#1396 Camp Dumpster Fire
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Kim's 13 year old daughter had a crappy diabetes camp experience - to say the least.
Camp Chaos: A 13-year-old’s diabetes mismanaged, leading to a crisis.
Protocol Failures: Alarming missteps in care and communication.
Parent’s Warning: Lessons on trust and oversight at diabetes camps.
Advocacy Needed: Ensuring safe and effective diabetes care.
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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.
Scott Benner 0:00
Hello friends. It's 2025 Welcome back to the Juicebox Podcast.
We're going to start out 2025 with a bit of a scary story. Kim has a 13 year old daughter who has type one diabetes. She went to diabetes camp, and it went very poorly in about 1000 different ways. I mean, this is a hell of a story. Whittier, please don't forget that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. 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 Juicebox at checkout. That's Juicebox at checkout to save 40% at cozy earth.com. I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast, a healthy once over Juicebox Podcast type one diabetes. I really think it will help you. It will at least give you community. You'll be able to kind of lurk around, see what people are talking about, pick up some tips and tricks. Maybe you can ask a question or offer some help. Juicebox Podcast, type one diabetes on Facebook.
This episode of The Juicebox Podcast is sponsored by touched by type one. This is my favorite diabetes organization, and I'm just asking you to check them out at touch by type one.org on Facebook and Instagram. Today's episode of The Juicebox Podcast is sponsored by Omnipod and the Omnipod five learn more and get started today at omnipod.com/juice box. The episode you're listening to is sponsored by us Med, usmed.com/ med.com/juice, box, or call, 888-721-1514, you can get your diabetes testing supplies the same way we do from us. Med,
Kim 2:12
I'm Kim, and I'm a mom of a 13 year old type one diabetic.
Scott Benner 2:17
How long has your child had type one been
Kim 2:20
a little over a year. She was diagnosed in April of last year. Oh gosh, very, very, very
Scott Benner 2:26
recently. Any other type one in your extended family, in your immediate family, or anything like that? None. No. Okay, so diagnosis kind of came out of nowhere. You saw it coming. What was that process
Kim 2:40
like? It kind of came out of nowhere. She just started having, like, extreme thirst, and it was prolonged. And I kind of thought in the back of my head that this may have been a possibility. We took her to see the pediatrician, and then right away she checked her sugar, and was like, she's in a medical crisis. You need to go to the hospital, and then it kind of went from there with a diagnosis. So it's fairly quick, okay,
Scott Benner 3:05
why did you think excessive thirst meant diabetes? Did you Google it? Or how did you come to that conclusion?
Kim 3:12
No, I've worked in the medical field a majority of my adult life. She was just constantly going to the bathroom with that thirst. And it just vaguely crossed my mind. I kind of thought maybe she had, like a urinary tract infection at first, but that floated back there because I was, you know, familiar with the signs and symptoms of it.
Scott Benner 3:35
Okay, so she's diagnosed, and it's all pretty straightforward, right? You get some technology, you start learning about it. You progress along. Is that, you know, not a crazy story there just kind of went the way it goes. Yeah,
Kim 3:48
nothing really crazy. Thankfully, she's never been in DKA or anything. So I guess it's been as smooth of a transition as it could possibly be. Okay?
Scott Benner 4:00
So we're going to jump right into your the reason that you're on today, at what point in this process do you think, or does she say, or however it comes up, you'll tell me, I'd like to go to diabetes camp.
Kim 4:10
Well, we switched care from one major health organization to another, and when we went over to this new hospital, new endo this particular place, I think they're really involved in the diabetes camp. So upon our first visit there, the dietitian came in and she talked a little bit about diabetes and diet, and her biggest thing was, you know, kind of like rallying my daughter up about this camp and how great it would be. And then, anytime we went to an appointment there for endo care, you know, it always was brought up in conversation from whoever we were seeing there, like, Hey, are you going to camp? You know, you should really go to camp. You should think about it. So we looked into it. Thought it would be a good idea. Idea for her to connect with other kids and get that exposure. She really didn't know any other kids with diabetes. So that's kind of how we got started.
Scott Benner 5:11
Are you in hindsight telling me that it felt like a sales pitch, or just that a lot of people thought this would be a great thing for your daughter? I'm
Kim 5:19
not sure. I kind of wonder that myself, at the place we were prior, it honestly was never brought up about camp, or none of the medical professionals there talked about camp or asked about it. So you're
Scott Benner 5:36
saying every person that you saw from this, this new organization you were going to for medical care. Like they all said it.
Kim 5:42
Well, they all asked if she was going to go to camp. So it was pretty much brought up by everyone that we talked to there at some point. Okay, well,
Scott Benner 5:51
I'm going to do my best to be down the middle in this conversation, but that's interesting. She gets kind of ginned up about it. It would be a really good idea if you went, you'll meet people. And then you thought, well, she doesn't know anybody else with diabetes. Maybe this is a really good idea, right, right? How long was the camp for a week? I don't know how I want to be clear. I've never sent my kid to diabetes any camp, actually. But how long was the camp?
Kim 6:13
So this camp, you drop off on a Sunday and you pick up on a Friday.
Scott Benner 6:17
Okay? Sunday night, Monday night, Tuesday night, Wednesday night, Thursday night, five nights, gotcha. And what kind of technology at that con, at that time going to camp? What kind of technology was your daughter
Kim 6:27
using? She was on the Omnipod five, and Dexcom is what she went with.
Scott Benner 6:33
Okay, and how long had she been on Omnipod five before camp? Do you remember
Kim 6:38
she switched over to pump in October of last year. Okay,
Scott Benner 6:44
so after about seven months of diabetes, yeah, okay. So then October, November, December, when was camp? What month camp was at the end of June, okay, so she'd been using that stuff for a while, then right comfortable with it working the way you expected all that stuff was okay, yes, okay, all right, so when you drop her off, it was you, I imagine, or you and your husband, or whoever, whatever, and like you got you guys are dropping her off, and what's your level of comfort that day? Well,
Kim 7:16
I was nervous pulling up because she had never been there, and I didn't know what to expect. It was kind of awkward. I guess you're brought into a building with just a ton of people and kids checking in everywhere. And they have different stations that you go to before you I guess drop them off there officially. Just check in, they do some screenings. One of the stations, they take your phone. You're not supposed to bring your phone or anything, unless you're using it for your medical devices. Once you get to this table, they start switching passwords. They take your phone from you. They take your receivers from you, if that's what you're using. At one point, we were told we had to go downstairs and talk to their med techs. So I was kind of thinking like maybe nurses or something. So we get down there at the last step, and there are two teenagers that are going over the insulin settings and saying how we're going to leave our phones there and then to head to camp like half a mile across the property. So at that point, I was kind of leery, because we were leaving her phone there and her pump controller and then going across the property, and I had asked how long it would be before the devices got over there, and they didn't really give me an answer. So I thought that was kind of strange. I want
Scott Benner 8:48
to go back for a second. They changed passwords on what
Kim 8:51
on everything on the phones, and I believe she was using a CDM at that point. They don't let your kids have their controllers or their phones, and they change the password on them. I guess if they feel that your child may get access from these devices, from their counselor, that they're not able to get into them,
Scott Benner 9:14
how old are they at this we said she right. How old is she at this point? She's 1313, so they take her, so you come she's got her phone, which you're using for, what, anything diabetes related at that point or
Kim 9:26
no, yes, she was using it for her Dexcom, okay? And then
Scott Benner 9:30
that Dexcom shares, and then that's how you see her, yeah,
Kim 9:34
setting. So I forgot that part too. They also disconnect you from sharing. Like, if you're connected to anyone, they go through your Dexcom and they shut off the sharing. So I wasn't able to see anything other family members that we have on there. It was all turned off. Okay?
Scott Benner 9:52
So the share gets shut off on the phone, the password to the phone is changed, and then the PDM. You turn your PDM on, which they don't call it a PDM anymore. What is it's a diabetes. What does Omnipod call it now? A controller. Right? When you open up that controller, it asks you for a code to get into it, and that's changed as well, so she can't get into her Omnipod controller or her cell phone, and her phone isn't sharing Dexcom any longer. I have all that understood. You've probably heard me talk about us Med and how simple it is to reorder with us med using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up. They don't just randomly call you, but I'm set up to be called if I don't respond to the email, because I don't trust myself 100% so one time I didn't respond to the email, and the phone rings the house. It's like, ring. You know how it works. And I picked it up. I was like, hello, and it was just the recording was like, us, med doesn't actually sound like that, but you know what I'm saying. It said, Hey, you're I don't remember exactly what it says, but it's basically like, Hey, your order's ready. You want us to send it, push this button if you want us to send it, or if you'd like to wait, I think it lets you put it off, like a couple of weeks, or push this button for that, that's pretty much it. I push the button to send it and a few days later, box right at my door. That's it. Us. Med.com/juice, box, or call 888-721-1514, get your free benefits checked now and get started with us. Med, Dexcom, Omnipod, tandem, freestyle, they've got all your favorites, even that new eyelet pump. Check them out now at usmed.com/juice box, or by calling 888-721-1514, there are links in the show notes of your podcast player and links at Juicebox Podcast com, to us Med and all of the sponsors. My daughter is 20 years old. I can't even believe it. She was diagnosed with type one diabetes when she was two, and she put her first insulin pump on when she was four. That insulin pump was an Omnipod, and it's been an Omnipod every day since then. That's 16 straight years of wearing Omnipod. It's been a friend to us, and I believe it could be a friend to you. Omnipod.com/juicebox, whether you get the Omnipod dash or the automation that's available with the Omnipod five, you are going to enjoy tubeless insulin pumping. You're going to be able to jump into a shower or a pool or a bath tub without taking off your pump. That's right, you will not have to disconnect to bathe with an Omnipod. You also won't have to disconnect to play a sport or to do anything where a regular tube pump has to come off. Arden has been wearing an Omnipod for 16 years. She knows other people that wear different pumps, and she has never once asked the question, should I be trying a different pump? Never once, omnipod.com/juicebox, get a pump that you'll be happy with forever. Yes, okay, all right, and then you guys go for a joint across the property with no idea about when that stuff's going to be back to you. And now nobody can see her blood sugar. Is that right? That's right. Does she have a meter with her? She
Kim 13:03
did not. They asked that you don't bring any glucose meters, ketone strips. There's a couple other items they supplied it all. I'm not sure if those were on the counselors in the bunk house or not. Okay,
Scott Benner 13:20
all right. So there, it's possible that somebody could have checked her blood sugar if they needed to. Okay, so you go for this, you go to the other side of the property, and then what happens? We
Kim 13:28
just helped her unpack and say our goodbyes, and we take off from there
Scott Benner 13:33
at that moment, where are you at in your heart? Are you like, why don't we all get back in the car and leave? Or are you like, this is going to be great. I
Kim 13:43
was a little panicked because it started to set in, like I'm not going to be able to monitor that or really know what's going on, or speak to her if something's going on, but I just kept trying to reassure myself that this was like, the right thing to do for her, her her experience and being able to connect with the children there. Okay,
Scott Benner 14:05
so you're having what I would consider to be a reasonable response to the situation. You're not in a panic. You're just like, hey, this is weird. We usually know what her blood sugar is, you know, I'm worried about what happens if it falls or it's high for too long, and I'm not going to be able to see it. That's just where you're at. But this thing is set up to take care of this. I'm gonna believe it's gonna take care of this. Is that about, right? That's right. Okay, all right. Where she at? Do you know, or have you subsequently spoken to her about it, like, how did she feel in that moment? She was nervous. Did she say why?
Kim 14:37
She never, really, I've never heard a 13 year
Scott Benner 14:41
old expand on anything, but okay, that's how was about, right? How was school? It was fine, okay, okay, so she's nervous. You're nervous you leave. How far are you from the camp? Like, how far is your home? We're about two hours away from there, all right, so that's pretty far. So you're two hours away. Today, and now she's just, you're disconnected. So what you think is, I'm showing back up on Friday. That's the next time I want to see her, hear from her,
Kim 15:08
yeah, pretty much just hoping for the best. They continuously tell you about how everyone's, like, extensively trained and experienced, and they have all this wonderful medical staff there, and they kind of sell it to you, is being the parent, you get a break, and this is the only time you're not going to have to worry about managing your child's diabetes because they're under like, the best care possible.
Scott Benner 15:32
Okay, did you have to pay for this? By the way, there
Kim 15:35
is a fee, but it fluctuates for everyone. You can get grants. It can be income based, so it varies for everybody,
Scott Benner 15:44
okay, but you something came out of your pocket, or that, or if you couldn't get a grant, it would have, yeah, so
Kim 15:49
if you don't get a grant, or your income exceeds a certain level, then you pay, I think it's like $1,600 for them to stay there for those days, okay,
Scott Benner 15:58
so like $350 a day, like an expensive hotel, okay? But hey, what the heck? Because kids gonna have fun. They're gonna meet all kinds of people diabetes, and somebody's gonna be taking care of her all the time. Now, why are you on the podcast, then? Because I'm assuming you just picked her up on Friday, and she's like, this was terrific. Thank you. But that's not what happened. What happens in those five nights in between?
Kim 16:19
Oh, so she only made it to Tuesday, or actually, it would have on Wednesday morning when we got there. So I was sleeping, and that Tuesday, about 1030 at night, my phone rang, and I automatically went into a panic, because 1030 at night, right? So people only call when there's something wrong. And I just knew, you know, hey, something must be wrong with her. Answered the phone. It's a counselor from the camp, and he starts off by saying that my daughter had been crying for multiple days, or since she's been there. They tried a ton of different things to persuade her to stay at camp, but she was very adamant on making contact with me. The thing is, is they don't allow your children to contact you if they're asking. So there's no phone they can use. They can't go up to a counselor and say, Hey, can I use your phone I want to call mom. Or if they have an issue, they really discourage it. So there really is no contact there, unless something very extreme, I think, yeah,
Scott Benner 17:23
so in this phone call, you're being led to believe that your daughter has been distraught for three days.
Kim 17:28
Yes, and he's just trying to persuade me the whole time that he doesn't believe there's anything wrong with her. He mentions how she was sent to medical staff on a few occasions and they found nothing wrong with her. He stated that my daughter was making con comments to them about running her blood sugar too high and it was making her sick. And he would combat that with acknowledging that her sugar was ran over 300 for a while in anticipation of water activities that didn't end up taking place due to bad weather. He also said she believed she was doing what she was to try to be able to talk to me, to go home.
Scott Benner 18:10
So the place you're at that's telling you, don't worry. We know what we're doing. We all we do is all the time. Their plan for water activities was to let all the kids blood sugar go up to 300 and then let them go do the water activity. That was
Kim 18:23
the play. That's the impression that I got from what was said to me. Okay,
Scott Benner 18:27
but in her situation, specifically, they let her blood sugar rise, and then the thing that they thought was going to take care of the blood sugar, this water activity, which, by the way, a lot of kids go in the pool with 85 blood sugars, come out with 85 blood sugars. But that's okay. It just doesn't happen. It's not like, oh gosh, no, it's raining. We're not going to go to the lake or whatever. Everyone come on over here. We're going to Bolus and get your blood sugar down and take care of this. So she's feeling sick because of her elevated blood sugar,
Kim 18:55
right? And I also forgot to mention, in the beginning of this, they change the insulin settings when you check in. So this factors into this as well, like they don't run you at the settings that you have when you check in. Okay? And they say they do this because of the activity, so you're not getting as much insulin as you or your provider has set to treat your sugar. So
Scott Benner 19:24
sight unseen, you're saying without feeling out everybody's situation, I'm assuming there's a lot of kids there, but everybody just gets less insulin. Yes, Ah, okay, yeah. Now you're so new to diabetes at this point, are you thinking, this is what it is, or are you like, No, this is definitely a problem. Are you? Are you not really freaked out till you hear she's been crying for this? Because I have to be honest, I'm a parent. I heard my kid was crying for three days. I'd be like, there's where I'd be angry. So what happened to you?
Kim 19:56
So i i. I automatically knew something was up. I knew that something wasn't right. She's never acted like that. She's been away from home. I knew that if this is what was going on, that there was a problem here. He even said on the phone that he couldn't put her on the phone or let her talk to me, because it would open the door for other kids who wanted to make contact with their families, or something like that.
Scott Benner 20:28
We got a lot of descenders here. If they find out your kids on the phone, everybody's
Kim 20:35
okay. It was like a big deal, so I still couldn't talk to her at that point, but I just told him it would be, if this is how it's been, it would be in everybody's best interest for me to come and get her first thing in the morning. He asked if, if he should let her know that I was coming to get her. And I said, Yes, please inform her that I'll be there so she can have her things ready, right? Yeah,
Scott Benner 20:59
that. How'd you stop yourself from leaving then at 1030 so
Kim 21:03
I can't see to drive at night, okay? And it's two hours away. It was pitch black out. Scott,
Scott Benner 21:09
my terrible vision is what slowed me down. Okay, I
Kim 21:13
woke up so early and then sat around until, like right before it cracked daylight, and then I hit the road, like I got there earlier than probably they wake the kids up there. Yeah. Okay,
Scott Benner 21:26
so you collect her, and I want to know then, like, what's the the hindsight, tell you here, like the conversations, like, what is I guess, I want to know, like, when she gets in the car, what's the first thing she says to you?
Kim 21:38
Oh, I knew it was bad when I pulled up there and she came walking in, and her eyes were puffy. She didn't look well. She was frazzled. They didn't tell her I was coming. Apparently, they showed up to the camp in the morning, and when I arrived there, they sent someone over to retrieve her from the camp and rushed her along and said, Get your stuff together. Your mom's waiting for you, and she was crying. Yeah,
Scott Benner 22:04
they didn't want, they didn't want a whole evening of her being able to tell people I got my mom to come because they're thinking it's going to cause some sort of upheaval with the other kids, or some of the other kids at least. Yeah,
Kim 22:15
okay, possibly. So she didn't really say anything. I asked her what was wrong, and she didn't want to really speak in front of them. So they during the checkout process, they have to email you the EMR because they track like their sugars and how much insulin was given, all that. So we're standing there trying to get things switched over, and they said that upon checkout they would switch all the settings over, change the passwords back on the devices, and they couldn't figure that out. They didn't even know what the settings were prior when she showed up after they changed them. She's
Scott Benner 22:50
an Omnipod five too, right? Yeah, you know that most of the settings in Omnipod five, if you change them, you're not actually changing the automation settings. You're changing settings if you're in manual. Did they put her in manual? I'm not sure. Okay, yeah. I mean, geez, at this point, what do you know is even happening? Okay, so I'm sorry they can't. Were they able to get her phone open?
Kim 23:13
They struggled getting her phone open. They ended up figuring out the password these, I guess counselors they were they really didn't know how to manage these devices. And one made a comment how he uses some other pump or device, and he didn't know what to do. And I'm just sitting there thinking, Oh my gosh. Like, please tell me he's not handling any other child's controllers for anything. But anyways, they email this EMR over, and I pull it up, and I'm looking at it and going over her stuff, and then I'm like, okay, boom, right here you have it documented that she's been vomiting since she's been here. Her sugars have been probably around 330 she's complained multiple times about not feeling well. She's had ketones. They never told me that on the phone. When they called, they made it seem like she was doing whatever she could to come home because she didn't want to be there and she wanted to speak to me. They didn't tell me that she was sick. She really was sick.
Scott Benner 24:16
Yeah, I go over this again for me, and you started to say, but this is not commonplace for your kid to, like, throw a fit or anything like that.
Kim 24:25
No, no, she was relatively excited to be there. Her account was she was so sick because she wasn't used to having her sugar ran that high over the course of the time that she was there. She was physically ill, like I said, she was vomiting, she had stomach pain. She didn't partake in any of the activities because she said she was so out of whack with the changes to her insulin, and then not getting enough insulin with the food she was eating and not doing any activity. And she says that they. They ask you before each activity if you're going to do it, and they make dosing decisions based on if you're going to partake in that activity. Well, she didn't, and she told them that because she was so unwell that she didn't partake in anything while there
Scott Benner 25:12
I see, I see, and you feel like, I mean, did you ever get to speak with medical staff directly? I
Kim 25:19
didn't. It was very strange. There was nobody in this building that they brought me in there, just these two, like I said, counselors, I think they were,
Scott Benner 25:29
Yeah, but you're saying their teens, the counselors, these two
Kim 25:32
were adults. Okay, yeah, so it's just
Scott Benner 25:38
baffling. So you get control of her devices again. I'm assuming you work on her blood sugar get her feeling better. Like, how long does it take her to kind of snap back and be herself again?
Kim 25:48
After we got her home and her settings changed and pushed water and did all that stuff, it took her a couple days to feel better, but she was pretty out of it. Coming Home, I would say for a couple days afterwards, did they offer you your money back? Nothing was said about that. I really didn't care about any of it. I just wanted them to address
Scott Benner 26:11
Yeah, well, I was gonna say, I don't imagine you cared about that on that level, but I'm just saying, like, that seems like a first step in a situation like this, like, Hey, we're sorry. Take this, you rally and get everything together, and then you go back to them, I imagine, to complain or get answers or something like that. Yeah.
Kim 26:28
I also forgot, when she left this camp, she because you have to supply the Dexcom, the OmniPods, all that they didn't give us all of her medical supplies back. They were missing. Nobody could account for them. We only got a couple of the items back, and when I had questioned them, they just looked at me and shrugged, and ended up giving us, like, two dexcoms to replace the ones that were missing out of her
Scott Benner 26:51
stuff. Hey, here's somebody else's CGM so, yeah. So
Kim 26:55
I like, okay, we're supposed to send this, and you have no accountability of her medical items either. So that was another thing where I was like, Whoa. You know, we had paid out of pocket for CGM coming there, so she had enough during the duration of the camp, because they asked that you send extra and all that. So yeah, they ended up finding them and mailing them to the house about a week later. Lovely.
Scott Benner 27:18
Listen, I very badly don't want to name the place right, because it is, Listen, I don't just trust your experience, but I'm also, you know what I mean, like, I'm trying to, we talked about this prior to recording, and I'm happy to bring it up here. But in my time in this space, I've seen a few things that really light people up. And one of them is there is, generally speaking, a very strong feeling from people who have been to diabetes camp and have gotten something from it. They're very defensive of it if someone brings up stuff like this. And so I don't want, I don't want there to be like, you know, backlash. I want this to be like your story and, you know, let people listen to it, because what I take from your story is, I better know, not just hey, hey, don't worry about it. We got a med tech here. It's gonna be fine. Like, I want real answers to how things are gonna happen. And for me, if this was me, I would not be okay with not being able to contact somebody. Because look what happened. Like, it took her three days to, I'm gonna guess, brow beat, or just finally get to the core of someone's soul, so that they would call you otherwise, she's, I mean, you know, she's got ketone she's over 330 she's vomiting. I can make an argument. She's in DKA, right? And they're telling her she's fine when she goes to medical there's where I'm not okay with being disconnected because you're trusting people, but what if they're not doing what they say they're going to do? Then, you know, five days is a long time all of a sudden,
Kim 28:48
right? So the whole thing, I mean, I don't know, I'm so baffled at it, yeah, I ended up, after leaving, getting a hold of a couple of the directors of this camp, and kind of went over everything with them and let them know the situation. And was like, you know, hey, nobody told me that she was actually sick. She did come home sick, and they wrote back and basically just apologized and said that they investigated the situation on their end. Who knows what they did? And they flagged protocols that weren't followed properly by staff and volunteers that were given training. Said that they were going to address it directly with them to make sure it didn't happen again and do additional trainings for staff and volunteers. She also mentioned that when my daughter was checked out by medical staff, a phone call should have been made to me at the time, and I should have been made aware of the stomach pain, the vomiting, all that, and I wasn't. So that's concerning as well. Yeah,
Scott Benner 29:48
so their protocols are feel kind of meaningless because nobody's adhering to them, right, right? But don't worry, we're going to retrain everybody. We'll just take the training we did last time, and we'll tell them at the end of this. We'll give it to him again. At the end of it, we'll say, No, this is really serious. You gotta do it. How's that gonna change anything? You know what I mean, like, in meantime, how many other kids blood sugars are running around crazy or not feeling well and didn't get through to, you know, some counselor who finally found the heart to pick up the phone, right?
Kim 30:15
So funny side story that goes into this is I had joined a Facebook group when she was freshly diagnosed, about moms with type one diabetics, and when this had happened, I was so upset and kind of just like looking for that support there. So I kind of gave a little rundown of everything that happened. And, you know, it's 5050, there was a lot of people on there that said how they loved sending their kid to camp, and they had a great experience. And this and that they're at different camps, but I also managed to connect with another mom on there who actually had a child at the same camp, and she had mentioned that there was some kind of fluke and they didn't disconnect one of the devices From the follow up, and her child had been going super low. I can't remember an exact number at this point, but it was under 60, and she said it was prolonged. It didn't look like it was a compression low or any of that. And she was to the point of almost trying to call the phone number to ask, you know what they were doing, because this had rolled out for a while. She was watching it on there. One of the admins on that group had actually put a comment on there about how her daughter's been to these camps and has no other is has never had an issue, and then proceeded to ask me what I expect them to do about it, and did I do this? And did I do that? Super rude. She ended up banning me from the group for bringing it up, because it was almost like she didn't want me to share this experience because her child hadn't endured that. But there were other people on there who have had issues at camps as well that I connected with. So it makes me wonder how many cases are like this, and how severe they get. And where's the oversight of it? You know? Yeah, I mean,
Scott Benner 32:04
it's a private it's a private company in the end, right? It's, there's probably where an org, it's not an there's no oversight of it. I can imagine any number of scenarios all being true. There's probably camps that are awesome and there's probably people who go to awesome camps who have a bad experience. There's probably people who go to crappy camps, who have a good experience and everything in between, right? So you know, you can get lucky, and some kids don't get sick, or it works out, or they're already, used to be in 300 so they don't feel unwell or whatever. But I'm a hopeful person, but I'm distrusting in situations like this. Forget camp for a second. I didn't trust the school bus driver. When my kid got on, when they were in in kindergarten, I was like, What are we doing here? We don't know this guy, you know? I was like, Is he drunk? Is he not? Is he fantastic? Is he a great driver? He's a crappy driver? Like, I don't, like, I don't know who that is, and whether they end up being terrific or not, you're not gonna find out till it's often times too late. So I personally, I mean, my kids have never wanted to go to camp, but if you asked me if I was gonna send Arden to diabetes camp, I wouldn't have done it. But it's only for this reason, for the unknown, not to say that there aren't great diabetes camps, or there aren't fantastic people who work at them, I believe There absolutely are. But you know, this happened to you. It could obviously happen to somebody else, right? But the thing I don't get is, when something goes bad, like, like, stop it. Like, get it, get it fixed. Like, how does a kid with diabetes who has recently been told, let's take less insulin than usual, and let's have higher blood sugars than usual, who's vomiting and has ketones, how does that not get elevated? Like, how is whoever sees that should be like, All right, stop everything. This is our focus right now. And at the minimum, they're supposed to call you and they can't handle that. That's insane.
Kim 34:02
It's alarming, for sure. Yeah, it is mentioned that, yeah, like, you know, if this is not a one size fits all approach for all these kids, you know, you have over 100 diabetic children in your care, like, I don't know you can. How are they really doing it? Yeah, well,
Scott Benner 34:19
Kim, I also, I don't know you. I didn't know what you were gonna come on here and say, like, you could have come on here and said, like, look, my kids got a five, four, a 1c and they let her, you know, for the week she was there, her a 1c rose to five seven. And I'm very upset. I didn't know where you were gonna be on this. Like, I didn't know you were gonna tell me 330 blood sugars, vomiting, crying for days. Like, holy crap. And this might be boy, I don't know. Like, it doesn't make sense to me. It really doesn't. Gosh, what's your daughter's like? How does she look back on this like you, she knows you're coming to do this, and she said she encouraged you to do this. So what did she say when she encouraged you to share?
Kim 34:58
She really wanted a. For people to be aware of. You know, the potentials of what could really happen at these camps. She kind of looked into it herself, and you see all these happy stories and pictures, and it's so great. And I can honestly say, and she can tell you that herself, that it really put her in a mental and diabetic crisis, and she has no intent or interest to ever go back to any camp. I think her experience really closed the door tight on that one, and left her in a really bad situation. So, yeah, I I feel bad looking back on it. You know, I thought I was doing something good, and she did. I guess, the one positive thing out of it, she did make friends there, and she still has communication with them, and that's great. But when it comes to the point of borderline negligence of her health, you know, I can't imagine ever putting her in that situation again, regardless of what you want to paint to me, because that's not the situation, and not all kids are, you know, having this great time. So Right? Yeah,
Scott Benner 36:05
you haven't gone up door and said, So do you want to try a different diabetes camp? I've
Kim 36:10
asked her if she would go somewhere else. She says, Absolutely not. She says, Never again. I said, Well, what if you can have your phone there? And she said, she's good. So
Scott Benner 36:20
are these friends that she made, or are they just in a survivors group together?
Unknown Speaker 36:24
Yeah, right.
Scott Benner 36:26
My god, Oh, Jesus. Are you nervous telling me about this?
Kim 36:31
I'm not really nervous. It kind of honestly strikes some PTSD of dealing with the situation, because it makes me mad, yeah, but then it also reminds me that you can't trust your kids with anyone, and you can't believe everything that's sold to you. And I guess you can have good intentions, but that's not always what's given. And I think a ball was dropped here. And you know, I just hope for anyone else's sake that attends those in the future that this stuff doesn't ran like that. It's very scary. I wonder
Scott Benner 37:04
how you would even find out like, like knowing now with your experience, right, and knowing the place you know, you obviously know where they were. Have you tried looking online to see if you can find other people with similar stories? I haven't. No, it's just one. I
Kim 37:20
don't know that I would want to hear him at this point, probably people.
Scott Benner 37:24
I'm trying to figure out, like, how, how a person who's listening was like, Look, I'm thinking of sending my kid to camp, and here's what's gonna happen. I'm gonna get a lot of emails. You're like, please just tell me what camp that was. I just want you to all know. I don't know, and I'm not asking. Kim, so to me, it highlights you need to do more than your due diligence. You you really need to be certain before you do something like this. Really, you know, it's not, not like, Uh oh, this. They say they're going to or something like that. And at the very least, if all good, listen again, like you said, Good intentions. Well intended. Not like, I'm sure nobody thought, I'm assuming no one collected your kids on that Sunday and thought, well, let's get all these kids into DK, let them cry and vomit, and then we'll send them back on Friday. Like, I don't imagine that's what's happening, right? So, right? Like, I think you just have to let the kids have contact and then 100% Yeah, you know, if a couple of the kids are just like, malcontents or troublemakers or whatever, and then whatever it is they're afraid of. I don't even know what they're afraid of by letting the kids have communication, but whatever, like, I'm sure they're thinking about parents who are like my kids. Blood sugar is 130 Bolus like, you know what I mean, like, that kind of stuff. But their better intentions led to a lot of poor outcomes, and then they dropped the ball so many times along the way. You know, Jesus, yeah, I listen. It's hard to hear your story and think, no, I'd give it a shot.
Kim 38:45
I don't know I if I've heard this or knew of any situations like that before. You know, it would have been a absolute no for me. But you see, a lot of these camps, you know, sold everywhere. And I do feel because it happened to me, when you try to share, like, a different side of the camp in your personal experience with it, if it, if someone views it as negative, which it is, it gets shut down. Or, you know, in my case, like it
Scott Benner 39:12
gets very political, very quick, right? Like they don't want anything bad said about their team or their side, or the thing that they like, or whatever, yeah, or their
Kim 39:20
kids didn't experience that. So you know, you're full of it, and that didn't happen, but it's very real, and it is happening. And I don't believe for one minute that she's the only child that's been in a bad situation. And like I said, I just it's scary for kids that may have been in a worse situation than that. Kim,
Scott Benner 39:37
I think we're done. Unless you have something else to say. I don't want to belabor that. I don't want to belabor this, and I don't want to drag sad stories out of you. But, I mean, everything I expected to hear after I understood what, what your experience was I heard, which is your daughter's got long term like, I mean, you know, this is not something she's going to want to do again. You took this thing where she was supposed to go make friends. Friends and trust people, and now she's distrusting of other people and her diabetes. And you know, that's hard to shake, like this experience was detrimental to her, not additive, right? Yeah, for sure. Like she went backwards here, not not she didn't go forwards. Oh, absolutely, yeah. I have heard people talk about making life long friends at diabetes camp. I've heard them find management ideas that they never knew existed from other people. And they'll come home and say, I take better care of myself now because of diabetes camp and and I've I believe those people who have told those stories, you know, absolutely. I also believe the person who online said, my kid, you know, was at diabetes camp for multiple hours under 60, and nobody did anything about it. So, yeah, I believe all the stories, like in in general, forget diabetes camp. Like people are people, and some people do a better job than others, and some people will, you know, cut corners or whatever. This is not an uncommon like human story, but I don't know this seems very important to me not to be in that situation, especially a kid who's not powerful enough, you know, either in stature or respect or whatever you need to get your needs met in a situation
Unknown Speaker 41:16
like that. Absolutely. Yep. I'm
Scott Benner 41:19
sorry we're talking about this honestly, because I see the value in it, and when it's done right, I see how great it is.
Kim 41:27
I agree. And I like I said before, I think it's important to see both sides of you know what has happened and what can happen so and before I
Scott Benner 41:35
get a bunch of emails said my kid had a great time at diabetes camp, and I want to come on and tell you about it. We'll just do that. Now. Your kid had a great time at diabetes camp. Their health was perfect. They made a bunch of friends. They're lifelong friends. They learned how to Pre Bolus from somebody else, and they're doing much better because of it. I genuinely believe that could happen too, but when you're on a website, like Kim said, and there's pictures of everybody smiling and everything's great, and 15 people between the front door and the and the and your car tell you, don't worry. We know how to do this. We do this all the time. Like you know there has to be enough in your mind to go, what if not? Like, what do we do if this because that's really what you and your daughter lacked, was, if this doesn't go as intended, what do I do to help myself. You did not have any outs there at all.
Kim 42:24
No, we thought everything was covered. But looking back, it's like, you know, you start thinking like, oh, I should have did that, or should have, you know,
Scott Benner 42:34
stuck another phone in her bag or something.
Kim 42:37
Yeah, I think it would have been a totally different ball game. If she would have been able to have communication with me of some sort, it wouldn't have gone on as long. Yeah. So that's a whole nother issue.
Scott Benner 42:47
No, of course, no. I mean, listen, I understand the kids not being able to get the Instagram like you're trying to get them out, moving around and talking to other people like that, all like, I make sense to me completely, you know? Oh, yeah, yeah. But once you're in that she she was vomiting. She was over 330 vomiting and crying for days, Jesus. Oh, that sounds terrible. I'm so sorry for her. Please tell her I said, uh, I'm sorry that happened to her. I'll let her know. Yeah, I don't have a diabetes camp, but if I did, I definitely wouldn't let her go into DK, like, she's got, wow, I all right, like, Did you curse at people? I
Kim 43:23
can't say. I had the most pleasant attitude when I picked her up and noticed that documentation and everything else. I was just so disgusted. And I don't even know,
Scott Benner 43:35
Oh God, I would have been, I think I'd have been yelling before the car door was open, and just and worried for her. I guess not. I guess I would have been worried for her first, you know, but she's How have you been able to console her? Maybe this isn't happening, but like, you're the one that told her it was okay to go to diabetes camp. You know what I mean, like, did you take, like, a trust hit in this? Do you think
Kim 43:56
I'm not sure. I don't think so. Yeah, well, I don't think she views me as responsible for anything. You know, it's not like I sent her there to go into that situation. That's not at all what either of us have thought. So, right? Our relationship is pretty good, but like I said, her trust in any form of camp, whether it's diabetic or anything else, she just has no desire. Maybe that'll change over time. Who knows, but
Scott Benner 44:22
I hear what you're saying. Like, the sight of a Boy Scout makes her nervous. Now. She's like, Oh yeah, those people sleep outside too. I want to be fair. Did she have any good experience while she was there at all?
Kim 44:33
Oh yeah. She like, I said, She made friends and connected with other kids, and she said that part was good, but it was hard for her to really do anything. Okay,
Scott Benner 44:44
all right. Well, I can't wait to get the notes. I please. I I know there are good diabetes camps. This one wasn't one. I say to everybody, do your diligence. Try to speak to people who have used it in the past. Be wary of people who are you know. Seem connected. It seems like you, you alluded to that at the beginning a little bit. You know, if they're connected, somehow they might have a reason to tell you how great it is when it's not, or maybe they really think it is and it isn't. There's no way to know. But, yeah, I mean, listen, everything's like this, I misspeak on this podcast. You know what? I mean? Like, it's why you tell people like, look, this is, you know, this is not medical advice, and you should take care of yourself. And if you have questions, talk to your doctor. Because I don't know. I'm just relating my experiences, but I'm also not trapping you here. You can, you can leave whenever you want, you know, like, if you, if you hear something on the podcast, like, I don't know if that makes sense. You're allowed to call, uh, anyone you want to, and chat with them about but man, it seems like it almost feels like a It sounds crazy. Oh my god. It feels like a soul movie or something. You know what? I mean? It feels like a bad joke, like I have to tell you you are obviously from some lovely part of the middle of the country. If I showed up somewhere and they were like, Hey, we're gonna lock your kid out of your diet, her diabetes device, and she can't get into her phone. I'd be like, you and then we'd be leaving. What did you just say? That's insane. We won't be doing that. Thank you. I don't know you. Is what I would think. You know, I wouldn't let that happen if she was with my wife. I mean, you have to
Kim 46:25
have recourse. Kim, yeah, yeah, you do. It's wild looking back on it. But I was sold, you know, that, that she was under all this wonderful medical care, and, yeah, I learned a really hard lesson there.
Scott Benner 46:38
I'm sorry. I really am sorry for you. It seems, it seems like I don't want to like, I've been schooled by a person who has PTSD not to just throw the word PTSD around like, you know, because it is a real diagnosable thing, not just something that happens to you if you saw a movie you didn't like and there was no popcorn, you know what I mean, like, so I don't throw it around. But I would imagine that this is something that sticks with a person with you, and the way you're going to parent moving forward, and hopefully it'll help you make better decisions, but it's also probably going to make you distrustful, and that sucks, and I can't see how it's not going to make her distrustful in some ways, and I think that sucks too, and she and she lost the opportunity to actually have Those great experiences that she was expecting and hoping for. Anyway. I don't know what to say here at all. Just sounds terrible. I apologize to everybody listening. I look forward to your emails. All right, Kim, hold on a second.
This episode was sponsored by touched by type one. I want you to go find them on Facebook, Instagram and give them a follow, and then head to touched by type one.org where you're going to learn all about their programs and resources for people with type one diabetes. US med sponsored this episode of the juice box podcast. Check them out at us. Med.com/juice, box, or by calling 888-721-1514, get your free benefits check and get started today with us. Med, Omnipod five sponsored this episode of the juice box podcast. Learn more and get started today at omnipod.com/juice box. Links in the show notes links at Juicebox podcast.com if you or a loved one was just diagnosed with type one diabetes and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CD CES, a registered dietitian and a type one for over 35 years, and in the bowl beginnings series, Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698, in your podcast player, or you can go to Juicebox podcast.com and click on bold beginnings in the menu. I can't thank you enough for listening. Please make sure you're subscribed, you're following in your audio app. I'll be back tomorrow with another episode of The Juicebox Podcast. Hey, what's up, everybody? If you've noticed that the podcast sounds better and you're thinking like, how does that happen? What you're hearing is Rob at wrong way recording, doing his magic to these files. So if you want him to do his magic to you, wrong way recording.com, you got a podcast. You want somebody to edit it. You want rob you.
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