ISO info on nystagmus in infants

Has anyone have a LO or family member that has this condition and can tell me a bit more about what it is like having a child with this condition? Our family just was diagnosed and we are just so upset and have not a clue what to think, expect or do. Next step is an appt with Neurologist. Diagnosis was with opthamologist.
Who is the best on this condition? Just crushing news for a long awaited 3 month old BB.

Thanks everyone.

Re: ISO info on nystagmus in infants

My daughter, now 4, developed nystagmus at 3 months of age. It was a long journey but she was ultimately diagnosed with a genetic condition that caused it. Although, there are many things that can cause it. She is doing great now. Please feel free to FM if you want more info.