Any1 had a baby with vision or eye problems like nystagmus

[Mummywith5sons]

Hi my Ds is 8months old and have nystagmus(rapid abnormal eye movements) we was told his vision is OK has his eye's react to light but his tracking and following is little poor. He will be having a test soon to see how his brain and eye's function together and also just had mri scan and genetic testing done. We are currently waiting for results. My ds development is behind he doesnt. Reachout and grasp stuff he shows zero interest in anything other than his hands. He hardly smiles and if he does it seems to be delayed reaction or a reflex smile he does not social smile unless he is touched or stroked. I was wondering what other experiences with a child with nystagmus and any recommendations for things I can do to to play with him to keep him happy and stimulated like sensory toys.

Nystagmus is one of the eye conditions I have

Can't advise on recommendations of stuff that can help. But have you contacted Nystagmus Network?

Hi never heard of network has currently going through test to see what could be causing that and his development delay. They suspect pressure on brain so I've not really looked into much organisations associatedwith nystagmus. I'm not sure if he can actually see me has he doesn't
react to anything so I wanted to know if anything I can get him to make it easier for him to look focus or play with.

Oh and can you tell me what it's like for you your eyesight or anything. So I can have rough idea of what he might be experiencing.

What I see is normal for me and always has been. If his only diagnosis is Nystagmus, the amount of vision he'll have is how his vision will always be until he ends up with age related eye problems

My depth perception is rubbish. I struggle a lot with steps. I struggle with reading. Partly because of having vision worse than normal (most people with Nystagmus are registered partially sighted) and the constant shaking.

Nystagmus isn't painful. A few people (I think it's mostly people who developed Nystagmus as an adult) will say they can see things move..

I struggle to recognise a lot of people even people I know really well

Only a minority of people with Nystagmus can legally drive. I remember my old consultant saying he has patients who when they've had eye tests done in clinic, they pass the eye test for driving. They later fail the test for driving due to their vision

Thank you for replying to me
I do think he might classed has partially sighted has when he awake and you see him looking around his eyes move fast or suddenly roll around so If he doesn't grow out of that I suspect that be a problem for him especially when hes older and trying to drive. Did you develop yours has an adult or was you diagnosed has a baby

I've Nystagmus myself also, PP has hit the nail on the head, I was diagnosed early on but there is history of it my family.

I cannot drive but live an absolutely normal life with a darling little boy, I'm very successful in my career field as well.

I was born with it. There is a cause for mine but it doesn't have a name

I don't know if you heard of it but there is a reality show called outdaughtered yes I like crap tv. One of the quints has nystagmus and it documents her journey from under one to I think around six now. Might give you some reassurance. She did have to have I think two surgeries but the improvement is very obvious.