Neurofibromatosis - NF1
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|Mon, 04-17-2006 - 2:11am|
I was just wondering if there was anyone else out there with a child with NF1.
My son is 6yo and was diagnosed at 18mths old. So far he has escaped the worst childhood aspects of this condition but as it is progressive we obviously do not know what the future will hold.
So far he has learning and speech delays, ADHD and low muscle tone. He is a really sweet (although full on) little boy but is tactile defensive so is not keen on being held and cuddled. He has a few lesions under his skin and at the back of his scalp but no plexiforms at this stage. He does have quite extensive freckling and is just starting to develop a few little skin tags.