Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
|
new to support group
|
Watch this |
| View More Posts |
Our son (13) has NF1, hoping to find out any info that I may need. He has numerous cafe au lait spots, a bit of a learning disability, a tumor in his brain that is inoperable, but has not changed in years only gotten slightly bigger but doc says he's growing so is the tumor, nothing to worry about unless he notices any canges. He get's an MRI yearly and blood work but really nothing else. I have heard that puberty may bring along some problems and was just wondering what to look for. He doesn't really know much about what he has other than there is something in his head that we get checked by the MRI. Do you think he should know more or just wait to see if anything changes. Oh and he also gets migraine headaches to point of vomitting. These thankfully have decreased this past year.
Sharon Posted on 06/24/08, 03:06 pm |
| 4 Replies | Add Your Reply |
| View More Posts |
I really never knew much about NF until i was in highschool because my mom (who also has it) never discussed it with me. she still doesnt actually. everything i know about NF i have researched myself. my mom actually comes to me with questions. that being said, I definetly think you should keep the lines of communication open. you know your son best and will know how much information to give him and what he will understand and be able to handle. you don't have to tell him everthing all at once. personally i think it would be good to talk to him about NF, and be available to answer his questions. my mom never really talked with me about NF when i was growing up, i often felt very alone and as though there was no one who understood what i was going through. 
|
|
|
|
||
| View More Posts |
thanks for your reply...I do believe that the lines of communication are open, however he doesn't seem too interested at the moment, at least he doesn't appear to be. Like I said there are no real problems other than the headaches and the cafe au lait spots and that doesn't seem to bother him. I guess time will tell.
|
|
|
|
||
| View More Posts |
they say his is type 1 nf but his tumors are internal? my neurologist told me that type 2 nf is tumors inside the skull. but recently i've been having migraines and been using maxalt which works very well(but very expensive without good insurance)
|
|
|
|
||
| View More Posts |
sounds like you are on the right track. my only bit of advice is that he is 13 i wouldnt wait too long to tell him. my sons father, his parents never told him. he grew up with people making fun of his macrocephally and short stature (they called him head or little man). so now he has little man syndrome and is quite the pain in my butt! lots of encouragement and support of course. other than that you seem to be doing a great job!
|
|
|
|
||
My baby girl has about 25 cafe au lait spots, she has seen a genetic dr but has not been diagnosed with NF1 because she …
I'm nearly 30, and have several cafe au lait spots, but none of the other main symptoms of neurofibromatosis. Minor …
Hi, My daughter has Cafe au' lait spots, freckiling,slightly larger forehead, and has gone for an MRI because of some …
