From Gloucestershire, United Kingdom:
In 1984, my partner was diagnosed as having nesidioblastosis. When she was three weeks old, she had 95% of her pancreas removed and was diabetic for only a few months after that. She had no complications at all until she was 12. Since then, roughly every two months, she gets severe stomach pain and cannot eat or drink for 24 hours, after which she is back to normal. She is now 20 and leads a very normal life eating and drinking what she wants. But, this problem is still happening. She has had it so bad in the past, lasting up to three days, that she has had to go into the hospital as she was in so much pain and also due to the fact that she cannot keep fluids down. She has had various tests, blood tests, ultrasound and CT scans that have all come back negative.
So far, after many years of trying to figure out what this is, she is still clueless. I am writing to you as, just recently, it is really starting to take its toll on her as there is simply no explanation for this or a solution. She also had a serious attack recently which put her in the hospital again. Have you heard of this problem at all? Do you have any thoughts on this?
These are very odd symptoms and details. I would hope that she is working with an experienced endocrinologist who knows something about nesidioblastosis. She may want to consult with a pediatric endocrinologist even though she is a bit old since they would have much more experience with nesidioblastosis and its aftermath. Also, she may want to re-consult with the original endocrinologist who made the diagnosis and helped manage her as a newborn since access to her old records may answer some questions.
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