Nystagmus Support Group

Hi,

I am a confused mum with a 2yr old daughter who has congenital nystagmus.

She was diagnosed aged 7months and has been seeing a specialist ever since. She was prescribed strong glasses which have now been replace with slightly weaker ones. She has been diagnosed with congenital nystagmus and right esrophia. She had an electro diagnostic sight test done back in febuary this year but we havent had the results back yet as such. She goes to see a peadiatrician who said there were some results back and said that theres no problem with the back of her eyes or the nerves but she does have a problem with the front of her eyes and she said i would have to wait untill we see the specialist again for a full answer. She also is developing slower than a normal 2yr old child, she didnt start walking untill she was 1yr 11mnths and even now she is still unsteady at times. She also see's a group called portage who deal with disabled children and she has been referred to see a neurologist.

The question i want to ask is, is it worth getting her registered as partially sighted now or wait untill we see her specialist in december? And i did apply for disability for her but they refused her untill she turns 3 but i have now been told that i can get it before then if she is registered. Is this true?
Posted on 10/07/09, 12:10 pm