What is Neurofibromatosis
Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
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Need advise on NF
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My daughter is 7 months old and recently got diagnosed with NF. She has the cafe auleit spots and anterolateral bowinng of the right tibia. The doctor said she would have to wear a leg brace until she is an adolecent. I researched a couple websites and quite frankly I am dead scared. I dont even know what to think.. is there any one here who has dealt with anterolateral bowing of the tibia?? One of the websites I read said that it is likely that the bone will brake by the time she is 2.. PLEASE HELP!!
Posted on 02/19/09, 02:02 am |
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its good you caught this early. Have you been to a geneticist yet? they are about the best help i have gotten. You might want to see a neurologist at least once a year also. When i was 2 months old i developed my first tumor on my head and neck. if you have any questions just ask and i'l do my best. I just don't kbow much about the bone problems but we have some NFers here that know much more about that than me 
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hi, i feel your pain. My daughter is now 1 1/2, she was diagnosised with nf1 and pseudoarthrosis of the right tibia at age 8 months. It is the scariest thing i have ever had to deal with. She has worn about 6 different braces. her leg is broken and we are just buying time for surgery. you can email me anytime i would love to talk. awagler1@hotmail.com
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my son is 4 and has NF
he does not have any bone issues so far but i would love to chat anytime with people who have kids!!
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Hi,
I also have a child with NF. My son is 2 and he has had the cafe au lait spots since he was born and he now has a plexiform neurofibroma in his mouth. So far he doesn't seem to have any bone problems and I don't really know what to say to you.. I have found that the Geneticist is a good place to get advice from. If you want to chat anytime then just yell. Love and best wishes xx
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