I'm surprized it took so long to diagnosis this. I have been told there is a surgey to slow the eyes down. As the child gets older the movement w/therapy will really help to slow down the movement. I notice my son tilts his head a certain way at times to help focus. As far as the light not sure,my son also has occular albinism and the light is very bad for his eyes and skin but he wont keep a cap or sunglasses on anymore!Good luck and do some research if you can get the answeres here. It's not real common. Good luck to you.

my boyfriend has congenital Nystagmus. He drives and everything so his vision isn't really badly impaired he just needs glasses

My son was 2 months old when he was diagnosed with Congenital Nystagmus. He is now 20 and a Junior in college. Surgery was mentioned to us years ago but back then there was only a 50% chance of it improving his Nystagmus. Some doctors told us they wouldn't do it just yet because there was also a chance of the surgery over correcting and causing more problems. So we never did have the surgery. My son has done well in school and was a B student, he played sports (although was told he shouldn't play baseball), was able to drive a car, etc. I found a lot of help and support from the The Nystagmus Network which you can google. They are based out of the UK. My son was given prism glasses to wear when he was 5, but of course would never wear them. Now he has a bit of an eye drift "myopia" (I think) and that could have been from not wearing his glasses at that time (now they tell me?) But google The Nystagmus Network for sure to check them out. Good luck!

I am a 39 year old with congential nystagmus. It is likely my nystagmus is related to another congential birth defect called Arnold Chiari Malformation I. I did not know i had ACMI until i was an adult. My nystagmus was not diagnosed until i was about 1 1/2 years old. I have 2 sisters; one fraternal twin and one older sister. My older sister also has nystagmus and (likely) ACM1. My cousin has ACM1.

How nystagmus affects/affected me:
- i tilt my head to different positions to attempt to find my "null" point. When i find the "null point" this is when my eyes are moving at their slowest, then i can see my clearest. Your child will do this subconsciously.
- Finding their null point is critial to seeing. Your loved one may contort their body in many positions to try to find it. Once the optimum position is found, they will repeat it over and over.
- Positioning their body in this null-position makes many activities difficult/uncomfortable (viewing computer screeens, tvs, people, someone sitting next to them...we do lots of repositioning).
- Because our eyes move constantly, OTHER moving objects are very difficult to track, whether moving very fast or very slow (baseballs, marbles, clouds, flowing water, etc) You might hear..is that moving?).
- Occassionally, while staring, things look like they are moving because my eyes are moving. i told the doc about this and he said it is a known phenomenon from the eyes moving.
- Couting numbers very close together (0000000000) I have no idea how many 0's are in that group. Anyone feel free to let me know if you feel so inclined.
- I often FEEL with my hands to get a tactile opinion of things a lot even though i am not blind and even though, yes, i do drive, like the other poster mentioned about her boyfriend. It is simply because there is something missing. I suppose it is the details. So, i enhance my experience with feel.
- None of this was realized until i was in my late 20s or 30's. So, the more you know now, the more you can help your child or your adult loved one.

If anyone would like to talk to me directly, please reply or email to me and we can talk further. thanks!
GoldenMoo

i agree. i am surprised it took that long to diagnose. i also have congenital nystagmus. i have found that it is not at severe in females as it is in males. i am 15 and in high school. bright lights shouldnt affect her much. she will find her null point as they mentioned before. dont try and make them hold their head straight. i am working on getting that fixed now. i am nearsighted, so i wore glasses, which didnt help me because my null point isnt straight ahead which is where glasses allow you to see. i wear contacts now, which are benefitting me a lot. it can be stressful sometimes, but she will live a good life regardless of this.

Hi, I have a fifteen month old with nystagmus, he doesnt need glasses but holds his head ata tilt looking down his nose to find that null point. He does shake his head and roll his eyes some also and it seems this is a pleasing sensation for him. We were worried that it seemed to be holding him back developmentally but in the past two months he has come on in leaps and bounds. The most frustrating part of it is, I think, witing to see how, if at all, it'll affect him in life.