Hi my name is Andrea and my 5 year old granddaughter Jayda was just diagnosed with type 1 diabetes on February 2nd and it has been a nightmare since that day. She was rushed to Marshfield children’s hospital in Wisconsin because her blood sugar was over 650!!! She was not allowed to eat or drink for 5 days!!! But the worst thing is she had a central line put in her inner thigh which never worked!!! She got out of the hospital and had to be rushed back the next day because she got a bacterial infection in her blood from the central line and a blood clot! Her sugar is crazy even though I watch every thing she eats it’s either over 500 or drops rapidly to 200! Please help me to get to know this disease better so I can help her be my little princess again! She is always so sad now and I don’t want that to be her life!
hi @NanalovesJayda welcome to the forum. We are not professionals here we have Type 1 or we take care of someone with type 1 so all medical questions should go to your doctor or medical team. Im sorry to hear you have had such a rough time. Type 1 is a lifelong learning experience. Blood sugar “control” in children can be very frustrating.
it will take about a year before you learn the new language and all of the things that work well and all of the things that don’t work so well. go easy on yourself. learn what you can but do not despair.
I urge you to work with a diabetes educator, they will be a big lifeline for the first few months. I also recommend the book “Think Like a Pancreas” you can find and buy it on amazon.
Blood sugar happens, even after 44+ years experience treating my own type 1, I still get high and low blood sugar. I learned there is no such thing as steady, even, “control”. All you can really do is take a look at the blood sugar and the insulin and make the next best decision. This disease is self-managed, doctors are more like coaches and the people with type 1 are often in charge of the decisions and medicine doses. For a little while, most doctors are more concerned with low blood sugar (below 70 mg/dl) and are much less concerned with higher blood sugar.
The technology today is a million times better than when I was diagnosed, in a few months I recommend taking a look at things like a continuous glucose monitor (CGM) and if you think it’s the right move, an insulin pump.
one last thought: I don’t watch what I eat. I count carbohydrates. There is nothing your granddaughter “can’t eat” if she learns how to use insulin. I eat reasonably, and try to make good decisions but I eat candy on Halloween and I always try a little birthday cake at parties, especially if it’s ice cream cake, but I digress. . The important take-away is that she will figure out this insulin thing and be able to enjoy eating and exercising and sports and anything she gets interested in on her journey to becoming a grandma (or president, or scientist) herself…
@NanalovesJayda Hello Andrea and welcome to the JDRF TypeOneNation Community Forum!
I agree with what @Joe said and will add a little bit more. For some really helpful information, I suggest that you explore “Resources” on the JDRF website [jdrf.prg ], and by clicking the Resources Tab at the top of this page. Here is a link to Newly Diagnosed: Newly Diagnosed Type 1 Diabetes - JDRF Be sure and register your name and request the children’s Gift Bag full of some wonderful stuff and information - and it is free to you. Keep in mind that each of us is a little different from other people with diabetes so as you read and learn here in this Community not everything you see will “fit” Jayda. For instance, when I was diagnosed in the 1950s when a simple blood sugar test in a hospital took two days, my BS reading was 1,700+, yet I was allowed to eat and drink regular meals; BTW, good hydration is absolutely necessary for effective diabetes management. In time, and I’m still learning after seven decades, Jayda will learn that the key to feeling good and being active enjoying life is somehow finding the balance, FOR HER, of food, activity and insulin - and this balance will shift from time-to-time especially as she is growing and evoleves into adulthood.
You may want to meet other people living with or caring for a person with TypeOne diabetes. JDRF has Chapters around the country which have gatherings and events that are very helpful and id an opportunity to meet others - a meeting I attend at least monthly is made of often of several grandparents wanting to talk and learn. On the main JDRF page look under “JDRF Near You” Heer is a link for you: Illinois JDRF Diabetes Chapter Support
Good luck to you, and don’t hesitate to ask questions here. The JDRF TypeOneNation Summit is an awesome event if you can find one to attend.
So sorry to hear that you’ve had such a rough time! It takes time to adjust to a new diagnosis, especially diabetes, but hang in there- your granddaughter will make it. You’ll find a new normal and I bet once your grand daughter starts to feel better from taking insulin/recovers from her infection she’ll be a lot happier!
It’s very likely that your daughters body is adjusting to having insulin again and the infection has likely made her already difficult BG numbers worse. Sickness/infection/other medications can really mess with blood sugars. As she recovers her numbers will likely become more stable. I’ve also heard that blood sugars can be wild in young kids- you should search the forum and talk to your doctor, I bet they’ll have tips or advice for monitoring your grand daughter’s blood sugars.
Don’t worry too much if it takes a few months to figure out the correct doses- it took us about 2 months to find the right doses for me when I was diagnosed. It also takes time to figure out how your daughters body reacts to different foods.
Have you heard of a CGM- Continuous Glucose Monitor? It’s like a patch that monitors blood sugar levels. It sends blood sugar results to your cell phone (or insulin pump) every few minutes so you don’t have to keep poking your finger every time you want to test. It can also help a lot with figuring out how your granddaughter responds to different foods and you can set alarms so that it’ll alert you if your granddaughters blood sugar goes high or low. Dexcom and Libre are the main companies that produce CGMs. You should check it out 
PS: I second everything that Joe and Dennis have said. They’ve got a lot of experience and good advice
Hi @NanalovesJayda . You’ve already gotten a wealth of information. The one thing I would add (apologies if I missed it) is tracking: keeping accurate records of what she is eating, how much insulin you give and when for both; any other medications she is getting; how she’s feeling; and activity levels/exercise. Those will help her medical team figure out what is working - and eventually you will be able to do that as well. You can use pencil and paper or there are a number of apps available - most of them free. Some popular ones are Glooko, MySugr, SugarMate and Mynetdiary (that last one comes with an annual subscription but you can try it out before you buy). Glooko connects with your doctor’s office if they are set up for that. Otherwise they do the same thing overall and it’s mainly a matter of personal preference.
Think Like a Pancreas is an excellent resource - I read it for the first time a couple of years ago and learned some new things - and I celebrated 60 years with Type1 last year! It’s a surprisingly fun and easy read, and Gary Scheiner - the author - lives with Tyoe1 and works in the field so he has a first hand understanding.
Your doctor may discuss insulin pumps with you. Yes, even small children can use pumps. I have one and they are great, but they won’t cure diabetes and work is involved to get the benefit. I mention this because they are an investment (you typically keep one for 4 years before the warranty expired) and a person needs to think seriously about the commitment. I wouldn’t want you to make a snap decision in a panic over what is going on right now: will take some time for things to get somewhat settled - this is normal so work closely with her endo to make adjustments so when the roof does come up you can discuss it calmly.
I know it’s early - in the diagnosis and in the year - but make a note to yourself to look into diabetes camps. I attended one a few summers when I was a child and it was loads of fun. Here’s a link to camps coming up in 2024 - if that’s too soon for you it will give you something to think about down the road.
https://diabetes.org/tools-resources/get-connected/camp/find-a-camp
And there’s is one in Wisconsin that takes children as young as 5!
The only other thing I’ll add is, find an endocrinologist who specializes in Tyoe1 - not all do.
We cannot give medical advice here but we do share things we have found worked - or did not. And we’re happy to listen if you need to pour your heart out. Things will get better. All the best to you and keep us posted.
Thank you all so much for your kind words of wisdom. I know it will get better but some days it feels like it gets so much worse. Jayda was such a healthy child and now she spends most of her days in a hospital bed. I have looked into an insulin pump and dexcom just have to wait for my insurance to either approve it or deny it but thank you all again
Wow Dorie!
Well done - just hit 53 yrs myself and thought that was a really longtime. You’re doing so well, you should be proud! Know how it is but have adjusted and gotten used to it myself. But I am tired.
All the best to you,
Sheryl