Advanced search

Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

Neurofibromatosis Type 1

(3 Posts)
theonlyoneiknow Fri 01-Feb-13 11:04:50

How did you get on? Did they definitely diagnose NF1?

I have just started a thread in Health about this same disorder, am panicking!

cestlavielife Thu 06-Dec-12 16:08:21

for school you need to focus on the actual symptoms curently and how they present problems and strategies to deal with them. regardless of the underlying diagnosis

Whyriskit Thu 06-Dec-12 12:22:55

Suspected DS1 (5) has had this for a while (ticks most of the boxes) and asked for him to be referred. Appt yesterday and the consultant says she's pretty convinced.
Feel a bit weird, at the moment the only symptoms are freckling, cafe au lait spots and some subcutaneous bumps - I'm hoping this is how things will stay!

He's doing fine at school, typical 5 yr old, so obviously meets some of the criteria (clumsy, finds it hard to concentrate, not great socially but has a group of friends). I'm just not sure whether to tell school about the diagnosis or leave it until/if there are any issues re learning? Does anyone with more experience of NF1 have any advice?

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now