Neurofibromatosis

[ladyjoker NY]

Hi to all out there.
Ok, I am the mother of Ashton, who is almost 4 yrs old..and has NF-17. As of today, i told he has multiple lesions on his brain. I dont know what to do or think...i kept asking his peds dr. to explain things to me as simple as possiable, but i still dont have a clue. Is anyone out there who can help me out as far as understanding what this means or what can be expected.
Thank you.

[king dazed]

The only this that makes sence to me with that is small tumors on the brain. Or damage to a nerve. I was born with it and grew up at 24 year olds now pretty healthy. Minus the pain from someon my chest and arm. Get a infant neurologist. Thats what my parents did for me. Call your insurance company and they can help direct you.


David

[ladyjoker NY]

Ty..going to the nero.ist on May 5th. I have lots of questions to ask. But ty for your input.

[russtoo]

Hi;
I'm pretty sure you mean NF-1, a chromosome 17 disorder.