Duane's syndrome: anyone have any experience?

[Upsidedowncake]

DD aged 9 months has just been diagnosed with a mild form of Duane's syndrome. She is missing a cranial nerve and her left eye doesn't turn towards her ear, so she moves her head instead.

The orthoptists say that they will monitor her throughout her childhood.

Anyone else have any experience of it? What happened?

Hi,

My DS (almost 14 months old) was referred to an opthomologist when he was about 6/7 months old. He was diagnosed with torticollis (wry head, basically he can't tilt his head of turn his head to the right very much at all, which resulted in a very flat head on one side!) at 4 months old and had physio till he was discharged at 11 months old when he had improved loads, flat head almost gone though he still has a bit of a tilt. I am not sure if this was related to the Duane's syndrome that was diagnosed at 7/8 months old. I basically noticed that DS had a noticeably one eye bigger than the other (especially when he gets tired) and when he sleeps, one of his eyes doesn't close fully. The reason why I thought it could be related to his torticollis was because there seemed to be an obvious link between the tightened muscles on his neck and his eye not closing fully...

They did a follow-up appointment two days ago (6 months later) and she said his movements have very much improved from 6 months earlier (I've also noticed his eyes close fully when sleeping now). They still want to monitor him 6 months later. The opthomologist says with kids, their condition do improve greatly as they get older and most of them will compensate for the lack of movement by turning their heads and it won't be noticeable to be honest. But they just want to monitor them to make sure they are okay. I hope this helps?

Ax

Thanks so much Angel.

My 9 month old was just diagnosed too, mild duane's in the left eye ( eye not completely turning left). I got multiple opinions and finally decided ( with Dr's suggestion) to let him work it out till about 5 or 6 years old. He is compensating for the field of vision with the head tilt. The doc said he would not advise surgery untill that age because the risks of messing up the eyes wil not be worth since the babies eyes keep shaping untill 6 or 7. He said that this will NOT prevent him from doing any activity. The only thing is that if he plays baseball, he should hit right handed. Most people with this mild of a case go about their life ( especially after the surgery and the correction of the head tilt and straightening the eyes field of vision when looking sirectly at you). We figured we will get that done prior to him going to elementry school. Also, the good nes is that what ever the Duane's type, it will never get worse unless of course it is something totally different!

hi, my son has duanes. hes been attending hospital since he was 1 and a half, he will be 6 next week.he was diagnosed the begin of last yr he got glasses for the first 6 months, then he had to wear a patch for 6 hours a day until 2mths ago he is now down to one and a half hours a day. this has helped the vision in his duanes eye as he only had 5percent vision in this eye.

I have Duane's. I had an operation as a child to straighten my neck as I was developing quite a strong tilt. It worked really well.

I can't use binoculars and my still life drawing can be interesting spatially (I'm an artist by profession), but otherwise I've not really had any problems.

My ds2 has duanes syndrome he is now six. We first noticed when he was 6/7 months old and tilted his head up over constantly. I got him referred to the hospital as there is a family history of squint.

He was given glasses at 16months old to help with the tilt brought on by the duanses but also because he is very long sighted.

He had an operation on the left eye when he was four, as the tilt was getting worse and he was suffering neck ache. But let me warn you, I had to fight for it and went armed to the consultant with facts and figures from the internet.

He will never beable to move the left eye outwards and therefore has to be positioned in a certain in class otherwise the right eye turns in to compensate.

He still wears glasses but this is for his sight. I am still going to the hospital due to the turning of the right eye which is a knock on effect of the duanes. I am trying to train him to turn his head rather than the right eye.

His perscrtiption is very strong +7.5 each eye. This makes glasses very expensive as I have the lenses thinned as much as possible.

I am back at the hospital this friday so I can post an update for you. I know quite alot on this now so please feel free to ask anything you want to know.

My 7 yr old ds was diagnosed with duane's at a similar age to your dd, although his affects his right eye, minimal movement towards his ear (same as your dd). DS has always turned his head to compensate for the lack of vision, for him it is normal.

The orthoptists will keep an eye on her as there is a chance with Duane's that she could develop tunnel vision in the affected eye. There is also a possibility that she will have double vision in the affected eye, especially when looking to her left (not straight on, IYGWIM). When she goes for check-ups they will do a selection of tests, checking her general vision in each eye, as well as making sure that the eyes work together as far as is possible and that your dd can see in 3D. Obviously these will be easier to conduct as your dd gets older, but they managed with my ds from about a year onwards. We are hopefully going to be discharged from the hospital and just be under the local optician soon, have one more check up and if all is well then no more hospital visits

Ds has glasses, but these have nothing to do with his Duane's, he is long sighted (I think, needs them for distance) and has an astigmatism. I have been told that there is nothing to be done about his Duane's, but that other than some occupations (firefighting etc) he should have no limitations on what he can do, and so far that has been the case. I make his teacher aware at the beginning of each school year as it has been recommended that he sits directly facing whatever he needs to be focussing on (especially the board), and also that in PE and the playground, he will be unaware of objects on his right. Other than that, he is an orange stripe belt at a local martial arts school, is a typical 7 yr old boy, hasn't yet mastered riding a bike without stabilisers, but whether this is because of his Duane's I am unsure.

HTH, and sets your mind at ease a bit.

Hi, my nearly 6 year old ds has Duane's in his right eye.

He has never needed glasses or a patch and we have always been very firm that we don't want him operated on.

We go to the paediatric eye clinic at our local hospital about once every 3 or 4 months and he does a series of small tests , mainly to test his eyes are working together.

He is very typical 5 year old boy and enjoys making his eyes completely cross to freak out his friends.