December 14, 2000
Nesidioblastosis
Question from Salina, Kansas, USA:
My friend’s son was diagnosed with nesidioblastosis when he was 12 days old. They found it because he was taken to the hospital with seizures, and they found a very low blood sugar. He had 97% of his pancreas removed and is now four years old. He is continuing to have seizures, and they are becoming more frequent. Could this be due to the low blood sugars he had when he was an infant? Also, what is the life expectancy of children with nesidioblastosis?
Answer:
It is possible that he is still making too much insulin and that his endocrinology team needs to consider removing the remaining small part of the pancreas. It is also possible that his brain had some damage done with all the neonatal seizures, and now he is merely having seizures from hypoglycemia related to his diabetes (insulin deficiency since the pancreas was removed surgically). You should encourage your friend to talk very directly with her endocrine team and get all his/her questions answered since they would know the exact details of the situation.
SB
