anyone have a child with nf 1 (neurofibromatosis type 1)?

Angie - posted on 07/20/2009 ( 3 moms have responded )

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my 4th child has nf 1 we found out when he was 10 months old just thought i could find other moms going through the same things as our family.

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Laurie - posted on 11/02/2012

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My son Ben has NF 1. He just turned seven years old. He was diagnosed at age five when a new pediatrician noticed he had a whole bunch of cafe au lait spots. I had never heard of it before then and it scared the heck out of me. Ben sees an orthopedist, an opthalmologist, and a neurologist every year. He recently had a small benign tumor removed from his eyelid and he is due to have another MRI in a few months. He's been pretty healthy otherwise, he just seems to be getting more 'spots" lately. It has made his dad and I nervous wrecks, but he doesn't seem to know he has anything wrong with him.

Karina - posted on 08/19/2009

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my partner and 4 of my 5 children have recently been diagnosed with nf 1. They havn't had any problems as yet. My 4 1/2 year old also has other problems he is globally developmentally delayed, low muscle tone, hip problems, ptosis (droopy eyelid) and speech problems also. Do you have a family history of nf 1?

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