Hi, My name is Ginny and I was diagnosed and had surgery at Texas Children's Hospital when I was about 18 months old.  My vision is fine for the most part, but I have to take into account where I sit at every event. For example, if I am on a date I will make effort to sit on the side that won't show my eye problem or I may sit on a side in my classroom that won't make me have to turn too much to overcompensate for my eye problems.  These are the worst side effects regarding my eye problem.  I used to be a lot more hypervigilant about how noticeable it would be, but with age I've relaxed a little. 

I have no problem driving or doing normal things.  I think that your son has an extremely better chance to adapt and get the appropriate care since it was caught so early....which is why I feel my prognosis has been so good.  The double vision has been an issue as well as the slight head tilt, but I make the appropriate accommodations (ex. where I sit in class etc) to help prevent being uncomfortable as much as possible.  My advice would be to help him be prepared for questions that kids may ask, as this was always a difficult thing for me & at times very hurtful.  Please feel free to contact me if you have anymore questions.  I have dealt with this condition for 30+ years & will be more than happy to help you & this handsome little guy any way I can.  Take care!!

Our now 19 mos old baby girl was diagnosed with DS when she was 6 mos, she has DS in her left eye...so far she is doing great she does have little head tilt but otherwise she is healthy little girl... Her doctor at John Hopkins said at this point she doesn't need any surgery..she is going back in 6 mos for  follow up...hopefully I would have good news to share with you all.

Hi Chrissy,

My grandchildren are getting so big. The twins Tory or Tony are 4 now. I posted some pics.

Have a good weekend. Debbie

YOUR BABY IS BEAUTIFUL!

xox

My grandson Carson who is 13 months old was diagnosed last month with DS. I have been searching the internet ever since to find information on this. It is worrisome that it is referred to as a "syndrome". So far he is devloping normally. I just worry about his future. Your son is a cutie. They are so precious.

I am 21 and have Duane's Syndrome in both of my eyes.  I have a head tilt, but no 3D vision...but I also have esotropia and muscles in my eyes that were not connected right on top of it.  The weak eye is always smaller than the strong eye.  It tends to squint, and in the sun, one eye may remain closed, the weaker one.

Goodluck! I have had 2 surgeries, one when I was 5 months old and another when I was 8.  It was not too bad. :o)

Hi,

My name is Sam and I am 18. I have Duane Syndrome and I had eye surgery when I was in 2nd grade. Your son pretty much looks and sounds like my situation. As you have probably seen there are much worse cases of it when the eyes wont line up at all. He will be perfectly fine. :) I do have a head tilt, I have neck pain but I have gone to physical therapy and learned how to deal with it. One piece of advice I have for you is if a doctor recommends surgery to really research it because I had the surgery and about a year later everything went back to the way it was. And there are obviously risks of something going wrong and he could go blind in the eye because of the surgery.

I hope that helps :)

If you have any questions for me let me know

Samantha

Hello,

My name is Michelle and I too have a baby son who has been diagnosed with DS. Exactly the same as you describe. We too thought it was his right eye that was erractic but now know that the left eye has limited movement. I have had two Specialist's come to the same diagnosis, and we are quiet certain that Jack has no other problems that can be associated. We have been told that his will probably have surgery when he is 4 to straighten the eyes, and therefore fix any head tilt. Of course the problem itself will still be there. I know it is no big deal compared to what some children get dealt in life, but it doesn't stop me worrying particularly about his future and any problems he might encounter later in life. I am interested to know how you are getting on and have you been given any information different to me.

Regards

Michelle

I don't have DS, nor does anyone I know. I just couldn't resist telling you what a CUTIE he is!