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November 6, 2002

Nesidioblastosis

Question from Tampa, Florida, USA:

I just posted my daughter's case on the message board "Alternatives to pancreatectomy Kristin's miracle". Do you know of anyone else using Sandostatin [octreotide] for its side effects of lowering insulin as an alternative to diazoxide or surgery?

Answer:

If you search PubMed using terms like “somatostatin” or “octreotide” plus “hyperinsulinemic” (from Persistent Hyperinsulinemic Hypoglycemia of Infancy, a name that has come to replace that of nesidioblastosis. you will find a number of references. However, using drugs like Octreotide (Sandostatin) to inhibit insulin release does involve repeated injections so that many centers nowadays would try calcium channel blockers before Sandostatin in the hope of averting surgery.

DOB
Additional comments from Dr. David Schwartz:

Sure. The use of somatostatin (Sandostatin, Octreotide) is well documented in the literature to inhibit insulin production, especially in infants with persistent hyperinsulinemia leading to hypoglycemia. It must be given by shot, usually three to four times daily, the shots can hurt, they are very expensive, and side effects can include changes in stool pattern, gallstones, and an underactive thyroid gland along with decreased growth hormone production, among others. If there is no good effect with medical treatments (including somatostatin, diazoxide, and sometimes a class of medications called “calcium-channel blockers”), then a surgical approach to remove the majority of the pancreas is often the only recourse.

DS
Additional comments from Shirley Goodman, diabetes nurse specialist:

Congratulations that the therapy for your daughter is successful. I know of several pediatric endocrine programs in the US have used Sandostatin as a medical intervention in the treatment of hyperinsulinism. Given by subcutaneous injection or as a continuous infusion, it can be an effective treatment for some children.

Some of the parents in our practice have also successfully used the Internet to connect with other families with similar medical treatment for hyperinsulinism. The CHOP (Childrens Hospital of Philadelphia) website also has a section about the diagnosis and treatment of congenital hyperinsulinism which families have found useful.

SG

[Editor’s comment: See Children with PHHI.

SS]