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August 30, 2001

Nesidioblastosis

Question from Lewistown, Montana, USA:

My step-daughter's four month infant recently had seizures and blood sugars of 13-15 mg/dl [0.7-0.8 mmol/L), and she is currently in ICU with numerous tests being performed. Although she is on medications to prevent seizures, her brain waves indicate that seizure activity is still there. Currently, the doctors are looking at hyperinsulinemia and nesidioblastosis. Without medications, her blood sugars bottom out. What is the chances that she will be brain damaged? What is the treatment and outcome of this illness? Where can we find out more, in layman's terms?

Answer:

Nesidioblastosis is a rare condition, but we do see it from time to time. I don’t have statistics, but it is remarkable how well these children tolerate hypoglycaemia, provided it is recognised and managed swiftly.

Rather than my suggesting where you should get information, your step-daughter should ask her paediatrician for material then it will accord with her specific treatment. Surgery is often required to remove the ‘overactive’ pancreatic tissue. As a consequence, a high proportion of patients later have diabetes requiring insulin treatment. Alternatively, a search of the Internet would, I am sure, produce quite a lot of material.

KJR

[Editor’s comment: See answers to previous questions on the topic of nesidioblastosis.

SS]