Neurofibromatosis???

[LogansMummyxx]

hey

My babys father suffered from Neurofibromatosis (NF1)
went to the private clinic and they suspect hes got it too as hes getting quite a few birthmarks..anyone elses child suffer from this ?

Love Ash&Logan

 

[Emmea12uk]

I have never heard of it - what does it mean?

 

[LogansMummyxx]

Ehm its kinda hard to explain you should google it & even look at the pictures

 

[Emmea12uk]

Sorry your son may have this. How bad did it affect your son's father?

 

[LogansMummyxx]

He was covered in Cafe Au Lait patches i think they called it
& his family has a past with this

quite sad really

 

[Deb&Matilda]

Sorry I cant help you but just wanted to say good luck and hope everything sorts it self out xxxx

 

[KissTheFairy]

I hope you find out soon either way hun

 

[Tootles]

Hi Ash,
hope you don't mind me replying to your post.. my husband and 3 yr old son both suffer from Neurofibromatosis.

Give me a shout if you fancy chatting or have any questions about NF !!!

Emma xx

 

[LogansMummyxx]

hey. thankyou for your support .. how are they coping ? give me a wee private mail! x

 

[MommyOfSeven]

Goodmorning!

My son (also named Logan) has Neurofibromatosis. He is 7, and has had ALOT of problems in school. I kept being told its ADHD, and even got talked into giving him meds after not finding anything else to help. I new something else was up, so I took him to a new pediatrician, who as soon as he saw all his birthmarks (or so I was told they were all his life) that he needs to go for testing and MRI's and such. I just recently (within the past month) got results back telling me he has small tumors on his brain, which could definetlly be affecting his behaviour. I am just learning about NF as I go along, I dont know much, but as I read about it, Im finding not many people really know alot about it as it is SO different in each person. And you can't be sure of how severe it is or will be, its all mostly waiting and getting tests done

I may not know all the answers to any questions you may have about it, but I would definetlly be a person who is going through the same thing.

There are a few groups you can join with others who either have or their kids have NF (even on facebook). There is support out there, its just a matter of searching for it. You can google it, and maybe find something in or close to your area.