My 22 month old just had his routine yearly MRI/Ultrasound and EEG's.
Well, they found an optic glioma on his right optical nerve :( Do any
of you have one of these or kids with one? We now see the
opthamologist on the 16th and have another MRI in 4 months (unless the
opthamologist wants it sooner). They said it if grows, we are being
sent to a neuro surgeon. He has NF1 and so far has just had the cafe
au lait spots which started at 2 weeks. I feel so helpless right
now. His NF was caused due to a genetic mutation, there is nobody in
our family with it at all. So the only information I have is what the
neurologist tells us or I research, which both are pretty scary! LOL
So I'm just curious if any of you have had experience with one of
these, and maybe has some information for me on what to expect, or
what he possibly could be going through. He didn't have one at his
MRI a year ago, so it's grown in the past year.

Jen