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?

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