I'm a Bad Mama. Last fall I just let everything slide. I'm not sure why or if it was laziness, the insurance or the fact that I am sick of having the kids gets more and more tests. When insurance denied both the MRI and the EEG in Boston, I didn't even fight it. So as the date for an ERG approached, I let that go also.
The NYC neuro gave me hell about it last fall. That annoyed Jeff, but she's right, ESPECIALLY about the ERG. This is the test that verifies that the Vigabatrin isn't affecting his peripheral vision. Of all the tests to let slide, that is NOT the one. We have always known that there is a potential for Austin to lose his peripheral vision. We didn't like the idea, but Vigabatrin is the only drug that works for him. We chose to walk the fine line between seizure control and side effects. Once the peripheral vision is gone, it's gone...bye bye, sayonara...not coming back.
Since I have never known another child to have this problem, we've kind of pushed the thought to the back of our minds. Then NYC neuro reminded me again last Friday that I need to get it scheduled. I called the neuro-ophthalmalogist in Boston. She can't fit us in for an ERG under anesthesia until OCTOBER. They are supposed be every 6 months. His last one was done May 2006. Do the math, not only did we miss the 6 month mark, but we are blowing WAY passed the 12 month mark also, almost to 18 months. NYC neuro feels we can just get visual field testing done, but the local peds ophth said no way, no how, only an ERG will suffice. The scheduler for the Boston neuro-ophth said if the procedure could be done without anesthesia, then they can fit him in sooner. Granted the last time we had this done under anesthesia it was a nightmare, but I just can't imagine doing this to him without it. The Boston neuro-ophth said they put electrodes on the eye and send stimuli. They then test the eye's response to the stimuli and this tells them something. I'm not sure I would want to have this done without anesthesia.
Not sure what we are going to do...maybe keep the October appt and see if we can find someone local to do a cursory visual field test? I have another message in to NYC neuro. We'll see what she has to say.