Well going to the eye doctor is usually an experience but add on top of it withdrawal from pain meds. Not a great combo. He screamed through out the whole exam. The doctor has not been able to get a good look at the back of his eyes for a while so yup it means he needs to get them checked under anaesthesia. So they are going to arrange that he gets an ERG done at the same time.We have had problems of his eyes moving while the ERG is been done and so they get readings but not true readings.
The whole ERG test is so he can stay on Sabril. Do you know if your doctor does not submit the eye paper work they (FDA) will wean your child off the medication. They don't give 2 hoots if its working on keeping you child seizure free they just want to prove the side effects. Well our Finnian has been on Sabril since December of '05 as well as a whole crap load of other seizure meds and his retina's are fine. So now in order for my son to keep getting Sabril he has to go under anaesthesia every 3 months just to have the ERG done. The only way we can get around this 3 mths testing is if he is non responsive to light. We have questioned his response to light for a while now he doesn't respond to visual stimulation much any more. Finnian's vision has always been questionable due to the occipital damage on the right and now the left occiptal is a a seizure hot spot. So it looks like his right field of vision is basically gone now too.
So it looks like Finnian's vision diagnoses will be changing from legally blind visually impaired to non light recptive totally blind.
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