I’ve been lurking a bit and wanted to introduce myself. My 3.5 year old daughter was diagnosed about 7 weeks ago. The first few weeks were a whirlwind but we feel fortunate to have acclimated to managing our new normal fairly well. We also caught it early and she wasn’t yet in DKA.
We just received our dexcom G6 and have an appointment with our team next week to get it up and running. We are in the process of insurance approving a tandem to go with it which was denied today because she isn’t 6 years old. I expected the initial denial but I’m a little bummed since it’s the end of the year and it looks like we will be paying full price once our deductible resets in 2019.
She very much will benefit from pump therapy- she’s a little guy whose numbers have been all over the place lately but being restricted to half units leave our hands tied. Our endo is almost ready to pull the .5 unit of Lantus she’s on currently as it’s appearing to still be a bit too much for her.
Any tips of other parents of toddlers for using the dexcom or tandem (eventually) are so welcome, we are hesitant about putting hardware on her but it’s been made really obvious it’s what is best for her overall health.
Anyway, thanks for being an amazing resource for me these last weeks. It does a world of good to not feel alone.
My name is Cassidy and I am 13 years old but I also use Dexcom but I also use OmniPod instead of Tandem. I got diagnosed when I was 6 years old so I kinda understand the situation your daughter and you are now in Some of my favorite places to set the Dexcom is on my upper stomach or lower I have also heard a back of a arm can go well too! Feel free to ask me any questions if you want I just thought I would let you know some sites I prefer.
Hi Flora @Fiora, first off, A Warm Welcome to TypeOneNation! and I’m happy that you took the step to join.
I’m also happy hearing you say that you are past the initial “whirlwind” but I will caution you about changing your family life completely to what you are thinking your daughter might need. I’m in my 7th decades living with my diabetes and have found that real success has been achieved by those kids who lived real, active and full lives and did just as other children their ages while making diabetes “fit”.
The use of a continuous monitor is a good move and the G6 appears to be the very best of many choices. But at this point, I do not think moving to a pump would be advantageous. Based on her basal (Lantus) use of 0.5 units per day means that her pump would need to be set to deliver an average of less than 0.021 units per hour [the lowest any pump will deliver is 0.025 units per hour. The primary advantage of a pump when used by a person with TypeOne is to have basal insulin delivered a rates that wary throughout the day. Maybe in a couple of years after she has past her series of “honeymoons” a pump will be advantageous; I waited 45 years before my first pump and I’ve lived a full, active and productive life. The Tandem t-Slim x2 is an awesome pump which I strongly endorse.
I suggest that you might want to click on The “Events” Tab at the top of this page and select “JDRF Near You”. This will allow you to find a JDRF Chapter near you and also events that will let you meet others in situations similar to you; almost every month at the meeting I meet a parent of a “newly diagnosed” child to whom we offer encouragement - this is not the end, but rather the beginning of a new life-long adventure for your daughter.
Thanks for much for the input! Her endo is actually the one really encouraging her to start with a pump, I will have to ask about this at our appointment Wednesday. We are perfectly happy using her pen currently. 100% agree with you about being a kid first! That was actually the first book I read after her diagnosis- “Kids First, Diabetes Second” which I would highly recommend.
If you are locked out of t:slim until she is 6, AND if you are comfortable with technology and T1D management, consider looking into a DIY artificial pancreas. Search internet and Facebook for Looped and Looped Diabetes, and see LoodDocs at https://loopkit.github.io/loopdocs/. People are using G6 plus hacked pumps on children as young as 2. Theses are the people that are driving a lot of the changes in technology. Best wishes!
Wow, that is impressive! I don’t think we will be shut out until she’s 6, I think that’s just the initial denial reason. Her Endocronologist’s office ready to appeal, they believe she will have one within 6 months. I am very interested to see what they have to say I regard to her low basal rate needs. I think they are going to stop the lantus altogether if she wakes up low tomorrow morning, she was 54 today.
My daughter has T1D. She is in kindergarten, diagnosed when she was almost 3. I agree with what someone else said about holding off on the pump. My daughter wears Dexcom and has Tandem T-slim. We love it and I do recommend it. However, it sounds like your daughter uses so little insulin, in my opinion, it wouldn’t be worth it. It has a minimum fill of around 100 units for a 3 day use. you would be wasting a lot of insulin.
I wish you luck as you navigate being a T1D parent. You can do it!
Thanks! That’s helpful to know to ask about as well. Because she uses such a small amount we’re wasting it in other ways right now, her vials look practically brand new when we have to discard them. The novolog pen is actually the best so far, she’s had just one cartridge so far for 25 days- so a 3 month prescription is going to last her more like 5 and that’s with priming the pen with 2 units before use.
A pump is being recommended so strongly because of her small needs- we have been running into issues where we need to change her carb ratio and the half units are too much. So she will be running high at lunch because she didn’t get enough at breakfast but if we adjust to give her a half unit more- say 1:23 instead of 1:30, she is low. Right now we are doing two extra BG checks at am snack and her bedtime and correcting with snacks.
She is doing great and I don’t expect to ever have this figured out, the tslim looks like a good option for her at some point, maybe that’s not now. We will start using the dexcom tomorrow and that alone is going to make a world of difference.
Hey Flora my daughter was diagnosed at 1 1/2 years old she is now 9 years old. She was the youngest in our area. We started her on a pump(animas) on her second birthday. Best thing we ever did her diabetes are controlled well and seeing this will be her every day normal it has helped her being comfortable with wearing a pump. We don’t restrict her if anything she plays sport swims gymnastics rides four wheelers and dirt bikes she is a very normal child. She now where’s an omnipod. We do not have her on any cgm because we don’t ever want her being tired of these things on her and I feel like those high tech gadgets are for older children. But as a type1 parent and a parent of type1 child the pump and you teaching her indendence and control of her diabetes will be the best thing you ever do.