Hi, my daughter will be 6 months old this month and we were just diagnosed with ONH. It is Bilateral, but her left eye is far worse then her right. Is there anything you can help me with and help me to know what to expect. We have to see and endocrinologist to check her hormone levels and they suggested a patch to go over her right eye to kind of force her to use her left. she also has nystagmus and strabismus. Any info you could share would be great.
Well there is a lot of things I could tell you but I'd need a bit more of a specific question. In general though, don't be surprised if your daughter misses many milestones such as sitting up unassisted, walking, eating unassisted, etc. These are things we experienced but everyone is different. I have found, from talking to other parents, that the more vision the child has, the less delays they normally have. That is assuming, however, that there are no other problems. Hormone problems are very common with ONH. We lucked out and aside from some growth hormone problems in the first 3 years (that fixed itself), Elena is fine.