Since we had positive results with the taurine, the doctor suggested we try GABA (http://en.wikipedia.org/wiki/Gamma-Aminobutyric_acid), the next step in amino acid therapy. It's supposed to help aid cognitive function as well as low muscle tone. The doctor said if the full recommended dose was "too sedating" for Kaiden, to cut back to a 1/2 dose, and to only give it at night.
O.M.G. the GABA is like crack for Kaiden!! Or speed, caffeine, whatever. He does NOT sleep with this stuff. Had to cut back to 1/2 a dose and only give it in the MORNING. It takes 5 hours for him to wind down just a little bit. Not that it makes him hyperactive, it's just that he WILL. NOT. sleep if he's been on it past noon. He gets his dose in his breakfast with all his other supplements. Normally, if he doesn't finish all his breakfast, I save it to add to his lunch or supper so that he gets all of his supplements for the day. Now though, with the GABA added in there . . . it better be gone by lunch and then nighttime sleep won't be horrible, but it won't be great. Cannot, CANNOT give it to him at night. Either way - lunch or supper - when he finally does go to sleep, he is up on the hour, every hour, for 3 hours and very very thirsty at each wake-up. Then he will sleep for another 2 hours. If he had it at lunch, then after that last wake-up he will sleep the rest of the night. If at supper . . . nope. After that last wake-up, he is UP for the day, even if it's 3am. Ooooh boy, not cool!!! Melatonin has zero effect on him, so that's not an option.
This is not normally how kids react to GABA . . . I guess for most kids it helps them sleep. LOL, I get the kid that refuses to sleep . . . but he's been this way since the seizures stopped over two years ago. After awhile, you get used to less sleep, but to be honest the paleo diet helps with that. I used to be able to nap anytime, and now I can't. If I nap, I'm up all night. The only way I'm tired during the day now is if Kaiden has a sleepless night and needs me to up be with him. Most of the time, if he's up, thankfully he's content to play in his room until morning. He cannot climb over the gate in the doorway . . . yet.
Anyway, it seems to be helping his mobility. He's up to 14 - 16 steps unassisted, when it's made into a game. On his own, when it's his own idea, about 4 steps. He'd rather crawl, it's easier and faster at this point. And man, can he scoot when he crawls!!! He's FAST!!
Our follow up appt for the GABA is on Oct 26th. We'll see what's recommended! :)