When did you see symptoms? (neurofibromatosis)

[homemademom]

My 2 yr old has had numerous cafe au lait spots since birth (like 25 or so). They are all mostly tiny, asymetrical and faint (the 5 or so larger ones are about 1 cm long) . He doesn't really have any on his limbs. We saw a pediatric opthamologist a year ago and all was fine there. We go in for our next annual visit this month. So far, our ped said to just monitor for symptoms, but he wasn't overly concerned.

Ds has no other symptoms at this time and I hope it's not NF (though, by far, it is the "best" disease related to cafe au lait spots). From what I understand, it can take up to 10 years to diagnose it. I hate being in limbo

If your dc has NF and you don't mind sharing, what were his/her earliest symptoms and when did they first appear?

[kalynnsmom]

2 of my 3 kids have NF1.

8 year old DD: CAL's at 6 weeks. At close to a year, she had a large growth underneath her tongue and turned out to be a plexiform fibroma. Also, probably around a year or so, after her MRI, it was discovered that she has an optic glioma. By this time, she had already been dx with NF1 because of family history and the CAL's (DH has NF1)

3 year old DS: CAL's around 6 weeks. Is developmentally delayed but we're not sure if it's related to the NF1 or to the prematurity (he's a twin). Had an MRI at around 2 and found "stigmata of NF" on his brain, which is common in people with NF1 (these cause no problems)

It's hard because it is a wait and see type disorder. Hang in there, and feel free to PM me if you have any questions.

[BookGoddess]

Here's another NF discussion from a few weeks ago.

http://www.mothering.com/discussions....php?t=1252113

[homemademom]

Thank you both!