My 2 year old son was wrongly diagnosed with Duane's Syndrome when he was approximately 6 months old by the first Pediatric Ophthalmologist we took him to see. I naturally wanted to get a second opinion...which turned into six opinions. About six Doctors later (and a couple of different diagnosis) we have determined that our son does NOT have Duane's Syndrome. The first Doctor said...I quote, "If I were a betting man, I would say your son has Duane Syndrome." My Mommy instincts told me to keep looking. We noticed that his right eye would wander off to the right and he doesn’t have the full range of motion in that eye when he looks up, down and to the left. His right eyelid is also droopy at times. After many tests, a MRI, a MRA, admitting him to the hospital for Myasthenia Gravis tests, seeing 6 Pediatric Ophthalmologist, a Neurologist and the only Neuro-Ophthalmologist in the Dallas metro-plex, we have confirmed that he was born with ‘Congenital Partial Third Nerve Palsy’ in his right eye. Basically the third nerve in his right eye is partially paralyzed and has been that way since his eyes were developing during the 1st trimester of my pregnancy. He had his first eye surgery April 2008 at Children’s Hospital in Dallas. The doctor operated on the horizontal eye muscles, which made the nerve issue less noticeable. Since it is a nerve issue and not a muscle issue, we won’t be able to completely ‘fix’ the eye. We were informed that he will most likely have to have several surgeries over the years. Our number one focus at this point is to preserve the vision in his right eye. I wanted to share all of this with you because I have not found anyone with a small child with a similar condition. Tonight I was online searching for a support group for parents with similar issues…and was unsuccessful.
I have bilateral Duane's syndrome. I have an unusual form of it and have lived 46 years with it without much problem. I wore a patch over one eye intermittently as a child to prevent amblyopia. I have binocular vision and have normal depth perception etc. I never needed strabismus surgery but obviously your situation may be different. I am trolling the eye forums for other reasons but I just noticed your post and thought I would give you a first hand account.
There are so many excellent pediatric ophthalmologists here in the United States, it seems like it would be easy for you to get excellent care for your son. I'm a little confused why the lack of consistency in what you are being told. It makes me wonder. Consider looking into a major university teaching hospital and seeing their top pediatric ophthalmologist. There are a few different types of Duane's syndrome and treatments can vary. Sometimes ambyopia can also be involved. Contacts are very useful in certain situations but I cannot make any recommendations here since I am not his doctor.
MJK MD