Duane's Syndrome - anyone heard of it?

[Clayhead]

My ds has been diagnosed with Duane's Syndrome, his right eye doesn't look to the right, he turns his head to compensate.

I have googled and found a bit out about it, I just wondered if anyine else has either heard of it or had any experience of it.

Thanks x

bump

Yes, yes, yes - my ds1 has it too - exactly the same. No time now but will defo get back to this one!!! At last - someone else has it too! Causes no problems though.

Aero , thankyou, thankyou, please do get back when you're free!!!

Hello Clayhead
Unbelievably I'm still awake at 12.35am - haven't forgotten, but am on holiday in N Ireland visiting parents and am having to hijack their pc but don't want to look like a hopeless addict!!!
Yes ds1 (now 6) has Duane's Syndrome. His right eye doesn't look to the right side and he also compensates by turning his head. His vision is totally fine though and it hasn't held him back in any way. He's been under hospital care since he was v tiny and I first noticed, though has now been discharge das there's nothing they can really do about it and it doesn't cause him any problem at all - he's never known any different - in fact now he can do 'funny eyes' at will as his party trick! It won't stop him driving or anything (they say because he was born with it and has always compensated). No-one really can tell as he looks 'normal' when looking at you - you'd only see it sometimes if he doesn't turn his head. How old is your ds? Funny, I hadn't thought to look it up on the net - I must check it out. Did you notice it yourself?
Anyway - will try to check in over the next few days or so though will be busy doing the family thing, but will still get back to this. You're the first person I've come accross whose child has the same thing as mine!

Aero, thanks for replying

My ds is only 9 months old, we had noticed that his eyes weren't always 'right' but we hadn't realised exactly why that was the case. We thought that he had a problem with both of his eyes; when he looks right it is as if his left eye goes too far round but actually we know now that it is his right eye not going far enough...sorry, hard to explain. I have never noticed him not being able to see anything or anything like that. Now I have had the way he holds his head pointed out to me it is, of course, obvious and I'm beating myself up that I didn't notice before.

He has to go for a sight test in 3 months and then for a hospital appointment.

My dh had some kind of problem with his eyes at a similar age, more to do with a muscle which goes across the nose which grows properly by about 18 months, but we don't know if he too was tested or diagnosed with anything else. The orthoptist thinks my ds also has a problem with this (it's familial) so how much is down to Duane's and how much to this other muscle remains to be seen, only time will tell.

Thanks again. x

No problem. Yes' we always thought ds1's eyes were 'screwy' from very early on and took him at around 9 months for a check. Apparently there's also a problem in dh's side regarding eyes and he was always being seen by an orthoptist/opthalmologist (or whatever they're called - we just say eye doctor).
No don't worry re explaining - I know exactly what you mean. It was most obvious to us when he had his back to us and turned his head to the right to look round at us and his right eye just stayed where it was. That was at nine months. I had noticed and said much earlier but they tried to tell me it would settle down but it didn't and never will.
It never worries him though and he's just learned to ride his bike (no stabilisers) - again, he just turns his head to look right - that is natural for him. I think as long as your ds's vision is ok, it's not too much of a worry.
Where do you live? Just curious. We're in Kent, but you don't have to answer that! Just wondered what your hospital care is like, but it's early days for you.
Nice to know we're not the only people with this little 'blip'.
Will try to check in later again - have been labelled as internet junkie already!!

Thanks again Aero, sorry got you labelled as an internet fiend, please tell your family that you've made mine very, very happy, it's so nice to hear your experiences and very kind of you to share them.

We haven't got as far as hospital yet so I can't really comment, we're in the North Midlands.

Thank you again, you've made our day!!

Probably passed your way the other day - we drove to Stranraer to catch the ferry to N Ireland. Will be interested to see how you get on - keep me posted. My brother was just pulling my leg re the junkie thing - he wanted to go online too!
One of the things they should tell you when you do go is to let his teachers know (a long way off I realize),so he can sit either centrally or on the right side of his class (looking towards the front), so he doesn't alway shave to turn his head to see the front at school. Other than that there's no real problem to worry about.
Anyway, glad to be of help and hopefully some reassurance to you.

Hey
I just seen this in passing as was looking it up again, I am 22 and have Duane syndrome in my left eye, since I was young I've compensated for it by turning my whole head left. My left eye does occasionally get tired if I have been awake too long/ reading too long or watching a lot of TV(putting a cold, damp cloth over my eyes for 5-10 minutes helps the strain

ZOMBIE one child will be 19 and one 13 now. Post is 13 years old!