to admit, but it's changed the simplicity of doing things, you know, with the family. Going to a birthday party is really different now to how it was back then. All those all those little changes, and it—I don't want to say this, but it it also kind of changes your relationship with your child in a way and not always in a positive way. And that's hard, I think, to adjust to as well, looking after her and sometimes having her do things she doesn't wanna do, that she needs to do to to look after herself or make sure that she's well, it does feel like a completely different life.

Scott Benner (11:49)

Changes your relationship with her because you are in more of a, like, a—I'm gonna use the wrong word here, but—a totalitarian, like, you know, regime change kind of thing, like, where you're, like, you're telling her what to do now and it's not something you're happy about or something she's happy about? Or are you saying, like, how you see her interact with her or even feel?

Scott Benner (12:13)

The Contour Next Gen blood glucose meter is sponsoring this episode of the Juice Box podcast, and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. If you go to my link, contournext.com/juicebox, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, and Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through MyLink for the Contour Next Gen and Contour Next test strips in cash. The Contour Next Gen meter is accurate. It is reliable, and it is the meter that we've been using for years. Kontoornext.com/juicebox.

Scott Benner (13:24)

Friends, I just placed my order at cozyearth.com. They're today's sponsor. Use my offer code juice box at checkout when you buy, and you'll save 20% off of your entire order. I just ordered the cozy earth viscose bamboo blanket. It looks comfy as can be. I'm sitting here in my joggers, I slept on my sheets last night. Cozyearth.com. They pretty much have everything you want. Use the offer code juice box to save 20% at checkout on skin care, women's and men's clothing, bath, and sleeping accessories.

Agatha (14:31)

I mean, I think kind of both, to be honest. It's definitely the "okay, you need to come off the playground" or "I need to change the site, it's not working." I'm gonna pop in and do that, and then you can go back to the thing you're doing. And, you know, there's resistance to that, but she's—I think, like, all these kids, I hear people use the word resilient, but they just put up with it. They accept at this age at least that you're the parent and you're telling them what to do, and they do it, and they might protest to it. But then, yeah, I think it's also changed the relationship with her because, you know, when I'm reading her bedtime story, I'm also just having a look at her numbers and kind of thinking, should I be bolusing now? Because when she falls asleep, she's going to start to rise, so I need to get something going now, or should I wait a bit longer, or did she nap today? So is she going to fall asleep? It just sort of is in the back of my head all the time, and it does, I think, impact then how you are with your child or at least it does for me. And that's something that I'm trying to work on because I don't wanna put any of that on her or affect how she relates to me or relates to diabetes in a a negative way as well.

Scott Benner (15:44)

Yeah. I'd like to share with you that I I had that moment too. Arden came home from school one day, walked through the door, and I realized that I didn't even see her. I just saw diabetes and the things that I was gonna—and I realized that every day she'd come home and I'd say, what's your blood sugar? Because there was no sharing of CGM data. And so I had this, like, background fear... I'm not even seeing her. I'm seeing diabetes when she walks in the door. I gotta stop that.

Agatha (16:45)

Yeah. And how do you stop that? Like, that's hard.

Scott Benner (16:48)

Yeah. I mean, I don't know. It's just time and being aware of it and putting effort into shifting your feeling. But I honestly think moreover, it's about experience with the management and getting more comfortable that what you know is going to happen or what you hope is going to happen is actually happening. That was kind of how I tempered myself with it—I started doing this thing where I thought, like, what do I think her blood sugar is right now based on everything I did? And the more I was correct about that when I looked, the more comfort it gave me that when I wasn't looking, what I expected was happening was happening.

The Ypsomed Loop and Early Pumping

Scott Benner (18:36)

So what kind of technology did you get at diagnosis, and has any of that changed?

Scott Benner (18:46)

Unlike other systems that will wait until your blood sugar is a 180 before delivering corrections, the MiniMed seven eighty g system is the only system with meal detection technology that automatically detects rising sugar levels and delivers more insulin as needed. The MiniMed seven eighty g system works with the Instinct sensor made by Avid, as well as the Simplera Sync and Guardian four sensors, giving you options. Learn more at medtronicdiabetes.com/juicebox.

Agatha (19:55)

We left the hospital with the pump. We have a Dexcom G6, and we have a Ypsopump, which I don't think is available in America, but I know people have it. That's the one. So we left with that. It's sort of interesting listening to you, and you hear how lots of people have to be on shots for a period of time before they're allowed to graduate to a pump—we were never even really given the option to do shots. It was like, "this is the way to manage," and it was more, "here are the three pumps that we suggest you consider." This was the one that was recommended to us as has the best algorithm and is cutting edge. So, I mean, it was a really uninformed decision because we didn't really know anything about what we were doing and just trusted the educator when she said pick this one. I remember at the time being a little bit—I really hated the part of her being connected to the tube. It took me a while for me to get over that because it feels really medical to have the tube, but it's been a good pump, I think. She's fine with it. It doesn't bother her, and I think it's helped us get to where we are quicker, although I feel like I've had to learn a lot about what is it doing? How is this algorithm working? When to give more or take away? I have to work out more about how insulin works because I haven't really had to do that manual part.

Scott Benner (21:50)

Because the pump's been doing it the whole time for you. Does the government pay for it? How does that work there?

Agatha (22:29)

Oh, well, we have private health insurance, so I think that that helps us get the pump. So we didn't pay for it as far as I'm aware. That part was easy. I know that if we had gone to a different hospital, we would have had a different experience. It's just that we happen to go to one that has this particular educator, and this is the way she operates.

Scott Benner (22:55)

Okay. We all aspire to be Agatha when she said, "I didn't pay for it, I don't think."

Agatha (23:01)

Oh, I know. I've looked at how much these things are, and they're expensive. But honestly, I remember just filling forms out during that time. You know, she would send me a form, I'd fill it out, and we'd send it back, and then we somehow got the stuff we got. So it's all a bit of a blur.

Scott Benner (23:37)

So here's the rest of the question around the getting the pump on day one. If I just, like, came into the house all Grinch-style tonight and snatched up all that pump and left, would you have the first foggy idea about what to do tomorrow?

Agatha (23:49)

I would panic. I have pens. I would probably YouTube it and work out how to do it. It's such a good point because I feel like if you're gonna give the pump, you do need to still educate on how to do it without it. And while I have given a shot to my daughter at an appointment—like one time—I have a good friend whose daughter has type one, and she did shots for a long time. I would probably be calling her. I've got the Levemir in the fridge, and I'd work it out, I guess. You just sometimes have to work it out, not get caught up in the panic.

Scott Benner (24:49)

And do you know how much basal she gets a day? About?

Agatha (24:56)

Total between fifteen and eighteen units a day. Basal, maybe seven or eight. I'd have to check. I do know her carb ratios. They're in the phone. I would pull them out.

School Challenges and Texting

Scott Benner (28:48)

Are you the main caregiver for the diabetes?

Agatha (28:52)

I would say so. Yes. My husband works full time. Ava starts school this year—our school year starts in a few weeks. I'm the one that will go to the school if something's happening, and I'm the one that communicates with the teachers, answers their questions, or asks them to do things. My husband is obviously very capable of looking after Ava if I'm away, but mostly, it does sit with me.

Scott Benner (29:40)

In your note, you talk about challenges of raising a young child navigating school and friendships. Has that been a thing that was actually going wrong and difficult?

Agatha (30:18)

It's been difficult. When she's with someone else, the way that they wanna manage at school is having as little involvement with type one as possible so that they can focus on the teaching. Whereas when she's with me, there's a lot more happening. Because she's so little, I have to text the teachers. We had a couple instances last year where they were like, "only text us in an emergency." I found that hard because I'm like, well, it's not an emergency now, but it will be an emergency in fifteen minutes potentially. I just don't want her day to be interrupted where she has to sit down and not participate in gym class because she has to wait out a hypo rather than you just getting ahead of it now. So that's been a bit of a challenge. We do better when she's home than when she's at school because I'm more proactive.

Scott Benner (32:14)

Because you're more proactive?

Agatha (32:17)

Yeah. I engage with them more. I don't know what a typical experience is, but we can't go a day where I'm not having to catch a low at some point. In an ideal world, you bolus for the food, they eat it, the basal's right... it's just not that simple. If we wanna have numbers that are mostly in range, then it almost feels like we have to be in that situation where we're catching lows a little bit, and that's annoying at school. We always have a drop off the back of breakfast. If I don't bolus enough, she goes high, the algorithm kicks in, it pushes a ton of basal on her, it drops her low. If I bolus too much, she goes low. So we always seem to have a low in and around when she's about to have morning tea at school.

Scott Benner (33:58)

I take your point, though. You've been being aggressive to keep a spike away at breakfast, but the insulin's lasting longer than the food is. Is there a way to add a small snack after breakfast to stop—to almost pre-bolus the drop with food?

Agatha (34:20)

It's timing. If I give her something to eat at the wrong time, it's just pushing her up before it starts to drop. And she's not with me at that time. It would be great if the teacher would give it to her, but she's at school, and that's not the way it works, right?

Scott Benner (34:45)

I don't know how many people could hear through Agatha's accent where she was like, "it'd be nice if these motherfuckers would just listen to me."

Agatha (34:51)

Yeah. Totally. When she's been home over these holidays, I might do a stronger bolus for breakfast, and then that sort of a pre-bolus snack. But I have trouble sending her away—it doesn't fit in their day necessarily to be eating at the time when she needs to have that little snack.

Leverage and Building Trust

Scott Benner (35:41)

I misunderstood for a second. I thought you could make a heavier bolus that would keep the food down, would stop the algorithm from running again. But what you were saying is you can do that, but then you have to feed it before the drop. I mean, that sucks. How much does she weigh?

Agatha (36:00)

She's nineteen kilos. (Approx. 41 lbs).

Scott Benner (37:55)

Do you think she has any kind of a honeymoon going on still?

Agatha (38:09)

I don't think so. It all felt like it was easier when she was in honeymoon. One day, it just felt harder, and we were getting more spikes. What I'm really waiting for is for her to get old enough where I can converse with her directly and start managing things between the two of us. It would be so much easier if I could just tell her, which is what I do when she's with her grandparents. I don't really trust these people at school. It changes every year who she has. I don't think the nurse looks after these kids here. I've never even met the nurse. If anything happens to her—like she pulls out her site—I go do that.

Scott Benner (56:29)

I'm telling you right now that I believe that texting is the unsung part of the diabetes technology for caregivers. The sooner you act, the fewer times you get low. The sooner you can bolus, the fewer times you get high. That is a difficult thing to explain to a person who's just worried about you falling over and not about the rest of it. But I had an experience where when I explained the rest of it—that this is about her life in ten, twenty, thirty years—I found some humanity. In the end, they just decided to stop breaking my balls and backed up.

Agatha (1:04:12)

We've had a bit of that. We have had a couple instances where double the amount of insulin was bolused for something. I've not made a huge fuss about it, but it has helped me get leverage with the teacher. Then they're like, "okay, I'm listening to you. I'm glad you're watching this." But you don't wanna put people offside. I don't want people to be like, "oh god, here comes this difficult woman." But equally, I want people to do what I say. Where do you find that balance?

Scott Benner (1:05:06)

I do it with the realization that everything is a long negotiation. I'm in a slow chess game with somebody. It has to go slowly. There's a give and a take and you can't out yourself as a lunatic while any of it's happening.

Closing Thoughts and Future Series

Agatha (1:07:03)

I just wanted to mention—the pump Ava's on, the Ypsomed pump, isn't as represented in the US. I wanted to ask if you'd ever think about putting something together about how to use that and set that up? I know there's huge uptake of it in Europe and the UK, and it's pretty popular here in Australia.

Scott Benner (1:07:38)

Well, it's not not possible. I would just have to reach somebody at the company. I'll see if I can find somebody. I'll find an email address and reach out to somebody. Let's see how far this thing works.

Agatha (1:09:22)

I'm a big fan. I've been listening since a couple months after Ava was diagnosed. I asked on a Facebook page for a good podcast, and yours came up. It's been hugely helpful to us and supplemented what we've learned with our educators. Learning about how insulin works, how food hits, how it all interacts... I got that from your podcast.

Scott Benner (1:10:32)

Oh, that's lovely. I can't tell you how warm that makes me feel. I've been going back and forth about putting a calculator on my website that breaks down what your starting settings might be based on weight. It still gives me pause. I just feel like I'm drawing the conversations in and you guys are the ones helping everybody. I've just got the bullhorn at this point.

You said everybody calls the kids resilient, but you don't like that. I have the same feeling. I think bravery is the thing you're thrust into when you do or you die. Telling people kids are resilient ignores the idea that you're being put through something that you would never in a million years choose to do. I appreciate that you like the podcast. Thank you.

Agatha (1:15:17)

Thank you. It's been a pleasure. Thanks, Scott.

Scott Benner (1:15:36)

I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system. Visit my link, medtronicdiabetes.com/juicebox. I'd like to thank the Kontoor Next Gen blood glucose meter at contournext.com/juicebox. And Cozy Earth—use the offer code juice box at checkout for 20% off. Join the Juice Box Podcast private Facebook group. And join me on Juice Cruise 2026 sailing out of Miami on the Celebrity Beyond. Learn more at juiceboxpodcast.com/juicecruise. Wrongwayrecording.com.

READ FULL TRANSCRIPT

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# 1789 Born to Run - Part 2

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

Endurance runner, pharmacist, and foster dad Zach shares his adult LADA diagnosis, mastering insulin, exercise, and mindset—learning confidence, vigilance, and control just nine months into type 1.

Episode Takeaways

• Identifying Early Type 1 Diabetes Symptoms: Agatha describes her daughter Ava's T1D diagnosis story, where noticing frequent urination (even in parks) and extreme thirst led her to catch the condition early, despite initial medical dismissal based on the child "not appearing sick."
• Navigating T1D at School: A critical discussion on the friction between parents and school staff regarding "emergencies-only" management. Scott and Agatha emphasize the importance of proactive micro-bolusing to maintain time-in-range rather than reactive care.
• Global T1D Technology (Australia): Agatha shares her experience with the Ypsomed (YpsoPump) system and the Australian healthcare model, which often facilitates immediate pump training at diagnosis.
• Parent-Child Relationship Dynamics: A candid look at the "totalitarian" shift in parenting after a T1D diagnosis and the psychological weight of the constant "background noise" created by glucose monitoring during daily activities.
• Challenging the "Resilience" Narrative: Scott and Agatha explore why the word "resilient" often feels hollow to T1D families, reframing the experience as a forced endurance of difficult circumstances rather than an elective act of bravery.

Resources & Sponsors

Juicebox Content Mentioned

• • Algorithm Pumping Series: Detailed episodes on AID systems including Omnipod 5, Loop, and Medtronic 780g. (Search "Algorithm Pumping" in your player)
• • Texting Diabetes (Episode 4): Strategies for remote school management and caregiver communication.
• • Bold Beginnings & Pro Tips: Foundation series for managing Type 1 Diabetes.
• • Resilience Series: Discussions on the psychological impact and reality of T1D management.
• • Juice Cruise 2026: Community getaway for T1D families. juiceboxpodcast.com/juicecruise

Featured Sponsors

• • Contour Next Gen: Accurate and reliable blood glucose monitoring. kontoornext.com/juicebox
• • Medtronic Diabetes: Learn about the MiniMed 780g and Instinct sensor. medtronicdiabetes.com/juicebox
• • Cozy Earth: Luxury bedding and clothing. Save 20% with code JUICEBOX. cozyearth.com

FULL VERBATIM TRANSCRIPT

Scott Benner (0:00)

Friends, we're all back together for the next episode of the Juice Box podcast. Welcome.

Agatha (0:14)

Well, hi, Scott. My name is Agatha. I live in Australia on the East Coast in a place called the Gold Coast, and I'm the mom to Ava who has type one.

Scott Benner (0:25)

Check out my algorithm pumping series to help you make sense of automated insulin delivery systems like Omnipod five, Loop, Medtronic seven eighty g, Twist, Tandem Control IQ, and much more. Each episode will dive into the setup, features, and real world usage tips that can transform your daily type one diabetes management. We cut through the jargon, share personal experiences, and show you how these algorithms can simplify and streamline your care. If you're curious about automated insulin pumping, go find the algorithm pumping series in the Juice Box podcast. Easiest way, juiceboxpodcast.com, and go up into the menu. Click on series, and it'll be right there.

Scott Benner (1:04)

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. This episode is sponsored by Cozy Earth. You can use my offer code juice box at checkout to save 20% off of your entire order at cozyearth.com. Everything from the joggers that I'm actually wearing right now to the sheets I sleep on, the towels I use to dry myself with, and whatever else is available at cozy earth dot com. Just use the offer code JUICEBOX at checkout. Today's episode is also 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. Would you like to unleash the full potential of the mini med seven eighty g system? You can do that at my link, medtronicdiabetes.com/juicebox. Today's episode is also sponsored by the Contour 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 kontoornext.com/juicebox.

Agatha (2:20)

Well, hi, Scott. My name is Agatha. I live in Australia on the East Coast in a place called the Gold Coast, and I'm the mom to Ava who has type one.

Scott Benner (2:30)

I really appreciate you doing this. Thank you. We do have to tell people what time it is for you.

Agatha (2:35)

I thought we could avoid this. It's early. It's 03:35 in the morning.

Scott Benner (2:39)

Three why did you wanna avoid don't want people to think you're crazy?

Agatha (2:42)

Yeah. Kind of. Even I think that this is a bit early. I'm I'm an early riser, I'm so not the type of person that would wanna talk to you at midnight my time. But Oh. Even 04:30 would have been slightly better.

Scott Benner (2:56)

I hate to say it, but we could have done it later if you wanted to.

Agatha (2:58)

Oh god. Don't. I don't wanna hear that.

Scott Benner (3:03)

Sorry. Okay. Okay. This was the only time I had available. There. Does that make you feel better?

Agatha (3:06)

Oh, good. Yeah. Yeah. Yeah. Yeah. Yeah.

Scott Benner (3:08)

You have, how many kids?

Agatha (3:11)

I've got two daughters.

Scott Benner (3:13)

Oh, awesome. How old are they?

Agatha (3:15)

So Ava, she's five. She's my, my daughter with type one, and then I have another daughter, Isla, who is three.

Scott Benner (3:22)

Oh, pretty names. Very nice. Well, of course, when people hear Gold Coast, do they immediately if they're not from there, start asking about sharks and things like that? I'm not gonna do that. I just wanna know if that's what happens.

Agatha (3:31)

I think when people hear that you're Australian, you get asked about sharks and scary insects and spiders and things things like that. But the Gold Coast is beautiful. It's kind of our, I guess, version of Miami. Lots of beaches and warm, and people come here for vacations. So, a lovely part of the country.

Scott Benner (3:51)

Very nice. Awesome. Okay. So these two little girls of yours. When was you said Ava has type one?

Agatha (3:58)

Yes. She was two, nearly three. So April 2023. So we'll be coming up onto three years soon.

Scott Benner (4:08)

How did you find out? Did someone tell you, or did you figure it out?

Agatha (4:13)

I figured it out. I'm I'm pretty proud of that part. We had that day being at a birthday party. One of Ava's friends, we'd just been at a park, and it was one of those places where there were no restrooms about, and she just kept needing to use the bathroom. And so we kept finding a tree that she could go and, do a weave behind, and it just struck me as really unusual that we were there for two hours, and she just kept needing to go to the bathroom. So we came home from that, and I immediately jumped onto Google and started asking questions and put in there that she'd been drinking more water and using the bathroom more, and it popped up with Type One.

Scott Benner (5:00)

Wow. That so one day just one day's events got you right to Google? Was it just that one event? Like, did you literally figure it out from one day peeing on trees, or was there stuff before that that culminated?

Agatha (5:13)

I think that's kind of when it all crystallized for me. She wasn't terribly like, I listened to to your podcast, listened to stories. She wasn't, like, obviously unwell in any other way. You know, I think I had noticed that she'd been drinking more water. She just started day care. You know, it's one of those things where you rationalize behavior. Lots of kids are drinking more water. She's drinking more water. There wasn't a huge amount that I can point to that kind of felt like there was something wrong. It was really just that day. I just thought, okay. I gotta sort this out. Like, whatever's happening here, let's work it out. And so I took her to the doctor, and the doctor looked at her and said I hope this isn't type one, but, you know, I just wanted to get it checked out. The doctor said that if she had type one, she would be much sicker.

Agatha (5:59)

Didn't wanna finger prick her or do anything like and sort of gave me the choice as to whether we do that. And I said, well, we're here. Let's do it. Now when I think about it, it feels odd, but she finger pricked her heel even though she was I don't know. Anyway, I just now I think about it and just think I'm not sure if she had many people come in with this, but, you know, checked her blood glucose, and it was high. And then yeah. It that was it. Sent us to the ER and emergency room, and and it kind of all unraveled from there.

Scott Benner (6:30)

Is there, like, more to that part of the story? The doctor didn't wanna do it, but left it up to you. I always find that interesting when they say, like, well, I wouldn't do it. I don't think it's right. But if you want me to, okay. Like, what is that all about? You know what I mean?

Agatha (6:43)

Yeah. I I don't know. I mean, she'd done a, like, a a a test. Like, we had some of her, like, weigh in a cup, and she tested it. And I don't know why it didn't show up with sugar or why she couldn't get an answer from that and then didn't wanna do the finger prick. But I don't know. I mean, she she really didn't look unwell, and I think we caught it quite early. I can't remember what her a one c was on diagnosis, but, you know, it it that was kind of one of the things that was hard about the whole whole situation is she she seemed pretty okay. Like, you I went from having a kid that was at a birthday party that was healthy and well to having a kid, you know, who wasn't, like, pretty quickly and not with, like, a lot of a lot of significant physical symptoms that showed me that something was wrong.

Scott Benner (7:35)

How did that impact you and her, actually? I mean, is she she's not even, like, complaining about anything. She just peed a couple of times at a party. So, yeah, was that difficult to I mean, she was younger, but was it difficult for you to accept?

Agatha (7:51)

I mean, I think it was yeah. I think so. I'm grateful we didn't have the trauma of, you know, DKA and, I mean, all all this that I hear that can go wrong and and how far down it can go, but it was a real yeah. It was difficult. It was definitely difficult to just get my head around everything is different now, and we have to adjust to doing all these things we didn't have to do before and think about all these things and just kinda complicate life a little bit more. And my other daughter at the time was, I think, 10 old. So I was still kind of in that haze of looking after a newborn and trying to work out, you know, how to adjust to life with two small children.

Scott Benner (8:36)

Yeah. But do you work full time, part time, or not at all?

Agatha (8:40)

I do work at the time, I was on maternity leave with my my second, but I'm a lawyer. So usually, work. And since having both girls and going back to work, I I just work part time.

Scott Benner (8:54)

Okay. Okay. So you had been you had the baby and you were still how long did they give you in Australia after you have a baby?

Agatha (9:02)

We're we're pretty lucky here. I mean, I had I took a year off with with her and but I think I can't remember exactly how much you get paid. You you can either get paid by the government or you can get paid by your employer. Mean, the employer might give you a, you know, a better a better amount. But I think I had, like, three or six months paid off, and then the rest was just, you know, self funded 100 when you're time off with the baby.

Scott Benner (11:06)

When you said that everything's different now, did you mean just, you know, the nuts and bolts of diabetes is in your life, or did you mean that it's fundamentally changed other parts too?

Agatha (11:09)

I mean, yeah, it it's changed a lot. And, like, I don't know if that's a bad thing to admit, but it's changed the simplicity of doing things, you know, with the family. Going to a birthday party is really different now to how it was back then. All those all those little changes, and it it's I don't want to say this, but it it also kind of changes your relationship with your child in a way and not always in a positive way. And that's hard, I think, to adjust to as well, looking after her and sometimes having her do things she doesn't wanna do, that she needs to do to to look after herself or make sure that she's well, it does feel like a completely different life.

Scott Benner (11:49)

Changes your relationship with her because you are in more of a, like, a I don't I'm I'm gonna use the wrong word here, but, a totalitarian, like, you know, regime change kind of thing, like, where you're, like, you're telling her what to do now and it's not something you're happy about or something she's happy about? Or are you saying, like, how you see her interact with her or even feel? Or what what was it you were getting at?

Scott Benner (12:13)

The Kontoor Next Gen blood glucose meter is sponsoring this episode of the Juice Box podcast, and it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right. If you go to my link, contournext.com/juicebox, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, and Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through MyLink for the Contour Next Gen and Contour Next test strips in cash. My link may be cheaper out of your pocket than you're paying right now even with your insurance. Accurate, reliable, and it is the meter that we've been using for years. Kontoornext.com/juicebox.

Scott Benner (13:24)

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Agatha (14:31)

I mean, I think kind of both, to be honest. It's definitely the okay. You need to come off the playground or you need to you know, I need to change the site. It's not working. I'm gonna pop in and and and do that, and then you can go back to the thing you're doing. And, you know, there's resistance to that, but, like, she's I think, like, all these kids, I hear people use the word resilient, but they just put up with it. They accept at this age at least that, you know, you're the parent and you're telling them what to do, and they do it, and they might protest to it. Mhmm. But then, yeah, I think it's also changed the relationship with her because, you know, when I'm reading her bedtime story, I'm also just having a look at her numbers and kind of thinking, should I be bolusing now? Because when she falls asleep, she's going to start to rise, so I need to get something going now, or should I wait a bit longer, or did she did she nap today? So is she going to fall asleep? Like, it just sort of is in the back of my head all the time, and it does, I think, impact then how you are with your child or at least it does for me. And that's something that I'm trying to work on because I don't wanna put any of that on her or affect how she relates to me or relates to diabetes in a a negative way as well.

Scott Benner (15:44)

Yeah. I'd I'd like to share with you that I I had that moment too. It took me longer maybe to figure out that you did, but Arden came home from school one day, walked through the door, and I realized that I didn't even see her. I just saw diabetes and the things that I was gonna and I, you know, I realized that every day she'd come home and I'd say, what's your blood sugar? Because there was no there was no sharing of of CGM data. And so Mhmm. I had this, like, background fear that she had left school. That was the last time I knew what her blood sugar was because she would text me before she got on the bus. Like, my blood sugar is this. I'm getting on the bus. And then, you know, it's it wasn't even that long. It was twenty minutes or so, and she got home. And that entire twenty minutes, I just thought, like, is she okay? And then when she walked in, I wanna make sure she's okay. And by the way, most days she came home, she was fine, and it still didn't take the feeling away. But then I had that thought one day. I'm like, oh my god. I'm not even seeing her. I'm seeing diabetes when she walks in the door. I I gotta stop that.

Agatha (16:45)

Yeah. And how do you stop that? Like, that's hard.

Scott Benner (16:48)

Yeah. I mean, I don't know. It's just time and and being aware of it and putting effort into, you know, shifting your feeling. But I honestly think moreover, it's about experience with the management and getting Mhmm. More comfortable that what you know is going to happen or what you hope is going to happen is actually happening. And then once you can feel comfortable that I made the decisions, I know how this works, I can close my eyes for twenty minutes and imagine where we are now. That was kind of how I how I tempered myself with it as I I started doing this thing where I thought, like, what do I think her blood sugar is right now based on everything I did? And the more I was correct about that when I looked, the more comfort it gave me that when I wasn't looking, what I expected was happening was happening. That makes sense?

Agatha (17:39)

Mhmm. It does. It's tough. You know, it's funny because what you were describing, it's almost like if you if anybody's ever been in the hospital and the nurse comes in, you know, the nurse is working. They have, like, things in their head they're doing, and they're charting, they're testing things, and you start chitchatting with them. Right? And you when you look back, you realize you're not having a full conversation with that person. That's a person politely interacting with you while they're doing their job, and it that's how it made me feel. Like, you weren't really reading the book. You're politely reading a book with her while you're thinking about the diabetes, and that part makes you sad, and it should. You summarized it perfectly. This is my job.

Scott Benner (18:36)

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Agatha (19:55)

We left the hospital with the pump. We have a DexComp g six, and we have a Yipso pump, which I I I don't think is available in America, but I know Yeah. People have it. Yeah. That's the one. Yeah. I know it, but I it. Yes. So we left with that. It's sort of interesting listening to you, and you hear how lots of people have to be on shots for a period of time before they're allowed to graduate to a pump, we were never even really given the option to do shots. It was like, this is this is the way to manage, and it was more, you know, here are the the three pumps that we, you know, that we suggest you consider, and and this was the one that was recommended to us as has the best algorithm and, you know, is cutting edge and and the best one available. So, mean, it was a really uninformed decision because we didn't really know anything about what we were doing and just trusted the educator when she said pick this one. I remember at the time being a little bit I I really hated the the part of her being connected to, like, the tube in my head. Mhmm. Because it feels really medical to have the tube, but it's been a a good pump, I think. I mean, I don't have anything to compare it to, so I don't I don't really know what the alternative would be, but she's she's fine with it. It doesn't bother her, and I think it's helped us a lot. I think it's helped us kind of maybe overcome get to where we are quicker, if that makes sense.

Scott Benner (22:26)

Congratulations to Australia for just saying, look. Take the pump. Does the government pay for it? How does that work there?

Agatha (22:29)

Oh, well, we have private health insurance, so I think that that helps us get the pump. So we didn't pay for it Mhmm. As far as I'm aware. And know that if if we had gone to a different hospital, we we would have had a different experience. It's just that we happen to go to one that has this particular educator, this is the way she operates.

Scott Benner (23:41)

If I just, like, came into the house all Grinch style tonight and snatched up all that pump and left, would you have the first foggy idea about what to do tomorrow?

Agatha (23:49)

I would panic. I I have pins. I would probably YouTube it and work out how to do it. Yeah. It's it's such a good point because I feel like if you if you're gonna give the pump, you you you do need to still educate on how to do it without it. And while I have, you know, given a shot to my daughter at an appointment with our diabetes educator, like, one time, like, I can't remember now. But I have a good friend who's who's has a daughter as well who has type one, and she did that for a long time. And they're now on Omnipod, but I would probably be calling her. I'm I would be on the phone to her and say, how do I what do I do? But, yeah, I've got the Levemir in the fridge, and I'd work it out, I guess. You know? And that's, I think, this whole thing, a lot of it is, like, you just sometimes have to work it out, not get caught up in the panic of, what do I do in this situation? You just have to sort it.

Scott Benner (24:52)

Do you know how much basil she gets a day? About?

Agatha (24:56)

Oh, so she goes through roughly in total between, I'm gonna say, fifteen and eighteen units a day. Basil, maybe maybe seven or eight. I'd have to check. I'd have to have a look at the statistics, like, off the top of my head.

Scott Benner (25:37)

The panic would come from what? Like, because it's not is it mostly about giving the injections, you think?

Agatha (25:46)

I don't even think so. No. I've I've dosed I've even you know, the the mini glucagon before. Like, if I need to do it, I can do it. Yeah. What's the panic? I mean, I would hope I wouldn't panic, but I'm probably and you might have gathered this because you talk to lots of people, but I'm probably a bit of a warrior and a little bit more sort of anxious and wanna get things right. And so it would just be, you know, not stuffing it up and, you know, I don't know, priming it or doing whatever I have to do when I haven't missed a step, and I've and I've I've given the thing, and I've given the right amount. And it's just that kind of I haven't done this before and have I ticked the boxes, and it's happened the way it's meant to happen.

Scott Benner (26:30)

I get that when you told me you had kids and you had a female name, knew you were a warrior then. I didn't really need to talk to you after that. Keeping those kids alive and safe, but it's also sometimes I'm like, I what is happening?

Scott Benner (27:35)

I always contended that, like, you know what to do. It's just the delivery system's different. And, yes, the pump's doing the math, but you can look at the pump and see what the math is and just I think the the it's just the change that would be frightening. Are you the main caregiver for the diabetes?

Agatha (28:52)

I would say so. Yes. My husband works full time. So I've I've got the the two days with the girls and then well, with with my my youngest and then my neighbor's at school. So she's in more kindergarten. She starts school this year. So our school year starts in a few weeks. I'm the one that will go to the school if something's happening, and I'm the one that communicates with the teachers looking after her, answers their questions, or ask them to do things if they need to do things. So, yeah, it's it's mostly me. And then and then my husband, though, obviously, very capable of looking after Ava if I'm doing something or I'm away, which happens occasionally. Mostly, it does sit with me.

Scott Benner (30:04)

In your note, you talk about, like, challenges of raising a young child navigating, in your words, school and friendships. Has that been a thing that you were worried about or a thing that was actually going wrong and difficult?

Agatha (30:18)

It's been difficult, but I think it's probably was always going to be difficult on some level. And when I say that, I mean, they're not in then, you know, she's not with me. She's with someone else. And the way that they wanna manage at school is having as little involvement with type one as possible so that they can focus on the teaching and the and the schooling part. Whereas when she's with me, there's a lot more happening, and it's kind of finding that balance when I'm not with her that she's still looked after and she's having good results. Because she could have bad results and not be with me, but that's not what I'm aiming for. And I guess because she's so little, you know, I can't text her and ask her to do things. I have to text the teachers. And we did have an in you know, a couple instances last year. Kind of it's the year before they start school, but they're in the uniform. They have a a, you know, a a kind of a a proper schedule to the day that kind of follows what they would do if they were at school. And and we had a couple instances where they were like, only text us in an emergency. I found that hard because I'm like, well, it's not an emergency now, but it will be an emergency in fifteen minutes potentially. And more so, I just don't want her day to be interrupted, and she has to sit down and not participate in gym class because she has to wait out a hypo rather than you just getting ahead of it now with something small Mhmm. And and and letting her continue with her day as normal. So it's that kind of balance between having them look after her, but also, you know, not just doing the bare minimum. So that's been a bit of a challenge, and and I think we do I mean, we do better when she's home than when she's at school.

Scott Benner (32:14)

Because you're more proactive?

Agatha (32:17)

Yeah. Yeah. I I I, like, I I engage with them more and I'm you know, there's more, you know, my you know, a small ball is here or or or picking up a a drop, that kind of thing. I don't know if it's the technology or if it's what it is, but, like, we we we can't go a day where I'm not having to catch a low at some point. I don't know what a typical experience is. Like, I think in an ideal world, you bowl us for the food. They eat it. The basil's right. You know? It's mostly okay, but it's just not that simple. We we if we if we wanna have numbers that are mostly in range, then it almost feels like we have to be in that situation where we're catching lows a little bit, and and that's annoying at school.

Scott Benner (33:07)

Is that around activity? Do you think do you think she's more active at school than she is at home?

Agatha (33:12)

We always have a drop off the back of breakfast, which yeah. I know I know that I'm sure that other people have similar experiences too, but it just feels like if I if I don't bowl us enough, she goes high. The algorithm kicks in. It pushes a ton of basil on her. It drops her low. If I bolus too much, it's the same effect in that, you know, basil's not bringing her down, but the bolus eventually brings her down. She goes low. So we we always seem to have a low in and around when she's about to have morning tea at school. And we've had a year at school this year, and I haven't been able to fix it. Some days, it's okay. Other days, it's not. It's that kind of thing. And then more generally, I mean, maybe it's activity. I don't know.

Scott Benner (34:51)

I don't know how many people could hear through Agatha's accent where she was like, it'd be nice if these motherfuckers would just listen to me.

Agatha (34:51)

Yeah. Totally.

Scott Benner (34:53)

You're but then the algorithm then she's getting a little high, then the algorithm is pushing again, and you think the push is where the low comes from?

Agatha (35:01)

I think so. I think mostly. When she's been home, like, over these holidays, I might do a stronger bolus for breakfast, and then that sort of a pre bolus kind of the the snack, if that makes sense.

Scott Benner (35:14)

Well, that's what I was gonna ask. I was gonna say, why don't you be more aggressive with the food? But you can do it at home. You have trouble doing it and sending her away. How much does she weigh?

Agatha (36:00)

Wearing kilos here. So she's nineteen kilos? I don't know what that is. Forty one. She's eight bags of flower. I was right.

Scott Benner (37:52)

Do you think she has any kind of a honeymoon going on still?

Agatha (38:09)

I don't think so. I don't think so. I mean, we did diluted insulin at the beginning, and and it almost feels like it was easy. It all felt like it was easier when I think she was in honeymoon. Like, everything felt a bit easier. I know people seem to have trouble with it, but it seemed easier. And then one day, it just felt harder, and, you know, we were getting more spikes. And so I don't think so. I don't think that's happening, but Okay. I don't know. I'm still new with it. So

Scott Benner (38:35)

No. Yeah. I mean so what you're really if I'm hearing this through through your stories, what you're really waiting for is for her to get old enough where you can converse with her directly and start managing things between the two of you. Right?

Agatha (38:46)

I think so. Yeah. And I'm thinking about this stuff because we're we're Judah had a meeting about how everything's gonna look this year, and it'd just be so much easier if I could just tell her, you know, which is what I do when she's with her grandparents or or even with my husband. You know, sometimes I'll message and be like, can you do this? And it's just much easier to just do it that way rather than have this document that says treat at this number, do this at this number, here are the carbs. Okay. Bye. Like, it just seems so light touch for what it needs, really.

Scott Benner (39:31)

And tell me why that bothers you. I don't disagree with you, but I wanna hear in your words, like because she's coming home alive, obviously. Right? So, like Yeah. It's not it's not the worst thing. And you can and I think I hear in your voice you understand their perspective too. Tell me about yours. Like, why why do you dislike this this method?

Agatha (39:44)

Mostly, it comes down to the fact that she's more likely to run higher, and the highs are not addressed as as quickly. And and I I I get nervous when I see the drops, and and I'm not there. And it just feels like we're doing too little too late on both ends. Mhmm. And it just makes it more stressful. Like, the day is much smoother when there is a little intervention here or there versus waiting for, you know, something, you know, quote, unquote, bad to happen or we're in a bad situation and then trying to address it.

Scott Benner (40:22)

Agatha, you're a winner, aren't you? You're a go getter. Right? Like, you get out in front of things. But they don't this is my perspective after sending my kid through school. She's out of it now. But Yeah. This wasn't about her health from their perspective. This was about not having a kid pass out at school. That's Yeah. That's really was their only goal. Like, if your kid doesn't pass out or have a seizure, then we call this a win, and we are not measuring health outcomes or happiness or anything else. Like, that's that wasn't their that but that's your pretty much your only concern. And you've Yeah. Figured out a way to, like, take care of it. And they and so they're not interested because they said you've pleased only in emergencies. If you put yourself in their position, were you being a pain in the ass from their perspective?

Agatha (41:29)

I think in the beginning, a little bit. Yes. Mhmm. And as soon as they pulled me up on it, I I took the feedback and was like, right. Like, in the spectrum of things I could be asking them to do, what what is, you know, an emergency or closer to an emergency. So I think I yeah. I was a little bit at the beginning and less so after that. Having said that, it is interesting of the two people looking after her. One of the teachers and all the schools here do it differently, but at my daughter's age, there's two teachers in the room. One's the assistant. One's the main teacher. The main teacher was was very, we don't wanna hear from you. But the assistant who actually did a lot of the stuff, did a lot of the bolus thing, did a lot of the, you know, hypo stuff, she would say to me separately, I actually really appreciate you texting me. I like that you're looking at it and that you see what's happening. And so I think there is an element of who is the person you get? What's their personality like? And are they more willing to come on the journey with you? And, you know, we're gonna we're going to face this every year. The way our school does it is every year, you get a new batch of people, and you have to train them up, and you start again. I have a friend, her daughter. They have one sort of assistant that just looks after the kids with with type one and will go out and and bolus and do the hypos and stays with them as they move into the different year levels. And that feels like a really good system Mhmm. Because it's continuity. It's one person knows them. You're not teaching people from the beginning. And I just feel the way we're going to be doing it is there's going to be that learning curve, and there's gonna be mistakes. And then there's me learning how they are. Some people are better at this than other people. Some people are better with tech. Some people are not as good. But I think it you know, it's it's it's probably just part and parcel of being a parent with with type one, and you have to sort out how you're going to deal with it at school. But they're there a lot. They're there a lot. Right? It's like a third of her life is at school, so it's important to get it right.

Scott Benner (43:40)

Mhmm. No. For sure. Did does it give you any comfort that you have the whole thing figured out already? Because you're right. Like, that's all what's gonna happen. You're gonna get good ones and bad ones and some that are interested and some that aren't and some that can't grasp it. Even this example here, the person who's hands on between you and your daughter sees the bigger picture because they're involved, and the person still in the room but slightly removed from it is like, ugh, why is this happening? It almost feels like if you put put that person on the other end of the phone for a week, and they could watch a problem stopped in its tracks before it can happen, that kind of thing, that they would maybe have more perspective or and maybe it still wouldn't matter to them. Maybe that personality wise, they just don't care. Yeah. You never know who you're getting. And and the problem is, for for my perspective, is that every year, everyone smiles and looks you right in the eyes and goes, don't worry. It's gonna be fine.

Agatha (44:36)

Yeah. Oh, I know. I hate that. I had one one teacher say to me, doesn't it make you feel good that we've all done the diabetes training? And I was like, no.

Scott Benner (44:44)

No. It doesn't make me feel good when I'm taking care of her. And I care a lot. I always go back to the principal of my first child's elementary school, and I realized after a while that if the building was on fire, she'd say, don't worry. We got it. She was a politician. She wasn't even a teacher at that point. Just you could not have said anything to her that she would not have answered back with, oh, yeah. Yeah. Don't worry. We got it. Mhmm. I was like, know you don't. I know you don't. Yep. I don't got it. I don't got it. And and I love her. You're just contractually obligated to take care of her.

Agatha (45:23)

Yeah. Exactly. Episode four of the podcast is called texting diabetes. Yeah. I've listened.

Scott Benner (45:33)

Not by mistake, but that was one of the first things that I thought was just transformational in how Arden's health was while she was out of the house and at school. So

Agatha (45:42)

Yeah. Yeah. I mean, it's just baby steps. Right? Until we we get to that, and she's a bit older and, you know, she's this year, she'll have her phone on her, not all the time, but when she's out in the yard, and that's not something that we've done before. It's always been a teacher holding her phone. Mhmm. And, you know, she's we've been practicing her carrying it on her in a bag, and, you know, it's just one of the various little things we'll do is we keep moving towards it, her taking on more and more.

Scott Benner (46:11)

Yes. You start texting her, like, from other rooms of the house or when she's outside watching a mongoose and a cobra fight or whatever happens outside. And then one day, you'll just realize like, oh, we have a little system here. It works. She's good at it, and I can trust it. And, you know, it'll it'll open up everything for you. It's a thoughtful conversation you're having. I appreciate how how granularly you're talking about and thinking about just this one aspect of it.

Agatha (46:39)

Yeah. I mean, it's sort of yeah. It consumed a lot of my day because I'm trying to work or look after my other daughter and then also do this, and there's just an easy way to make it not stressful for us and for them. Do you think I don't wanna make you upset, but, like, do you think that your younger daughter is getting a bit of short shrift because of the diabetes? Are there things not happening for her that you think would have happened otherwise?

Agatha (47:05)

I think that that doesn't make me upset, and it is something I've thought about because, you know, it's easy to just focus on the child that has type one. I think I don't think so. I think she she I mean, she's only three, so, you know, she's she's aware, but also just, like, living life as a three year old and and easily distracted by things. So she did make a comment to me the other day, though. I said something about, you know, Eva has type type one. We need to take care of her. And she said and she's three. And she said, well, I have a peanut allergy, and you have to take care of me too. And I said, of course, I would take care of you, and I take care of Ava, and we all look after each other. So she I I don't know if there's something in that, like, you know, don't just take care of her. Take me take care of me as well. But I try to be very mindful about that. And, like, to be honest, day to day, like, if we're out doing things, it's holidays now. We're off doing various things. Like, this does not like, I'm not focusing on Ava, like, you know, so heavily in the course of the day. Like, I'm looking at my phone. I'm making decisions. I'm doing things. But, like, I'm there with both girls, and we're we're all together having a good time doing whatever it is we're doing. And it's not a thing that I feel like I'm not paying attention to one in order to address something for the other.

Scott Benner (48:22)

Can I give you a great piece of advice that you'll ignore? It's not gonna matter. 100%. Do the right thing because it's the right thing, but don't think that it's going to completely stop the human side of the whole thing, you know, where somebody's just gonna feel like, I remember when we stopped to do a blood sugar and I stood there for twenty minutes thinking like, I don't wanna be doing this. And, you know, and then, you know, I again, having hearing my son say we were always involved with Arden's blood sugar and her diabetes And and thinking about, like, contextually how much time and effort we put into him, I was like, ugh. That was defeating. But then to look across the room and watch Arden go, what? We were always with Cole. I was like, you've gotta be kidding me.

Agatha (49:17)

But is that a bit validating? Because because you were putting an effort into both equally.

Scott Benner (49:24)

Yeah. And neither of them thinks they were getting any effort, by the way. But look, here it is. They're not using meth, and they haven't shot anybody. So I figure, like, oh, we're done. Like, we did a good job.

Scott Benner (49:38)

And people just wanna like, I I think that you're always gonna feel that way. You know, I was telling somebody the other day, it's a weird setup for the thing, but I'm a really good dad. I'm a pretty damn good husband. Like, I'm a good provider. Like, the whole thing, I'm very focused on other people, and I have no desire for somebody to say thank you to me about it. But no one ever says thank you to me about it. Like and I wonder, like, why does no one ever say thank you? And I realized, like, I'm that's just who I am. I run around I thank people all the time. But when it comes to this, like, my goodness. Like, just every once in a while, I wish someone would go like, you know, I got a friend whose dad is cheating on my mom his mom with 13 different women, and my this guy's over here sitting with me at the table talking about life and doing stuff and and then, you know I don't know. I don't know why people's minds work that way, but I guarantee you those two girls are gonna think you paid more attention to the other one when this is all over. Have you do you have brothers and sisters?

Agatha (51:23)

No. I don't. No. I'm an only child. So I'm everything about yeah. Well, yeah. I mean, there was no one else to like. So They were stuck with you one way or the other. That's it. That's it.

Scott Benner (51:38)

Did your husband learn about the diabetes sort of through you, or did he have his own path to figuring it out?

Agatha (51:44)

He was in the hospital with me because we were juggling you know, having the baby as well. He was often there, you know, learning how to fill a cartridge and, you know, do all that kind of stuff. Not that he remembered any of it. I I laugh because I think about him watching the DA talking through it, and he's nodding. And, like, I can see that he's not taking any of it in. He doesn't do a lot of that stuff at home. I do a lot of that stuff. But in terms of learning, you know, what she needs and when she needs it, I think, yeah, we've sort of done it together, and he's around enough that he can actually, like, learn it, like, and and do it. And there are times when I'm away and he has to do it. And so he he's he's kind of we've kind of done it together, but, like, I think I've probably moved on faster than him just because I do it more often.

Scott Benner (52:45)

When you're away, are you is it like a puppermaster situation, or is he doing it, like, on his own autonomously? Are you helping and, like, filling in gaps?

Agatha (52:54)

No. He mostly does it on his own. Like, I don't I don't tend to he's pretty he's pretty good like that. Like, he's like, you're you're doing the thing the work thing or the whatever thing, and and I'm doing this. So it might not look the same as if I were doing it. He also doesn't necessarily, like, bowl this dinner every night, and he doesn't know exactly the way I do it Mhmm. To get where we get to by the time she's going to bed, you know, where we wanna be, that kind of thing. So he he's sort of works it out himself, but he does a great job. He's a he's hands on and takes it on and works it out and kinda goes with it. And he's he's the calm one. Like, he's he's, you know, he's like, okay. You know, we'll this is happening. Alright. That's fine. We'll we'll address it this way. And he doesn't get too caught up in being worried or stressed or anxious about what might happen. Kind of a guy's guy about it like that.

Agatha (53:47)

Yeah. I think so. I'm conscious he's going to listen to this. So I'm thinking of how to respond.

Scott Benner (54:03)

Well, hold on. Before you respond, let me say this. I don't care about how your husband manages your kid. I'm trying to get you to decide whether or not what's happening at school is okay or not.

Agatha (54:18)

Ah, okay. I don't think that comes up always as good when he does it as when I do it, but they're not far off. Like, they're close enough. So and and, also, like, I so rarely do go away and and do do things where I need to be focusing on the other things solely, but I just accept it in those instances. Like, this is his thing. He's got it now If this is okay for two days. You know?

Scott Benner (54:44)

So then my question is, is is it a management issue? Not issue, but is it is it a question of management, or is it a question of control? What a conversation to have 04:30 in the morning. I know. You're really upping my brain. But see, like, I can I'm happy to relinquish control when he's he's doing it because I trust I trust him. Mhmm. I don't really trust these people at school.

Scott Benner (55:10)

Ah, okay. Is there a central person at school that we could make a trustworthy person? Like an overseer on-site? What about a nurse, though? Is there a nurse in the building?

Agatha (55:25)

So, I mean, we're we're still new to the school, but and this sounds very different to what I think happened in The US. But I don't think the nurse I don't think the nurse looks after these kids. Like, the nurse looks after all the borders. Like, I've never met the nurse. I mean, we've been there two years, one year part time, one year full time before she's gone into sort of the junior school, so more in their kindergarten program, and I've never come across her. She's not been involved in anything. It's it's been the teachers. I think it's odd too. If anything's if if anything happens to her, I go. When I say anything, don't mean anything. Like, if if she needs a slight change, like, she's pulled out her side or something, like, I go I go do that. Or if she's running well, if I just don't like the way something looks, I go sorry. You were asking a question then.

Scott Benner (56:26)

No. No. No. Hold on. I'm sorry. I think I left my phone off of silent. Listen. You're not gonna get me to judge you. I've run from the shower to the Yeah. I ain't judging you. But I was wondering, like, could the nurse not be a go between? Like, could you not go to the nurse and say, look. Here's what we're trying to accomplish. It's going really well. We just need some more touch points. The, you know, the teacher seems to feel like it's too much. I don't think it is. You know, I'm trying to I'm trying to have good health outcomes here, set up a standard for her so she feels well. Know, I'm not sure how much you understand about diabetes, but, you know, bouncing blood sugar, high blood sugar could change, you know, her the way she, you know, interprets the world and and how she learns and everything. Do you see a pathway here between this and the time when she and I can start texting directly and and take the teacher out of the loop? You know? Or is there a way maybe you could go to the teacher and explain that, like, what I'm doing is not insane unless the nurse looks at you and thinks it's insane? I'm telling you right now that that I believe that texting is the unsung part of the diabetes technology for for caregivers. That's very important because the the sooner you act, the fewer times you get low. The sooner you can bolus, the fewer times you get high. If you don't get high, you don't get low later. There's just a ton of reason to be ahead of the game just a little bit. And Yeah. That is a difficult thing to explain to a person who's just worried about you, like, falling over and not about the rest of it. But I I had an experience where when I explained the rest of it, I found some humanity. You know? And I said to people like, look, I know you think this is about today and about her not getting dizzy or passing out or having a seizure. But what I'm telling you is this is about how she feels about herself, how her body works, and what her life's gonna be like in ten, twenty, thirty, forty years. You can't just tell me I have a bunch of kids with diabetes running around the school, and they're all fine. Except I know some of them, and a lot of them are running around with nine a one c's, and that's not okay.

Agatha (58:33)

Mhmm. Mhmm. Well, I mean, I think that broader picture of the implications beyond today, that conversation. Like, I can have that conversation when I meet with them in a couple of weeks. Mhmm. That's the teacher, and maybe it's the sort of the head of the junior school. I can ask about if the nurse gets involved. But, yeah, I think I'm just pushing for this time when, you know, I can cut these other people out. It can just be me and her. I mean, we're nowhere near it right now, but it just feels like that will be a big game changer.

Scott Benner (59:31)

Oh, I happily agree with you. I mean, you're talking to a person who, like, put their kid on the bus and was like, I don't know who that person is driving that bus. I'm not distrustful, but, like, in in normal, like, life, I'm happy go lucky, live and let live. I'm not distrustful of anybody, really. It's when it gets around my kids' health or their safety, then I'm like, hey. I don't know where we're all coming from right now. And I don't think that's neurotic, by the way. I think that's fairly reasonable. People don't really understand it until they actually look after someone with it or have it themselves. Like, it's just not something that you can explain, and then someone really has a grasp, and they're good to go. Mhmm. Like, you know, I similarly don't trust anyone really with her If she has an extracurricular activity after school, I'm not in the room with her, but I'm in the car. Like, I'm nearby. I you know, I these teachers, they hold her phone, and they'll respond to a text that I send them to give her something, but I still don't necessarily fully trust.

Agatha (1:00:40)

But, you know, then it's just this bout like, it's it's just a lot. Right? Like, working and doing that and having another child. Like, it's like a lot on the plate to kind of get through and juggle it all. And then also, like, try to preserve Ava's mental health in all this and not push worry onto her and make her hers too.

Scott Benner (1:01:01)

Like, that's too late for that. You're fighting too many wars on too many fronts is what ends up happening. Yeah. You get stretched too thin, and you can't do a good job at any of them. And you don't know who you're gonna bump into when you explain this whole thing. Like I said, you might somebody who's like, oh, I get it. Yeah. Right on. Let's do it. And you might get somebody that looks seeing and waits for you to walk out of the room because this one's out of her mind. And, also, it it occurs to me that you have another concern that didn't occur to me right away, but you also run the risk of leaving the room and having somebody go, oh, lady lawyer's pushing us around. Do you worry about that too? Like, the idea of, like because when I'm pushy, it's assertive, and when women are pushy, it's bitchy. Or bossy or whatever. Right? And then and on top of that, you're an attorney. So people already don't like you.

Agatha (1:01:49)

No. I'm aware. You know, I don't I don't even really know if the teachers that I'm dealing with, like, that context or the the dance teacher or the whoever even knows that about me, to be honest. Like, I'm not it's not a thing I open with or a thing that I drop into the conversation. Like, I'm just Ava's mom and probably annoying. I don't make a habit of it, really. So I don't know. I think I think I mean, moms in general, I think, like, the same way we worry, and we can also be pushy and be pushing whatever it is we wanna push in relation to our kids. So I probably just fall into the same bucket as any other mom who's wanting a particular outcome for their child and and persistent about getting that outcome. So, yeah, I'm not sure if it's worked against me. Maybe it's helped a little bit when I'm having a, you know, shall we call it, discussion about things. But on the whole yeah. I'll use what I can to help me, but I'm not sure I'm not sure if all that much is helpful sometimes in the conversations.

Scott Benner (1:03:05)

The more conversations I have like this over the years, the more I'm certain that thing that helped me the most is crazy to say, but they missed something and Arden got really low on the playground when she was young. I think that bought me the latitude I needed to put everything else into place. And without that, I probably would have been stuck in this argument forever because, you know, I mean, fair to say I was fairly ahead of the curve on how people thought about type one diabetes, you know, fifteen, twenty years ago. And so Yeah. You know, like, they really were. The entire answer I would get was, hey. We have a bunch of kids in this school with diabetes, a lot of them have come and gone. They're all fine. I'm like, do you know any of them anymore? And they're like, no. I'm like, how do you know they're fine? Mhmm. You just mean they didn't die that day. Right? Like, is that what you mean? Because, you know, I know another person in this building, and the kids a one c is high, and I'm not okay with that. And, you know Yeah. And that they didn't care about that. It was the day that they that the system they put in place failed that I was able to raise a hand and go, I told you. Now now we're gonna do it my way.

Agatha (1:04:12)

We've had a bit of that. We have had a couple instances where something like the wrong amount's being bolus, like double the amount that's meant to be bolus Mhmm. For something. Like and but I've not made a huge fuss about it, but it has helped me get leverage with the teacher that's maybe been involved in that particular thing. And then they're then then I think that's helped them then listen to me and kinda go, okay. You know, I'm listening to you. Like, I'm glad you're watching this. I'm glad you're involved. But maybe it's a thought about whether it's something to escalate. Like, it's it's it's all you know, there's, like, politics in this too. You don't wanna put people offside. I don't want people to be like, oh god. Here comes this, like, this woman who's Mhmm. Difficult and painful. But, equally, I want people to do what I say. So where do you where do you, you know, where do you find that balance?

Scott Benner (1:05:06)

I mean, I if I do it the way I do everything else is the realization that everything is power and a negotiate a long negotiation. I'm in I'm in a I'm in a long protracted slow chess game with somebody. I that probably sounds so cynical. Do I just think that, you know, we whether you're considering your relationship between you and your kid's teacher or how you feel about global politics or anything in between, everything's pretty much power. It's power and it's who puts things in in position to work for them and you can't rush it. It has to go slowly. There's a give and a take and you can't out yourself as a lunatic while any of it's happening. So it it's it's just slow and steady and and try to stay stay a little ahead and a little on top. Every relationship you're having, people listening, whether it's between you and your mailman or you and your husband or anywhere in between, this is going on in in micro ways that you might not even or you may be completely aware of. So I mean, my wife beat me years ago. Like, I she she got ahead, and I was like, oh, hell. I lost the high ground. I guess I'm the grocery bitch. Okay. I'll go get the grocery. I said, you know, I thought I was just being nice. I didn't realize she was setting a standard. Damn it. Mhmm. Anyway, I like how reserved, but in in the I I feel like if you and I weren't being recorded, you'd be a completely different person.

Agatha (1:06:46)

I do think so too. It's hard. Yeah. No. I don't think so. I mean, I just wanted to also mention because I love how you do all those series on all the different pumps and things like that. And I guess because the one that Ava's on isn't as represented in The US, we don't hear as much about it. But I just wanted to, you know, mention that one as well, the the Ypsomed pump and and ask if you'd ever think about, you know, putting anything together about, you know, how to use that and how to set that up. I don't know if that's possible.

Scott Benner (1:07:38)

Well, it's not not possible. I would just have to reach somebody at the company. I actually just got done recording with Tandem about one of their device well, their device. And because it's more about their algorithm, really. But hold on. Yep. So I'll I'll see if I can find somebody. Because, I mean, the podcast is I sound like I'm I sound like I'm blowing my own horn here, but it's it's a pretty global event, this podcast. Alright. Let me see if I can reach out and find somebody that's willing to come on and talk about it. Alright?

Agatha (1:08:11)

Yeah. It'd be great. Like, just to learn a bit more about how the algorithm works and I mean, I've you know, I'm on Facebook, and there's groups, and and people share things, but it is such good information that you put out there around how the different technology works and how you can optimize it and think about things. It would be it would be brilliant for for this one as well. Looks like it's a company out of Switzerland. Like, I know there's huge uptake of it in Europe and The UK, and it's pretty popular here in Australia. So but I think that that's right. I think it's somewhere in Europe.

Scott Benner (1:08:43)

Okay. Well, I'm on their media page. I'll find, I'll find an email address and reach out to somebody. Let's see let's see how far, this this thing, works. Fine. Like, take it out for a ride and see what I got. Well, first of all, listen. You're very thoughtful. I really appreciate the conversation. Cannot tell you enough. Like, what did you do? Go to bed at, 09:00 and then get up at, like, three or something? What'd you do?

Agatha (1:09:05)

Yeah. I did. I think I went to bed at, like, 09:30 or ten, and then, yeah, I was up at three. No. Thank you. I'm I'm so pleased that I got the chance to speak to you. I put out a question on there was a it doesn't exist anymore, but there was a Facebook page of, like, mom's little lawyers. And I thought, these women, they're educated. They'll know, you know, can anyone recommend a good podcast? And yours came up, and and I've I've just been listening since then. And I I've probably emailed you a couple of times in in the last couple of years as well saying thank you. But it's been hugely helpful to us and really, like, supplemented what we've learned with our educators here who I think are good. Like, I think compared to what I hear of being people being told in The US sometimes about how things work. You know, we we left the hospital knowing we had to pre bolus like it was never a question. Even a a little two year old, right, we were pre bolus ing, that kind of thing. But really learning about how insulin works, how food work, how food hits, how it all interacts, like, to work out what my algorithm is doing. Like, I got that from from your podcast.

Scott Benner (1:10:32)

Oh, that's lovely. I I can't tell you how warm that makes me feel to just know that it's been helpful for you. I'm actually when I get off with you, like, I've been talking about on the podcast, but I've been going back and forth about telling people where they can find a calculator on my website that literally just takes your weight and breaks down what your starting settings might be. And then another calculator there that could take those settings and, you know, with a little bit of carb information, protein fat, give you a a reasonable pathway on how to bolus, and it's all there. And I just I I keep going back and forth about whether I wanna, you know, how do I present it, put it out. Like, I've, you know, written disclaimers around that. I'm not worried about that. It's I mean, they're similar calculators you can find anywhere online, but it still gives me pause. And then I saw a woman today online asking, like, she's, desperately, I've gotta reset my kid's settings and I don't know what to do. And I thought I'm gonna get a letter to see that thing and see if it helps her. So at this point, I don't even know how I see myself exactly, but I just feel like I'm drawing the conversations in and you guys are the ones helping everybody. I'm just sort of the I don't know. I've just got the the bullhorn at this point. You know? So it's pretty cool.

Agatha (1:11:42)

Got the experience. Yeah. We're talking to all these people too, you know, to bring it into the other conversations you have. It's it's been really useful, I think, and I think a lot of people get a lot of value out of it. And, hopefully, you keep making these for a long time. Because I know this conversation you and I have had is one that you had very early on in your podcast. Like, I was listening from the beginning. And, you know, people who are going through what we're going through now are thinking about these issues now. And, hopefully I mean, I'm not sure there's necessarily anything useful in this, but, you know, it's everyone's kind of cycling through these same issues just at different points in their lives with their kids, with their teenagers, with you know, as adults, and it it continues to move, and it's useful to hear these fresh conversations about how people are thinking about it.

Scott Benner (1:12:27)

Yeah. Million percent. Don't don't think twice about that because a couple of different things. So even if I've had this conversation two years ago, I've also had 600 since then, and I might interact with you differently, see a different side of it. You might say something differently, bring up a different perspective. And most of the people that heard the one two years ago aren't gonna hear it. Yeah. Those people are either gone and there's new people here and they're they're never gonna hear it. Like, that's the you know, it's not a you know, the podcast isn't a brain download. Right? So, like, you have to be an active listener when things pop up except for the you know, some of the stuff like pro tips and bold beginnings and stuff like that. Like, that people go find, but no one's going to find even a conversation from, like, you know what? Here's how I'll end. You brought something up earlier. The one thing I didn't think to bring up today that I really appreciate and I agree with. You said everybody calls the kids resilient, but you don't like that. I have the same feeling. And I think of it too when people say, oh, you're so brave. Like, I don't think anybody wants to be brave. I think bravery is the thing you're thrust into when you do or you die, so you act brave. But that that's not a decision, you know, that in these scenarios people make, not wantingly most of the time. And so telling people, oh my god. Kids are so resilient. I think it's a weird message. It to me, it falls on the same lines of, you know, god gave your kid diabetes because they knew you could handle. Like, oh, awesome. Thanks. It god. I hope that's not true. But at the same time, I understand the value in telling people kids are brave, kids are resilient, people are resilient. I think you're right, but I I I think it ignores the idea that you're being put through something that you would never in a million years choose to do. And if you had any way out of it, you certainly would get out of it. I don't know if it just rings hollow when people say it sometimes or if it's just the thing that maybe you say to make yourself feel better about what you're witnessing another person go through.

Scott Benner (1:14:47)

I think that about the whole podcast. Like, it's impossible for me to just come out every day into the world and go, oh my god. Here's all the stuff you should be listening to. Like, I can't do that. The only answer is fresh conversations. It's it's the only answer. It's what makes the whole thing going. So when you see someone online go, don't ask that question. It's been asked already. I'm like, woah. You do not fundamentally understand what makes this group valuable or the podcast. You want to continue to say this stuff. It's never gonna be out of style. So, anyway, I appreciate that you like it. Thank you. It's my pleasure. You were so measured in this conversation. Even if you gushed, I wouldn't even know. I can't wait to hear you stop, but I think you're gonna, like, curse for ten minutes and tell me, like, some crazy story. But thank you very much for doing this. I really do appreciate it.

Scott Benner (1:15:42)

I'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 twenty four seven. It works around the clock so you can focus on what matters. To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox. Today's episode is also sponsored by the Contour Next Gen Blood Glucose Meter. kontoornext.com/juicebox. Head over there now. Headquarters, cozyearth.com. Support the podcast. Cozyearth.com. Use the offer code juice box at checkout.

Scott Benner (1:17:23)

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. 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. Join me on Juice Cruise twenty twenty six. It's a week long cruise designed specifically for people and families living with type one diabetes. It's not just a vacation. It's a chance to relax, connect, and feel understood in a way that is hard to find elsewhere. We're gonna sail out of Miami, and the cruise includes stops in CocoCay, San Juan, Saint Kitts, And Nevis aboard the stunning Celebrity Beyond. Your kids can be supervised and there's teen programs so everyone gets time to recharge. There's gonna be zero judgment, real connections, and a whole lot of sun and fun on Juice Cruise twenty twenty six. Please come with me. juiceboxpodcast.com/juicecruise. Suzanne at cruise planners will take care of everything. Wrongwayrecording.com.

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