From Pittsburgh, Pennsylvania, USA:
My daughter is 9 years old and was "diagnosed" 3 months ago as a pre-diabetic with the possibility of becoming a type 1 in the next few years. Initially I was told she was a type 2, as she produces excessive amounts of insulin. I believe I was told that she should be between 5-20 and her last insulin reading was 147 (hyperinsulinism). The doctor said her pancreas cannot operate at the high production levels for too much longer, therefore it may burn itself out and she will become a type 1. She has been placed on a low carb/high protein diet, with no other medication. She tests her blood sugar levels 2-3 times a day on her own and gives no fuss.
What else can we do to help her? She suffers from hypoglycemia several times a week even with the new diet. The hypoglycemia is what initially caused me to take her to the doctor who also initially told me there was nothing wrong with her. I am so confused as to what she actually does have, and also want to know how much longer can I expect her pancreas to hold out until she becomes insulin dependent.
Is there anyplace I can find statistics on this -- I was told it's very rare? Here's another exception, no one on either family side has had diabetes and I thought it was hereditary. Her weight and height are average she is 4 foot, 5 inches, and 70 pounds. She is a dancer and takes classes several times weekly so I am not concerned about exercise; she is solid muscle, but we do have to worry about hypoglycemia directly after or during her dance classes. Can anyone help, or direct me to the right people? Her doctor is nice but doesn't really seem to know how to proceed and is kind of using her as a guinea pig; I'd rather have some straight answers if there are any.
I think that the first things to do are to check up on the units in which the high insulin levels were reported if it was in 'microunits per ml' then it was indeed high, if however it was really in 'picamols per liter' then the figure would be quite normal. The next thing would be to talk to your daughter's doctor about getting an antibody test done. A number for him to call is 1-800-425-8361. A positive answer will indicate Type 1A (autoimmune) diabetes whatever the insulin results.
If these steps do not provide answers then you have to consider that your daughter may need to be more fully investigated for some kind of hyperinsulinemia. If the severity of the hypoglycemia seems to warrant it might be worth seeing if oral nifedipine will resolve matters (see Eichmann, et al. Europaean Journal of Pediatrics 158:284,1999).
There are, however, a number of causes for this problem, some complex endocrine syndromes, some related to chromosomal abnormalities, some to changes in what is called the insulin receptor on the cell surface. The majority though seem to be linked either to a benign tumor of the islet cells or to some adult form of hyperplasia. Investigating this would probably involve a CAT scan or ultrasound scan of the pancreas and perhaps even surgery; studies that would need to be supervised by an experienced pediatric endocrinologist.
I hope this helps and that I haven't alarmed you over something that may be quite minor.
Original posting 9 Nov 1999
Posted to Diagnosis and Symptoms
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