Duane syndrome | Imamother

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Duane syndrome

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amother

Wed, Sep 25 2019, 10:55 am

I'm about to go to a Dr. Appointment for my baby but I'm freaking out and want some reasurance.
At first I thought she was cross-eyed but now I realize her left eye does not ever move to the right or to the left- it only looks forward.
Does anyone here have this or have a child with this?

tms1

Wed, Sep 25 2019, 11:03 am

My daughter has Duane syndrome. It is pretty mild, and I think it has gotten even milder over the years. Wait until you speak to the ophthalmologist before worrying too much about it.

JAWSCIENCE

Wed, Sep 25 2019, 12:16 pm

I have it. My left eye doesn’t go all the way left. Has never been a problem for me but my case is mild. I just compensate by turning my head. More severe cases sometimes benefit from a surgery. None of my relatives have it nor do my kids so it was just a sporadic thing that happened.

Hatzlacha!

amother

Seagreen

Thu, Sep 26 2019, 10:12 am

My brother has it. It doesn't impact his functioning in any way at all. As a driver he has to move his head more when he wants to see with that eye. That's about it. He got married well, has 5 beautiful children, none of which have this syndrome. It sounds scarier than it is... It's really no big deal.

amother

Rose

Thu, Sep 26 2019, 12:29 pm

My mother has it and my niece has it but none of my mothers kids ever got it... it’s something so minor that no one notices it.... she happened to have done surgery a few years ago to correct it

amother

Vermilion

Thu, Sep 26 2019, 1:13 pm

I don't know anyone else with Duane syndrome besides for my DS, so I clicked on this thread and find a bunch of others with it too! We chose not to go for surgery though we may consider it in the future still. He compensates with a head turn.

tweety1

Thu, Sep 26 2019, 4:45 pm

My husband has it. I thought it's a lazy eye. Thanks for giving it a name. My husband bh married, is extremely successful in life, and has a career. Never affected him for one second.
I couldve gone anon but doing it for you op, so you know that this is a legit post and not some "Bain hazmanim" bored made up.

amother

Sun, Sep 29 2019, 10:07 am

Thanks for responding everyone. Wow, for a rare thing it's interesting to see how many people have it or know someone who has it. O wasn't sure if I'd get any responses!
So her pediatrician said she's too young to tell if anything is wrong (she's almost 7 weeks). She said she sees her eye moving sideways a bit. But I've been watching her eye for the past 4 days now and it has not moved outward at ALL. I:m not an infant eye expert but that doesn't seem usual at all to me. It moves up and down just fine and I've seen it possibly move inward the teeny tiniest bit (like so little you only notice I'd you're obsessively staring at it like I've been).
Her pediatrician said to wait until she's 4 months and then if it still is like that to see an opthalmologist. But she couldn't answer me when I asked if she's ever seen a baby whose eye didn't ever move a certain direction ever gain that kind of movement.
She said she's had two patients with Duane syndrome and their eyes looked difderent-that there was a squinty look that she doesn't have.
But I wonder- is that squint noticeable when they are babies this young? Do any of you know how old you or your family members were when someone notices something and brought it up to the doctor? What had they noticed was different?
I'm not really freaking out like I was at first it's just (thank you your comments were reasuring and also some articles I read) it's just frustrating to notice something and not know what it is yet and I:m just curious how this is going to impact her (or if it really is maybe just a tight muscle or something that will get better as she gets older). Ok I've rambled enough.
I guess my main question is with one or 2 month old babies with Duane Syndrome is anything noticeably different at that age?
Thanks everyone!

amother

Vermilion

Sun, Sep 29 2019, 11:42 am

I first checked out DS at 6 months when he was crawling straight but his head was slightly turned to the side. I also noticed that when I nursed him on my left side, his eyes seemed to be crossed. Maybe cus his case isn't severe I didn't notice it till then?

There's no reason to panic or rush into a diagnosis. They'll want to check how the vision is developing so you anyway need to wait a bit.

If surgery gets reccomended, there are a few types, the more basic one and a more diffiuclt one. You'll get a second and third opinion before doing anything. But most mild cases don't need surgery at all.

About the squint, I have no idea what your doc is talking about. For a diagnosis you need to see an opthamalogist.

amother

Wed, Oct 30 2019, 1:27 am

So I'm almost positive that's what she has. She's 11 weeks now and has a dr. appointment in a little over a month with a pediatric ophthalmologist. From hearing what we are noticing the ophthalmologist agrees it sounds like Duane Syndrome. It's feeling like forever until her appointment...
It's hard not to constantly be thinking about it whenever I look at her. I'm always wondering how much she can see out of that eye/what her field of vision is and such. I try to ignore it so I can just focus on HER but it's still partly in my brain thinking about it and noticing it (don't worry I still love her to pieces and am enjoying her and playing with her and doing all the normal mommy/baby things it's just on my mind always).

I read that sometimes the effected eye is smaller than the other- is this something that is present at birth or happens over time that one eye grows but the other doesn't grow as much? Has anyone else heard this or noticed this? If it is true- is it really obvious?

amother

Black

Wed, Oct 30 2019, 2:21 am

I have this. Its absolutely no big deal. My vision is excellent and it has not affected me in any way.
Editing to add that one of my eyes is slightly larger but I'm the only person who ever noticed!

amother

Thu, Jan 09 2020, 9:47 am

amother [ Black ] wrote:

I have this. Its absolutely no big deal. My vision is excellent and it has not affected me in any way.
Editing to add that one of my eyes is slightly larger but I'm the only person who ever noticed!

which "type" do you have?

amother

Thu, Jan 09 2020, 9:55 am

I have more questions. Specifically for anyone who has it. Her eye doesn't go outwards at all and possibly slightly inward- but so little if it does.
So I'm really curious if anyone here has it where their eye wont look either out or in at all. I'm curious what happens when the other eye turns to look but the one that doesn't move stays looking forward? Does it look really distorted to her? Like double vision I guess? I forgot to ask the eye dr. that.

amother

Vermilion

Thu, Jan 09 2020, 10:35 am

You will need annual appointments, possibly biannual in the beginning, to monitor the development of her vision. BH my child with duane syndrome has perfect vision and compensates well with a head turn. But we go to the doctor once a year to make sure that his development and coordination of the eyes is as it should be.

amother

Black

Thu, Jan 09 2020, 11:10 am

Yes, I have that. My right eye doesn't move in either direction. When I need to look to the side, I end up turning my head in that direction. Nothing looks distorted because I naturally compensate for it. Your daughter may likely never even realize that she has it.

amother

Thu, Jan 23 2020, 11:15 am

amother [ Vermilion ] wrote:

Thanks. I didn't realize anyone had responded. We will be doing regular appointments with the opthalmologist (her next appointment is in April I think). Thank you for letting me know that. That's reassuring to hear.

amother

Thu, Jan 23 2020, 11:34 am

amother [ Black ] wrote:

Thank you!

Another question- she's having a hard time getting used to her crib (switched from bassinet) and I was thinking of getting her a crib mobile or one of those things that displays moving stars on the ceiling. This may be such a dumb question but is that going to be more of an annoying thing for her? Like will she have to move her head to keep looking at the things going around? Or if she looks at it but only moves her one eye around will it look weird and just be more annoying than calming?

Am I overthinking all of this? I know it's SUCH a small stupid thing to worry about but you know.. babies can't talk and tell you what is bother them or what's going on.. and this is like one thing they don't really talk about in the baby books- or much of anywhere really.

FranticFrummie

Thu, Jan 23 2020, 11:54 am

Babies are pretty much interested in anything that moves gently, like a mobile or the stars. If she doesn't know she has a vision impairment, she won't be the least bit bothered.

DD is nearly blind in one eye, and she's compensated for it for so long that she's pretty much forgotten all about it, until she has a checkup at the eye doctor. She's 16 now, and her biggest problem is depth perception, which causes her problems in PE. She hates sports anyway, so the gave her a revised exercise program where she's not expected to be catching or hitting any balls.

amother

Black

Thu, Jan 23 2020, 5:05 pm

amother [ OP ] wrote:

Lol! You are a cute mother and are definitely overthinking this 😀. She is not going to get annoyed by any mobile any differently than a baby without Duane syndrome. She naturally compensates, and sees the world just like everyone else.

amother

Slateblue

Thu, Jan 23 2020, 7:36 pm

To those who have a child with Duane Syndrome, when did you tell them they have it? At what age? Or those who have it, when did you find out?
My child was also recently diagnosed.

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