NF1 and optic gliomas

[Captain Serious]

J, my son, has neurofibromatosis Type 1. Does any one hear have experience with NF1 and optic gliomas?

I'm starting to worry J might have an optic glioma. For a year now, I've been seeing signs of his vision being poor, but the ophthalmologists keep telling me his eyes measure perfect. Last year, at his annual visit, he could read the chart at around 20/30. Today it was 20/50. He tells me he can't see things all the time, and he's always looking at everything really to close. I was sure they were going to give him glasses, but again, they said his eyes measure perfectly, and glasses wouldn't help him.

The ophthalmologist told me today that he doesn't see anything off, but since I really believe that J wasn't goofing off during the sight test, he's going to talk to J's NF clinic doctor, to see if she thinks he should have an MRI done. It sounds like they'd be looking for an optic glioma.

And now I'm really worried, made the mistake of reading online, and am looking for stories of prior who had one or know about them. Anyone have anything they can share?