From Ann Arbor, Michigan, USA:
This summer, my nine year old, who has kidney problems, had high blood sugar levels were and she was hospitalized. They were in the 300-500 mg/dl [16.7-27.8 mmol/L] range for a couple of days, but always came down quickly, and she has never gone under 80 mg/dl [4.4 mmol/L]. They originally thought that she had type 1 diabetes, but her anti-GAD and islet cell antibodies were negative, and her hemoglobin A1c was in the normal range. In addition, since her blood glucose levels normalized after a few days, the doctors said that it may have been stress-induced.
She was sent home, and we were told to watch her and repeat the tests in three months if she shows any symptoms. Since then, she only been high one week when she was sick. Otherwise, her levels have been considered normal. She did lose about 5 pounds and was eating and drinking a lot at the time she ran high, but that has also normalized.
In the meantime, we saw her nephrologist for her annual exams and he suggested that since she has a strong family history of kidney problems and diabetes, there is a type of MODY which shows up in childhood. She is not overweight and her insulin is not high, so it was not type 2 He told me that the pancreas often smolders for a while with this type of diabetes, so she could go high, then normalize like she did. He also said that there isn't any test to see if she has it, and the only thing I can do is what I am doing and keep an eye on her for symptoms. He seemed to think if she does have a problem with it, it will show up at adolescence and until then, she might continue to show high sometimes and then normalize again as she is doing.
Should I get an opinion from an endocrinologist at this point or should I wait as he suggested to see if she shows symptoms? I think if she had a consult now, her A1c and blood glucose level would show normal, and they wouldn't diagnose her. It's hard to wait and wonder if she will develop MODY or diabetes or not. Is it true there is no way to determine if she has this?
There are some research tests for different types of MODY. I would suggest you consult with a pediatric diabetologist who can review the details about your child and then map out a plan for follow-up so you are not so worried.
Original posting 22 Sep 2003
Posted to Diagnosis and Symptoms
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