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Re: NF diagnosis... any help out there?

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Posted by robin on August 18, 2003 at 13:44:12:

In Reply to: NF diagnosis... any help out there? posted by Shana on August 18, 2003 at 13:35:34:

: I posted about this before. Ds who is one... has MANY cafe au lait spots (though he is a mixed child). We are trying to get a diagnosis but nothing yet. We went to a dermatologist today, WHY? They couldn't tell us anything but that is who we were referred to by the ped. Anyone else out there have to deal with this before? Please give me some insight if so... I just really want to know already. They want us to go to an opthomologist now, but I have read that they usually diagnose 90% of cases after 6 yrs of age.

my nephew had them..i now forget what he has to get checked for each yr...the disease

they want him to go to the eye doc ot make sure there is no growths in his eye wich will help determin what there looking for

nurofribomytosis...thats it

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