Has anyone had thier kids see an eye specialist?  Kyle saw one last week and they said his nerves behind retna were pale and theres not too much that can be done.  I know that one of the effects to Canavans is loss of sight.  Kyle has problems with tracking items that are moving quickly and with things outside the range of 1-2 feet.

Thanks

both my children have seen a specialist since they were 3 months old my son paul his sight isnt great his left eye is blind and his right eye is impaired they said since he cant tell us he doesnt know if he can see of not he said he doesnt want to make him as legally blind because they said he might still be able to see the back of his eyes are very grey, my daughter her eyes are fine she can see about 6-8 inches in front of her tho the doc said there is a little grey forming she can see much better and track a little better than what paul can if your very close to pauls face i feel he can see great but you need to be like 4-5 inches from his face we wanted to get him glasses but the doc said there is really nothing they can do even if he has glasses he still wont be able to see what we see but we always think positive he loves touching things and noises and vibrating things so thats all that matter , we say he doesnt need to see he still has a great time like all kids do

Steve,

 Just last summer Vinny's opthamologist found changes behind his eyes. He also told us that there's nothing that can be done but oddly enough Vinny's eyesight hadn't changed. Of course, Vince has always had problems tracking things quickly - I think thats why TV has never held his interest. This stupid disease...

paul and harleeGrace are the same with tv no intrests but if they hear a funny sound on it they think its funny or you see them smile..once in a clear blue ill put paul in front  of the tv and turn it up real loud and put on the wonder pets or spongebob he likes the noises they make thats why i put it loud his hearing is great

Hi

In the UK Ben is registered blind, I just allowed this so that he could recieve special raised library books with pictures that he could feel from a special library for blind people (living pictures).  If we go to the eye clinic they will say that Ben can't see but we know that he can see dark and light, movements and the colour changes in the lights in his sensory room.  He has only ever had this tiny bit of vision.

Sally x