tulip
New Member
Posts: 3
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Post by tulip on Dec 17, 2009 16:24:05 GMT -5
My 4 year old son has esotropia. (the right eye turns inward) This started a few months after seizures began. The opthamologist says it's not Battens related and wants us to start thinking about surgery to straighten the eye before his brain totally ignores the eye. Do any of your kids have this problem? I kinda think it is related to battens and don't really want to put him through the surgery. We are continuing to patch hoping it will help. Also, do your kids go to opthamologist to check for progression or what kind of eye doctor do they see?
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Post by nikkiv on Dec 21, 2009 12:21:07 GMT -5
As for, the esotropia, I don't really know, but we have never taken our daughter to check the progression since she had her original ERG. We really didn't see any point and did not want to have to put her under sedation just to know that her world was getting darker. We just kind of keep track of the progression by what she seems to be able to see, like TV etc. When she quit looking at the TV when it was on, then we knew her vision was probably mostly gone.
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Post by Amy Lombardi on Dec 22, 2009 15:36:36 GMT -5
If you glance through the Faces of Batten section on the website, you'll notice that MANY of the children have the exact same issue. Because the eyes are not being used (due to the blindness) the muscles can go weak and cause the eye to drift.
I would say no to the surgery because unfortunately, the Batten Disease will continue to cause progressive vision loss until there is no vision left. I'm not a doctor though.
Feel free to give us a call at the BDSRA office if you have any other questions. 1-800-448-4570.
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Post by dfadsgfds on Apr 1, 2010 19:25:11 GMT -5
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