#1792 Best of Juicebox: School Nurse Mistake
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Lauren shared a harrowing experience where her daughter was overdosed by a school nurse - you won’t believe how much.
Key Takeaways
- Human Error in Schools: A veteran school nurse accidentally administered 150 units of insulin instead of 1.5 units, a 100x overdose caused by misreading a 100-unit syringe as a single unit.
- The Importance of CGMs: Lauren credits having her daughter on a Dexcom and being physically present at the school for saving her daughter's life during the overdose incident.
- DBH Deficiency: Two of Lauren’s children suffer from Dopamine Beta-Hydroxylase deficiency, an ultra-rare genetic condition (roughly 30 known cases) that prevents the body from making adrenaline and norepinephrine, leading to severe hypoglycemia and low blood pressure.
- Vigilance and Intervention: Managing these conditions requires constant monitoring; the children cannot sleep longer than six hours without risking dangerously low blood sugar, as their bodies cannot naturally access stored glucose.
- Medical Advocacy: Lauren’s story highlights the need to push for advanced testing, like whole genome sequencing, when standard tests fail to explain complex medical symptoms.
Resources Mentioned
Introduction and the School Nurse Story
Scott Benner OmniPod, Hello friends, and welcome back to the juicebox podcast. This one is going to curl your brain up wait to hear this. Okay, we are talking to Lauren today. She has a number of children. One of them has type one diabetes, and a crazy story about a school nurse that I will not ruin for you here, but just let me say you're going to audibly gasp when you hear her say what she says. And she's got a couple other kids who have a very rare genetic disease that we're going to talk about later has lots to do with their blood sugar, and it's incredibly interesting as well. My notes say this is my favorite episode that I've ever made. We'll see what you think. Nothing you hear on the juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D drink, ag one.com/juice box. Don't forget to save 40% off of your entire order at cozy earth.com All you have to do is use the offer code juice box at checkout. That's juicebox at checkout to save 40% at cozy earth.com three simple ways to support the podcast, subscribe or follow in your favorite audio app, tell somebody else about the show, use the sponsor links when you have the need. This episode of The juicebox podcast is sponsored by Dexcom. Dexcom.com/juicebox get the brand new Dexcom g7 with my link and get started today. This show is sponsored today by the glucagon that my daughter carries, gvoke hypopen. Find out more at gvoke glucagon.com, forward slash juicebox.
Lauren My name is Lauren. I have three children. My oldest, her name is Lacey, and she's a type one diabetic. She was diagnosed at age four, and she's nine. Now, the story that I want to talk about today is on october 3 of 2022 she was overdosed on insulin by her school nurse. The school nurse gave her 150 units of insulin when she only needed one and a half units to cover her lunch. Yeah, that's talk about that today.
Scott Benner Lauren, I already have questions. You're in luck. Okay, let's let people in on the secret that I tell people before we start. Go ahead and introduce yourself, and then after you do that, I'll ask you a question, but I don't know what that question's going to be then, while you're introducing yourself, I've never said this before. I don't think while you're introducing yourself, I'm like, I hope I come up with something to say, but I have something to say. Okay, good. Let's start with the school nurse, because this is interesting. The person who did this, had they ever given your daughter insulin prior to that, or was it their very first time?
Lauren So yes, so I'll back up a little bit. That morning, I drive my two girls to school and or to the bus stop, and then the bus drives them to school, and when they got out of the car to go to the bus, she had left her phone in the car, and I didn't realize it until I got home, and so as soon as I saw her phone was in the car, I called the school, and I said, you know, I have an appointment. I'll be there as soon as I can to drop the phone off. But, you know, she has a 504 plan. So, you know, we have things to fall back on. Should she not have her phone for her OmniPod? So she had had the OmniPod five at the time, which she still does, and that would just mean that if you need a correction, that, you know, she would get it via either the pen or a syringe or, you know, however it's worded in the 504 plan. And so I called, and I said, I'll be there, so if you want to wait for me, you know, we could just do it via the OmniPod instead of having you give an injection, stuff like that.
Scott Benner And she was like, okay, and you said this to the nurse directly?
Lauren I said it to the nurse directly. Yes, I spoke to the nurse, yep. And this is a 40 year veteran nurse, apparently, who you know has been doing this for 40 years, had worked in the hospital, had worked, you know...
Scott Benner I'm a 52 year veteran of being alive, and I'm an idiot still, so let's see what happens. Wait, but I have a question, though, this this, I feel like you misunderstood my first question, but I want to get you back to your story as soon as I can. But the nurse that did this, not that day, but in all time in history, had that person ever given your daughter insulin in the past, only via the OmniPod five, not via injection or the pen, okay, yeah,
Scott Benner okay, that's all I so they they have practice with your daughter. They know how much they usually get. She usually gets, etc, so Exactly. And so she's also accustomed to dialing the OmniPod up to one point. Five units. Yes,
Lauren okay, go ahead. Yeah. She, she normally does the OmniPod, and was very, was very thorough with it. Knew what she was doing. So I get to school right around noonish, and she had, like, literally just given her insulin. And I looked down at my daughter's arm, and I see that she has two injection marks in her arm. And I asked her, Why do you have two marks on your arm? And she said, Well, the the syringe wouldn't hold enough to just do one, so I have to do two. That's what she said. That's what the nurse told my daughter. And so I immediately, because we're in the front and the nurse's office is just like, a couple steps away. So I open the door to the nurse's office, go in there, and I said, Why does she have two injection marks? The nurse tells me the same thing. I said, let's pull out the syringes. She pulls out the syringes, and she says, this syringe is one unit. And I look at it, and I'm like, like, my heart just drops. And I'm like, this is not one unit. This is 100 units. This is 100 unit syringe. And she goes, No, no, this is one unit. And I'm, I'm praying to God, she's, she's correct. And I sat down for a second. I start Googling, and I'm trying to find something that proves her right. Because I'm like, Please let her be right. And I'm googling, and I knew it was just a matter of time, because her blood sugar was already dropping. Yeah. So anyway, I said, let's look at their syringes one more time. And this nurse goes over to the cabinet, pulls out the syringes, looks at them, and I'm like, Are you sure that's one unit? As I'm looking at the 100 unit mark, she's like, I think I made a mistake. And I'm like, yeah. So at that point, she had been dropping, and I had been giving her gummies and gummies and gummies and trying to, trying to get her to get a little bit higher. But at one at that point that we left, it had said low. It just said low,
Emergency Response
Scott Benner not gonna do it. She needed, I mean, yeah, what was her insulin to carb ratio at that point? One unit covers like 15 carbs. So 100 units would be 1500 carbs, but she got 150 units.
Lauren She got 150 so this nurse gave her not only one full syringe, 100 units. She also gave her another 50 units. On top of that,
Scott Benner 150 times 15. Hold on a second, Lauren, 2250 carbs.
Lauren That sounds about right. Well, that's about right. Oh, sure. Okay, I'm sorry. I have a couple of questions. Now, were you in shock? Is that why you spent time trying to prove her wrong when you knew she was wrong?
Lauren I was completely in shock because I wanted
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Lauren I want her to be right so badly. I was like, There's no way this. Nurses gave her 150 like, you can't wrap your head around that in the moment, you know, how old was your daughter at that point?
Lauren Um, she was seven. How much did she weigh?
Lauren She weighed maybe 60 pounds at most.
Scott Benner And you punched the nurse. How many times in the face before you left the office?
Lauren Trust me, inside is 2020? Okay, yeah,
Scott Benner I would have been like, oh my god, this is my time. I can actually assault another person, and a jury of my peers is going to let me off. Okay, okay, so wait, so there's not enough carbs in all of the land, and she's not going to be able to eat it all anyway, and so do you hit her with glucagon immediately?
Lauren I didn't I, the only thing I, at the moment, thought to do was to rush her to the ER. And while I'm getting her in the car, I'm noticing she's starting to, like, slump over, yeah, and I'm like, Lacy, like. See, wake up, open your eyes. Open your eyes, open it. Like the whole car, right? And I'm like, the house is closer than the hospital, so I rush to my house, and I get on the phone with her endo and the nurse, and I let them know what's going on, and they walk me through the whole glucagon thing, because I get to my house extremely quickly, and I give her the glucagon, she's still, you know, out of it, and I rushed to the hospital. And when we get to the hospital, thankfully, she's able to walk inside by a miracle, like looking back on it, I don't know how she was able to walk inside, but she was able to walk inside. They took her blood sugar, and it was like 79 at that point, I think the glucagon had started working, yeah, and however, you know, flowing through, yeah, it was, it was dropping, dropping, dropping. All night at the hospital, she was on a, like a glucose strip. I bet it was still a drop, like I was. Obviously we're not used to that.
Questioning the Oversight
Scott Benner I have thought you were going to tell me you went into snakebite mode, cut her arm and sucked the insulin out of her, because, honestly, it would have been one of the things that went through my head. So I might have stuck the syringe back in and pulled and see if I could have got some of it back again. By the way, not not medical advice, because I have no idea if that would work or not. But um, I mean, so you're only three years into diabetes at that point, right? Yeah, okay, because Lauren, between you and I as now we have distance. You made a couple of tactical errors along the way. I did absolutely, yeah. Okay, so I gave your daughter 150 units of of insulin, you should have hit her with a glutagon in that moment. 100%
Lauren I completely agree. And I think it was just the fact that I didn't want to believe that, that that's what just happened, like I could not wrap my head around that that had just happened.
Scott Benner Are you a kind person in general? Am I a what person? Kind person I'm trying to figure out, like, I'm trying to juxtapose your reaction to my brain, and I can't find any sense in it, because I would have been shooting glucagon with one hand and choking that fcking lady with my other one. Like, yeah, and so like, I mean, listen, people can make a mistake. God bless. But 150 and how about how other kids come through there with diabetes, right? Had she ever, ever drawn up that much insulin in her life?
Lauren I have the same questions, damn, right? You do go ahead, yeah, yeah. So at that point, and even to this day, Lacey is only one at that school with type one diabetes, and obviously that's for a reason. I'm sure that there were other diabetics I had gone through there and were like, you know, screw this place.
Scott Benner she shot so much liquid into her. If I was her, I would have stopped and thought, like, could that little pot even hold all this like, like, Do you know what I mean? Like, it's just such a I'm telling you. Can I ask you, what did, what did she do for a living after they fired her, I have no idea. I she was fired, right? If you take insulin or so final ureas, you are at risk for your blood sugar going too low. You need a safety net when it matters most, be ready with G vo hypo pen. My daughter carries gevok hypopen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar in people with diabetes ages two and above that. I trust low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, gevoc hypopne can be administered in two simple steps, even by yourself in certain situations. Show those around you where you store GEVO kypo pen and how to use it. They need to know how to use jivo kypo pen before an emergency situation happens. Learn more about why GEVO kypo Pen is in Arden's diabetes toolkit at jivok, glucagon.com/juicebox, juicebox gvoke shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma, or if you have a tumor in your pancreas called an insulinoma, visit gvoke, glucagon.com/risk. For safety information. She was fired, right? Um,
Lauren yeah, and only because I went in there and I had to demand her be fired. I said, I'm not trusting this lady with my daughter. And at that point, you know, she was still treating children with their other there was no type one diabetics except for my daughter. However, she was treating other children with medications. And you know, the they wanted to keep that nurse on, they did everything they could to keep that nurse on. And I had to go to two different meetings and fight for my daughter to get that nurse out of that school. And if my daughter did not like that school as much as she did, obviously she would be out like I would have pulled her immediately.
Scott Benner For nothing. But if your kid dies. Is that manslaughter maybe, like, I don't even know how that works, but like, she would have gone to prison. Yeah, yeah, so, and they couldn't, by the way, in my perfect world, she would have gone to prison. I don't really know the law, but in my world, firing her is like, like, the least thing,
Lauren yep, that's the least they should do. Yep, trust me, I know it's so infuriating. And when, when the principal came in to talk to me, and she obviously doesn't know anything about diabetes, even though I have had meetings upon meetings with her about it, she didn't understand the gravity of the situation. She just didn't until I had to pretty much yell at her, and I'm not somebody who raises their voice honestly, I do not yell at people, but this, this whole situation, was just like a nightmare, and it's like, probably the one thing that you know you're worried about happening that's kind of like an irrational fear, but it actually came to light unless
Scott Benner it happens to you, and that is less than irrational all of a sudden, yeah,
Lauren I guess. So. Okay, so,
The Pre-Bolus Comparison and Car Ride Story
Scott Benner so listen, here's an important note for people. You know, when people are like, well, I don't want to pre bolus because I'm afraid my blood sugar will drop too fast. Your daughter pre bolus 150 carbs. You didn't even give her a Snickers bar out the door. And how long until they put her on a knife? Well, how long until you hit her with a glucagon? First I did.
Lauren I did get, I did give her a bunch of she had so many gummies. I know, I know.
Scott Benner So she's eating gummy bears. You hit her with glucagon. That that, but my point is, is that bridges the gap, because insulin does not work immediately when you put it in now 150 units and a 70 pound little kid, you know, you're gonna get some quick motion, but like so you had time to hit there with the glue gun. Then you put her right back in the car and drove the hospital. Yeah?
Lauren Well, I did the glue gun in the car. I ran inside with her in the car with the line. And I, yeah, yeah. Interesting. I was shaking like a leaf.
Scott Benner Hey, listen, one time when Arden was little, before I knew what I was doing, her blood sugar was falling, like, really quickly, and she got, like, super, like, combative, and she's like, I'm like, oh, drink the juice. And she's like, I want ice cream. And I was like, well, we don't have ice cream. Drink juice. And we were in the car, and so I drove her home, and she's like, why are we here? And I'm like, for ice cream. She goes, that's not the high ice cream I want. Oh my gosh. So now I'm speeding to a like, a soft serve place. I'm not lying. I get pulled over by a cop, and in my little ass town with four cops, they're never anywhere when you need them and like so I'm flying down this road, fair enough. He pulls me over. I pull over. I say, I look at him. I go. My daughter has type one diabetes. She has too much insulin. I'm trying to get her to food. You got to let me go. And he goes after I run your license. And I'm like, No. I'm like, what? Okay, here. I said, can I get out of the car and test her blood sugar? I'm testing her blood sugar. It's in like the 40s, I think at that point, right? And he gives me my license back. I looked at him, I said, I'm gonna be speeding again. Please don't pull me over. And I got in the car and I took off. You know, I got a ticket in the mail. Are you kidding me? Motherfucker sent me a ticket. I had to go fighting. I did get out of the ticket, in case you're wondering. Wow, but yeah, he said he mailed me a ticket. I don't know who that person is, but if he's listening, you so. But by the way, anybody could be listening because a woman just messaged my brother at their job and said, Hey, are you the ROB that edits the juicebox podcast? Are you kidding me? Oh, my God. My brother goes, A, how do you know about that? And B, my brother's like, I've never told anybody you have a podcast. He's like, it's embarrassing. I was like, I know. And he's like, No, I'm not. And she goes, Oh, and she, you know, she, they started talking about it. But anyway, my brother's name is my other brother's name is Rob. I have two brothers. And so anyway, where are we at? Oh, okay, you're in the hospital, and they're dumping an IV into your kid with dextrose in it. For how long? Just to combat this, 150 units,
Lauren I want to say eight hours, eight hours, yeah,
Scott Benner do you send the bill to the school?
Lauren Well, it was wiped clean somehow, the I did, we did try to to sue her, and all the lawyers said, Oh, well, because she didn't die, you pretty much don't really have a case. And
Scott Benner if you could go hold a pillow over that kid's head, I think we're gonna be rich, like, well, listen, I mean, she's gotta be protect. I don't know nothing about nothing, but physicians and doctors have to be protected by some good samaritan clause, which I understand. I don't feel like you could wouldn't have been my inclination to Sewer, but I definitely would have wanted to see her lose her job.
Lauren Yeah, yeah. No, definitely. I definitely made that happen at least. And I guess the state had picked up the case, and I'm not sure where it's at at this point, but somebody at the state looked at the looked at everything, and said, something needs to happen. Because this wasn't just like a little oversight, you know what I mean? Like, no, no,
Scott Benner it's not just a little oversight. Also, Lauren, it's a willful decision. Like, it's so much liquid. Like, do you know what I mean? Like, so much? Yes, it really is. She's a nurse, so the measurement of units is universal through all liquid medications, right? Did she not go this doesn't seem like one and a half like Do you have any explanation for it? Well,
Lauren when I was at that point in the nurse's office, she had said that she thought that it was a TB syringe, which I'm not exactly sure what that means. I'm assuming that a TB syringe is smaller, but even still, what I cannot fathom drawing up that much insulin and injecting a small child with it. Here's
Scott Benner another idea, Lauren, you know insulin is dangerous, right? She had to have known that much, right? Absolutely, if you find yourself in a position where you're saying to yourself, I'm not certain if this is the correct amount. Do you not stop? You just go get let's see what happens now, exactly,
Lauren yeah, that's what it seems like happened though, you know, it's like, you know, it really does. Listen, there's
Scott Benner no chance she was drinking her high or something like that, right? Because that would make sense. Well, that would at least makes sense. You know what I mean? I mean, yeah, little the mothers help her. You know what I'm saying? That might help. Okay, not to say she was obviously, I have no idea who we're talking about. I'm just saying it seems like you'd have to be impaired, if you've been a nurse for 40 years to make that
Lauren absolutely I agree. I completely agree. Okay, yeah, and she was, like she was an older lady. I'm not gonna say any names, but you know, she was an older lady who seems like she knew what she was doing, which is why I trusted her.
Scott Benner My mom was an older lady. I wouldn't have trusted you with anything if I'm being perfectly honest with him, and I'm 10 years I'm 10 years away from you not being able to trust me. In case you're wondering. Well anyway, that's terrible. I would she contrite? Did she apologize? Or Yes, really,
Lauren she did apologize. What she said after she said, I think I made a mistake. I'm so sorry. That was the first time. And then she just kept saying she was sorry, and she did call me later that night to check on her, and, you know, it's so like, it's so infuriating that she did what she did, and at the same time, she's calling me and apologizing, and you know, she was crying on the on the phone, a lovely person, you know, yeah, and,
Lauren but It's also in the same at the same time. It's like, I think I would have put if I were in that position, you know, however she she continued going to the school and treating children and kind of acting like nothing happened. mommy,
Scott Benner my stomach hurts. How come I drank a quart of Tylenol at school today? Yeah,
Lauren exactly. But like, who knows? You know? Like, nobody knew at that point. And if I was not there to bring her her phone, she would have just sent her right back to class after the 150 units, and she would have been gone. Let's be
Scott Benner clear, you getting there when you did absolutely saved your daughter's life. Yeah, she would have been just so dead, like, like, there's no, exactly, no nothing. Would have got her back once the insulin was rolling, and
Lauren they would have to figure out, you know, what had happened. And the nurse would have been like, oh, I don't know, you know.
Scott Benner Well, they would have seen the vampire bite on her arm and maybe figured it out. Like, maybe listen, not for nothing, but not that it would have been her responsibility to but your daughter didn't do the like, Hey, I've never gotten two of these before in my life.
Lauren I believe she did question her like, why are you giving two? And the explanation was the same as given to me. That doesn't all fit. It didn't all fit. Yeah, exactly. Hello.
Scott Benner Can I continue to, like, sprinkle common sense on this? Because the manufacturers of insulin needles would obviously manufacture needles that don't hold enough insulin for someone to use.
Lauren Literally labeled units. It literally says units on it. I'm
Scott Benner only 52 I can't see without my glasses, so I don't know that part I don't understand, okay, but, but like, but I'm talking like bigger ideas, right? I'm in a room with a computer monitor, a computer monitor company wouldn't make a monitor with the image on the back of it, because I need to see it if people are regularly giving them. Insulin? Wouldn't the needles be big enough to hold the insulin? Like, that's exactly. That's a thing. Your common sense should go, hey, hold up a second. Like, you know what I mean? And I don't know if it's age or comments, I don't know what. I don't know the person, obviously. And I'm not trying to say that I do. I'm just saying big picture is a lot of confusing things in this story. Yes, you know what I mean, there is,
Scott Benner did it have any psychological impacts on you, on me? I mean, have trouble leaving her with people or anything like that after that?
Lauren Absolutely. I mean, it's always kind of been that way, and I think this just kind of made it worse, because I guess I live in a small town where there's not many people diagnosed with diabetes. And I literally know one other family who has type one, and that's pretty much it leaving her before this happened with somebody I really didn't do unless it was like my mom, who I had trained for months before, you know, sure. And so even after this, you know, I still, she's still extremely sheltered. And, you know, I'd
Dopamine Beta Hydroxylase (DBH) Deficiency
Scott Benner be wrapping that kid with bubble wrap and armor. I'd be like, listen, well, I have three children with medical conditions, and my other two, it happens to be a genetic condition, and they are actually hypoglycemic. So I have a hyperglycemic and I have a hypoglycemic. Wait your kid. You have two younger children whose blood sugars are always lower. Excuse me, you said hypo. I miss surgery. Okay, all right, so they're Oh, no kidding. What is that? Is that a like a diagnosable thing?
Lauren Yes, it's, it's a long name. It's called dopamine beta hydroxylase deficiency, and only 30 people in the world have ever been diagnosed with it. And it's where your body has a complete deficiency of adrenaline and norepinephrine, 3030, yes, I'm assuming you've had your husband's tubes tied, or your tubes tied, and your husband's got like, yeah, you're not gonna
Lauren make it as soon as we found out with genetic is, yeah, we were done. Scott Benner 27:04 What a pairing you two are, right? Do you get along really well? At least we do. We are a great match. It's just we both happen to have a recessive variant that only a handful of people have. And, you know, that's crazy. That's just kind of how my life kind of goes. I feel like everything happens for a reason, and I'm kind of like the guinea pig in life, Lauren. Scott Benner 27:33 There are so many people in the world this. Odds of you matching up with that boy are so slim. That's crazy, telling
Lauren you, I'm telling you, they they said it was astronomical that we found each other and we're not related. Scott Benner 27:48 Did they test? Did they go, Uh oh, they did. Yeah, this lady might have married her second cousin. Hold on, a second. You imagine? Can I imagine? I mean, after this story, sure. Why not, right? Jesus Christ, did your daughter? Sorry. No, I love it. So I guess are there other people in the town married to relations? No, okay, good. It's
Lauren just the chances are higher if you're related of having the same that's what I meant by that. Scott Benner 28:23 No, no, I knew what you meant by it. I was just thinking, like, it might be more common to marry somebody you're related to than somebody who you have, like, like, these two genetic like, matches with. It's really just incredible. Yeah, it would be, but, yeah, okay, how do you help the other two kids? What's the the treatment or the help for them, pretty
Lauren much just give sugar. Um, it's they get hypoglycemic, especially when they're sick, so they have to, like, have sugar or carbs every like two to three hours when they're sick, during a regular day, they can't sleep longer than six ish hours, because that's when they really start to drop? How far will they drop until they're dead? Honestly? Seriously? Yeah, my son, he's two now, but June 25 of last year, I went to go wake him up, and his Dexcom said no signal. And it hadn't said no signal for that long. It had been, maybe been like 30 minutes, yeah, um, went to go wake him up, and he was limp. Checked his blood sugar, and it was like 26 I didn't know it at the time. However, he was having silent seizures, which I had, no I didn't know anything about sure, you know, called the hospital and everything. And when he came to he started having, I guess more you know you could see the seizure. So the doctor had said he had been having silent ones, and now he's having to where you can see them. I'm not really sure what that's called, but he was like biting his tongue and stuff. So, yeah, he they because they don't, they cannot get their stored glucagon. Yeah, naturally, they can't access it, because you need adrenaline to do that. That's why it's so dangerous.
Scott Benner So this is a vigilance thing. You have to be constantly at this. Yeah,
Lauren I have all three on dexcoms, yeah, it's yeah, it's a lot, yeah, it's a lot. How old are all three of them? Again, they're nine and
Lauren nine, six and two. Oh, my God. So what's the plan? You're just gonna, like, go out for cigarettes and not come back. What do you what do you think they're doing? You're gonna be an old lady when you're 20 more years. People are gonna be like, That's Lauren. What is she 80? She's like, No, she's 45 like, Oh, no kidding. It's her kids. Your kids are dragging her down. Like she actually kept them alive. It's insane. Like, seriously, though, like, not to be a bummer, but you did come on and talk about the lady trying to, like, off your kid. Yeah, it's already in your head, right? I'm going to send them away. They're going to fall asleep and they're not going to wake up.
Lauren Absolutely. I don't even think about sending them away. To be completely honest with you, honestly, my younger two would not be here if I was not completely like because with their condition, and I didn't know this till afterwards, of course, but with their condition in the third trimester, your body or you need norepinephrine in order to continue the third trimester. And so I did have two stillbirths in the third trimester, after I had my oldest, which now we know is due to this condition. So like every single aspect, like all three of my children, would be dead if, if there was no intervention, like Lacey with a type one, and then my youngest two with this condition. They had to have emergency C section in order to be, you know, alive. Tell me you've had five pregnancies, two of them ended in the third trimester with a stillbirth. Yes, yes. Jesus, are you okay?
Lauren Seriously, I'm not, but I'm hanging in there. I'm not,
Scott Benner but I'm hanging in there. That's the most honest goddamn answer anybody's ever given to that question? No, Scott, actually, I'm not okay. I mean, would you be but no, I wouldn't be. That's why I asked. That's why I asked. So therapy? Do you see an actual psychiatrist? Does one follow you around all day? Like, how do you deal you drink? Are you a drinker? Lauren, are you putting them away? No. What's going on.
Lauren I think my kids kind of keep me so busy that it's like, you know, I don't really have time to even think about other things. But, like, honestly, no, I did do therapy for for a while, and, you know, that's why I'm here today. Okay, your husband is he rich, handsome, got a really big like, what's the deal? Like, is something is making you happy? Or are you looking at him thinking I could have picked someone else? Like,
Lauren he's a very good guy. He is extremely smart. No, he, I've known him since middle school. And, yeah, we, we're just, you know, like I said, I feel like everything happens for a reason. So I feel like something has, has to be at the end of this, you know, like, Lauren's down to Lauren. How old are you? How old are you? I'm 31 you're 31 and you're down to, there better be a Jesus at the end. And he better put me, yeah, there better be like, I better go live in a nice, like, maybe a park setting. I would like a castle. I'm telling you. God, damn, 31 years old and you're like, you better be can gift at the end of this. Oh, my god, yeah, my No, I Why am I doing this? How did the kids I'm sweating, I'm laughing so hard, it's ridiculous. All I can picture is you walking around muttering to yourself in the quiet moments.
Lauren You must have a camera. Oh no. I just know people. Learn, and I understand implications of things the kids, did they know how screwed up things are, or do they live pretty normally. They don't have any kind of, like, other issues other than, you know, shutting off. Yeah. I mean, as as far as you know, cognitively, they are completely, quote, unquote, normal, but they have to have a Dexcom, and they complain about that. They understand, and I've tried to explain as much as I could. So what's their understanding of the eating thing? Because you said sugar specifically, but could it be any carbohydrates?
Lauren Yeah, actually, like, carbs are better for, like, when they're sleeping. Yeah, yeah. It takes longer, like starchy stuff takes longer to, you know, break down. But is this having an impact on their weight? Is to the point where it's not healthy amount of calories? Or do you have that figured out? Yes, they have, like, a sort of a little bit of a faster metabolism. And as far as the research goes. There's not, there's not a lot of research at all, but the but what I can find is their metal metabolism seems to be a little bit faster than the average, and that's why they're able to keep up there. Because if you think of stimulants, stimulants stimulate, you know, norepinephrine and adrenaline in your body. And because they lack that, there has to be some kind of other mechanism, you know, coming into play. Otherwise they would just be obese. You know, how did you figure this out in such a small town? Did you have to go to a children's hospital? Or were they actually able to figure it out there,
Lauren after multiple so many hospital visits, they referred us to a pediatric geneticist. We live in Florida. So this was in Orlando that they were able to figure out what was going on after they did after we were cleared from genetic, you know, things, I asked to go further, and I say, Could we just do a, like, a whole, you know, Genome Sequencing thing? And the geneticist was like, I don't think we're going to find anything, but, you know, I can try to push insurance to see if we'll cover it. And I was like, please. And because I did that, you know, she she called me back, and she was like, You will not believe what I found. And she was in shock, I bet I want to look it up. I want to know how to spell it. I want to know how to spell it again. But first I opened up a Google page, and I typed in what is. Then I was going to ask you to spell the the thing, sure, yeah. Before you do, let's look at what other people have been googling. What is CTE? I'm going to blame the Tom Brady roast for that. Okay, okay. What is Hoda? Is she not like the person from, like a TV show?
Lauren Oh, yeah, she's from, yeah, that morning show, right? Yeah. What is my IP address? Oh, what is Doge, D, O, G, E, that's a, like, Bitcoin kind of a thing. I right, yeah. What is Ramadan? What is today. You're telling you're telling me that the way some people figure out the date is to write into Google, what is today. What is today. I want to say right now, if you do that, stop listening to the podcast. I don't want you as a listener. Okay, what is the be giving insulin? If that's what you're Googling, yeah, if you're Googling what is today? You shouldn't be giving people medication. There's a calendar. Also, there's 1000 better ways to phrase that. What is the weather? What is the weather today? Also, I don't agree with that. I like looking outside if you wanna know what the weather is, what is mewing and what is a solar eclipse? Interesting. Do you know what mewing is? Well, so
Lauren I have a nine year old, so I think that I don't, I don't 100% No, but it has something to do with like, this newer generation. I'm clicking like it's the only it's the only one I don't know. I was so proud to know that today is Thursday, the 16th Hold on a second mewing is an internet craze that promises to change the shape of your jaw line and fix other problems. That's not what I thought it was Lauren's like I thought it was a sexual position form of oral posture training purported to improve jaw and facial structure. It was named after Mike and John mu the controversial British, British orthodontist who created the technique as part of a practice called orthotropics. Does mewing actually reshape your jaw? I don't care if it does or not. I want to be clear, but I do want to say this, Lauren and I know you might be disappointed your episode is 100% called what is mewing. Oh God, all right now spell this thing that your poor two kids have. Okay,
Lauren so dopamine, D, O, P, A, M, I, N, E, next word is beta B, E, T, A, hydroxyl, hydroxylase, h, y, D, R, O, X, Y, L, A, S, E, deficiency, also known as dopamine, beta mono, oxygen, yes, is an enzyme that in Humans, is encoded by the D BH gene, dopamine, beta hydroxylas catalyzes the conversion of dopamine to noreparin norepinephrine. The three substrates of the enzyme are dopamine, vitamin C and oxygen. How about that? And your kids just don't have that. It's a deficiency, right?
Lauren Yeah, it's a complete deficiency. So they do not create DBH at all, which means they do not create the norepinephrine or the adrenaline. Does this sound? Right? Is a condition that affects the autonomic nervous system, which controls involuntary body processes such as the regulation of blood pressure, blood temperature. I'm going to guess blood glucose is in this list too, huh? Yeah. When they become around the teenage years is when they have a little bit of it now, but the orthostatic hypotension, which means when you stand up, your blood pressure drops to the point where you can faint. They have it a little bit now, but it's just going to get progressively worse. There's a medication that's called droxy dopa, which acts as kind of like a synthetic precursor, so it acts as DBH, but not naturally. So that helps with the orthostatic hypotension. But is it just so few people have it that there's no medication for it, or is that there's no way to impact it with a medication?
Lauren Yeah, the drugsy dopa does help. It's never my daughter is actually the first child to be on it. So that's kind of scary. And, yeah, I'm serious, yeah, the dosage that she's on right now is like 40 milligrams twice a day, but adults are known to have like 600 milligrams three or four times a day, so the dosage is like, all over the place and holy, you know, obviously it's not a perfect science. So, yeah, this is terrible. Like, I'm sorry to say it like that to you, but like, yeah, sudden drop in blood pressure, severe when getting out of bed in the morning during hot weather. As a person gets older, deficiency. Experience extreme fatigue during exercise due to the problems maintaining a normal blood pressure, droopy eyelids, nasal congestion. Males may experience retrograde ejaculation. Now, for those of you who don't know what that means, the discharge of semen goes backwards into the bladder. Less common that I mean, less common features include unusually large range of joint movement, like hypermobility and muscle weakness. Holy Christ, yeah, yeah, you're not okay. No, no, yeah, you answered honestly. I got that. Okay, good, yeah, no. Do you cry a lot? I'd cry a lot.
Lauren I used to not as much, is kind of like the normal, I guess I've kind of transitioned into this being a little bit more, you know, Lawrence, like I said something, I have resting sad face exactly well, how do you keep up the thing you're supposed to do as a parent around your kids, the like, every little thing gonna be like, how do you do all that for them? I try to compare them to, like, you know, worse situations. Honestly, have you seen Frankenstein again? Well, like, like to be completely serious with my daughters that type one diagnosis, we didn't know what the heck it was like. I had only heard of type one, you know, a handful of times, and I still wasn't 100% sure. So when she had the symptoms of, like, losing weight, like she was so skinny and she was vomiting, and the two things that popped up when I would go online was type one diabetes and cancer. And so I'd, I'd say, there's so much worse that you can have, you know, she complains about the pod, or she complains about, you know, my, my other kids will complain about the Dexcom, and I'll be like, there's so much worse. Like, we're lucky that, you know, it's not worse. And obviously I do mean that, but you know, it is hard, because they do have it pretty rough. So yeah, just trying to see the the light. Well, listen again, to be serious, you have to, first of all, yeah, like, and yeah, it does give you, I mean, this is not a thing you would have asked for, but you have more perspective at 31 years old than most people are going to gather, gather in five lifetimes and that, and that will be valuable. Like, like, moving through, you know, for your kids and for you and for your husband, everybody else, I guess that's really the move though. Like, how do you not say to them, like, at least it's not that and to try to make them feel a little better. So, I mean, I guess there's no I have to ask you, like, if you could give one of these away, the diabetes, or what your other two have? Like, there's no, like, pause, even, right? Like, diabetes is way easier or no?
Lauren Well, they are both very hard in their own ways. But I think the way I think of it in my mind is my youngest two, like, they shouldn't be here, you know, according to nature, because we had to, like, intervene. So during my pregnancy, I had to be seen every single day at the hospital to measure what's called the umbilical artery, because it's very technical and complicated, but they get reverse umbilical flow in their umbilical cord, and when that happens, you have to deliver that day like so they shouldn't be here. You know, it's hard for me to think which one I would take away, because they're both. I know that that my younger two are going to progress, and I don't know what the future holds. You know what I mean? So I have such a difficult question that for the first time, and I'm not kidding you, I stopped myself from asking a question, and I don't. Well, I don't know if I can say it out loud or not. Please ask it. I'm less worried about you and more worried about what people are going to think about me. Oh, gosh. So the two stillbirths happened prior to these children being born, right?
Lauren Yeah, my oldest, who does not have that condition, however, does have type one diabetes. Was my first, and then after my first, the two that we lost, okay, we're in the middle, and then you find out this thing, when, like, when do you know what's happening during the second or during the, what I guess would be your fourth pregnancy, or after they're both born? When do you learn about the the issue,
Lauren um, I learned when I was eight weeks pregnant with my fifth child, so with my youngest now. So I was already pregnant when we found out it was genetic. Because we did get cleared by the geneticist after we did the initial test, okay, and she had said to me, you know, there it's so unlikely that this is genetic. Like she didn't even want to do the in depth, you know, whole genome sequencing, because she she was like, we're not going to find anything. Well, there's another person who let you down. so Exactly, yeah, but so when you know that is there a moment in that fifth pregnancy where you think, I'll let this go naturally to its conclusion and not intervene, or Absolutely
Lauren not. You never know, knowing what I knew like, because I had to give birth to pretty much full term, you know, infants who had passed, and I knew something, so I did something, you know what I mean, like, I would never, yeah, yeah, if it, it would have turned out horribly if I didn't intervene. So, you know, and obviously I was asked the question, do you want to terminate? Because when we I did an amniocentesis, when I found out it was genetic, and they did find out that he did have it. So, you know, I was given that option at the time because I guess it was still legal, but I don't think I'd be able to live with myself, because everything that's happened in my life was not technically my fault, you know what I mean. And so I didn't want to cause something, you know, Oh, that's interesting. You didn't want to be, you didn't want to be the decider on it, yeah, yeah, yeah. I mean, like, everything that's happened has not been something that I've chosen, you know what I mean. And so I understand if I were to choose, yeah, nothing, no, I completely understand. Yeah. I mean, it just, it bears asking, right? Like, no, yeah, you're not gonna have other children. Absolutely not. Yeah, no, you and your husband don't even sleep in the same room anymore, right? Just, just in case.
Lauren No, they removed my tubes. Did you like, say I want to watch you throw them in the trash.
Lauren Yeah, pretty much. And they the doctor still questioned me, like, Are you sure? What if this one doesn't survive? And I'm like, Okay, we're gonna take them out no matter what, am I sure? Are you out of your mind? Like, yeah, they don't understand the content. Like, like, you have more of an understanding just talking to you, and I can tell, than talking to any other medical professional. You know what I mean? Like? Because I feel like they just they don't. I don't listen, my brain works very simply. You just told me your kids can't sleep more than six hours without it being dangerous for them. One of the great joys of life is like going to bed late on a Friday night after working a full week and waking up whenever the hell you wake up on Saturday. Your kids are never going to do that. And that point is, is that they're going to be 18 and they're going to go to college, and then they're going to drink or something, and then you're it's going to happen like you're literally going to be on the phone going, someone's got to wake her up and give her something to eat like you don't need, like that's and that's not a thing you're going to forget about. And it's doesn't matter how old you get, it doesn't matter how long this goes on for. You're going to think about this every goddamn day for the rest of your life, and that's not fair to you. It's not fair to them, and it's brave to deal with it, but to not understand it from a third party perspective. Why you might not want to do it is predict. I mean, that's just silly. Like, yeah, please. Oh, my God, it is. Yeah. No, yeah, yeah. Seriously, what the hell? Like, who would not understand that? Like, and, you know, the same thing with the diabetes stuff. When people say, like, look, I'm all for sitting around and speaking high mindedly about things and doing some like, gazitas and like, you know, being whimsical, and saying, oh, there's a ton of stuff that I've learned because my daughter has diabetes, and I am probably a smarter person and a stronger person and more resilient, and all that stuff because my kid has type one. It doesn't matter. I'd give it away. In a half a second, I'd go back to not understanding things and not having perspective and being less intelligent and all the other I'd give away the podcast. It wouldn't matter to me. Can all go I'd give it away for anything. And that's why that conversations makes people upset. When people say, hey, what's something you've learned from diabetes? And you'll hear. From people who say, Oh, like, you know, I'm, you know, I think I'm actually overall healthier because I pay more attention to my body. That's a very valid statement. And then somebody else will come in and be like, you're, you're out of your mind, like, there's nothing I wouldn't give away to get rid of this. And so I'm with you, like, I see how hard it's also why I decided to be jokey with you, because I didn't think we could make it through an hour of talking about this, because I'd be, I'd be like, half out the window crying right now, if we treated this too seriously. So I got the space for that. It's getting towards the end of the week, you know what I mean, Lauren, like, I'm trying to get the Saturday, you know? Yeah, I can't be walking around all day thinking about your kids not being able to sleep. To sleep more than six hours, and your other daughter, your other daughter, surviving a hit. I mean, Jesus Christ, it's like one thing after another. There's no way you guys are gonna have other bad stuff. Either you've used it all up already or you're just a target for it. I can't decide what's gonna happen. Your house is Never No No. You don't live in like a tornado part of the country or something.
Lauren No, but we get hurricanes. We're in Florida, so the hell out of there right now. If I was you, you're clearly gonna find your ass on a raft floating out to sea one day. Oh, no, I knew it. Hopefully we'll win the lottery, because we're just that, you know that are, that's our odds. I feel like, I swear, I always make that joke with people like you have these incredibly rare things that never works out with the lottery. Like, you know what I mean? Like, I know, right? Terrible, really, terrible. Oh, are you at least, really pretty Lauren, or something like that. Like, is there any like, No, I might not even have that go over something I could feel less. Are you six feet tall? You're like, a runway model? No, no, no. I mean something I can, like, at least go, oh, well, she got that. Are you driving, like, one of those Range Rover trucks or something I wish. No, I'm just normal. This is terrible. Do you find money on the ground ever? Oh, you know what I have before go ahead, enough to buy something or not. When I was living somewhere else, I actually found $100 in like, random bills all over the street. All right, I would like for that to happen to you every five hours. Okay, thank you. I think that's the way to go. Like, you know, like, when I have stuff bad, I always think, like, at least if I was tall, this would be acceptable.
Lauren Yeah, if I was a supermodel, then maybe I can handle it better. I would prefer if my teeth were a little straighter. I feel like I could live with this easier. And like, you know, like, seriously, like, why? I don't know, yeah, it just some people are so goddamn handsome. Just like, that's gotta make up for something, doesn't it, right, money or something like, anything to just like, move this offset it a little bit back to the center, a little for me, for God's sakes, I know all the way on the edge. Like, come on now, listen your kids, they don't end up ejaculating to their bladder. Can they have children? Or they're not. I know he's like two. Sorry. No, they can't have well, they,
Lauren I mean, there's not enough studies, but when they're taking that medication, apparently they, there's a possibility that they may be able to reproduce. So I don't know. I won't, I won't advise any of my children really to reproduce, because it scares the crap out of me. And so even your oldest that has type one, like, does she have the gene?
Lauren She's a carrier. And so, like, she doesn't actually have the condition so she carries it. So the odds of her finding somebody who is also a carrier is like slim to none. But, you know, I the, you know, guess what? Anything could happen now, so, you know, unless she meets her third cousin somewhere, oh, God, I like how that shocks you more than the other thing that's fantastic. Do you like, put the all the word out to your entire family about this?
Lauren I've tried, you know, it's just talking anything medical. Anybody tell me. I mean, you know how, if you try to explain diabetes to anybody on the street, and they're just kind of like, nodding their head and pretending like they're understanding, I feel like that's how the conversation goes. Yep, it's upsetting on a different isn't it upsetting on a different level, it is. Yeah. And my brother, who is also a carry this condition, is having a child, and we're getting his girlfriend tested to make sure that this child does not have the condition, or, I guess we're testing the mother to make sure she's not also a carrier. Jesus, so I'd never not ejaculate into a condom if I was in your family, even if I was by myself. What do you think of that? Like this ain't getting on anybody. Dang. Course, Yeah, no kidding. Thank God you came on the podcast somehow oddly, Lauren, this is the most fun I've had making the podcast. Thank you. Thank you for having me. Oh my god, are you and crazy. Thank you for coming on and shame on you for not doing it sooner.
Lauren I tried. That's my fault. Yeah, fair enough. Although I did, I did record an episode. I found this great doctor, this endocrinologist in Texas, Blevins, and he's going to come on a number of times to talk about GLP medications. Okay? And so we're on yesterday, and we're recording together, and it's a, he's a nice man, and it's not, it's very it's serious, but it's not so dry. And at one point I brought up this like scenario where this person started using a GLP and lost five pounds in the first 36 hours. And I was like, could that be water weight? Like, black and forth, and he goes, I would imagine it would be a water weight or, like, maybe they experienced diarrhea or something like that, and like, we're talking about it. And I said, Yeah, but in fairness, this person's a very clean eater. They have PCOS, right? They're very clean eater, and they're gaining weight uncontrollably, very clean eater, exercising constantly, uncontrollably, gaining weight. This poor girl in her 20s, right? And I said, you know, never had a five pound loss for any reason. And they're in during this entire thing, they injected that GLP and lost five pounds. I was like, it's, you know, and then I think I said, No, whether that's because they exploded out there or not, is neither here nor there, in my opinion. And he kiss kind of giggled just a little bit. And I was like, Oh, I like this guy because, because, as I said it, I thought that's not what I should have said. But oddly enough, exploded from their is less creepy to me than the word diarrhea. Yeah, I agree. So I just rolled with it. I think I'm going to receive a Nobel Peace Prize one day for the conversation I had with you. I would like that to happen. I can I be serious for a second and at the same time say something really nice about myself? I think that this thing that your kids are going through, right and this experience you had with your daughter, seriously, they're two really important conversations, like blended together here with us today. Yes, these are not things that people would sit and listen to. It's too goddamn depressing. It's too obtuse. Nobody's going to have this happen to them. You know what? I mean, like, like, but it's, it's valuable to hear about. And I think maybe the biggest value is to hear, like, your reaction to it more than anything else as a podcast. Like, like, seriously, because there are plenty of people, plenty of people who would just leave. They'd just be, like, these kids are a problem. I gotta go, yeah. Like, like, right. And that's not what you're doing, and you've got their best interest at heart. You're working every day at it. It's obviously a 24/7 situation. You're aware that it's going to have detrimental effects on your health, and you don't care. You're going to take care of them still. Yes, yeah, that's the story to me. The joking around and the laughing part is so that I don't cry while we're talking about it, in case you're wondering, and I don't need you crying, because if you cry, I'm gonna cry. And then, you know what everybody's gonna do with their podcast player. They're gonna go dis depressing and they're gonna shut it off. Instead, we laugh the whole time, and yes, we have a cartoonish vision of me shooting glucagon with one hand and choking a one in their 60s with my other hand. So yeah, oh, my God. I honestly think I might ended up in jail.
Lauren I know, right, yeah, someone come in here and give my kid glued gun while I murder this person. Like, just, what in the hell? You didn't say anything. Mean, no, oh, I would have been so incredibly mean. I'm disappointed in myself saying that I did. But, yeah, I don't. I'm not really that kind of person. I guess. I don't know if I I was just so, like, out of it, like I was in such shock. I think I, you know, it's just, I mean, listen, maybe I wouldn't, truth be told, it's possible I wouldn't, but in my heart, I kind of hope I don't think I'm that person. To be perfectly honest with you, people now are probably laughing going, oh my god, Scott, you're 100% that person. But I think I'd be shooting glucagon while yelling, you dumb mother and like, I think I would have said such horrible things to her, and I probably would have apologized afterwards, but I don't know how you stopped yourself. You were in shock, obviously,
Lauren yeah, I was just like, not, I don't know. I was not present in my head. I guess I sometimes, like, you just have to, like, remove your brain. I don't know. Well, no, it sounds, it sounds like you, you. It took you a second, but then once you did it. You pulled it together and you started taking steps, right? Yeah, that's true. I would have been disappointed in myself, but I definitely would have cursed a lot and said is probably the most hurtful things I could think of. Yeah, I'll see a third Yeah. About that, maybe, but, going back to the other conversation with my other two, I just want to mention that there's something called pots. I don't know if you heard of its Yeah. So, yeah, you know, they don't really know a whole lot about it. And this condition, the dbhd, of main beta hydroxyl, place efficiency, actually kind of mirrors it, in a way. And the researchers think that the dbhd may be a little bit more common, you know, then we know of because it's just so not really tested for so, you know, if anybody does have pots likes and you know, symptoms and medications are not helping them, and also, if they've been like, born, low birth weight or prematurely, then I would look, you know, I encourage you to look into that diagnosis, because, You know, there's potential for other people to be diagnosed with it as well. It's just not, you know, it's not researched and studied enough interesting.
Scott Benner That's very interesting. I was speaking with a person who has pots recently, who also has a heart issue, like a medication for I wish I was paying enough attention at the time to remember the name of it, or I would share it with you, but it makes me wonder, like, yeah, POTS is one of those things. They're like, that's that ultra step. I can't I'm saying the word wrong when you stand up and you get very dizzy,
Lauren exactly, yeah, orthostatic hypotension type syndromes, yeah, yeah. Interesting. All right, Lauren, is there anything that we haven't talked about today that you want to No, I believe we covered a lot of it. Yeah, I think that was, that was really good. Mm, hmm, yeah, okay, anything you want to say, you want to curse once, or anything like that, let it out a little bit sometimes. But yeah, I like how you blended the at the end there with, though you were, like, you were very strong with the mother. And then you, you kind of got a little, like, like, a little, like, a criminally there with the part that was nice, yeah, like, I felt like you could have stolen my car. We're done some good voiceover work for children's cartoons over 18 years old. Thank you. Yeah, somebody needs to hire me now. Somebody needs to hire you. Listen to me. God bless you. You should find $100 on the ground every five hours. As I've just said, Someone should call you immediately and give you a job where you make $90 million a year. And some researchers should end up with, uh, whatever your kids have. So maybe they pay attention to it for five seconds. But for real, though, by the way, seriously, yeah, 30 people,
Lauren 30? Yep, yeah. Online, you can read it says between 25 and 30. So my kids are two of them. Holy shit. All right, yeah, listen, you're a saint. What do you think of that? If there is a heaven on a bumper sticker, if there's a heaven. You don't get into it. Something went wrong. Okay, you murdered 43 nuns, if that happens. Okay, holy hell, man, I don't know what. Hey, listen, I didn't want to ask because I was afraid I'd get a sad story. But is your husband? Like? Is Is he okay?
Lauren Yeah, he's okay. Ask each other, are you okay? Like, every so often, so we just have continuous, like, rusting bitch face, I guess, oh, are you kidding? 1,000,000% don't let the kids say it, though you gotta figure that out. Yeah, Jesus. You know, In what world, what family does the kid with type one run around going, Whoo, dodged a bullet. No kidding, I got lucky. Exactly you too. I can't believe you two met. Did you at least meet in a small town, or was it like a way at college or something like that? No,
Lauren it wasn't a small town. Yeah, we were in middle school, and that's where we met initially, and then we we ended up getting together later on, when we were in our early 20s. So like, sixth, seventh grade, yeah, yeah, we were sixth grade, sixth grade, yeah, did you like, make, like, hold hands and stuff when you're in sixth grade?
Lauren No, no, but we knew of each other, you know, yeah, yeah. He's like, I'm gonna get that lady pregnant a bunch of times one day, and it's gonna be all kinds of horror that comes afterwards. Also, children are a blessing, etc, and absolutely, absolutely, well, listen, I gotta tell you something. I have my last question for you. I know how you're gonna answer it, so it's almost silly to ask it, but I think it but I think it makes a good point, if you could get in a time machine and not have these kids, would you do that?
Lauren I'm telling you, I think about this question daily. Go ahead, I really do. I can't say with 100% certainty, but I don't know if I could go through it all again, to be honest with you, I really don't if you went back. Back in time and you knew what was going to happen, you could stop yourself, right?
Lauren Absolutely, yeah, it would be a completely different narrative if I knew what I know now, right? Absolutely, because you wouldn't know the kids. You just know the like, what like? Because I if I gave you a magic wand, you wouldn't make the kids disappear, right? Right? She's like, Yeah, no, of course not. What? Take away their take away the shitty part. Did I sound convincing when I said that? No, but, but seriously, I understand what you mean. You go back in time. You don't know the people, you just know the situation. Yeah, and you and so listen, I gotta be honest with you, I would do the same thing. Yeah, yeah. 100% now, if I took you back in time and showed you a picture of the three kids and had all the memories of loving them, and then said it, what happens then?
Lauren I didn't know any better than Yeah, go for it. You know what I mean? Like, it's rough. If I could go back to 14 and tell her everything that went down by the time you're 30. Like, there's a little boy in sixth grade. He's gonna smile at you when he does, kick him in the balls as hard as you can and yell no, and then uppercut palm into his nose. Exactly. We might want to believe your name. All right, I need more people on the podcast being this honest, uh, send me an email. Okay. All right. All right, Lauren, let's let you go before one of us has a stroke from laughing and then or more people judge us for being terrible. People, whatever is going on right now. I know, listen, that's on them. Okay, never heard your tits been through a ringer. Your whole show gone through a couple of times. I think they pushed me through the whole thing barn. We would be friends if we were near each other, we really would be sure, no, we would definitely be friends. I would never, ever get you pregnant because you you were very dangerous, as far as I can tell. But we could definitely friends. Yes, oh my gosh, you must be the lady in the neighborhood that other ladies point to and go, Oh, don't worry. At least that didn't happen to us. Like you're like, oh, there's some out there that are still absolutely Lauren just said there are people in my town I wouldn't trade places with. That hurts if you're hearing it. No kidding. Are you a stand up comedian in your in your private life? What do you do for a living?
Lauren No, I can't. I don't really have time to do anything. It's like your job. Is that, right? But no, yeah, so let me ask one last question. Have you always had, like, a in my estimation, you have a terrific sense of humor. Okay? I think sense of humor is measured by your ability to make fun of things that are clearly not funny, but you can say something funny about them. I mean, obviously nothing that has happened to you is fun, right? And so did you have this before all this? Have you always been like this? The sense of humor part,
Lauren I think, a little bit, and I think I also had to kind of acquire it, because it's like, kind of like a coping mechanism, I guess, because if you know, if you don't laugh, you'll cry, yeah, you know, it is a little bit of a coping thing for you, but, yeah, yeah, no, I've always, I guess, yeah, but it is mostly coping. and maybe I don't usually do this while I'm being recorded, but Have I done anything that's made you uncomfortable? No, okay, not at all. Okay, because if you have been you could just tell me, I'll just delete it. You know that? Right? No, okay, oh yeah, of course, because there are going to be some people who don't have a good sense of humor, gonna be like that lady just took that for an hour and blah, blah, blah, like I hear you old hens out there. Don't you worry. I want to say this. I'm gonna say something, because there's no place I'd ever say this again on any episode when I was growing up. Like, between me and my friends, our measure of if you had a good sense of humor basically boiled down to, could you laugh at a very well crafted dead baby joke? Because that there's nothing funny about that. So like, if somebody could actually craft a piece of humor that would take something that horrible and still, your brain could go, Oh, I see why that's funny, huh? Like, like, and laugh like that. To me, is a pure sense of humor, because there are obviously plenty of things in the world that are not funny. It's not the thing you're laughing at. It's it's actually the structure of it, right? It's the Yeah, it's the conversation around it that makes it, that makes you laugh. It doesn't make you laugh at the horrible thing and it just makes you be able to laugh at the situation. Absolutely,
Lauren yeah. I mean, could you imagine being that serious about like, I don't think I'd be here if I didn't have some kind of, you know, way of thinking otherwise, yeah, I think you'd be on six different pharmaceutical medications, right? Absolutely, yeah, totally, yeah. You have to, you have to. Well, you have to be able to laugh at yourself and laugh at the situation regardless of what it is, because if you don't, then you're just going to be miserable. You know, I think that attitude gives your children a very good chance at finding that for themselves too. So I applaud that, honestly. Okay, yeah, all right, well, that was weird to get serious at the end, but, all right, you want to curse anymore, Lauren, because you were really great at it okay? Because, I mean, if anybody needs to scream into a pillow, I feel like it might be you, so I'm gonna let you go. Yeah. All right. Hold on one second. All right. Thank you for having me a huge thank you to one of today's sponsors, gvoke glucagon. Find out more about gvokopen at gvoke glucagon.com, forward slash, juicebox. You spell that, G, V, O, k, e, g, l, U, C, A, G, o, n.com, forward slash juicebox. This episode of The juicebox podcast was sponsored by Dexcom. The Dexcom g7 is what you need. It's what my daughter wears, and you can learn more about it at dexcom.com/juicebox. Links in the show notes links at juicebox podcast.com, the diabetes variables series from the juicebox podcast goes over all the little things that affect your diabetes that you might not think about, travel and exercise to hydration and even trampolines. Juicebox podcast.com, go up in the menu and click on diabetes variables. Alright, kids, we're done. We're at the end. Just do me one last favor, if you can, if you could please, if you have the need or the desire for something that one of the sponsors is providing, please use my links or my offer codes. They help the show so much, and that means me, you're helping me to make this podcast every day. You're helping me to support the private Facebook group do all the things that I'm doing, I'm not asking you to buy something you don't want or something you don't need, but if you're going to get one of these items, use my links or my offer codes. They help me a ton. Thank you so much for listening and for supporting. I really do genuinely appreciate it. I'll be back very soon with another episode, the episode you just heard was professionally edited by wrong way recording. Wrongwayrecording.com you.
Please support the sponsors
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#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
Introduction and Juice Cruise 2026
Scott BennerHello, 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 BennerNothing 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 BennerAlright, 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.
JenniferYeah. No. That's great. Bothering. Oh my gosh.
Scott BennerExcited about, bothered by, something you wish would change. May go ahead, Jenny. Be the king of the diabetes world.
JenniferNo. 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 BennerWhich ones are are they available with now?
JenniferSo the Libre three plus and then the Eversense three sixty five.
Scott BennerOkay. Do you think DexCom will jump on, do you think?
JenniferYou 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 BennerIs the current build, a basal adjustment for higher blood sugars?
JenniferIt 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 BennerYeah. 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.
JenniferNo. 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 BennerI 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 BennerYou 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.
JenniferThat's awesome.
Scott BennerYeah. 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.
JenniferThat'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 BennerThe 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
JenniferOh, 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 BennerRight. 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.
JenniferRight. 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 BennerI 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 BennerToday'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 BennerI 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"
JenniferWell, 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 BennerI, 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.
Jennifer100%. 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 BennerYeah. 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 BennerAnd 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."
JenniferThe 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 BennerHelp 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 BennerI think it was in the sixties, wasn't it?
JenniferSee, 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 BennerWhy 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.
JenniferWell, 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 BennerYeah. Why isn't that backed up somewhere? You're gonna make me start over again? Are you kidding me?
JenniferAnd 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 BennerIs 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?
JenniferAnd 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 BennerI 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?
JenniferHow 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 BennerI'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 BennerBut 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.
JenniferAnd 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 BennerAnd 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
JenniferI'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 BennerMaybe 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 BennerAnd 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
JenniferWhere'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 BennerMedtronicdiabetes.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?
JenniferI 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 BennerHow 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—
JenniferI 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.
JenniferI 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 BennerI 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 BennerBut 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 BennerJenny, 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 BennerI 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 BennerThe 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 BennerThat 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 BennerHonestly, 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 BennerI 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 BennerYeah. 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 BennerI 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 BennerI 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
JenniferThere 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.
JenniferHow 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 BennerToday'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 BennerWould 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.
Please support the sponsors
The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!
#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
Introduction and Sponsors
Scott BennerFriends, we're all back together for the next episode of the Juice Box podcast. Welcome.
AgathaWell, 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 BennerCheck 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
AgathaWell, 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 BennerI really appreciate you doing this. Thank you. We do have to tell people what time it is for you.
AgathaI thought we could avoid this. It's early. It's 03:35 in the morning.
Scott BennerThree why did you wanna avoid—don't want people to think you're crazy?
AgathaYeah. 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 BennerI hate to say it, but we could have done it later if you wanted to.
AgathaOh god. Don't.
Scott BennerSorry.
AgathaI don't wanna hear that.
Scott BennerOkay. Okay. This was the only time I had available. There. Does that make you feel better?
AgathaOh, good. Yeah. Yeah. Yeah. Yeah.
Scott BennerYou have, how many kids?
AgathaI'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 BennerOh, 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.
AgathaI 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 BennerVery 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?
AgathaShe was two, nearly three. So April 2023. So we'll be coming up onto three years soon.
Scott BennerOkay. How did you find out? Did someone tell you, or did you figure it out?
AgathaI 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 BennerWow. 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?
AgathaI 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
AgathaAnd 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 BennerIs 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?
AgathaYeah. 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 BennerHow 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?
AgathaI 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 BennerYeah. But do you work full time, part time, or not at all?
AgathaI 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 BennerOkay. 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?
AgathaWe'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 BennerThey 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?
AgathaNo. 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 BennerIt's nice. Here, we say that, but then treat you very poorly for doing it.
AgathaYeah. 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 BennerWhen 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?
AgathaI 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 BennerChanges 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?
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AgathaI 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 BennerYeah. 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.
AgathaYeah. And how do you stop that? Like, that's hard.
Scott BennerYeah. 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 BennerSo what kind of technology did you get at diagnosis, and has any of that changed?
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AgathaWe 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 BennerBecause the pump's been doing it the whole time for you. Does the government pay for it? How does that work there?
AgathaOh, 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 BennerOkay. We all aspire to be Agatha when she said, "I didn't pay for it, I don't think."
AgathaOh, 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 BennerSo 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?
AgathaI 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 BennerAnd do you know how much basal she gets a day? About?
AgathaTotal 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 BennerAre you the main caregiver for the diabetes?
AgathaI 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 BennerIn 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?
AgathaIt'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 BennerBecause you're more proactive?
AgathaYeah. 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 BennerI 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?
AgathaIt'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 BennerI 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."
AgathaYeah. 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 BennerI 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?
AgathaShe's nineteen kilos. (Approx. 41 lbs).
Scott BennerDo you think she has any kind of a honeymoon going on still?
AgathaI 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 BennerI'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.
AgathaWe'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 BennerI 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
AgathaI 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 BennerWell, 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.
AgathaI'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 BennerOh, 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.
AgathaThank you. It's been a pleasure. Thanks, Scott.
Scott BennerI'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.
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