Toddler with Atypical Diabetes

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?

Thank you !!

I’m sorry you and your family are faced with this difficult situation. It does seem puzzling.

It’s my understanding that testing negative on the antibody tests is not conclusive for ruling out autoimmune type 1 diabetes. In other words the antibody tests can be false negatives.

Do you know which antibodies he was tested for? I believe there are six that can be tested for but it’s common for many doctors to only test for one or two and call it good,

I compliment the doctor for getting your grandchild on a Dexcom CGM. That is prudent. This sounds like a tough case and I’m not certain what else can be done. Vigilant monitoring seems to be the best answer for the time being.