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Re: One more thing I forgot to add


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Posted by Shana on August 18, 2003 at 19:41:29:

In Reply to: One more thing I forgot to add posted by Elizabeth on August 18, 2003 at 14:12:15:

: : : 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.

: :
: : The doctors need to do several tests before a diagnosis of neurofibromatosis can be made such as Ophtalmology consult, CT or MRI, EEG and monitor the spots as he gets older. The reason for the ophalmology consult is because NF can cause small benign tumors anywhere in the body and nerves. If there is a benign tumor found in the optic nerve or anywhere in the eye, it can affect his vision.

: : Hope this is helpful. If not, I wlll be more than happy to go into detail.

:
: Also, one more thing I forgot to add is that doctors can only make the diagnosis before the age of 6 is if 3 or more are present.

Thanks Elizabeth, he definitely has more than three spots. I just wish there was a blood test or something that could be done and get it over with. I dont want to wait year after year. Thanks again.


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