My grandson (3 y/o) started exhibiting occasional low blood sugars back in July 2017. Over time, he would start having highs. His endocrinologist said presented symptoms were a bit baffling and he consulted with other children’s hospitals about him. The result being… he has diabetes…but, they did not know what type. He was tested for antiibodies and then for MODY, both of which came back negative. (His father, my son, is a Type 1 diabetic, dx at 15 y/o).
He is a patient at a Children’s hospital in Rochester, NY. All his doctor has done at this point, is prescribed a Dexcom (life saver!!) and “watches” his A1c. HIs A1c, overall, is at the high end of normal. His extreme lows (40’s) balance the highs. When he has a low, we treat it, but when his count is high…we wait for it to go down. Luckily, his highs are not crazy - they are usually under 200, but, have gone above that from time to time.
My concern is, at what point do they decide to do something??? This has been going on for 18 months. There must be other toddlers out there like him, I would like to know how their doctors are treating atypical symptoms?
Hi Dinese @gerette64 , I must assume from some of what you wrote that your grandson was also prescribed insulin, a dosing regimen, etc…, in addition to a CGM. It aso appears that your son should be conversant with insulin, activity and food management and he should be able to at least provide knowledgeable observation to your grandson’s physician. One suggestion, set the threshold for the DexCom “low alert” at a higher number and also set the “Falling Alert” to let you know whenever your grandson’s BGL is falling at 2 md/dl/min or more. With settings like this, I have not had a hypoglycemic event since I began using a DexCom G5. In my humble estimation, his medical care team should have already taken action. When I was diagnosed in the mid 1950’s I was given a prescription for two large stainless needles and one glass syringe, a sample starvation diet and told to go to the hospital lab a couple of times a year for blood sugar testing; everything else I had to figure out on my own.
Out of curiosity, was your son also checked for MODY? MODY, unlike T1D is an inherited condition and frequently not recognized even by pretty good endocrinologists.
@gerette64 hi Denise, well, in my unqualified opinion, “they” are doing something: with the CGM and A1c testing, monitoring blood sugar is the only thing to do right now. Since he has lows, adding insulin treatment could kill him. I hope they have also tested for other endocrine abnormalities such as adrenal gland disorders, or kidney disorders, and other maybe allergic disorders.
if his blood sugar is consistently high, or relatively high with low peptides, the next level of treatment is probably insulin. or if high sugar with high peptides, with probably metformin…
Hi Dennis…No, my grandson has not been prescribed insulin / dosing regimen. He only has the CGM and A1c monitoring. My son has been on a CGM for years, and luckily has strict control of his numbers. Thankfully, my grandson will learn from him. My son was tested for the five most common types of MODY, to which he tested negative. (My grandson was tested for a broader range of MODY types.)
Thank you for your suggestions with the threshold settings on the Dexcom. Wow, what you had to learn on your own when you were first diagnosed!! Amazing how far they have come with treatments.
Thanks Joe. I guess I know there isn’t to much they can do at this point, but, it drives me crazy when he has a high blood sugar - and we do nothing. As far as I know, they have not tested for any of the disorders you mentioned, but, I am going to ask my son about that. I appreciate the response!
Do they ever have you test for ketones? My daughter is 3.5 and because we give her insulin after meals she is regularly over 250 in the first hour after eating. She’s fine, and always comes back into range. She had her highest high ever today of 434 and her DNE was very reassuring that no damage was being done if ketones weren’t present. And then she went down to 71 in 2 hours.
@gerette64 hi Denise, you could add mild exercise after a meal, such as walking. 15 minutes can help and it can be fun. You can try to avoid fast acting carbohydrates by looking up “glycemic index” but I wouldn’t necessarily avoid carbs entirely because he really needs the fuel to grow. You are doing what you can you have awareness. Cheers
Hey any update on your grandson, this is literally the exact same story for my daughter who is 24 months old. We have to wait till she is 30 month old for Trial Net to do the antibody testing and like you the only thing we are doing now is monitoring but without a CGM. We test regularly, over the summer she was pretty high some days she hovered around 120-150 but a few times she was 200+, highest was 275. Since August her numbers have dropped to “normal” but occasionally we still see those elevated numbers, most recently was 130 before dinner and 187 several hours after breakfast. The doctor really doesn’t want to talk about it being diabetes at this point but I just know something is not right. Hope everything is working out, please let me know what the current status of his diagnosis
I wish I could tell you I have an update, but, I don’t. Still just monitoring him. His numbers now hover over 100 most of the time. He goes high after eating, but ultimately he comes back down after a while. I had contacted Trial Net about him, but they said there wasn’t anything they could do to assisting with his situation or suggest anything that might be going on. They did a group email with us and the University of Chicago - not knowing that we had already had him tested there. But, the University said they would open up his file again and take a look. The University had gotten my grandsons doctors information and releases were signed to share information, but, we haven’t heard anything yet. That was a few months ago. I wish you well with your daughter, and that you are able to get some answers. If you get some answers, I would so appreciate it if you would share them with me - and if I get answers on my grandson, I will definately be happy to share them with you.
As far as I know, they have not tested for any of the disorders you mentioned, but, I am going to ask my son about that. I appreciate the response!