Cheli Nelson
I am the mother of a fifteen year old boy diagnosed with congenital nystagmus at 2 months of age. We were not even sure if he could see at all because he did not visually respond to people when they were right in front of him. Prior to the diagnosis we had a CT scan of the occipital lobe of the brain, this did not give the diagnosis but the theory was that if there happened to be a tumor on that lobe then maybe the tumor was causing the "dancing" There was no tumor. We saw a neurologist to rule out any muscle disorders that may cause future problems. At 5-1/2 months he got glasses because ther was areal effort on his part to see, he struggled. It has been very difficult for me but my son is a gifted child an has excelled in all subjects. Typically these kids are very bright because they enjoy "close work" mainly reading. I have tried very hard to make sure that he knows he is less fortunate re vision but that he is not disabled in any way, shape or form. As a parent of a child with nystagmus I encourage you to read all that you can to help you not to feel sad for your child. It is hard some times because I know how much he doesn't see. But you know what? He dosen't know any difference. His world is just too different for us to understand. He will not participate in sports and it is very difficult to see the football games. He may not drive. I spent hours in medical libraries and never found more than a paragraph or two. There is probably mor info out there now but I trust my doctor to keep me informed at this point. There is no know cause and therefore no known cure. Maybe in as little as five years things will change. Recently I was told of a book by (last name) del Osso. Apparently a man with Nystagmus wrot the book. I wish you all of the strength and support you need. Just make sure that your child understands (when he's old enough) about his limitations and let him read. Thanks,Cheli