Thursday, July 10, 2008

Emory Eye Update

Last week before leaving for vacation we made the hour and a half trip out to Emory to see Tegan's eye doctor. There aren't really any pediatric eye doctors any closer to us although I am looking now to see if I can come up with anything closer. As suspected he is doing great. He may be having a little problem seeing far off b/c that is when he tilts his chin down and turns his eyes upward to try to see you. Other than that his nystagmus does not seem to be affecting his vision at all. His null point appears to be straight forward right now and if that stays the same he will not have to have the surgery to turn his eyes. He showed wonderful signs of having perfect vision. His nystagmus has slowed down a little but is still noticeable....especially when he zones out which he does a lot. There are different types of being for no reason and not a genetic condition and one being from a disease called albinism. There are many forms of albinism from the no pigment at all to just an ocular albinism which is basically just nystagmus. Apparently everyone with albinism has nystagmus. There is no different treatment path either way, the only concern would be that if it turns out to be albinism then there is a genetic quality. Therefore if Tegan married and had babies with someone else who had this same genetic quality then they would run the risk of having a full blown no pigment at all albino. She doesn't feel that this is it so instead of us putting him through all the genetic testing we can just wait until he is around two and they will be able to tell by his eyes. Apparently there are some "holes" in the eyeball that can only been seen during an exam. Which means he has to sit still which just wasn't happening the other day. At this point I feel like it is idiopathic....which means no reason, just something that happened. She also said that hopefully it would continue to improve and by school age the eye movements would only be noticeable to those who know that he has it. I believe that will happen. Either way I am just glad this isn't affecting his vision at all. It definitely is not affecting his ability to crawl and get to small things (and shoes) that he shouldn't! Phew....I'm tired!

1 comment:

  1. Hi,

    I have a 2 year daughter who has albinism. You can see her here:

    It was very hard to deal with and understand the first few months after she was diagnosed. If you ever have questions, and want another parent's perspective, you can email me anytime. :)

    Also, if you need to find facts regarding albinism, the NOAH website is by far the best:

    Take care.