HI
My 5 yo son suddenly lost his vision in a matter of 2 days. He went completely blind, he could not see light or anything. This was the first of Nov 07. Looking back, he had been really tired & run down acting, sleeping more, just not quite acting like himself, however, we didn't really think anything was wrong. He ended up in the hospital with iv steroids, then sent home on iv steroids for 3 more days. He is on 60mg of prednisone per day now. His reflexes in his legs were weak. He had an MRI, which showed the optic neuritis, and a 1cm lesion on the frontal lobe. CSF was done, the myelin basic protein was slightly high, not as high as his neuro thought it should be for a demyelinating illness. He has regained some of his sight, however, he has started to tire again & sleep more. They discharge diagnosis was : Optic neuritis, ADEM, possible MS. Now, from what I have read, MS in pretty rare in a child of his age. Does anyone have experience with this? I am not even sure how they will tell the difference between adem & ms, other than recurrence. I am scared, it was so hard to watch him be fine one day & then have no vision the next. He has damage to the optic nerve in both eyes from this. I worry what his future will be like, or what the chances are for this to happen again. Is there anything we can do other than keep a close watch on him? He is schedules for another MRI on Jan 2. I am really not sure what my question is, just looking for help or someone who has something to add. Thanks so much!
Lisa