From Albany, New York, USA:
My daughter was recently diagnosed with type 1. Upon further blood tests, she tested negative for antibodies with her pancreas working within normal ranges. Our endocrinologist insists she still has diabetes even though she just doesn't fit nicely into type 1 or type 2. She is 11 years old and is definitely not overweight. She was initially diagnosed with type 1 because she had high sugar in her urine, a vein blood glucose of 208 mg/dl [11.6 mmol/L] and an A1c of 6.9.
Right now, she is taking three units of Lantus at night. Our nurse educator told us that she has never seen anything like this in 20 years of experience. They are pretty much taking the wait and see attitude right now, but that has left me totally confused. How can she be type 1 with negative antibodies and normal pancreas function? But, how can she be type 2 at such a young age and not being overweight? Is there any other types of diabetes that she fits into? If so, where can I get more information about it?
Sorry to let you know that medicine still is part "art" and not 100% science. There are many such children and they are not so rare. Pancreatic antibody tests are only positive about 60 to 80% of the time (i.e., 20 to 40% negative antibodies with classical autoimmune diabetes). And, the "honeymoon" phase is very variable. She could also have a variant of type 2 (i.e., MODY) without obesity. There are some special genetic tests available from a new company called Athena Diagnostics that may be of interest to your endocrine team to explore.
But, they are correct in continuing a small amount of insulin at this stage, keeping up the blood glucose monitoring and avoiding concentrated sugar intake as much as possible. Time will help sort out what to do over the coming two to three years. In my experience, if the blood sugar values are absolute normal, below 99 mg/dl [5.5 mmol/L] before eating and below 130 to 140 mg/dl [7.2 to 7.8 mmol/L] one to two hours after eating, for a year or two, then I would consider stopping the insulin and seeing what happens to the blood sugar readings without insulin. We are following four such children at the moment and I suspect most large diabetes practices have the same experience.
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