After sharing my health sorry so far and while I am awaiting diagnosis I am very honoured to be hosting blog posts from other bloggers about heath conditions they or their loved ones face everyday
Today on my Health Story Series is the lovely Beth who writes a wonderful blog Twinderlmo where she writes beautifully about life with her husband, son (born December 2008) and identical twin daughters (born June 2013)
You can also find Beth here:
This is the first time I have ever written about this. Not because I find it hard to talk about but because in all honesty, it’s something we often forget about and it’s become so normal.
My seven-year old son Charlie has a condition called Duane Syndrome. I had never ever heard of it before but it’s a condition that affects the muscles in the eye, basically meaning that one or both do not turn fully due to them not being connected correctly.
I first noticed Charlie’s eye when he was around six months old. He seemed to quite often to go cross eyed when looking at me. I spoke to the health visitor who advised me it was probably because he had a wide nose bridge that the eye appeared to be doing this. I gave it a little longer until he was more mobile and at around the age of 14 months after mentioning it numerous times only to be told everything was fine, that I started to really put my foot down. I spoke to various Doctors to be told a range of things. That he possibly has a lazy eye, he may have a squint, it’s just his wide nose…but I wasn’t convinced.
We finally were referred to an Opthamologist around the age of 2 after much debating with various professionals. The first trip was just awful as they had to put drops in his eyes to dilate the pupils which really upset him and was incredibly distressing. It was at this appointment that I heard about Duane Syndrome for the first time. I heard this and immediately freaked out especially as the possibility of surgery for the first time was also mentioned. It was really quite overwhelming to go from the thought of him having a wide nose bridge to the thought of my child undergoing surgery. We were then referred to our local clinic to start more regular testing to then decide what options were best.
After many appointments, it was decided that surgery may not be the best option and that we would start alternative treatment. We then started “patching” which meant Charlie had to wear an eye patch over his “good” eye to help strengthen the weaker one that did not turn fully. At first it was hard to get him to comply but as he only needed it for a few hours at a time we did manage it and he never had to wear his patch at nursery which he wasn’t keen on.
I’d love to say we really had a positive plan of action but with various consultants changing roles so often, we constantly lived in limbo unsure what would happen. The saving grace through all of this was that Charlie never ever said he had vision problems as a whole. Infact, if anything he adapted so well to the syndrome himself as he started to turn his head slightly to compensate.
When he was five after much monitoring and appointments where we stopped the patches, Charlie finally had a first “eye test” at an actual opticians and it was decided there that he had a slight prescription and that we would start with glasses. I hate to admit, it was at this point that I lost my tiny remaining sliver of faith in the services. Over the last few years, we had gone round and round in circles with no one really able to give us any clear options and now it seemed it was all trial and error. Wearing glasses I felt, could ultimately be detrimental but I conceded and tried them. Charlie was also older now and could tell us a lot more.
After about six months of being discharged, I gave Charlie the option regarding his glasses as he was saying more and more he didn’t feel they were helping at all. So we stopped with them. We will still go for an annual eye test but I think after all this time the person best judged to decide is Charlie himself. Afterall, they are his eyes. He knows what is best and will have no qualms in telling me if anything changes. All his school work and teachers agree that he has no visual problems and he turns his head so much that only very rarely does his eye not fully turn.
I do worry in the future that people may say something or pick on him for being that little bit different, but we are all so used to it that I think everyone else too will be. I am very lucky that we have had no real issues with his sight and I do hope this continues into the future. It’s not a widely known syndrome but I always say it’s something that makes him that extra bit special.
Thank you so much Beth for sharing your sons story with us and wish him well going forward.
Why not pop over and see what else Beth is writing about over on her blog Twinderelmo