Neurofibromatosis??

[Excited2Go2Disney]

Okay, this really doesn't have anything to do with our upcoming trip, but my 6 year old DS was just diagnosed with neurofibromatosis (NF). I have read tons of information on this but was wondering if anyone else had young children with this diagnosis and what kind of problems, if any, has it caused for you? We are going to a specialist in two weeks and I'm sure I will get more info then, but the research and info on the internet doesn't really give a first-hand account about this.

 

[alisonbestford]

Hi there ,

I have no personal experience of neuro-fibromatosis but my DF's little boy (17 mths) and step daughter (11) both have NF. Her DH also has NF.

They all have regular check ups but I know little else about how it affects them really .

I know her little boy is still not walking and it has been suggested that this might be something to do with his NF. Her step daughter has been diagnosed as being dyslexic and, once again, the NF link has been mentioned.

Other than that all I can say is that they are great kids and fun to be with

Good luck with your appointment

 

[eternaldisneyfan]

These are stories written by kids with neurofibromatosis:

http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/zachary.html
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/jessica.html

Christamae

 

[alisonbestford]

These are stories written by kids with neurofibromatosis:

http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/zachary.html
http://www.lehman.cuny.edu/faculty/jfleitas/bandaides/jessica.html

Christamae

What great links.
I think I will pass them on to my friend
Thanks.

 

[TAKitty]

My stepson has NF (just the spots). He has learning disabilities and of course the cafe olay spots. From what I know, it seems like someone in your family should have NF to pass it along. The boys' mother has NF; however, only the oldest has the condition. The youngest will be a carrier most likely.

 

[doxdogy]

Here is the link for the National Neurofibromatosis Foundation (the name has been changed to the Children's Tumor Foundation). There is a wealth of information on this site. I was diagnosed wtih NF almost 30 years ago. As you will see on the site, there are two types of NF 1 and 2. NF1 is the most commonly diagnosed of the two (mine is NF1). NF is either inherited or a result of a new or spontaneous mutation. Before you go to the specialist, arm yourself with all the info you can find. Sadly a lot of doctors are not familiar with the disorders and you will find yourself knowing more than the doctor does. If you have any questions, feel free to pm me. I will answer them to the best of my ability.

 

[Excited2Go2Disney]

Thanks so much for all the info and links. The doctor we are going to is at a children's hospital and she is someone who is a specialist in this area. It is my understanding that she only sees patients with NF. Hopefully she will inform us more about the condition. I have read a ton of info about it. Also noone else in the family has it (that we know of at least), so it must be the result of mutation as you mentioned. Thanks again for the info.