Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

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Genetic Counseling, Whats it all about???

deleted_user
deleted_user
My son was diagnosed with Nf about a month ago and we finally are going to our first genetic counseling apt... Can anyone fill me in on what its going to be like??? My husband and I are both curious and the doc's didn't say much.
deleted_user
deleted_user
I find once you are diagnosed unless you are exhibiting any major issues, they really do not say much.
There are things they tell you to watch for like the bumps, extra spots, and anything that concerns you.
I have had nf1 all my life and really have not seen any doctors for years because i have no issues.
Again some information about nf can be scary, and most of it is very rare.
Marah
Marah
My daughter goes to a genetic counselor once a year. First they confirmed the diagnosis with a blood test and a physical exam. Then when we go back the doc asks her if she has any concerns or problems. That is about it. For 400 dollars a pop. thinking about not going next year.
Marah
Marah
My daughter goes to a genetic counselor once a year. First they confirmed the diagnosis with a blood test and a physical exam. Then when we go back the doc asks her if she has any concerns or problems. That is about it. For 400 dollars a pop. thinking about not going next year.
deleted_user
deleted_user
My daughter was diagnosed at 8 weeks, she is now 8 years old. The genetic counseling we had was with Dr. Mislan Bauer at Miami Children's Hosptial-she is wonderful lady. Anyway she weighed and measure Shannon's length and her head. She looked over her numerous Cafe au laits and pretty much gave my husband and I lowdown on NF: there may be learning disabilities: Shannon does
Neurofibromas: She has 1 and I think she may be getting another little one.
We see Dr. Bauer once a year. We have had 2 MRIs just to check for internal tumors-no internal tumors. Shannon is showing slight curvature of the spine, but we were told not to be too concerned as it is very minor.
Shannon also has ADD inactive (not able to stay focused hard time understanding). She has been on medication for a couple of years and it has helped her tremendously. Ironically, my younger son, who does not have NF does have ADHD (he is on the same medication as Shannon and it helps him be himself. He does great in school, has an easy time making friends). Without it, oh boy!
Anyway, go to your counseling armed with questions. The only dumb question is the one that is never asked.
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