From Mount Crawford, Virginia, USA:
My son was diagnosed with type 1 diabetes almost three years ago at age 11. He has tested negative for antibodies four times. His endocrinologist said he has hardly ever seen anyone who doesn't carry the antibodies for the disease. We have no family history of type 1 diabetes but we do have some type 2. My son had a very long honeymoon period. It lasted around 18 months. He only used very small amounts of Humalog and did not take Lantus for over three months. His A1c was around 6.0 every 90 days. Last winter, everything began to change. He went from 5 units of Lantus to 64 units in a matter of three months. He did have a huge growth spurt and we all knew it would be a matter of time before the honeymoon was over. We were making insulin adjustments left and right. After lots of frustration and a hospitalization for DKA, we and our endocrinologist felt we should give an insulin pump a try. My son has now had the OmniPod since April 2011. His numbers are still all over the place. He has extremely high basal rates and requires lots of insulin when he eats. His A1c in August was 10.4. Is this all related to puberty?
One of our endocrinologist's partners had suggested doing testing for MODY at one time. Our regular endocrinologist shot down the idea. I feel like his diabetes is idiopathic and not an autoimmune disorder. He showed signs of diabetes for months before he was diagnosed. I'm frustrated because the only answer my son's endocrinologist has for us at this time, is that we must be doing something wrong and it's our fault. There are many children with type 1 diabetes in the community in which we live. We all meet once a month. All of the other children carry antibodies for the disease and none of them are experiencing what we are. Our doctor says that knowing if he has MODY won't change his treatment. The problem is, the treatment isn't working. I don't care how much it costs to have testing done or where I might need to go for a second opinion. Even if it doesn't change the course of treatment, I would love to know if we are dealing with something not so common. I'm just not sure if this is what I should do at this point.
It sounds pretty frustrating but, unfortunately, this is not such a rare situation. Sometimes we add a medication called metformin that helps with such insulin resistance. An insulin pump usually provides some improvement coupled with frequent visits and more frequent basal and bolus adjustments. Make sure that the boluses are always given a full 15 minutes ahead of food - sometimes even 30 minutes depending upon the pre- and postprandial blood sugar readings you are getting. None of this sounds like MODY. If he were significantly overweight, then testing for MODY genes might be informative, even if expensive. Metformin may help with weight loss, too. About 20% of patients do not ever have positive islet antibodies for reasons that are not quite clear since they really do have autoimmune diabetes, especially if all four antibodies are checked. If this is all pubertal related insulin resistance, the other good news is that after puberty, the hormone levels will calm down and the insulin resistance also will be reduced concomitantly even if there are several years of turmoil.
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