Neurofibromatosis - NF1

iVillage Member
Registered: 04-17-2006
Neurofibromatosis - NF1
3
Mon, 04-17-2006 - 2:11am

Hi Everyone,

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.

Debby

iVillage Member
Registered: 03-19-2003
Mon, 04-17-2006 - 7:49am

Hi Debby and welcome!

 


 



iVillage Member
Registered: 09-27-2005
Tue, 04-18-2006 - 11:31am

Hi,

My daughter (7 yrs.) has NF1. He father has it too. I have not noticed any lesions, skin tags, or plexiforms. She does have the birth marks. She does have ADHD, and no learning disabilities for now. Her school tested her for LD and Dyslexia-which she does not have either. She does have low muscle tone, and did not walk until 18 mos. because of it. She did have large motor skill delay as a baby, probably due to low tone. We go to a neurologist every 6 mos. for him to keep an eye on the NF. I need to take her back to the Pediatric Opthomologist to get her eyes checked for any tumors that can grow on the Optic Nerve because of the NF1.
Janie

iVillage Member
Registered: 03-19-2003
Tue, 04-18-2006 - 10:21pm

Hi Janie and thanks for sharing your story about your dd!