5 month old diagnosed with Nystagmus

[Kerriw14]

Hi all just looking for a bit of advise from anyone who has been through similar my son was being referred by the HV due to what he thought was a lazy eye my sister in law then mentioned to me and my OH mother she thought the baby's vision was not right as his eye were shaking my mother in law straight away booked an appointment for him to be seen privately at the Portland hospital where a brilliant doctor diagnosed Nystagmus

I had never heard of this before now and to be honest I'm devastated for him as are the rest of the family. The doctor said he is long sighted and won't ever reach driving sight which upset me greatly he said he will have partial vision but he is doing very very well and is one the best cases he has seen with this condition . I wondered has anyone else been through anything similar or anyone have any encouraging stories where they were told similar things but their child actually proved those diagnoses wrong? Thanks everyone

All I know about nystagmus is that Richard on Pointless has this condition. I'm not trying to be facetious, just pointing it out as he's been pretty successful in life - hopefully your consultant can put you in touch with support organisations who can help.

www.nystagmusnet.org/cms/

I think you'll be surprised how well he does.

Wow I didn't realise that amazing! I feel like you just fear the worst and I know you can't judge what the future may bring and there's so much out there on this condition it's difficult to filter through it

Hi if you are on Facebook you should definitely join the Little Four Eyes group - huge group from around the world, and many many babies and kids with nystagmus.

It's very hard to find that your child has any kind of condition, but it will get easier as you go on. Has the dr prescribed glasses? Our son wore then when he was about this age - you will see many many babies on Little Four Eyes with glasses, they only look cuter!

Hi Blackswan thanks for this joining the group now! not as yet no we have to go back for tests in september to determine how much sight he does have we are also being seen Monday at out local hospital. Im feeling so much more optimistic and positive today I know in my head and heart its going to be a tough road to begin with and there will be hurdles for both him and us as parents to overcome but i am determined to face it all head on! i am also going to start my own blog about it all thank you for your kind words :)

Hi, my ds seems to have no vision problems but I have an eye condition with which I am partiality sighted, have nystagmus and cataracts. The only time the nystagmus bothers me is when reading and 3D films dont work for me. I cant drive but it doesn't matter. He will be fine please dont worry.