If Vigabatrin had a facebook page, I might consider becoming a fan.
I know for sure I would click the "like" button.
The report on Vigabatrin is...so far, so good. I'll start with the "cons" because that list, so far, is short.
Christian is drugged. He doesn't have the glassy eyed, lazy, not doing anything druggyness about him. But there is a difference. Prior to beginning Vigabatrin last Thursday, I had Christian completely off all medications so going back on a high dosage of a very potent drug has definitely changed Christian. I'm not so sure that's a bad thing at this point.
Christian's seizure activity has decreased to almost nothing but a few tiny things that are questionable at best. I used to wonder what life would be like when Christian doesn't have anymore jerks. Now I know!
Some other interesting findings - No more throwing up. For the last month or so that has been a huge issue. But hasn't it always been an issue, you ask. Yes, but we have our ups and downs with it, good weeks and bad weeks. We were in a bad month. He was throwing up in the middle of the night, which he hadn't done in a long time, and made several attempts, about half successful, to throw up during the day.
After Vigabatrin was introduced, it was literally night and day. He immediately stopped throwing up, or even attempting it. This leads me to believe that his throwing up is definitely related to his tone, which leads me to my next observation.
Christian is a noodle. He is completely relaxed. Not drugged relaxed, just relaxed. There is gravity, which is hard for Christian to feel since he is always tight. But every part of his body is relaxed, from his back to his extended neck to his stubborn, pointed toes. We can actually properly snuggle him like a baby. His legs can be adducted (spread apart) so completely that I can sit him on my hip while carrying him with his head on my shoulder. There's no more jerking back in extension. It's just a calmness.
He's not crying anymore! I mean he cries if he's upset about something or wants to be held or if he's tired. But no more all day long crying. And his cry is different. There is different pitch and inflection in his cry. It's very interesting. It's no longer just a monotone, but instead, there are highs and lows in his voice.
His body was so different that during therapy his PT couldn't believe it. She said he was like a different kid - especially because he was allowing so much without protest. He tracked his silver pom-pom and made a few attempts to reach up to it. So, although he's a little drugged, he's still alert and moving. He's allowing more things to be done with him. He used to protest and complain from the slightest bit of stretching or moving sometimes. But so far he's been going with it! If his tone continues in relaxation like this, we may need to reconsider even getting any Botox.
We'll see how this plays out. It is new so as his body gets used to it, things could change again.
But, as it stands now, Mama likey.
Looking in the mirror during PT, bending one leg all the way up on the ball. He's not looking at himself here because, if you notice, he's fixed on Spongebob and Patrick on the left.
"Hey, that's me in that dirty mirror that my mom should really clean."