Neurofibromatosis Type 1

[Whyriskit]

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?

[cestlavielife]

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

[theonlyoneiknow]

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

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