So today we increased her Keppra and Dilantin and he sent us to the eye doctor to get the ok to start the sabril (vigabitrin).
The eye dr was great and we did get the ok to start the medicine. We have to follow with him very closely because one of the side effects of this med is peripheral vision loss. Emily HATED the eye drops! That was her only melt down of the day. She was tired and hungry and she just did not want to be held anymore.
She loves to just lay on the couch on her bobby and stretch out so for her to be held or in her car seat all day was asking a lot of her but she did so good!
Our hopes with vigabitrin is that we will be able to start to wean her off of some of her seizure meds and that we will gain seizure control and she will begin to improve developmentally.
Her occupational therapist did notice better muscle tone and she is not a tight either.
Poor thing though she is losing her hair on the back and side of her head. She does not hold her head off the floor, pillow, boppy yet and she has begun to turn her head better. We turn her on her sides as much as she will tolerate it and she hates tummy time.
So I guess for now I just need to find some wide headbands to cover her little bald head. :)
We also are waiting on genetics testing. She doesn't really fit any obvious disorder so we wait and see what the next tests shows.
He does believe it is genetic but for some children its just such a rare cause they may never find it. I did get a letter about one of our tests and if insurance does not cover it they said it costs $5,000. So lets pray it covers it, i find out tomorrow.
From here if this medicine does not help will will start the Ketogenic diet. I can't explain it well it like Adkins on steroids. All fat with a little protein, no sugar at all. They don't know why it helps but for some kids it stops the seizures. We will do more research on that later.
We will be going to the Cleavland clinic soon for a 2nd opinion. After she gets started on the vigabitrin he wants us to go up there and see what they have to say. The neuro says its one of the best in the world. I have not done much reasearch on them yet though.
Pretty good day and the great news is we have nothing to do tomorrow, no therapy, no appts, just rest!! I get to sleep!! AHHH.....