youarekiddingme - thanks very much for the information - I'll go through the cerebra guide, it's much appreciated. If your DS hasn't been checked properly for NF, may I encourage you to chase it up - you can't leave NF, if he happens to have it, monitoring is absolutely essential, I can't stress that enough due to the unpredictable nature of the condition, as we have learnt recently to devastating consequence. If your GP isn't fully informed, find one who is, they are worth their weight in gold :-)
greener2 - yes, some large, some small, but the main early signs are freckling in the armpits and groin area, neurofibromas (lumps & bumps) on the skin, and CALs (cafe au lait birthmarks). Children & adults with NF can have slightly larger head circumference and shorter stature - although my ds is heading for 6ft. LD & behavioural problems can happen in approx 50%, hearing & visual problems can sometimes be present. Stress is a v.important factor in the health & well-being of children & adults with NF & we found this to be v.true for our son - a low stress lifestyle is a priority in our home & why we now home educate. No 2 people ever have the same combination of complications, so it's essential to be well informed. There are a large number of FB groups (UK & international), and Inspire -
www.inspire.com/groups/neurofibromatosis-network/
is an excellent place to go to with questions if you find you need to.
Here is a link to the Neuro Foundation which has all the info you need to begin with - www.nfauk.org/what-is-neurofibromatosis/nf-type-1/
1:3000 births are affected in the UK, so personally, I think everyone should be aware of NF & the very serious complications that can and do arise. GP's have caught up a lot over the last 10 years, but many health professionals remain ill informed, in diagnosis, management and treatment.
I hope all goes well for you & your DS.
Kindest regards.