eye updates

Today was Sol and Seb’s appointment at the eye clinic. Seb is very long sighted and has astigmatism, he gets eye checks every three months. His is much the same for now so that is good news as we don’t have to put any nasty atropine in his eyes this time around.

Sol is a different story – from birth we always noticed her eyes were ‘different’ to the others. She was cross eyed and she never saw us approaching her especially on the left. Sol would often get a fright if you came up to talk to her. She has nystagmus which is a shake of the eye ball, Sol’s would rotate and shake and at 6 months was very noticeable. She was found to have no peripheral vision and that she too was severely long sighted, also with astigmatism. She also has strabismus which is predominantly in her left eye but it appears to switch over. With this in mind at 6 months they were worried about optic nerve damage and the neuro doctor did some tests. The results of these tests showed that she may have to have surgery and they prescribed her glasses and patches.

Her patches were fun (not), the first ones she had, the first day made her face swell up like a ball. Sol’s skin blistered and burned and it took weeks for it to heal.

The second brand of patches did not react quite so quickly on her beautiful soft skin, ten minutes this time instead of an immediate reaction – again distress and damaged skin as the result.

Third brand of patches she has ‘tolerated’ until recently and now her skin is sore with them, though not at the minute dangerously allergic if you know what I mean.

The patches were for her good eye to try to strengthen her bad eye, bearing in mind her good eye is still not great. Cosmetically her eyes have straightened out and the last couple of years I have heard the words ‘developmental’, ‘patience’ being used by the doctor.

However the last appointment and now this one have brought not such good news. I was aware that Sol’s nystagmus has returned, though not always obvious to the lay person but I can see it. Her vision with her glasses on is fairly good, but it seems the right eye has over worked and the left eye is now suppressed. Suppression with these conditions means the brain shuts down the signals tot he bad eye and once those signals stop there is not a lot can be done. Sol’s test today involved testing her left eye, she could not identify any of the pictures held up in front of her even with her glasses on. With her right eye she was and quite happy pointing out the plain black line drawings on the test books. She was made to walk across the room with obstacles in it … now you and I would look ahead and take the best clear route. Sol would walk until she came to an obstacle then weave round it.

So the upshot is they are worried again, she already has an appointment for the 24th of September to see the neurosurgeon and he will do more optic nerve tests and what ever the neuro guys do. I was also told that surgery will not correct her vision, and for cosmetic reasons only will she be offered an operation. That said she is beautiful and with her glasses on looks normal so I suspect the surgery wont be needed to improve her looks.

2 thoughts on “eye updates

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  1. I agree 100% she doesn't need any thing to improve her looks as she is so beautiful…..I will be keeping Summer close in my thoughts and in my heart…Hoping that a miracle will acure and she will not have to have surgery…. hugs and luvKim

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