T1D mom with possible T1D 2 yr old?

Hi everyone,
I am so glad I found a place to share concerns and seek help. I had no idea there was something like this. I’m reaching out because im concerned for my 2 yo daughter who has been showing signs of fatigue, lack of appetite, increased urination (not making it to the potty). Yesterday she had a special treat of a donut with her Dad and immediately after eating asked to lay down because she didnt feel well. My husband was concerned and asked me to come home from work and check her bg using my glucometer. I did so and her bg read 374! This was 2 hrs after eating the donut. I called her pediatrician who recommended that we take her to the ER. We did and they used their device to check her and she was 108. However, when I checked her at the same time on my device, it was 260! I decided to check myself and my bg was 120 on my glucometer and 113 on my dexcom ( not much of a difference). We were admitted and they took some blood from her and sent it to the lab and it came back as 98bg. I checked her on mine just to be sure and she was 157. I asked why there was such a big difference in numbers and they said that my glucometer is accurate for me and not for her?!? Btw…it is a generic cvs/walgreens glucometer. Anyway, I am concerned that my daughter could possibly be in a honeymoon phase before getting T1D but I dont want her to feel awful like I did before I was diagnosed with mine. Here are some of my questions that I hope someone on here can answer:

  1. Is there tried and true researched based, no risk ways to prevent the onset of T1D?
  2. Is there a reason my glucometer would not be accurate for her?
  3. Can I set her up on a dexcom to monitor her bgs even without a diagnosis?
  4. Can I have more than one dexcom on my phone?
  5. Is there support for moms with toddlers with T1D?
  6. Is there support for moms with T1D who have children with T1D?
  7. Anyone know of the best pediatric endocrinologist in the bay area?

I know this is alot but im kind of freaking out and staying informed is helping me to stay calm. Thank you to anyone who can answer my questions.

1 Like

Hi @Georgigirl and welcome to the forum. I don’t know of any ways to prevent onset of diabetes, but practical measures such as overall healthful eating, physical activity and managing stress - good health practices in general - might give one an edge if they do develop it: the healthier you are when you come down with something - even a cold - the better the body’s ability to fight. That’s not a medical perspective, just my own, but hopefully it applies.
The only thing I can think of to explain the disparity in the readings is, perhaps your daughter was holding the donut and some of the sugar was on the finger that was used for the stick; and the hospital used another one. I know they clean with alcohol first but maybe…
Meters are supposed to meet standards of accuracy before they are put on the market but I don’t know if they area approved as accurate for all ages. I use Dexcom too but have a One-Touch meter for fingersticks. That brand and Accuchek have worked well for me but there are other name brands you might look into as well to see if they might be more accurate for such a young child.

There are some posts from parents with toddlers and even infants - including some T1 patents with a T1 child. I haven’t seen any hashtags so you’ll have to scroll through the Parents topics to find them.
I don’t know if this is a worthwhile idea or not, but back in the day we peed on strips to see if sugar was spilling into our urine. This was before fingersticks so is old- old-school, but I’m wondering if that might be a way to get an idea what’s going on, without multiple fingersticks. Thoughts anyone?

I guess time will tell about the diagnosis, but thankfully you know what to look for. Check the Resources tab for resources in your area - there may be local support groups for you.

Wishing you all the best. Stay in touch.

@wadawabbit thank you so much for all the information! I will look into it! The pee sticks are a great idea!

@Georgigirl Hello Georgianna, and a warm welcome to the JDRF Community Forum! I for one do not do not envy your situation, I understand your concern and this is probably the best place to come to share concerns and receive suggestions and tips from other people affected by diabetes - not professional medical advice.

An individual with TypeOne having a child, or grandchild, also with T1D is unusual but not unheard of; note that there are other “diabetes types” that resemble T1 and are often called T1D. The ADA SOC [Standards of Care] for Professionals guides physicians in making the proper diagnosis - but in the long-run, it is still diabetes.

I’ll offer below some of what I’ve learned for each of your questions.

  1. Is there tried and true researched based, no risk ways to prevent the onset of T1D? We are very close to this point - some research is available now in the “Resources” tab above.
  2. Is there a reason my glucometer would not be accurate for her? It is unlikely if you washed her fingers well, but possible. our daughter who worked ER has told me some instances.
  3. Can I set her up on a dexcom to monitor her bgs even without a diagnosis? YES, if you have a spare transmitter, you could use your own - diabetes diagnosis is not required. Some endocrinologists have professional versions specifically designed for people like your daughter.
  4. Can I have more than one Dexcom on my phone? It may be possible; you would need to set up a Dexcom account for your daughter. It would be a simple setup on your husband’s phone.
  5. Is there support for moms with toddlers with T1D? The JDRF Chapter near me includes subgroups for children and teens all around this bay; in fact, today there is a picnic/outing for T1D kids. Which “bay area” are you?.
  6. Is there support for moms with T1D who have children with T1D? Yes, use the “EVENTS” tab above and click on “JDRF Near You”.
  7. Anyone know of the best pediatric endocrinologist in the bay area? ???

Hi @Georgigirl , welcome to Type One Nation. You already have great advice from @wadawabbit and @Dennis so I’ll just tag along and add:

No there isn’t a sure fire way to prevent T1 but there may be clinical trials (with some degree of uncertainty) running you could look at.

Your finger stick and CGM are inherently inaccurate so +/- 50 mg/dl compared to a clinical blood test is plausible. No there is no possible way your bg meter is only accurate for you.

I agree a doctor could put a clinical CGM or you could use yours as a test/trial.

No a single phone can’t talk to 2 G6 transmitters so you’ll need a second phone.

Yes we have support here in out resources tab, and at local JDRF events, and at our partner site Beyond Type One. A friend of mine is a T1 mom with a T1 daughter. Please reach out I can make an introduction

We can’t make direct doctor recommendations here but the JDRF local chapter might get you some leads.

Regarding the Dexcom app - when I was on a Tandem pump, die to personal prefence I mainly used the T:Connect app, but I did run Dexcom in the background. If you want to see your daughter’s Dexcom numbers on your phone you could link her sensor, and use t:Connect for your own. That’s assuming you use a pump. If you’re on injections you would need to carry the handheld receiver.

Hi Georgianne @Georgigirl

My experience with glucose meters is turbulent. Four years ago, I was pregnant with my 5th child and had gestational diabetes. I was put on way too much insulin. I had daily lows that didn’t register as low on my meter and my doctors thought I was lying to reduce my amount of insulin. After a lot of prayer and crying, I looked up the reviews on my Walmart blood glucose meter. Sure enough, many reviews stated that it was 80- 120 off. I spend a lot of money on a new meter and finally had glucose numbers that matched the lows that I was having (my doctors still didn’t believe me, but that is a different story) The inexpensive glucose monitors use an old technology that isn’t accurate in everyone. Right now I use the Contour One and have much better results.