From Annandale, New Jersey, USA:
My daughter, recently diagnosed with diabetes, also has Down Syndrome. I know of no other child with both conditions. My daughter has very high blood sugar levels, which we're trying to control. Could her metabolic rate be affecting the efficacy of the insulin? I also wonder if she shouldn't be examined on a different "level" because of the Down Syndrome. I don't know of any doctor that has treated both conditions. I mentioned it to my endocrinologist in Morristown, but he seemed to think it a non-event. I'm not so sure. She also has two leaky heart valves from birth. Do you have any advice?
We have several children, and also several young adults, with both Down Syndrome and diabetes. I am somewhat surprised that the large diabetes group at Morristown does not also see this. We and most others make individual treatment goals for each child and family. but the general rules about diabetes apply to those with Down Syndrome as well. Ideal control optimizes weight, food/meal planning, activity, frequent blood glucose monitoring and uses a basal-bolus approach with mealtime analogs plus either Lantus or Levemir as basal insulin. All such decisions should be based upon A1c levels, frequent monitoring and frequent follow-up with the diabetes team. There is a higher risk of Hashimoto's thyroiditis and thyroid dysfunction in Down Syndrome (and also with type 1 diabetes). There is a higher risk of celiac disease as well. There is probably also a higher risk of osteopenia and vitamin D deficiency. All should be monitored and checked periodically.
I would guess that if you went to the parental blog sites of our web site or other diabetes sites (ADA, JDRF), you would be able to locate other families with Down Syndrome and type 1 diabetes quite easily.
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