From Wisconsin, USA:
My 5 year old son was recently diagnosed with Type 1 diabetes. His blood sugars were originally 253 and he was spilling ketones in his urine. He was put on NPH insulin. Then they took him off it before arriving home and told us to check his blood sugars to see if they would rise again. Since arriving home his blood sugars have all been in the normal range. While at the hospital they took a test to check for antibodies that would have "turned on" the diabetes. A week later they called us back to tell us that the antibodies were not present so our so now does not have diabetes. We are very confused as to why they first would diagnose him with it and now change their minds. What would make my child's blood sugars go so high that he would be spilling ketones in his urine? Is there any disease that would cause this or any illness that we should be watching out for? Is there a chance that he will develop diabetes at a later date? The doctors have told us that they can not explain why or what is going on.
The story you give about your five year old son is indeed an unusual one; but one that is heard now and again and one that researchers are still trying to explain in more specific terms. First of all, based on what you say, I think that your small son does indeed have diabetes and that at some time in the future, perhaps triggered by an intercurrent infection the need for insulin will return at least for a time.
The question then is what kind of diabetes may he have. If the antibody tests are negative then he does NOT have a very early form of Type 1A or autoimmune diabetes. However he could be an early Type 1B diabetes. In its usual form this presents just like Type 1A with ketoacidosis and insulin dependance; but the antibody tests are negative and the need for insulin may last only a few weeks. Type 1B occurs in over half the new onset cases in Hispanic and African Americans and is much less common; but still does occur in Caucasian families. No one yet understands exactly what is going wrong in these instances so there is no specific test to be done and in any case it will probably turn out that there are a number of distinct variants. There are other laboratory test that could be done; but I think it would not be right to subject a 5 year old to them unless there was some real prospect of benefit.
In the absence of any family history or of a story of associated problems such as deafness I would try to accept that your son is an early case of Type 1B Diabetes. This means that he may need insulin again especially during an infection; but that he is unlikely to become dependant on insulin and that his life is unlikely to be compromised by this problem.
I hope this helps, and in the meantime I think you need to talk to your doctor about keeping some testing materials at home so that you can pick up glucose in the urine or a high blood sugar early enough for him to get more insulin if he ever needs it.
Original posting 14 Mar 1998
Posted to Diagnosis and Symptoms
Last Updated: Tuesday April 06, 2010 15:08:54
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