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To Worry About Duane's Syndrome?

(17 Posts)
DimpleHands Fri 29-Apr-16 19:36:09

My DD, 5 months old, has just been diagnosed with Duane's syndrome in her left eye. It means she can't turn her left eye to the left - it will only look to the right or straight ahead. She turns her head to the left to compensate, giving her the appearance of a squint. There's no cure and no treatment available and I'm a bit upset about it. Does anyone else have it/have any children with it and if so can you let me know about your experience?

Ohwoolballs Fri 29-Apr-16 19:46:19

Hello! I have this! Please don't get upset!
I didn't get diagnosed until I was 19/20 (iirc)
I went to the doctors about my hearing, which is another symptom of the syndrome it turns out. After asking loads of questions about balance, pitch etc the doc asked if there was anything else I've noticed and I remember saying "oh! I've never been able to look left out of my left eye." This got really confused looks off my mum and doc but he checked it out and it was a definite squint.
Since I wear glasses it isn't massively noticable and I've continued on with no major issues (I never wanted to fly jets anyway...)

It might be worth getting your daughters hearing checked (or has anything been flagged up?) though I think at five she will be checked when she starts school so you might want to ask for a couple more before then as I didn't notice the hearing loss until my late teens.

The long and short of it is: don't worry, don't panic.
I've got through life with no issues from it at all.
There is info online.
Sorry I can't say more, bfing a fidgety 5 week old ATM!

DimpleHands Fri 29-Apr-16 21:27:58

Thanks very much for replying Ohwoolballs, especially when you have your hands full!

Seems that it is very rare - apparently it affects only 1 in 200,000!

DD's hearing seems fine so far but I will definitely keep an eye on it, thanks.

I hope you don't mind me asking but were you self-conscious about it at all? I just know how mean some children can be and I feel a bit sad that DD might be teased about it at school when she's older. Although it sounds like it isn't very noticeable if your mother had never noticed it?! Do you turn your head to the affected side to compensate? Has it given you any neck problems at all? My DD currently holds her head at a very odd angle - she swivels it completely around when trying to look left, like a little owl smile.

Medusacascade Fri 29-Apr-16 22:09:22

My DD 5 was diagnosed with Marcus Gunn Jaw Winking about the same age. It doesn't affect her sight but is very obvious when she drinks, yawns or licks things. It makes her eyes look all wonky at times, especially when she's tired. I know people in her class will pick up on it eventually so we've turned it into a positive party trick. She thinks it's a cool thing that others can't do rather than something to be embarrassed about. I approached it from a confidence boosting way to not care about others comments.

NettleTea Fri 29-Apr-16 22:50:12

My daughter has it, type 3.
To be honest it really hasnt affected her, apart from liking to freak people out by deliberately looking in two directions at once. No one has ever commented upon it from her peer group, and 2 of my friends only commented to say it gave her a unique attractiveness.

Ohwoolballs Fri 29-Apr-16 22:57:06

No problem Dimple
I can't remember if anyone (child or adult) had ever said anything about it when I was very young, I have worn glasses since I was sevenish so it would be quite easy to hide.
When I'm looking left it seems my right eye really "goes for it" leaving my left eye forward (God, that sounds bizarre now I think about it) I do get double vision but my mind has just always ignored it. I wish I could explain it better. The majority of the time I just move my whole to look left.
I remember when I was in my early teens there was one lad who would say I was going bog eyed which confused me as he was the only one to ever say anything and within five years I had a diagnosis. Looking back on photographs I am smiling and one eye is slightly squinty and more closed but I look like I'm just laughing, gosh it seems really obvious now!
I don't think I have a case as severe as your daughter as it was never mentioned by either of my parents growing up.

This has made me reminisce a bit much, I hope it makes a bit of sense!

Since diagnosis I have never been called in for checkups or anything or have I asked for one.

Good luck with your little one smile

Clayhead Fri 29-Apr-16 22:59:03

My ds has it, he's 13 now. It hasn't make one iota of difference to him other than he gets attention by showing his strange eye to his friends.

When he was younger I had to make sure he sat at the correct side of the classroom so he wasn't always turning his head, now he does that on his own.

You could sometimes see it when he was younger but I forget he has it now!

Clayhead Fri 29-Apr-16 23:04:06

Sorry, also he does turn his head but it's so slight no one notices. I have asked him and my other dc over the years if it's ever been mentioned at school or by other kids but they swear no one's ever said anything.

We went to quarterly orthoptist appointments until he was seven, he cried when we had our last one as he loved going. hmm

The worst thing that happened was when he was about one he had to have drops put in his eyes to check his sight and they stung but a few chocolate buttons seemed to ease the pain smile


steff13 Fri 29-Apr-16 23:10:21

Our babysitter has it. She wears glasses, but it's really only noticeable when she's not wearing her glasses.

YellowSquirrel Fri 29-Apr-16 23:26:41

I have this too! Never met or heard of anyone else having it.
I don't need specs and it does not affect driving etc. I just turn head slightly to look left. Most people have no idea I have it until I show them (my party trick!!).
Your daughter will be fine. She will automatically sit on left of classroom etc. It's nice to be unique/quirky!

kateyjane Fri 29-Apr-16 23:39:19

I teach a boy who has it. He's great - he will get good GCSEs this year despite the fact that his learning is slightly affected. His eye difference is not very noticeable and he is very popular. Your daughter will be fine - she has you!

giraffesCantReachTheirToes Sat 30-Apr-16 00:06:13

What a wonderful thread - hope this has helped OP smile

Seren85 Sat 30-Apr-16 01:59:38

I don't have this but a similar condition meaning I have no peripheral vision in my left eye so have to turn to look to my left and can look a bit "squinty" without my glasses. Its been absolutely fine. Its all I'm used to and I drive without issues. I do occasionally walk into whoever is walking on my left which DH finds annoying and/or endearing.

Seren85 Sat 30-Apr-16 02:03:07

Also mine was diagnosed at 7. My mum took it badly as she hadn't noticed and has spent my entire life obsessing about my eyesight and protecting the other eye. When I was a kid it was actually something other kids were intrigued by and as an adult its rarely noticed.

TattyDevine Sat 30-Apr-16 02:14:20

It will all be fine OP I promise.


MissOnomer Sat 30-Apr-16 02:59:42

I have Duanes - diagnosed when I was an infant/toddler - I'm 43 now.

i loved going to the hospital when I was little and doing all the tests. I remember my mum encouraging me to move my head not my eyes and it just became a habit that I don't even think of now.

The only impact is that in close up photos one eye always looks a bit sleepy which is a bit annoying, but now my wrinkles disguise it grin

MattDillonsPants Sat 30-Apr-16 03:17:00

OP I think you must have accidentally posted twice.,...I added a link to your other thread.

Here it is again smile

It's a young woman with Duanes talking about it.

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