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.
