Nystagmus Support Group

hi all,
my daughter who is 2 next month has congental nystagmus, worst part about it is i dont know how its affecting her.

she had an electro diagnostic sight test done the end of febuary and i still havent had any results back yet. she also see's a peadiatrician regarding her slow developement but we have put it down to her having nystagmus, shes still not walking yet and seems to be wobbily when shes stood up. they told me they have recieved some results back from her sight test and they have told me she has not got a problem with her retna or the back of the eye where the nerve connects from her eyes to her brain but there is a problem with the front of her eyes, they also told me i will be recieving an appointment very soon to see her eye speciallist and he would explain more.

i just wish he would hurry up about it because i want to help her the best i can, i feel i cant help her fully because i dont know what she see's or doesnt see.

ok yea i keep an eye on her to try and work it out for myself but its not that easy.

its a nightmare because i have been told that my new baby has an 80% chance of having it but she cant be tested untill shes 6mth old.

also my eldest child (my son), is potty training and he's also a pain at times and seems to get quite jelous when im paying attention to the other 2. but i need to because i need to work out how i can help my daughter with her nystagmus.

i have read that in all cases of nystagmus, it affects their eyesight in some way or another. also i have read that they can have tunnel vision, colour blindness etc. i just want to know.

i have also heard that i can have her registered as blind because she has it, but i was told by her specialist to wait untill the results came back. i have also applied for DLA for her but was turned down because she is not 3 years old yet.

just wish they would hurry up and see her so they can enlighten me.
Posted on 05/24/09, 06:05 am