Home » Pick Your Crowd » Moms of Special Needs Children » Anyone have a child diagnosed with Neurofibromatosis

Hello, guest
|

Name: sweetcaramalkiss

[ Original Post ]

My infant has a very large number of cafe au lait spot, freckles and this is said to be a marker for NF. These spots concern me. Anyone have a similar experience regarding this? I am scared to death....... ↓

Name: Velma | Date: Mar 30th, 2008 10:28 PM

Hi,

I don't have a child with the diagnosis. I am a nurse who works with special needs children. Here are a couple resources that may help you.

http://www.neurologychanne
l.com/neurofibromatosis/index.shtm
l

http://www.ctf.org/

hope
this helps ↑

Name: stacy h. | Date: May 22nd, 2008 8:12 PM

my daughter was born with the cafe' spots -january 2006.she has over 100 spots fromhead to toe. it was such a shock to me-i am still adapting to the news and it's been 2years. You have to limit your child to the exposure of the sun-cancerous. ↑

Name: sweetcaramalkiss | Date: Oct 8th, 2008 10:13 PM

Dear Stacey H,

does your daughter have a diagnosis due to the spots my son must have over a hundred and he is only 9 months. I have to see a genetic doctor next month ↑

Name: mommyofone | Date: Oct 24th, 2008 10:57 PM

is there a family history? my three year old has the spots and her daddy has it so she's going to be checked for it. also does ur child have an enlarged head size for the age? ↑

Name: sweetcaramalkiss | Date: Nov 11th, 2008 12:08 AM

Dear Stacey H,

We just seen a genetic doctor today along with a neurologist and my son was diagnosed with NF 1 does your child have freckles under their armpit or in the creases of their groin area cause that is a sign of NF as well. I am very overwhelmed by the news I don't know what to expect and I am just in a fog right now ↑