Neurofibramatosis?!


Question: My 2 year old son has about 10 cafe au lait spots and so far that's it. The likelihood that he has NF is pretty high though right? I'd really like to hear someone's story who has it. When were you diagnosed? How were you diagnosed? When did you start getting tumors or where you born with them? Are you born with bone/spine problems or does that come later on? I know I have to wait and see if he definitely has it, but I wish I could know the path it usually takes. Thanks for any answers!


Answers: My 2 year old son has about 10 cafe au lait spots and so far that's it. The likelihood that he has NF is pretty high though right? I'd really like to hear someone's story who has it. When were you diagnosed? How were you diagnosed? When did you start getting tumors or where you born with them? Are you born with bone/spine problems or does that come later on? I know I have to wait and see if he definitely has it, but I wish I could know the path it usually takes. Thanks for any answers!

hi....

i have it.... i was diagnosed at 6 months i think... my dad had it.... i am 28 and still do not have any tumors from it, although i do a thickening of the optic nerve.... it gave me some learning disablities, but i worked hard and graduated high school.... i do have some back troubles from it... my back troubles came later on like 14, but they said most ppl get them eariler.... hope i help

huh

i don't nor do i know someone who has this disease. as long as your son doesn't have any sign of the tumors that accompany neurofibromatosis i would not be too concerned about the spots. i hope that you get good news from your doctors when they test him.





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