11 month old with Nystagmus

[Chants171]

Hi My 11 month old was diagnosed with congenital nystagmus when he was 4 months old, it was initially thought that he had ONH but after all test (MRI and eye test) he fortunately is not ONH.  His Null point seems to be when he tilts his head back, this means when he sits he is fine untill he wants to look @ something then a tumbles over - he also does not grasp or hold on to things for very long, so doesnt bring to many thing to his mouth like other babies his age - is this normal?  His roaming has improved since he was 4 months - it almost seems like he is trying to control the eyes - he often covers up his eyes with his hands when a gets tired or too much is happening. He is also very sensitive to light and sometimes cries if the sun is to bright - is this a sign that he sees well?  Are there any exercises or stimulating things I can do with him to help him focus better or to stimulate brain activity?  I really feel helpless as everyone just says we need to wait and see but I am afraid if we wait to long the damage will be done. Please advise! Thank-you

[John C Hagan III, MD, FACS, FAAO]

Your child should be under the care of a pediatrician and a pediatric ophthalmologist. Nystagmus patients often have light sensitivity (one cause is systemic or ocular albanism). It doesn't mean they see well. There are no exercises that will help the eye or make it stronger.

JCH III MD

[AnnaE]

I am a community leader here, not a doctor. I am also an experienced eye patient. Welcome to our community

You are so right to monitor the eye health of your son.

The doctor will advise you.

I encourage you to follow up with us, and to respond to other community members, so that all of us can help each other learn about our eye care.