My daughter, Daphne is way more involved that most on this board (maybe even anyone on this board), so I hope sharing her experience doesn't scare anyone. Just keep in mind that each case is different, and Daphne is VERY unique.
At any rate, she had "normal" vision as a newborn, and it seemed to detioriorate around the same time that she developed a seizure disorder at 3 months old. She definitely had vision, but her tracking was not nearly as consistant. At that time, we had her eyes checked thoroughly, and they appeared to be "normal". When Daphne was about 8 months old, I noticed one of her eyes was getting "lazy", and her eyes just didn't look as bright. We saw an opthamologist, who saw significant scarring on her right retina, and also optic atrophy (on both sides, but right much worse than left). Over time, this seemed to worsen, and Daphne eventually lost almost all her vision in her right eye.
Daphne had two strokes in January of this year (at about 15 months old), and finally was diagnosed with MM disease. She had her surgeries with Dr. Steinberg in March, and has done really well.
We noticed that Daphne's original angiogram report seemed to state that her right opthalmic artery was supplying blood to the left side of Daphne's brain (which was severely starved for blood, and which was 20% smaller than the right side) , and I came up with this theory that Daphne's body had rerouted blood away from her right eye, out of necessity, because the left side of Daphne's brain needed the blood more.
I mentioned this to Dr. Steinberg during our last visit at Stanford, and he thought the theory made sense. He said there was no way of knowing for sure, and that in a normal brain it would be very unlikely that an artery would redirect blood in such a manner, but that in Daphne's case, it could very well happen.
Jenny
BTW -- Daphne has pretty decent vision in her left eye, and Dr. Steinberg thinks that if Daphne's visual detioration was due to lack of blood flow - since her surgery seems to have been a success - she should have no more visual loss