my son has this weird eye fluttering that goes left to right rapidly and my daughter also has it but hers goes down into her eyelid and ticks up to the top of the eyelid they both has EEG's and didnt detect any seizures i was just wondering if any children with canavans has this as well please write back

thanks Heidi

Hello  Heidi ,

 my son Kevin had a moving of the eyes whe he was younger , it went from left to right ,they called

 it a horizontal NISTAGMUS .

I don't know if it is the same but  just to let you know , they couldn't do anything about it,

but it went away as he grew older .

Sometrimes when he has a small seizure it is back for a few moments .

hope you find some answers   Sylvia

Hi

Ben also has nystagmus.  It was very rapid when he was under a year old and is slower now that he is older and also the eyes don't move as far from side to side.  As you can imagin this affects the vision.

When Ben has a seizure his eyes usually move repeatedly from the centre to the top left and sometimes they seem to move round and round the corners as if he is looking round and round the four corners of a square.

Ben had and EEG which was normal but he definetly has seizures and takes Tegretol and Phenobarbital which control them pretty well.  When he has a seizure there are other signs as well as the eye movement.

Best wishes

Sally

Lilliana also has nystagmus. thats how we found out she had canavans because we thought she was having seizures but the eeg didnt show any but it was abnormal.

Angela had nystagmus also as a baby, but she outgrew it and has no problems at this point.  Hopefully your experience will be the same.

Hi Heidi,

Sarp had a nystagmus in his eyes when he was 8 months old and at that time we chenged our neurologist. She advised to stop using a medicine so called Sabril and fluttering has stopped instantly. I do npt know may be it was just by chance but I heart that Sabril cause that side effect.

I hope it will recover soon.

Bihter