From just a few months old I knew that something wasn't quite right with Noah's eyes. I brought it to the attention of the health visitors a few times but they just dismissed it and told me not to worry. But I knew and a Mother knows best so I kept pushing until we were referred to see somebody. When Noah was 6 months old we received an appointment at our local hospital to go and see an osteopathic doctor. We attended and I was told there was nothing wrong but they would see him in another 6 months to just be on the safe side.
Over the coming 6 months I just knew in my heart of hearts that even though we had been told his eyes were fine, that something wasn't quite right. You could see it in some pictures when a photo had been taken at a certain angle and when shown to others they could see it to, people also commented on photos in which his left eye was turning in.
Just after Noah turned 1 we received another appointment at our local hospital. We attended and it was here we were told he had Duane Syndrome in his right eye. Now I thought it was going to be his left eye with the problem because that was the eye that turned in when he tried looking to the right. But his eye did this because of the Duane Syndrome in his right eye. I had never heard of this before and it made me a little concerned, as any parent would be when they are told their child has a health issue. They told me it wouldn't affect him and that he was born with it. They also told me that there was no treatment to correct it. That was all the information I received, however hard I pushed them in that appointment. But the fact of being told not to worry was not going to stop me worrying when I didn't know what Duane Syndrome was.
As most people do I headed for the internet for a little more help in explaining what it was. The first place I looked was the NHS Choices website and there is NOTHING on there about Duane Syndrome, so off to Mr Google I went. This is where I found out some more information and all the information I read explained that there was nothing that could be done, unless really bad in which a surgical procedure could be done which I hoped it wouldn't need to be.
This is the quick explanation I got from NORD (National Organization for Rare Disorders):
" Duane syndrome (DS) is an eye movement disorder present at birth (congenital) characterized by horizontal eye movement limitation [a limited ability to move the eye inward toward the nose (adduction), outward toward the ear (abduction), or in both directions]. "
After reading their whole explanation of Duane Syndrome it put my mind at rest that it wasn't going to affect him in his day to day life or his development, but it didn't stop me worrying that it would get worse.
In the latter part of 2015 I was starting to get a little concerned with his eye movements and still not fully aware of what the syndrome was I brought Noah's appointment forward to sooner than his 6 month check. I was getting concerned about his sight and wanted it checked as soon as possible. The NHS were fantastic and with no problem they made me an appointment at a hospital just 20 minutes away with his doctor. We saw her and she told me there had been no change and there was no need to worry. It was here I asked her to explain it a little more to me.
She told me that the Duane Syndrome was in his right eye which meant that he didn't have the right muscles in the right of his right eye (sorry a lot of right's there). This meant that his right eye won't turn out towards his ear which in turn means that his left eye will turn really far in towards his nose to compensate for the right eye not moving. This then all made perfect sense to me. I came away a lot happier than I had gone into the appointment.
Since that appointment he has had a sight test which showed that he has brilliant sight so the Duane Syndrome thankfully isn't affecting that.
Noah then had his 6 month follow up appointment come through for just the other day. When we were there she asked me if I had noticed any change and I explained that I had been able to notice it more but wasn't sure if it was because I knew about it. After doing her tests, one involved holding Noah's head still and putting a fish in the blind spot of his right eye to see if it would move rather than him turning his head which he didn't like at all, showed that nothing had changed and there were no concerns. I did ask if it would affect him at all in the future and the only thing is that he will need to sit on the right of the class when he starts school. This is because if he is on the left he will need to keep turning his head which may give him a head turn and/or make him feel uncomfortable. This was a huge relief.
I wanted to write this post to make people aware of Duane Syndrome as it isn't very common and not many people know about it. The preschool mentioned to me a few weeks after he started that they had noticed his eye turning in and I explained that he had Duane Syndrome and they had never heard of it. I know it's not something major but it still is something that will affect him, so I feel I want to make it known so other parents that notice something will know to get it checked but to also know it's not something to be be worried about. But as I said with anything that affects our children, we will always be concerned about.
Oh wow! This is the first ever time I have heard someone else mention Duane Syndrome.ReplyDelete
My youngest has it! She is 8 now and a few years ago they discharged her from hospital as there was no change and her eyesight is perfect. We still notice it now and again but it doesn't affect her day to day life at all...
I'm so glad it wasn't just me who struggled to get information about Duane Syndrome...
Do try not to worry x
I had never heard of that before. Thank you so much for writing this post.ReplyDelete
Thank for sharing Kirsty I have never heard of this and really is interesting I'm happy that won't affect him going forward and I applaud you for keeping on top of it #bestandworstReplyDelete
Good for you for listening to your mommy instincts! Doctors can either make us feel so inferior for asking a question or they can make us feel worlds better by listening to us and sitting down with us to explain things. I'm happy you found your answers. Thank you for your post. I hope it helps a worried mommy in the future :) #bestandworstReplyDelete
Hi Kirsty, Mums know when something isn't quite right and you were right to keep looking for an answer. I had never heard of Duane Syndrome either and it's always good to raise awarenss. So glad it doesn't affect Noah overly.ReplyDelete
I've never heard of that before so thank you for making me aware. I'm pleased it won't cause any long term issuesReplyDelete
Thank you so much for writing this post. I have never heard of this syndrome and have never known anyone to have it. This is helpful to me as an educator. Glad to know that there isn't any major difficulties and pray that he continues to be fine. ~LowandaReplyDelete
I've never heard of this condition, great that you are bringing attention to it and I am so glad it is nothing "serious" although mums always worry. Well done for getting it checked out!ReplyDelete
This is the first time I've heard of this condition. It's scary when your little people are diagnosed with a condition, and it really doesn't help when that diagnosis doesn't come with a full explanation. Thank goodness it won't adversely affect your little man too much as he grows up. Thank you for sharing such an informative post.ReplyDelete
Thank you for sharing this, I had never heard of it. I'm glad it won't cause him many problems though. #JustAnotherLinkyReplyDelete
Happy that this isn't something serious that will have long term vision affects. Its great that you were able to identify the problem early and can now teach him how to make adjustments.ReplyDelete
I've not heard of this before so really interesting to read! My daughter has a pseudo squint (one eyelid doesn't open fully so the eye seems smaller than the other and can also look as though it is turning in but it isn't.) we've had lots of check ups and tests and have been assured it is purely cosmetic and not affecting her sight at all. So I can relate in some way to your post and how worrying it can be! Glad Noah isn't too affected. XReplyDelete
I have not heard of this condition before. Thanks for sharing the information. And you're right, we will worry when it comes to our children. It's always good to know of strategies in which we can assist our children. #justanotherlinkyReplyDelete
Kids make you worry all the time don't they. Thanks for sharing this condition as I have not heard of it either #justanotherlinkyReplyDelete
I've never heard of this condition before, so I am so happy you are bringing awareness to it for people like me! This was definitely an interesting read. We, as moms, tend to worry so much don't we?! I'm so happy it isn't affecting him at all (:ReplyDelete
Never heard of this before- thanks for the information. I hope another parent with a child with the issue comes across this post and it helps to put their mind at ease. Glad your tot is OK and can still see well xReplyDelete
Its hard knowing there is something not right with your littlies but just hearing that they are fine from everyone else! Glad he is all good & you now have the information you need and thank you for sharing! I have pinned this incase any of my mummies at work are in the same position!ReplyDelete
I agree whatever happens with our children it feels huge to us as parents, they are the most precious thing in our world so I would feel worried too! I am glad that it is not serious and he is a healthy boy, but I am sorry you have had this stress and worry. I think it is great that you are informing everyone as I am sure it will help people who are experiencing the same thing and don't know what is happening. Much love #mgReplyDelete
What a shame you had to work so hard to get information, I'm sure this will prove a really helpful post for people in the same boat. It is as you say good to know that Duane Syndrome is unlikely to cause problems, but you wouldn't have really known this until you had known exactly what it was. Thank you for sharing #justanotherlinky Lucy at occupation: (m)otherReplyDelete
Interesting - never heard of this either. Glad it is nothing to worry about or that will have any substantial impact on Noah. #justanotherlinkyReplyDelete
I have not ever heard of this either. I'm grateful for the education. Thank you!!ReplyDelete
I have never heard of this and I have eye problems. My left eye is permanently turned in, I wear glasses/contacts to correct it and you'd never tell, without them though it looks awful and really gets me down. I am glad to hear this is not going to cause him any trouble later on and his actual eye sight is fine. Good on you for listening to your mummy instinct and getting him an appointment.xx #mgReplyDelete
thanks for this post. I have never heard of Duane Syndrome. It doesn't sound serious and that small alterations in his life will enable him to manage things perfectly. Good on you for following your intuition and pressing the health visitor and GP for more information. Pen xx #mg
I've never heard of this before, I'm glad it's not something that will affect him but it must have been worrying for you! Glad you've written this to put other parent's minds at rest when they do their own bit of googling :) Thanks for linking up to #Picknmix lovelyReplyDelete
This is such an interesting and helpful post. I'd never heard of Duanes syndrome either so im really glad ive read this post and am now aware of it. It sounds like your little man is doing well despite it, but as you suggest, as a parent you want to make sure you full understand and are informed of anything like this that affects your children. You did the right thing in pushing for your little man to be seen and I would do exactly the same thing. Thanks for linking this up to #MarvMondays, hopefully lots of other parents now feel better informed about Duanes syndrome to now x EmilyReplyDelete
Thankyou for bringing it to attention Kirsty, it's not something that I've heard of either, I'm glad that you pushed for some help, sometimes we have to keep pushing for answers. Thanks for linking up #bestandworstReplyDelete
Thanks so much for sharing. You are so right, where your children are concerned then you always worry. I really wish that GPs and consultants would listen to mums more. We know our own children. I am so glad that this won't affect your son's eyesight though. That is the most important thing. Hugs Lucy xReplyDelete