Congenital hyperinsulinism (excessive insulin production)

By alwaystryin Latest Reply 2010-09-15 11:02:56 -0500
Started 2009-09-30 18:58:01 -0500

Congenital hyperinsulinism (excessive insulin production) is the most common cause of persistent or recurring hypoglycemia (low blood sugar) in infancy. Many infants and children affected with any of the various forms of hyperinsulinism have recurring, severe episodes of hypoglycemia both before and after diagnosis that can cause seizures, brain damage, and developmental delay. Since undiagnosed hyperinsulinism or failure of treatment for hyperinsulinism significantly increases the risk of mental retardation and permanent brain damage, prompt diagnosis and aggressive treatment are crucial in the fight against this disease.

The "World Diabetic KID'Z Foundation (WDKF)" has teamed up with this Organization, to help bring Awareness and Education of this profoundly important Topic.

There is also a Petition in place to make BG Testing MANDATORY on all Newborns.


Please visit for more information and help us, help this fine Group.

1 reply

Jadeland 2010-09-15 11:02:56 -0500 Report

I have an acquired form of hyperinsulinism called Nesidioblastosis caused by gastric bypass surgery. I had many severe episodes of hypoglycemia before having my pancreas resected (85%) last year. Now my pancreas is regenerating itself and the condition is returning. I am a type 1 diabetic as a result of the pancreatectomy while dealing with enormous insulin releases after meals, so I basically walk a tightrope to keep my blood sugars under control as I swing from dangerous highs to dangerous lows. I learned a few months after the surgery that I have permanent brain damage (memory, focus, concentration and motor tics.) I am now disabled and unable to work. I use a Dexcom CGM to keep my BS in check. The future is unknown for me as an optimal form of treatment is unknown outside of the pancreatectomy. This is a very serious and scary condition with little effective treatments known. I feel sorry for infants who cannot tell anyone they feel their BS dropping too low.