Does anyone have experience of NF - Neurofibromatosis?

[swiperfox]

A fiend of mine has a dd who is 3 and a ds who is 10 months. My friend was diagnosed with NF at 24 and there is a 1 in 2 chance of it being passed on genetically. Her dd has been told she is 99% clear of it, but has episodes where she will hold her breath when she gets angry and will go rigid then floppy and black out. Her ds is only just starting to roll and isn't able to sit up at all except in the bumbo i gave them. I have finally managed to convince her to get them both checked out and was wondering if anyone has haad a similar experience or knows of things which are relative to nf that she could be looking out for in the meantime? TIA