We went to West Suffolk Hospital yesterday for Joshua’s routine checks. After a sight test using pictures getting smaller and Josh wearing 2 different types of glassing each covering the opposite eye the ophthalmologist discovered he see’s better with his left eye and thinks it is a good idea to start patching it. We then saw his eye consultant who dilated his pupils with drops and looked into the back of the eye. He discovered Josh had astigmatism in the right eye which explains the poorer vision. He said he thinks patching works well in children that do not have nystagmus but ones that do it can be very hard, which I can understand. Joshua’s nystagmus would become more rapid in the right eye whilst the left is patched and would find getting around twice as hard. The consultant is going to wait 3 months to check the vision again encase the testing was wrong as Josh wasn’t very co operative in the sight test, and go from there with either glasses or patching. I’m slightly worried as the ophthalmologist was a bit concerned the longer we wait the higher the chances the vision deteriorates in the right eye. She did however say that if he needs glasses for something like astigmatism its best to go with them before patching. (Sorry bit confusing). Hopefully in 3 months nothing changes. I trust they have made the right decision.
I was recently asked to come and talk to some nurses and Doctors about what it was like from a parents perspective to have a child diagnosed with Nystagmus. This was very scary as they originally told me it would be for about 10 people but when i got there it turned out to be 75!! I have never spoken in front of a group of people before and was scared at the thought of 10. I had to think fast so managed to get my blog page up on the huge screen behind me to fill some time. It also came in handy as we have a video clip of Joshua’s eyes when he was a baby.
I thought this was so good of the hospital as they primarily wanted me to talk about all things they could improve on to help future parents. Joshua see’s Doctor Vivian and he really is a brilliant Consultant so it was hard to think of things to moan about. The main one was the lack of literature which they said willl be promptly changed. Brilliant hospital, we are very lucky.
Jen