From White River Junction, Vermont, USA:
I am a type 1 diabetic, diagnosed when I was 13; I am 29 now. My six year old daughter has been having fluctuating sugar levels the last couple of years. Two hours after she eats, she runs anywhere from 145 to 180 mg/dl [8.1 to 10.0 mmol/L]. She has occasional high fasting sugars, 80 to 135 mg/dl [4.4 to 7.5 mmol/L]. We have done three A1cs and two of them came back elevated, while the other was on the high side of normal. My daughter also has a complete IGA deficiency and has tested positive for one of the diabetes antibody's at the Joslin clinic through the TrialNet study. At Joslin, they said it was the one antibody they see most commonly in children who develop type 1 diabetes.
My husband also has an uncle with type 1 diabetes and I have grandparents and aunts on both husband's and my side of the family. I am looking to get an answer of how likely my daughter is to get type 1 diabetes. She is very small for her age and tiny; she is in the 10th percentile for height and weight and is slowly going down on the chart. Everyone thinks she is four, but she will be seven in January. She is sick a lot. When she is sick, her blood sugars run from 200 to 250 mg/dl [11.1 to 13.9 mmol/L].
Being a diabetic myself, I think I know she will most likely end up with it, but I need to hear that from a medical doctor. I have taken her to our facility up her in New Hampshire to see the endocrinologist, but they have made it clear that unless she has actual diabetes that needs to be treated, they don't want to see her back. My husband and I were made to feel like we were hypochondriacs and that just because I had it didn't mean that she would get it. I understand that, but she has a lot of things that tie to diabetes and I feel I just need some closure of this, to know whether she probably will end up with it or not. What should we do next?
It is difficult to make an exact diagnosis on the Internet, but it sounds like this is a pre-diabetes condition you are describing with positive antibodies and frequently abnormal blood glucose levels. I would get another opinion from another pediatric diabetologist since your daughter needs close follow-up, decisions about when and how to monitor blood glucose levels, etc. Her abnormal growth also suggests that perhaps she may have another autoimmune problem such as Hashimoto's thyroiditis, Addison's disease or celiac disease. This should also be investigated thoroughly and followed sequentially. All of these can be checked with specific blood work and antibody levels. There is some theoretical reasons for avoiding wheat/gluten not only if she has celiac, but this may also help her "fight off" type 1 diabetes.
In any case, go seek another opinion. If you came to our center, then we would set up specific follow-up schedules, help to decide how and when to monitor her blood sugars, what should be done with her food and snack choices and which antibody blood test to check and follow sequentially. I suspect most of the other pediatric diabetes centers, including Joslin, Massachusetts General Hospital, the University of Massachusetts, Baystate, Dartmouth, and Toronto would do the same.
Original posting 21 Oct 2006
Posted to Diagnosis and Symptoms
Last Updated: Tuesday April 06, 2010 15:10:10
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