if you dont mind me asking but what symptoms have u got from nf?

best advice i can give is what docs n ppl have told me id not to go reading all worst case scenario stuff on net cos i started too and it makes ya panick my daughter is happy and healthy and i intend to take each step as it comes and if she gets ill she gets ill ill deal with it at the time

my next dilema is wheather we should have another baby i never imagined we would only have 1 but we cant decide weather we should or not

aw thanks hun your little man looks gorgeous   .

When my ds was diagnosed with nf1 we were given the option to have a blood test for him but decided not to as he clearly has it. He is only 1yr so just the cafe au lait marks at the mo, fingers crossed it stays that way. 

Maybe when you have your baby thay can test to see whether he/she has it.  I hope everything works out and my advice to you would be try not to worry too much because it might be a waste of energy. I know its hard cause being a mum you just want the best.

Take care xx

hi hun thanks for ur reply. apparently because i have nf if they can find the change on my gene they would be able to look fo this in baby too but they may not find it in me therefore wud have the usual 6 monthly checks if that makes sense?

i think i am worried about aspects that have not effected me or things that have effected me that may or may not be associated with nf. iam trying not to think about it to much as we will love our baby what ever .

pm me if ya wanna chat

hi clare my dp has nf1 and our daughter has the cafe au lait birth mark things. if it makes it any easier we have just seen a genetics nurse who told us a lot bout nf and said due to the varity of the illness you could have nothing happen to u and still have the illness so my daughter has the marks but still may get no other symptoms we have recently found out she also has hip problems unsure if it related but may be as it seems to be 1 leg shorter than other which is 1 symptom my dp has. apparently thought there isnt a proper test they can do to say if a baby has it or not so my dd sees a peadatrician every 6 months to be monitroed.

hope i aint telling ya stuff u already know hope ur pregnancy goes fine

has anyone 1's little one got nf1? i am pregnant with my first baby and have nf1, i know i have a 50% chance of my baby having nf and that it could be worse than what i have it as i feel tht mine is quite mild. i just wanted to chat about experiences etc to help prepare me a bit more. i have always known i have nf i was the first in our family but obviously my dp and his family are new to it all so it would be harder for them .

thanks