Does anyone have/know a child with duane syndrome?

JAWSCIENCE

Tue, Feb 21 2017, 1:03 pm

amother wrote:

Did you ever as a child cross your eyes? I find my son turning head but he crosses also. At the doctor he never crosses, and when I tell the doctor that he crosses sometimes, he said that as long as he has good vision and he also does the head turn, we're good.

She did recommend surgery but it was more like "Why not?" and left the decision up to us. We went for a second opinion and third opinion. One said absolutely do surgery and the other said, no need to do it, it's only for cosmetic purposes and we should reconsider when the child is a bit older and can be part of the decision.

So now I can't decide what to do. I want what's best for my child. Is it best to do it so that he appears normal? Is it best to not mess around with eye surgery when not necessary?

Yes I crossed my eyes. That is how my mother knew something was wrong. I quickly learned to compensate by head turning as you describe. I can still cross my eyes by trying to look left without turning my head but I dont typically do that unless I am forcing myself. People never even notice me crossing my eyes which is why I feel I have no cosmetic defect (photographers get mad when o refuse to follow directions about how to turn my head and haze though lol!) I am glad I did not have surgery. Perhaps the techniques have advanced since then but the specialists felt I was so mildly affected it did not justify the risk. If someone is casually saying "why not" to surgery without a risk benefit discussion o would find another person to talk with.

amother

Lawngreen

Tue, Feb 21 2017, 1:26 pm

JAWSCIENCE wrote:

We did have such a discussion, but the bottom line that I got out of it is do it if you want without a clear medical reason given. But cosmetically, people do notice it and his rebbeim have pointed it out. I don't want him to appear disabled or not taken care of.

In discussion, the doctor vetoed aggressive surgery of implanting muscle from elsewhere. The milder surgery would involve loosening the eye muscle from the other side to enable it to move more freely. She said it'd be a guesstimate kind of surgery which can be adjusted if necessary. There are no guarantees of the results of the surgery - for it to be fixed or better though yes, most likely it will be even if just a bit better.

I do want to thank you and the other posters who take the time to respond. I appreciate talking to laypeople about this.

amother

Maroon

Tue, Feb 21 2017, 1:30 pm

the more I am reading the more I am wondering... while my child does not cross eyes, there is a head tilt, headaches, and weak muscles. From what I read this could be type 2 which only 7 percent of the people with ds have. I will follow up with my opthomologist. Thank you for starting this thread. Good luck to you!

amother

Lawngreen

Tue, Feb 21 2017, 1:32 pm

amother wrote:

Good luck! Though it isn't usually head tilt but head turn and not weak muscle but missing muscle, there's no harm in asking about this.