Trust Your Momma Gut; 11 year old GiGi shares her experience living with a medical condition, which would have went undetected if her Mom hadn’t spoken up!

11 and a half year old Gigi is a smart, witty, fun, beautiful, and independent girl who was diagnosed with type 1 diabetes in November of 2022. This came as a big surprise as there is no history of type 1 diabetes in her family. I'm grateful that Gigi and her mom were willing to come on and share Gigi's experience of first learning that she had type 1 diabetes and what she's learned over the last four months as she's navigating this new diagnosis.

Welcome to the No Problem Parenting Podcast. Turn behavior problems into no problem with Jackie Fineman. Are you ready to become the confident leader your kids crave you to be? Do you want to learn how to make parenting easier and more fulfilling?

Whether you are at your wit's end or you want to have more fun as a parent, you're definitely in the right place. Now, here's your host, Jackie Fineman. All right, welcome back No Problem Parents. In keeping with our health and wellness theme this month of March, I'm so excited to have Gigi and her mom Jessica with me on the show today and to tell you a little bit about their journey as they discovered that Gigi had type 1 diabetes. So at a normal well-child check a few days after Gigi had the flu, Her mom, Jessica, told their pediatrician that she wanted her daughter to have a full blood workup due to the fact that she was always thirsty, never full, and was losing weight.

Little did Jessica know that this request would save her daughter's life. A few hours later, Jessica received a late evening call from their pediatrician stating that Gigi had type 1 diabetes. Jessica said, I think you need to run the test again. This has to be wrong because no one on either side of their family had type 1 diabetes. After the doc explained that Gigi's A1c level was greater than 15, the chart does not go any higher than that. Her glucose level was 535 and there was a plethora of other scary results. Jessica rushed her daughter to Children's Hospital, scared, uncertain, and full of questions. The next few days were a whirlwind for the family. They were surrounded by the most amazing care team that they could have ever asked for at Children's Hospital in Minnesota, but their heads were spinning with all the information. All Jessica could do was think about the scariness of the diagnosis, how the high levels could kill her,

the low levels could kill her. Controlling the diagnosis is a science and an art with no guarantees. Like many others, they had no idea what the difference between type 1 diabetes and type 2 was. So type 2 can often be controlled with diet and lifestyle, but when you have type 1 diabetes, your body stops producing insulin, a hormone that's essential to turning food into energy. Managing the disease is a constant struggle that involves continuously monitoring your blood sugar level via finger pricks or a CGM device, administering insulin before any meal, snack, treat, and carefully balancing those doses with eating and activity. And for Gigi, it also involves a different insulin type to be administered before bedtime. So even with a strict regimen, people with T1D may experience dangerously high or low blood glucose levels that can, in extreme cases, be life-threatening. So with type 1 diabetes, there are no days off and there is no cure, but there is hope. As challenging as this disease is, the family is trying to focus on the positive and figure out a way to make light in the battle. They believe everything happens for a reason. And they're quite certain that Gigi is going to make a positive impact in a big way towards raising awareness and finding a cure in her lifetime. And that's why they started Gigi's team. And they're participating in the 2023 JRDF One Walk Twin Cities, Minnesota event this year.

They want to raise awareness and raise funds to find a cure. I've put a link in the show notes, so go click on that link and you can help support Gigi's team and donate, helping her reach her fundraising goal. Welcome to the show, Gigi and Jessica. Gigi, I know that you guys really didn't have any idea about type 1 diabetes. Why don't you just jump right in and tell us what this experience has been like for you and what you've learned. I feel like we didn't really know much that much before. I mean, I feel like to us, we never really experienced anything like type 1, like no one in my family, I don't think ever had type 1. Lots of like people had type 2, but I didn't really know that much um because they were still eating the stuff that I eat and then like I was always wanting to eat sugar for some reason and that's kind of what led on to my mom wanting to test my blood because I always crave sugar like I crave sugar too but like I was like extremely craving it like every single night I always like felt the urge to have sugar and I was always drinking lots of water like I don't know if this had anything to do with it but sometimes I felt kind of drowsy but that might have just been me um but like the water I was drinking a lot of um and so I think I was going to the bathroom a bit maybe not entirely a lot but probably a bit just because of all the water I was drinking and then we tested my blood at a well well child

check yeah I remember the day it was a Monday and it was the Monday after Halloween um because I remember being sick and then we went to our well like yearly well child check and me and my brother both got our check and my mom just told my doctor she wanted to test my blood even though there wasn't entirely like a reason for my doctor to think about it much it was just my mom because she was like you're really drinking a lot of water you're really having a lot of sugar and she said like she was gonna probably get me a nutritionist but she think it was just like a thing that I needed a lot of sugar from and that's kind of how she kept telling me like if you keep eating so much sugar you're gonna get like diabetes and we thought it was like the type two. But then like, kind of somewhat ironically, I was diagnosed with diabetes. But I didn't really know at the time, really, that there's a difference between type one and type two.

And like, it wasn't my fault. It's not because I like ate too much sugar. It's just kind of like something that happened. We're thinking, I started having like, little nudges of it. But like I said, a week before I was sick and like that kind of pushed it over the top with my immune system and then it just didn't handle anymore. We knew that the water had something to do with me and like my body knew before I did that I had type 1 diabetes so drinking all that water we were my body was trying to flush out the sugar and I think it was trying to also flush out my ketones because my blood levels were like super duper high.

So they were trying to flush out the ketones I had and the sugar I had. And that's why I drank so much water with my high blood sugars. I think we're leading on to like when I'm high, I crave food. I crave like food because like when I'm high, I just get hungry.

Like right now there are different ranges for different like people. Some people have tighter or looser ranges. mine is for now anything like below 80 is a low for my blood sugar like if my blood sugar is 79 or lower it's a low and then if my blood is 150 or higher it's a high so we're trying to stay in between that range what do you have to do to stay in that range well we have to get I have to get dose to insulin um usually like when I'm low I have to take some sort of active sugar or glucose so sometimes we give me a glucose shot like that a drink shot it's just like kind of like a little shot of like sugary flavored juice that we can give me other people I know do juice boxes jelly beans is one that works for us a lot because we can just put them in our pocket and then go have a great idea and they're really yummy and I don't get bored of them because there's like a lot of flavors but we did find out like before we were using this candy called Andy's mints and and so that's what we were taking when I'm low because each Andy or at least Christmas Andy is five carbs per five carbohydrates so I and I love chocolate so I got to eat three of them when I was low because then it'd be 15 15 usual amount to take but sometimes we take less than that if I'm like 79 like I'm low but I'm not that low so we don't really want to take too many we'd probably take about five to ten just depending on carbs carbs like five to ten carbs but that would usually

just be um jelly beans because the gluctose shot we found out that like that's usually for when I'm way lower like 65 sometimes like I usually always take 15 then but sometimes if we're like in the middle of the night jelly beans you don't really want to keep chewing them throughout the night because you just want to get sleep so what my parents do is they just give me the gluteal shot and say like depending on what my blood is drink half of this drink right let's drink all of this like just depending on what my blood is so how often do you have to test yourself how do you know if you're low or high well we have we used to always have to prick my finger and it's usually based on what I'm feeling so for example when I'm low I usually feel drowsy sometimes like on the inside quippery like kind of weak you know and then when I'm high like I said that one's a little bit harder for me to know when I'm high um it's usually probably craving sugar and it would be it's way harder to tell if I'm high than low I could say but now that we have a cgm continuous glucose monitor it's way easier because we can get my readings like instantly and we always have the readings so that they're usually always so that anytime my blood dropped i don't have to wait until i feel the quiver because or the weakness in my knees or the weakness in any part of me because like for example one time i was at school

I didn't like pay attention to it much because like I was just working and like when I'm working I didn't really pay attention to how I felt really I just kept focusing on it or focusing on whatever I was doing and so with the alarm I put on these um that would be like the only way I probably would have known that I had a low or a high some people carry around glucose monitors that help monitor with it. Like it's got like a, it's like a tiny little computer that you can carry around with you and just check your blood later.

But mine's, I have mine in my phone and I usually don't set my alarm like to like a buzzer or a beep because in my opinion, that kind of like embarrasses me in front of the class because when we have those quiet moments, when we're focusing on something, maybe reading and we just have the quiet moments when you're like self-reading or something it's kind of embarrassing to have yeah everybody pays attention to you and wonders what's going on like I could feel like the flush come to my face and stuff like one time it did happen in class and I was quite embarrassed about it I just felt like everyone's staring at me so I was like really embarrassed so I went out of the class and went down to the nurse you know because I had to check my blood of course and so yeah I was not very good but now I set my alarm usually to just vibrate only okay so it just vibrates instead of beeping out in the middle of the class and then sometimes if I don't notice it or or if I do notice it my mom would still or my dad would still just give me a text that's like okay honey you need to take a couple jelly beans now or okay honey you gotta drink a shot now or something like that. Right. Tell our listeners in case they don't know a little bit more about the monitor and how that works. How does it send that signal to your phone? It's basically the size of an, like a Lego, you know, it's like about the size of one of those, the little eight piece Legos,

the two by fours. And it just goes onto my arm. It has a tiny little needle in it that you don't really feel throughout your everyday movements it just the tiny needle so it's kind of like pricking my finger except for little needle does it and it's already in my blood anyways and so it just kind of sticks in there and then there's another part to it that sticks into it called the transmitter and this is the thing that reads my blood and then sends it to my phone what my reading is so it's that is awesome yeah we I think there are two brands well two brands that I know of cgms which are dexcom and freestyle libre but we went with the dexcom and we love it so one thing that did shock me though is the first time we put it on in all the videos that we watched like how to put it on the thing that shocked me because I wasn't expecting this is that it made a loud sound it it sounded like like kind of like a gunshot it was like big and loud it was like yeah it was scary so it scared me a lot and we didn't know that so it it really scared and so the second time I had like headphones on I was watching a movie or something to take my mind off of it but it's a pretty loud sound if you're new to it but this is what my sixth seventh one yeah we change it every 10 days Yeah, we change it over 10 days. So I've already done it a couple of times. So I'm pretty used to it now, but it still gives me that like shocking feeling like the sound and then it does like

pinch a bit. It kind of like pokes in and then having a needle put into you kind of like pokes a bit and you know. So you have to change that every 10 days? Yeah, every 10 days. And the transmitter itself which is a little gray pop-in piece like I was saying it pops into like a socket on it basically when you're putting the Dexcom on you have a plastic holder and then the needle and then this somewhat bandage like material so it sticks onto your skin and then after that you have to put this somewhat like gray transmitter thing into it you have to just pop it in and then it stays locked in there and like I said that's the thing that reads the blood and that thing lasts for like about 60 days so about six times of putting it on and then the transmitter you don't throw away until the 60 days is up but the thing that hooks on to me the sensor that you can just throw away every time we found it's like I said like a band-aid material so for me I don't like ripping off a band-aid you know I don't either it doesn't it doesn't feel very good it's big too it's about a the whole thing itself because of the bandage added to it it's what like a two by four and it's longer vertically and then that it still hurts to peel off because it's like a ring so you kind of when you're going around it you gotta peel it up and then move up or down and then go around the entire thing. So it hurts a bit.

I usually like soak it in a bath, but we have heard like, I don't think it's available in Minnesota yet, but they just came out with something called the Dexcom G7. It's on ads on TV. It's only about the size of a nickel or a quarter and you can hook it on your phone as well. so you've learned a lot how did you start to learn about it well we went um to a wonderful uh hospital it's um in minneapolis it's the children's hospital i think i might have been there before for an accident i had but it was they were teaching you like 24 7 we stayed there for about three days to drop my blood back to a good range and they informed us every day they would like come in and different doctors would come in for a meeting like I think a nutritionist would come in at some point and someone came in to help us understand what insulin does the stuff that they give me shots for um to lower my blood or so that I can actually eat and so this um or eat something above my snacking amount of carbs and they told us how like without insulin the the sugars couldn't get like into my I think blood cells right and so they couldn't like help me produce energy and so they just get trapped in there and they wouldn't be used for anything and that's one of the reasons my body was trying to flush them out you know because um once like I get too much of them and so my body was like okay I've got a lot of sugar in here let's try and flush it out while you're going to the bathroom and so that's why I needed

insulin because that like unlocked the blood cells so that my sugar could go into them and they could actually make energy that is so cool and so when all these doctors and nutritionists and people were coming into your room at the hospital, you were paying attention. A bit of attention. Yeah, I was in the bed. I was between them. Like they sat next to me and then my parents were on the other side of me. And so I paid attention. I liked when they had a model to show me instead of just words. Like, like I said, the key one, they had a plastic model with like, like little chains and stuff just to show me how it's like unlocked.

and then with the insulin, or I mean how it's locked and then with the insulin it gets unlocked. Yeah, I like to learn that way too. If I can see it and then I can understand a little bit better. They even showed me some cool things, like some people that I may know that actually have type 1 diabetes as well.

Ooh, like who? I think they told me about a hockey player on Minnesota Wild, but I know a couple because I'm doing my passion project about type 1 diabetes and a passion project is basically something we do at my in my class at school my passion project this year about type 1 diabetes and like having people understand it and I did some research and I found out that Nick Jonas on the Jonas Brothers also had type 1 diabetes who was on the boys I think he was he was one of the judges on The Voice wasn't he yeah I don't think he was on it for too long but he was a judge for at least like a season or something and he actually is on the ad for the Dexcom G7 yeah it's kind of nice having people like super famous people I didn't even know had type 1 babies lots of people who have it that I had no idea about at the start so now I kind of have something in common with them. Yes. Right. I just interviewed a lady for the podcast. Her name is Dr. Kate Lund and she has a TEDx that she did. She talks about making your ordinary, the extraordinary. And sometimes we think like we want to be like other people, you know, and we want to fit in and we get embarrassed if something's different about us from somebody else, but she's like turn your ordinary into the extraordinary. And I think that's what a lot of these other people have done with their type one diabetes, right? Nick Jonas. I mean, he's an amazing singer

and it really seems like a really nice guy, like part of his life. I think created a company actually called, yeah, Touched by Type One. I think that was his company and I got a box in the mail. I think my mom ordered it and I think it was all free, but they had lots of stuff in it and had information about highs and lows but by that point I kind of already knew about them and then they had all this other cool stuff like cute and fun stuff like this tiny little cgm that you can stick on to your dolls so it's like your dolls have type 1 diabetes as well and that was from I think it's like a lot of companies supporting that company or he's supporting a lot of companies and there's like little canisters to hold your jelly beans or little pieces of paper where you can write down the food, the carbs and stuff like that. And so we can write it all down somewhere so that we can do the math because for every meal or a higher carb snack, I have to get dosed for it. So writing this down can help us like calculate the right amount of dosing. Like we already know, I kind of like memorized my dosing like breakfast I have to divide the number by 15 lunch I have to divide it by 22 and dinner by 19 and that changes um it hasn't changed in a while but my first um it was since I was so high they shifted it from um my first was 12 12 and 12 for all three meals of the day but then I shifted it again because I was kind of getting more on the low side they just

shifted depending on how my blood is so that I can stay in that range that I told you about. A thing that I dislike is the fact that you just gotta always be dosed, always be watched about your blood. Like, you can't, well, you can and you can't be left alone. Like, before I can give myself my own shots, my parents, like, always have to watch me or have someone, like, we have a babysitter, has to be someone who knows how to give me a shot just in case an emergency happens.

Right. Like, also, I'm not really that scared of this, but I'm kind of also scared of it because like, I don't know if it can give me a shorter life for having type one diabetes because if my blood is always going up and down part of my organs and I don't want that to make me have a shorter life than anyone else. and then going into a coma for if my blood sugar drops way too low I will actually go into a coma if my blood goes way too high it could cause organ shutdown which will also lead to a coma so it's kind of the frustrating part or the tricky part or the dislike part is that you have to pay attention to that all the time right and that's kind of a hassle yeah and like I have to wait now like for if I were to have a high carb something for example ice cream Dairy Queen ice cream is usually pretty high carb if I were to have just a medium blizzard like that would be we'd have to wait for like 15 minutes usually now because like I can go really high even after are giving me insulin and like something for me like people have their weak spots probably in it or they just can't stop it from going high or low I think um mostly for me though any like white flour will actually bring me up high even if we dose me for it I have to wait probably extra long to have it I have when I get my shot I have to wait like 10 minutes before I can eat but for like white bread or for like a dairy queen or a high carb ice cream probably 15 minutes when you're

at a restaurant it's tricky because you don't know when the food is number one what's in the food or how much food or how many carbs are in it but then also like when's it going to get to the table yeah because like we gotta like ask them because like if we dose me and i get dosed and then we and then like my food comes right then like i'm not gonna get a silver platter to package it up so that it can stay warm and also if i am get dosed and then i like wait for my food and then you usually want to eat within 30 time range it comes like way late like way late if something happens like oh we missed your order um we gotta start it over again like i have to reset like i have to do something like i have to make shift for the carbs so like right because all those things you have to think about though you do yeah because it's once you're dosed you only have a window of time to be able to eat you can't eat too soon because you have to wait for the insulin gets into your bloodstream but if you wait too late then she's going to start dropping because it opens up like she said the keys open up so that your body can absorb it because basically what type one is, is your, her bank pancreas doesn't work. So she can't convert the carbs that she's eating into sugar, which is what all food converts to eventually.

And so one of the biggest misnomers is that with diabetes in general, it's, you have to watch your sugar, right? So get low sugar stuff and, and it's really the carbs. It's not the sugar. So some zero or low sugar items actually have higher carbs. So she has to get dosed more insulin for that. So it gets tricky because it's constantly a balancing act timing wise, as well as, you know, doing the math on every meal that she eats, how many carbs she needs to be dosed for.

You must have to take food with you. You have to have some stuff packed. Yeah, like, well, definitely for like trips, we always packed like goodies. But now like we're packing plenty of stuff. And we have a bag that we call JDRF bag because we got it from JDRF, which is a diabetes association for kids and so um uh in that like we have extra everything tell us a little bit about JDRF there's a walk coming up or an event coming up so tell us a little bit about that on May 20th this year there's going to be a walk at the Vikings training stadium and people raise money and you can get like prizes too but like like we have a group and we raise money and then the money goes to help like JDRF raise awareness or help somehow make a cure someday for type 1 diabetes. So you're collecting donations or people can walk and Gigi you have a page set up I'm going to put that link of the show notes so if anybody wants to donate. How long do they have to donate to your team? I think until May 20th, right?

Yeah, until May 20th, until the walk, you can donate. Awesome. So that's giving people a couple of months to donate. Keep the donations coming. Support Team Gigi. Team Gigi from Minnesota, because there's lots of different states that are involved in this, which is awesome.

I appreciate so much that you were willing to even do this. I thought, hey, we want to do whatever we can to help support you. And your story and what you've shared with all of our listeners today is super inspiring and educational. And I just can't thank you enough for being willing to be on my show.

Thank you. And you're welcome. Before we head out and finish this up real quick, I want to talk to Mama Jess. I do.

I mean, it had to be a super scary thing. I mean, you can think in your head, okay, I got to have my kid tested for diabetes. There's like sugar stuff going on. You know, she's going to the bathroom a lot, all that.

But then you actually go in and get the news. What, what was, what was, what's it been like? It's, you know, it's, it's a lot to absorb because as Gigi said, we didn't have other family members that have this and it's an autoimmune disorder, right? So it's something that she didn't do anything wrong.

We didn't do anything wrong. it's just her pancreas no longer functions right and so it's shocking we actually had we tested her blood as she said at the well child check and I received a call at about 8 30 that same night and when when the call first came in I'm like that's so weird our doctor's calling us why would our doctor be calling us this late at night and when she said hey you know your results came back and yes I'm so glad that we did the test because she your daughter has type 1 diabetes I was like, oh no, you have the wrong phone number. This is, this is Jessica. This is, you know, no, no, no, Jessica. We were certain. I said, I think you need to run the test again, because no, it can't be, it can't be the case. And even though motherly gut instinct said,

have her blood tested, it was more out of just, oh, precautionary. Right. I didn't actually expect the results to come back what they came back. And so then you jump into fix it mode, right?

What do we do to fix it? How can we, how can we get things good? Obviously we're concerned about her. She was very, if you want to call it high functioning type one, if there is such a thing, because her numbers were through the roof. And so they were just really surprised that she was functioning as well as she was and that she wasn't in, you know, a DKA or something like that.

You know, you're, you're just going through information overload and it's, yeah, it's, it's a lot and coming from someone who never spent more than five minutes in a grocery store. Cause I knew where the aisles were that I needed to grab my stuff and get out. It was something that was a huge life change for us as a family, reading labels constantly and, and just getting educated about, Oh, I didn't even know this aisle existed in the grocery store, but thankfully Gigi has a, an affinity for cooking in general.

And she also has been very helpful with trying to figure out things that we can do that, you know, is quick and easy, but yet still healthy and trying to get back to our daily life with this new norm that we, that we deal with. Right. Right. I'm just really glad too, that when you brought her to the doctor, you're like, no, run the labs. I think there's something and you're trusted that mama gut and that instinct of there's something. And even though it wasn't the outcome you were hoping for, thank goodness you did that. You know, I think that's the biggest, you know, takeaway, at least from my perspective for other, other parents and other caretakers is that, you know, listen to your instinct, listen to your gut, because, you know, when I,

when I told the doctor the symptoms, she's like, okay, well, we can, you know, we can just kind of track and trend, right? And I'm like, no, I don't want to track and trend. I just want to have her blood tested. It's simple, right? And it's frustrating knowing what I know now about type one and then other things that I've learned just through dealing with blood tests and things.

There's so much that you can learn from testing a child's blood and they don't do it routinely. And I don't know why it's just, um, it's frustrating because so much of the, so many of the things that could be prevented or at least a less intense outcome, right. If you can find out sooner, um, could be found out by testing the blood and, you know, it's not, they don't do that preventative medicine or preventative activities.

But we can request it and we can advocate for our kids and we can make sure that if we're not feeling comfortable or right about it, we can, we can push it. We got to be our own advocate. Yeah. For our kids, for sure.

Absolutely. Yeah. But for our fellows, for that matter, I mean, if it doesn't feel right, you know, it's you need to question it. And and ultimately, you know, I could have ended up being wrong, could have, you know, but but there's nothing wrong with having that that second check.

Yeah, absolutely. All right, you guys. Well, this has been so great. I really appreciate you guys coming on and sharing this message so that we can get it out to more people, more parents and more kids.

Thank you so much, Jackie. Bye. All right, parents, to learn more about the Juvenile Diabetes Research Foundation, JDRF, you can go into the show notes. I've got a link there for you and also the link to support Gigi's team, JDRF One Walk Twin Cities 2023.

You can click on that link and go donate to support Gigi's team. We've also got links in the show notes for the Dexcom that Gigi was talking about and JellyBelly.com. So you can check out those JellyBelly candies.

Thank you also to Children's Minnesota Minneapolis for the pediatric care and support that you've provided Gigi and her family and so many other families with type 1 diabetes. And I've also included the link in there for Nick Jonas' Beyond Type 1 website. To learn more about how you can become the confident leader your kids crave you to be, head over to NoProblemParents.com.

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