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We’re talking about raising kids with type 1, the journey to diabetes independence, and educating around the use of emergency glucagon. We’re bringing you a panel discussion from Moms’ Night Out Frisco!

We have terrific speakers at our Moms’ Night Out events but we also have some panel discussions. This time around it’s Stacey and Cami DiRoberto. Cami’s daughter, Maci, was diagnosed with type 1 at age 7 in 2017. She and turned 13 just after our conference back in October.

Couple of quick housekeeping notes: this was presented and recorded as a hybrid Zoom and in person presentation – Cami broke her arm and was unable to attend in person. Her audio is fine, but Stacey’s recorded through the computer mic and isn’t up to our usual standards. We’re providing the transcript below.

Cami is a Gvoke ambassador and this panel was sponsored by Xeris Pharmaceuticals, the company that makes Gvoke.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Note: Gvoke is a prescription injection for the treatment of very low blood sugar in adults and kids with diabetes ages 2 and above. Do not use if you have a specific type of adrenal or pancreatic tumor, starvation, chronic low blood sugar, or allergy to GVOKE. High blood pressure, hypoglycemia, and serious skin rash can occur. Call your doctor or get medical help right away of you have a serious allergic reaction including rash, difficulty breathing, or low blood pressure. Visit www.gvokeglucagon.com/risk for more information.

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Episode transcription: 

Stacey Simms  0:05

This is Diabetes Connections with Stacey Simms. This week talking about raising kids with type one, the journey to diabetes independence and educating around the use of emergency glucagon. I’m bringing you a panel discussion from moms Night Out Frisco. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of the show. You know, we aim to educate and inspire about diabetes with a focus on people who use insulin. I’m your host, Stacey Simms and my son was diagnosed with type 117 years ago this week right before he turned to he’s almost 19 years old. He’s a freshman in college and he’s far from perfect. I’m far from perfect but cannot believe how far we have come at our moms night out events. We always have terrific speakers. Coming up for our Charlotte event. In February we have Sarah Stewart Holland. She is the co host of pantsuit politics, and her son was diagnosed really not too long ago. She went through that very publicly, and just going to be sharing her story. Our other speaker is Madison Carter. She is a local TV news anchor who lives with type one herself. But we also have some panel discussions at these events. This time around you’re going to hear me and Cami de Roberto hammies daughter Macy was diagnosed with type one at age seven in 2017. She had her birthday just after our conference, which was back in October a couple of quick housekeeping notes. This was presented and recorded as a hybrid zoom and in person presentation, kami broke her arm and was unable to attend in person. Her audio is great, but mine recorded through the zoom. And it is pretty rough. My amazing editor John has worked his magic the best that he can. But I’ll be honest with you my side of the conversation is not up to what I think our usual standards are around here. I will tell you though, I’m putting a transcription in with this episode. Wherever you’re listening, you should be able to scroll down on the podcast app and see and read what you’re listening to. If there’s any confusion about my side of the conversation, you can always head over to diabetes connections.com and click on the episode homepage to read it as well. Also, Cami is a Gvoke ambassador and this panel was sponsored by Xeris pharmaceuticals, the company that makes Gvoke you know I like my full disclosures around here. But they made this really easy. This is a genuine Parent to Parent conversation. And it’s mostly about independence. You know how you get from a kid who’s totally dependent on you to a young adult that you you can send off on their own. And one more thing about mom’s night out the early bird special for our next event in Charlotte has ended but I’m gonna give you a promo code right here just use m n o mom’s night out m n o 30 to save $30 off Charlotte registration. Alright, that is a long enough introduction. The panel is up next and since I just told you about CAMI I took out the introduction that I gave at the event and the big lead up so we’re going to just jump directly in right after this important message. Gvokeis a prescription injection for the treatment of very low blood sugar in adults and kids with diabetes ages two and above. Do not use if you have a specific type of adrenal or pancreatic tumor starvation, chronic low blood sugar or allergy to Gvoke High Blood Pressure hypoglycemia and serious skin rash can occur. Call your doctor or get medical help right away. If you have a serious allergic reaction, including rash, difficulty breathing or low blood pressure visit Gvokeglucagon.com/risk. For more information. I think everybody has heard my family’s diagnosis story. My son was going to the strip before he turned to one can tell us a little bit about Macy’s diagnosis.

 

Cami  4:01

Yeah, so Macy was diagnosed in second grade. It was the tail end of her second grade year. I’m sure like many of you, I was completely ignorant about type 1 diabetes. I knew there was a type one I knew there was type two, I really didn’t know the difference. I knew one kind of struck children, but I was completely ignorant. So it was like the last week of her second grade year at school and we had just moved back to California from Arizona actually. So we were kind of transitioning and all in all areas of life. And she had three bedwetting accidents in a matter of three weeks. First time she was at my mom’s house, like having a little sleepover with me. And my mom called me the next morning and I called and checked in. Hey, how was everything? You guys have fun last night? She said yeah. She said we’re just we’re cleaning up to today. Macy had a little accident and I was like, well that’s really weird. She hasn’t done that in years. But that’s so weird because it’s not totally outside of the norm for a seven year old little girl you know it could happen so that was weird, but a week later happened again and I was like, Okay, are we drinking too much water before we go to bed? What’s happening? Let’s let’s really so I started to pay more attention happened one more time a week later on, I was like, something’s wrong. The red flags, you know, we’re going off. And so it was a party it was because it was the last week of school. It was a party at school. And I woke her up and saw that she had had an accident and it kind of laid some towels down and changed your sheets. And I said, Oh, honey, I said, You had another accident. I said, I think we probably need to get in and see a doctor now. I said, Do you feel okay, you know, in my mind, I was hoping like bladder infection or something like that. But somewhere in the depths of my mother’s instinct, diabetes flashed across my brain. And i i To this day, I don’t know why. So I was sort of praying that it wasn’t gonna be that, but I didn’t really even know why I was thinking that it was all very blurry and confusing. But she said she felt fine. She wanted to go to school. So I said, okay, and I made an appointment with her pediatrician that afternoon. So I picked all three of my kids up from school that afternoon, and the four of us had at the end of the pediatrics office, and she checked it out and you know, took her vitals and sort of a physical exam. And she said, I think she’ll show your daughter fine. She said, I think she’s growing. It’s hot outside, you know, but she’s fine. And I said, Okay, I said, we’ll upgrade nose and I said, Can you just indulge me? And could you check for diabetes. And I swear to you, I still don’t know why I felt so convicted to request that. But I did. And she did sort of begrudgingly. And our blood sugar came back at 323. I’ll never forget time kind of stopped in that moment. Doctor came back after the nurse came in and prick Macy’s finger, you know, she left when three, the four of us were playing I Spy in the room. And like 1015 minutes later, so kind of like now that I look back and inordinately long time, the doctor kind of knocked on the door and up and said, Hey, Mom, can you come out in the hallway for a second? So I walked out. And she had the landline kind of cradled her shoulder and she she was clearly on hold when she said I am so sorry, I don’t really know how to tell you this. But you’re right, your your daughter has diabetes, and you’re going to be heading to the hospital for a couple days. And you know, here’s my office, if you want to make arrangements for your other kids, and just the world just kind of stops for a second. And in that moment, I didn’t even know what I didn’t know. I mean, I’m sure many of you can share that sentiment. It’s just confusing. You don’t even really know what you’re about to deal with. But that was how she was diagnosed. And then off we went to children’s Fortunately, she was, you know, we avoided DKA, which I’m so grateful for, like I said her blood sugar was 323. So they actually sent us home and called us when a bed was ready for her. So we were able to go home and pack a bag and kind of try to be positive and find some sanity for us. But also,

 

Stacey Simms  7:34

we were so lucky, our pediatrician, I called them similar symptoms. And she said, You have never seen diabetes, can anybody under the age of two to provide your program and so we can move on out. And we had such a incredible start to the families today because of that very smart pediatrician didn’t let it get to be a routine thing. Can you talk a little bit of you mentioned your other children. This could be a whole separate discussion unto itself. But to talk about the impact to your to your family,

 

Cami  8:03

if you can believe this, at the time she was diagnosed, we were literally living through a kitchen remodel, my whole dining room was set up I had like a hot plate and we had moved our refrigerator was like an all the way by the front door. Our house was an absolute disaster. And of course, we needed to figure out our new sort of diet plan as well after all this. So kitchen remodel and type 1 diabetes diagnosis were not ideal at the same time. So my husband Tori and I were in the hospital for two nights. And fortunately, we have a big family here. And so we had my sisters in law and my brothers and I mean, we had all kinds of family that came and stayed with my kids. But those first nine to 12 months were really particularly rough on Macy’s, little sister Emma, they’re they’re really close in age, but 14 months apart. I think it’s so confusing. She was six at the time. And I think she was terrified. And so much attention goes to managing it’s in those early weeks, months, gosh, even the first year who you’re still trying to figure out what your cadence for management is, you know, how often are you going to prick your finger and where and when and how do you leave the house and make sure you have everything that you need. I mean, there’s so much it’s like everything else stops and all you can do is focus on how to make sure this child of yours stay safe. And so I think there there definitely was an impact on my two younger children because all the focus was on me so we worked really hard on my husband and I like taking turns to like take the other two and do kind of go do special things and get them out of the house. But that was tricky for a while. That was definitely tricky, but we encouraged my other two kids to like prick their fingers and hey, let’s all check our blood sugar. So we did a lot of that in the first couple months, which was kind of fun. My Anna Macy sister was not not a fan of the prep but my son was like all about it. He was doing it to my sister so that was super cute.

 

Stacey Simms  9:53

It is hard it still works to this day. I don’t want to seem genuine so like self promotion machine like I did talk to my daughter went off tests. It is one of my favorite episodes. It was just last year. It’s part of the sequence and it’s okay to acknowledge that what helped me was just really honest. Aisha Nina, she’s 22 She is really got an interesting perspective. It’s been a while to see she was fine with me was diagnosed and she’s very honest. And she still has some hard feelings about it. But she’s an adult to, to acknowledge why it was the way it was. And she’s also it was a lot of fun to talk about that damn Calgary, Kimball. Because my son was diagnosed who for the first time all that disrupted Alright, so I’m gonna ask him, I’m gonna put my own two cents in real quick. So we’re gonna talk about that what was going through your head when Macy was diagnosed? Right and talking about your concerns and views for the future? Here’s how. I don’t want to say dumb. Here’s what I didn’t know about diabetes. So my little 23 months old. My first question for the endocrinologist was, don’t I have to be shuffling his feet and put his toenails differently? I was like

 

something is like, okay, no, it’s got to be like that. I mean, we’re talking about bigger fears. But you know, that’s where I started out.

 

Cami  11:27

Yeah, I’m not too far off. My first question was, was she going to have to like wear on her body because I didn’t want her tiny little frail body like Mark with devices. I was like, am I Heartland my, my mind went immediately, like pacemaker I’m like, can we get this stuff inside, so we don’t have to, like be visible about the so my first little vanity, which is a concern, you know, I didn’t want her to have to wear stuff. And they were like, now there’s, there’s no pacemaker type machine. That’s gonna. I mean, it’s amazing how quickly I got past that. I mean, we were we had we used to call it a power packs. And so you know, the more visible we could be the better. So we got past that. And thankfully, I think we might even touch on this a little later. But she’s super open about her devices. And when people ask her and said that, so that was great. But yeah, my initial thought was, oh, my God, oh, my gosh, and and it really wasn’t until I got home, Stacy that I realized the 24/7 hour nature just and actually, I remember, I think it was day two, and we were on lunch of day two. So we had checked in like late afternoon on I think, a Thursday. And so we had dinner at the hospital. And then we had breakfast at the hospital. And so we were working on lunch at the hospitals for our third meal. And the nurse comes in and says, okay, so it’s time to, you know, let’s do our carb counts and let dial up our insulin, we know what our ratio is. And we were like, Yeah, we got this and I looked at when I went, hey, just to like, be clear, I go, we’re not this isn’t like, Bro. This is like, like, while we’re in LA, oh, we’re gonna, this is gonna level out. We’re not gonna have to do this all the time. Right? And she was like, yeah, no, this is basically, this is how we have to do meals. Wow. So that was a moment to

 

Stacey Simms  13:05

Yeah, we’re here in order to talk about dealing with loans preparing for loans. Do you remember when you realize, because when you and I were talking, I’m gonna ask you to some of these things I have the answer to so Don’t be coy. I didn’t think about this for a while but used to think about this in the hospital already. When they started applying with us. Right. It

 

Cami  13:24

was discharged day. And it was our last meeting with the diabetes educators who were fabulous. By the way. They were wonderful contents. Yeah, it was our last day. And so we like our final meeting. And you know, Macy stayed in a row and just touring and I went into the diabetes education room. And they kind of did like an overview. And then they said, Okay, and there’s, you know, there’s one more thing that we need to make sure we go over with you. And that’s, you know, what we call severe lows, and they pulled out the red glucagon emergency kit. And they said, You know, sometimes you can have too much insulin or too much activity. And, and it doesn’t happen very often. But, you know, sometimes it can happen, and you need to be prepared to use this kit. And I was like, what? Can you pause for a moment? And let’s just rewind a minute. What do you mean, and that was a massive moment in time where I realized, so this medicine that you’re telling us, we have to give her, and we have to decide how much to give her to keep her alive, if we give too much, could also be fatal. And, boy, that was a poignant moment. And I’m sure one we could all share and pause on because that is the reality. But yes, that was when we left the hospital and I was absolutely terrified, terrified about severe lows.

 

Stacey Simms  14:42

I want to just get to the other question before the one in terms of like, do you have those fears, but you you still want him to lose their life? You still want them to be independent? I mean, your seven year old so you’re going to immediately send her off to be super independent. But how did you Once the engine, you know, I hesitate to see how did you get the cast that but how did you move forward with that?

 

Cami  15:05

It was difficult, um, you know, that was sort of the age, you know. So we’re now heading into third grade and I remember I had this like special lunchbox for her that whenever she ever we would leave the house, we go anywhere and had all of our staff had had her with an emergency kit and had her sugar it had her testing all the stuff. We all we all have that. And I remember there were a couple of times where Macy got invited to have playdates at some friends house. And again, we kind of knew what the school kind of knew newly back in California, so I didn’t know everyone yet. And she had a couple playdates. And so I sent mom would text me and say, Hey, Mom, you know, so and so wants to know if Macy can come over after school and play. And so I would respond and say, yes, she would love to however, I just need to make sure you understand BCS type 1 diabetes, and this can mean this and you know, she’s, she’s on it, but I really need you to just have your phone with you all the time. And I will tell you, it was challenging because we didn’t get a lot of repeat invites. And then and then I would go over how to use that glucagon emergency kit, because I was scared. I mean, what if, what if they’re out jumping on a trampoline? And God forbid, that’s her first low. I mean, so I felt like, I had to do that. But it was really tough because I didn’t want to and I think her social life. So you know, then I I tried to include an invite over to our house. So I did you know, slumber parties. That was a whole nother chapter to get through. But we did them in our house. You know, we didn’t have in our house for a long time. But as long as I had a willing person on the other end, I allowed me to go do those things. As long as I had a mom or a trusted, you know, dad or trusted caregiver. On the other end, I really tried to give her that opportunity to go and be away from me. Like frankly,

 

Stacey Simms  16:38

it was interesting. He was a two year old, my son. We taught him some things. And I know we’re gonna talk about that a little bit later. But did you start teaching Macy to do her own care with like with supervision, pretty much

 

Cami  16:51

immediately, immediately. I have videos of her coming home, like five days after the hospital and going okay, here’s Macy, she’s gonna give herself her insulin injection, and I’m videoing her and she’s smiling on the couch. And so immediately, I mean, we really, and I don’t know why I certainly could not have possibly had the foresight to know that that was important at the moment. I don’t know why we did that. But I’m glad we did. I mean, Stacy for you. I mean, he was so young. How, at what age? Did you start giving him independence? Or or? Yes.

 

Stacey Simms  17:25

Everybody curates differently.

 

Unknown Speaker  17:27

I noticed, you know, I

 

Stacey Simms  17:28

jokingly call myself the world’s worst diabetes mom, but slight. And I, we always wanted to raise our kids to leave home. And if it’s about them, and you know, everybody, everybody’s different. But when he when we both worked full time, so my kids were both in daycare, and we’re, we’re the luckiest people, I think when it comes to the type one things that happen. And so when I brought him back to daycare, the manager was like, oh, yeah, I used to be a minute, I can get injections. And I was like, Can you sleep here because I don’t want to give you the money. And then go, actually, the whole team here started learning how to do it. And once he got an Insulet, on six months later, everybody was like, Yeah, I’ll check that out, you know, and two of the ladies there became nursing students, not because of him, but like he was just cool. He didn’t have a desk calm because this was 2006. He didn’t get a desk until he was nine. And so we decided that when he was going into kindergarten, which honestly was one of the most terrifying things for me, like that was a hard, hard transition. Because we’ve had it so good at daycare, we told preschoolers, as we called that, like, hey, we want Benny to know how to check his blood glucose and muses, champions to kindergarten. And so we’re going to teach him that at home. And can you help us out a daycare? And if your kids have ever been in daycare, like that’s where they are independent, they come home, they would do anything for being going to calculus and the dude helping us a four steps. So let’s do one. He talked to him, like, boys took their own leadership when kindergarten things like demonstrated I was able to do it so that once you could do that, and he always knew, officially, I have to show my there was always a responsible adult, he wasn’t just doing that. So that helped us because in our neighborhood, first grade is when people start going playdates pretty much by themselves. And so we would line up, no Dexcom. But people have to call me and be like, Here’s what a meeting person and I’m going to be helping from the dose and I want everybody in my neighborhood a person, which is really fun. And that’s what I believe is really good friends with London because we get the case. Every evening on the counter for the kids, I don’t know it’s like after school.

 

I could go on and my answer to that question is very gradually, every year he did something else that is more leading more and more towards independence. Was the blood sugar perfect? Absolutely not. But that’s the trade off I think sometimes. Alright, so we come back to our stuff we’re talking about. Do you have any lessons you learned that can help other moms with, you know, similar aged kids just starting out?

 

Cami  20:14

I think probably, and again, not not because I did this, because I knew what I was doing. But as it turns out, we gave me see the confidence or Macey develop the confidence to be really open about her diabetes. Um, there’s actually an influencer, who she’s now a PA, some of you may follow her. But she’s, she’s a PA, she has type 1 diabetes, and she just had chant twins a couple years ago. But anyway, she did this whole post online, maybe three years ago, something like that, about the importance of teaching your kids to be confident about this, and to talk about it enough to be embarrassed about it. Don’t go into the corner and trick your finger. Don’t try to hide all your stuff. Because what she found she was talking about her own experience when she was younger, she said, there was so much curiosity among kids about what you know what, what is going on? What are you doing over there? And why are you freaking out? You know what’s happening? And she said, When I tried to hide it, that’s when people really got curious. And it became kind of this big thing. And she said, as soon as I was like, Oh, I’m pricking my finger, because I have type 1 diabetes, and I just need to know my blood sugar. They were like, oh, okay, no big deal. And when she said that, it resonated with me, because I feel like we did that, again, by the grace of God, not because we knew what we were doing. But, you know, we really encouraged me see, to talk about it. And to educate people, I said, you know, you have this for better or for worse. And it’s kind of your responsibility to talk about it and to educate and to kind of be an ambassador for this. And if you see someone else who has come on, welcome and introduce yourself and say, Hey, like, like your next column. And so to be open about it, and to embrace it, I really think it’s helped or to just be confident and to accept it. And I, you know, it’s easy for me to say, because my daughter was seven at the time, I think if you have a diagnosis, when you’re you know, on stage, it may be for you to a little bit like that, if you have a diagnosis with a 16 year old boy, man, I think that would be really, really challenging, because you just might not have that same response from him or, you know, 15 year old girl. So I think that’s difficult, but to the extent possible, I really think that’s invaluable. Probably one of the most valuable components of Macy’s type 1 diabetes life is that she’s not embarrassed about it. It is what it is that she wished she didn’t have it. Of course she did. But it is what it is. I would say that’s probably my number one piece of advice,

 

Stacey Simms  22:21

I think to you, you kind of as I said, we were very lucky. Betty is extremely outgoing, don’t know where to get stuff from. And she nearly it was never shy about diabetes, daughters Natori introverted. And I would worry, I think it would be different, but I worried about her in middle school in high school, it would have been a different experience. I think, overall, they’re just different kids. Yeah,

 

Cami  22:43

I mean, I think as they get older, you know, Macy’s in eighth grade, right for 14, and college scares the heck out of me. I mean, when she goes spent the night at a friend’s house, where I know the mom very, very well. And five minutes away from me, that’s one thing, but I’m terrified of college, and her leaving the house, we’re doing everything we can to prepare her. But I’d love to hear a little from you. Well,

 

Stacey Simms  23:08

you know, I’m gonna start by my mother gave me advice a long time ago, especially when he was really little, which is don’t borrow trouble. Like there’s enough to worry we have in front of us. So when he was two, she was like, don’t think about college yet, but you’ll get there. So I won’t say don’t think about just obviously, your top two. But that kind of helped prove a little bit. But I will say and we touched on this a little bit. The gradual independence that we gave Benny really helped us. I mean, it helped him, but it helped us. So our diabetes educator who is just an amazing woman recently retired, she has two adult sons with type one, one of whom was in New chronologist now, and she told me that the first time we met her, I said, like, oh, you know, do you have any advice? So that what can I basically I was like, How can I not mess this up and make him a good person and a healthy adult. She’s like, why we can’t tell you how, but I can tell you what not to do. She said, I just taught an 18 year old who’s had this for a long time how to get insulin shot, because he had never done it. And he’s going off to college. And she’s like, don’t do that. Don’t do that. And you know, we all know that families don’t want to pass judgment. I don’t know what’s going on. But I just was like, Okay, we’ve got a long time to get into the printer. So what we did was at the beginning of every school year, I would say, Hey, how you want to manage diabetes this year? What’s your goal? And so I didn’t give him that choice in kindergarten because I was ticked like I said, I was terrified. But in first grade, he said he wanted to eat lunch by lunch at the cafeteria once a week, at least. You know, by fifth grade. He was like, I don’t want anyone ever checked in with the nurse because we live in North Carolina where they don’t have full time school nurses. So we had a nurse at the office maybe two days a week. We had amazing staff who were like very caring individuals but didn’t really know who diabetes. So that’s another reason why I taught him to check his blood glucose. Because Jeff’s calm which was not just been scheduled this time. So don’t shut down we got we got Dexcom we had no Sherawat follow. So I mean we do is at the time he was supposed to pick us up and even just look at the steps. So he’s your team didn’t really change very much. But fifth grade was I don’t want anybody looking over my shoulder anymore. I’m just going to Joe’s gonna be compromised. Because I don’t know about you guys but Middle School fifth, sixth, seventh eighth grade Marines like Whovians. So I do anything that I need a thumbs up to your teacher, that you gave yourself insulin for lunch. And he was like, Cool. Mr. Parker said, we’re good to go. Then Middle School, he’s like, I’m not checking in with anybody. I’m on my own. But I want you to text me every day before lunch. You’re young, you’re bolus. Oh, how wonderful. You would think how wonderful and you want to do bolus every day of that we just want to run with it. And we also talk, a little wonder, but we also have the same conversation starting in middle school about how are we going to manage Dexcom share, because I have a very funny Facebook post that I pulled out for the second book. And it’s one of the first to share, he went on a field trip. And I was like, how do people do this? This is the worst thing that’s ever happened to me. I have to look at these numbers all the time. Oh my god, this is overflowing. I need this. So I sat him down and I’m like, but if you read above this number for this long, I will text you if you’re below this evergreens, Islam, I will text you and we went every year we changed that. By the time he was a junior in high school. I turned off the high alarm senior here, which was our independence here. I was like, okay, but the junior senior high school, I am not going to help you. And once you really, I turned off my love. The real turning point for us was that when he was 16, he went to Israel for a month with a kid, not at the biggest scale just because of regular sleepaway camp. And when he didn’t Well, and came home, I said, What am I supposed to do now? Like you’re done? I’m done. You’re cooked. When you say now your customer service. And we went to camp this summer where he was a lifeguard. And he said, we’re done. Like off with follow. So I don’t follow. Kids, we’re doing this before sharing follow up. You’re like, right,

 

Cami  27:12

is to allow anyone to follow him.

 

Stacey Simms  27:15

Know that he’s following him right now. But I know in the heads of the question, I’ll ask him. In the past, he’s had friends follow him, friends with him without diabetes. And that’s fine. He’s young. He has a roommate. He’s not alone. I’m sure. My concern right now is more about highs than lows, because he’s just kind of doing the minimum. I do like index complexity. But you can see the back end look. I’m gonna talk to him about it, because I figured he’s a busy freshman figuring it out. Yeah. So again, we all hear differently. And because I feel him in one cameo, and I’ll wrap it up in a second. But because we took all those steps to independence, already, we had really bad diabetes experiences. He’s been low on sleepovers. He’s been high on sleepovers, he has had his infusion sets come out. He’s walking on insulin at restaurants. He walked across my neighbor’s lawn to our lawn that intersect without telling anybody at four o’clock in the morning because he was low and didn’t like the juice selection. Do you realize

 

Cami  28:19

that follow over

 

Stacey Simms  28:21

when they’re 62. Right? So we’ve got a lot of time to make a lot of mistakes and realize like he’s a tough cookie. So it’s really yeah, we’ve done it all. Okay, so um, but Matt, what’s your question for me? I want to ask you to county before we move on, you mentioned the Congress and things and it’s tough on their stuff. And I mean, everything stuff. My daughter’s maybe like, can you complain to me, too? Am I the guide a little easier, she’s older and she doing 13 to 14 is like when they’re really pushing you to make them more independent here to them more.

 

Cami  28:56

You guys. Yes. So for her birthday, last year, her 13th birthday, she had all these friends that did some these like elaborate parties and all these things she could mom, all I want is I want to go to the mall with my friends. I don’t want you hiding in a coffee shop down the street. Property, I want you to drop me and my friends off and leave go back home. All you when we’re ready to be picked up. So I dropped her off. And that was what she wanted for her birthday. They went out to dinner. And you know, they I think they were there maybe four hours. But she literally asked for independence for her birthday. You know, we also take advantage of this technology. So she she wears an Apple Watch. So even at school like you know, if we see we’re on a chain actually, it’s my husband and I and Macy and then they have an iPad in the school office, that some chain so we’re always watching her numbers. And if she goes really high, you know, we kind of have to kind of have thresholds like if she’s too high for too long, then we’re like Amy see, are you having insulin? If she goes low, he may see or you know, are you having sugar so we’ve kind of got this cadence of communication. And I think because we’ve so to hold her accountable, it’s been easier to allow her to be more independent. Because she and we’ll talk about this, I think in a few minutes, Didi like, you know with low she communicates mom and having sugar mom I know I’m high I’m gonna give myself three units. So that’s great you know she she communicates but back to your point a few minutes ago there Her brain is also gone because she’s 13 and this junior high where it’s just like, sometimes we’ll be on dessert already through a meal and I’m like, oh Macy bullet strike. She’s like, Oh, I forgot. I’m like, provide like we’ve been doing this for seven years every time you put a morsel of food in your mouth?

 

Stacey Simms  30:34

Yeah, that’s a change. Yeah. I do want to talk about, we’re gonna change gears a little bit and talk about severe blows. I noticed people very nervous. I do want to say this is meant to be educational and not scary. But CAMI is going to share some stories. But I do need to say that definition realize that severe lows occur when blood sugar gets too low for your body to function optimally, and requires immediate health to recover. It is really important to be prepared for the unpredictable. And I joke around a lot. But we do take this very seriously in the afternoon students of preparation when I think of the Ford Academy, because you had unfortunately not experienced with us.

 

Cami  31:16

Yeah, so Macy’s had three severe love, none of which happened in the first like four years of her diabetes diagnosis, which was, you know, wonderful, because we never had to use the red mix kit. I don’t know if I even would have been able to do that in a moment of panic. And as I walked through the story, I think this will make more sense. But initially, when we were informed about severe lows, what they could look like what they were, I was so terrified, it was like this taboo that I almost didn’t even want to think about or talk about, I knew it was there. And I acknowledged it but I just wanted to do everything I possibly could to never ever, ever have to even get into that realm of a severe low and say. And things changed for us a little bit, to be honest, when I learned about Gvoke and how it could be used. So let me walk through, you know, our severe lows and kind of how those played out. So the first one was a few years ago, and my husband was traveling, he was out of town. And so it’s just me in the kids home and I tried to eat pretty low carb, but for whatever reason, this pasta night, so I made some pasta. And Keith and I were eating and Macy bolused for her entire plate of pasta, and then eat about half. And then when I was jumping, kind of like a trampoline this like Airtrack thing we have in our backyard at the time, my son was really into like learning how to do flips. So he was like, Macy, come on, let’s go out. Let’s go out jump on the Airtrack. And so they were out and my daughter and I were kind of inside. I think we were watching a movie or something. So all was quiet, everything’s fine. Kids were having fun. It was just a regular night. And then I get the alert on the Dexcom. And it’s 50 to two arrows down. And right at that moment we see blast through the front door. She’s like Mom, I feel really low. So I’m like okay, so I get her some apple juice. I think we actually use the little gunk, she doesn’t like apple juice. So we give her some gummies waited a few minutes. And then then the reading said low we prepped and it was extremely, she was really low. And I said Macy. You can keep pounding sugar I said or we can pull out your G book right now. And she was like, let’s just do the G book.

 

Stacey Simms  33:08

Hey, this is Stacy jumping in. Just to give a little bit of an explanation. Here. Hypoglycemia is defined by level one glucose lower than 70 milligrams per deciliter, and greater than or equal to 54 milligrams per deciliter level to glucose lower than 54 milligrams per deciliter. And level three is a severe event characterized by altered mental and or physical status requiring assistance. This level of hypoglycemia is life threatening and requires emergency treatment, typically, with glucagon. Now, back to kami. And

 

Cami  33:45

so we were in that moment, I gave her a choice because she, in the absence of intervention, she was going to pass out and she was headed down. And so we injected G voc. And within a very few short moments, she started feeling well and recovered. I think she got up to about 180 and then ultimately leveled out. That’s it. That was experience. Number one. Tell us about Jimi Hendrix. Number two was a little bit kind of the same, but kind of different. Again, my husband was it was during a period of time where he was working on something and so he was traveling quite a bit. So it was after dinner, I had to open like 839 o’clock at night. We were actually all up in my room. And my when my husband travels or just forgotten early on, all my kids get to have a slumber party in my room. So Macy and I were reading I think I had one on like a blow up mattress on the floor. And we were watching a movie and just kind of his quiet moment. And the Dexcom alarm goes off. And it’s super low reading. And so it was we treated it the same way where we tend to treat with sugar first. And we had no we had no idea. She was I think she was 49 Two arrows down and she had like three and a half units of insulin on board. To this day, we still don’t even really know what happened. And so she had sugar continued to drop, we pricked her finger, and she actually that time said, Mom, I want to use Gvoke and so We have several of them. And so we opened it, she actually injected it herself into her the first time I did it in her arm. Second time, she gave it to herself right in her thigh. And same recovery scenario. It was amazing. It worked really quickly. And I knew that it was going to give her what she needed, so that we avoided that biggest fear.

 

Stacey Simms  35:19

Stacy here again, just jumping back into give this disclaimer, it’s really important to understand that Individual results may vary. And you’ve always got to consult your healthcare provider.

 

Cami  35:28

Right? I mean, think of severe hypoglycemia, you think of someone on the floor on that worst case scenario? I mean, really, that’s what you’re thinking, think of incapacitation? And I mean, is my child going to lose his or her life, I mean, that that’s really what we’ve kind of been trained to think about severe low, and there was sort of this paradigm shift for me in my mind about using glucagon, not to say that you use glucagon every time you have a low, not at all, you know, always, of course, treat with sugar. But there are scenarios given the way technology has progressed, we know when someone is headed for disaster, we can prick a finger, we can look on it next time, we can look at their symptoms. And we know that in the absence of intervention, something bad’s gonna happen. And with G voc, you can use that to ward off that unimaginable moment of someone passing out. Actually, that’s a perfect time to bring up the last time she’s just a little over a year ago. She was at a slumber party. That was a birthday party 13th birthday party. I know the mom quite well. She’s one of those very supportive moms that you just want to hug and say thank you for understanding and for taking this on and sleeping with one eye open when my daughter spent the night at your house, they had gone out to dinner, they went to PF Changs. And so she had shared a bunch of food with our friends. And they’ve gone back to the house and they were all getting ready to go swimming. And Macy got a LOW Alert ello w. And I was like, oh, okay, and so we stayed on the phone. And she said, Yep, she just administered it, and she feels fine. And, you know, call you back in a few minutes. She knew she needed it, she was afraid she was gonna pass out. And she administered her Gvoke, her blood sugar popped up within a few short moments. And she never had to experience the full blown incapacitation, that gives me such comfort, knowing that she knows how and when to use that. Because you don’t know when it could happen. as vigilant as we all want to be they happen. And so knowing that she has the confidence to pull that out and know when she needs to use it is a massive source of comfort for me. And we’re

 

Stacey Simms  37:20

going to start wrapping up in just a couple of minutes. And I have another quick question for you can we but I want to share, we need to set the amount of comfort, we’d have not had to administer anything that wouldn’t have gone. I would have liked it in a few places. We’ve been to some external markers, that red box here. But one of my proudest parenting moments, wasn’t even there for freshman year of high school being wrestled in high school for a couple of years. And we didn’t do this in high school, but the sports teams to travel now love them. And they fundraise and they say right hotels and I, I had an instance where I was, you know, still following me as a freshman, and I couldn’t reach him. So I called the teen mom. And she was like, Oh, he’s actually my son tonight. Like, I’ll ping them. And of course, he just wasn’t looking at his phone. And he was like, I was laying on me. That’s kind of mine. Fine. But he came home though. I said, What would you have done? Like, let’s talk this through more, because now I am thinking about more. You know, how do you manage that he’s like, Oh, my gosh, luck is anytime I’m with new people overnight between summer camp and wrestling and sleepovers. Anytime when we meet people, I take out the G book United type 1 diabetes I’m going to be and this is the other thing I’m not drinking, if I’m passed out or I’m slurring my orders or anything like that, I’m actually Lucky’s like, call the coach then use this and he shows them how to use it as well. Like I really don’t want another 15 years of administering. Yeah. But at the same time, I was really proud. And then I said, Well, do you ever like Does anybody ever gets to change rooms? Because of the hammer because of the BB? And he’s like, Oh, my God, Mom, I already see what works, you know. But I was really so my one of my last questions who can be here as I don’t have a child who has used this? You would like you said, you were there the first time there was another adult there the second time she used it, but have you been talked about? Like, how is it helping? The chief? She fearful? What is she doing? She think about it? You

 

Cami  39:11

know, I’ve asked her? And she said she just feel safer? Because she knows that there. She’s not scared of it. And to me that’s everything because there’s a lot of fear involved in this disease, fear of your client, my blood sugar is too high. What’s that going to cause in the in the future? I mean, we’re we’re constantly you know, trying to mimic them an organ, a human organs. You know, there there’s a lot involved in that. So just knowing that that component, that fear factor part of it, she’s got a plan. She believes she’s covered. If she gets to that point, and we do everything possible to avoid it, of course, like all of us do. But if God forbid it happened again, she’ll know what to do. And that’s amazing that Benny educate other people. I think that that’s huge because sort of like wearing your seatbelt right? We we don’t put our seatbelts on every day when we get in the car because we think we have a high probability of getting a new car accident but what if we put our seatbelts on? It’s the same kind of concept

 

Stacey Simms  40:09

you’re listening to Diabetes Connections with Stacey Simms. Big thanks again to CAMI for zooming on in again, she broke her arm just before the event. And I give her so much credit. I had a crowd to talk to. But she was basically just looking at herself. You know how Zoom is. So I really appreciate that. Kami. Thank you so much. We did take some questions after that last comment of camis. I know it ended a little bit abruptly, but the audio really fell off. After that. There’s only so much that John can do with his editing magic. If you liked what you heard, please share the episode. And please join us for mom’s Night Out Charlotte in February. And for our other three stops in 2024. I am scheduled to share those locations this week. As you’re listening I may have already done it. So please be sure that you’re following me on social media. You can always reach out though Stacy at diabetes dash connections.com I will say there was one city that we heard the most comments from and that is on our list. So definitely let me know if your city or a place you cannot get to is on the list. Definitely ping me for 2025 We are listening to you. And we are I mean I’m going forward with this full steam ahead in probably four events a year until I don’t know until people stop coming. Thanks again to jump you Candace, my editor and a big thanks again to Xeris for all of their support. I’m gonna read that important safety information one more time. Gvoke is a prescription injection for the treatment of very low blood sugar in adults and kids with diabetes age two and above. Do not use if you have a specific type of adrenal or pancreatic tumor starvation chronic low blood sugar or allergy to Gvoke High Blood Pressure hyperglycemia and serious skin rash can occur while your doctor or get medical help right away. If you have a serious allergic reaction including rash difficulty breathing or low blood pressure, visit Gvoke glucagon.com/risk For more information, I’m gonna link all of that up and the link in the show notes. And Stacey Simms. Thanks so much for joining me. I’ll see you back here soon. Until then be kind to yourself.

 

Benny  42:14

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged.

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