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Sunday, March 11, 2012

The Guessing Game

Let The Guessing Game begin!

We had a three week run with Ambien. And the overall perception is that it definitely does something to his brain. I got to hear sounds I had never heard. I got to see more smiles and I might have even heard a giggle, still not sure about that.

The first two weeks I loved the Ambien because it seemed to stop his irritability in it's tracks. I would call it his "Happy Juice." It's like he would enter another world. His reactions were quicker, he had more strength. He would stop whining and crying and make other noises. Just like in the stories I've read about, it was like a light switch. It would turn on thirty minutes after giving it to him and dim out about two hours later.

But then the whining and crying came back. And it seemed almost worse. My theory is that the Ambien would make him so tight and toned out that his legs would literally tremble. I think physically, it made him sore, which caused more pain and whining, possibly.

I also think it increased and/or strengthened his seizures. This is not a surprise to me. Any time you mess with an already fragile brain, this is the risk you take. I know this. But the benefit has to be greater than the risk. Is that the case with Ambien? Are we getting greater benefits than risks in terms of seizure activity? I'm not so sure. And it does really put into perspective how mild and, dare I say, under control, his seizures were, now that I see how they've amped up.

Over the last week, we decided to stop the Ambien, due to the increased irritability and seizure activity. I've been observing Christian every day and he's been sort of "off" ever since he was on the Ambien. He's more irritable. His sleeping is off. And the seizures are a stronger version of what he usually has. I've been observing to see if it changes, if he needs to stabilize, or if we need to take further action.

The good news is that he's still moving and looking and reaching. None of that has gone away. He's still got his skillz! And I'm still observing, still unsure. Blaming this all on Ambien and then tonight he comes down with a snotty, green nose. Of course he does. So is it really that something else was brewing all this time? Welcome to life with a non-verbal child - otherwise known as The Guessing Game.

As you can see, I'm stuck. I'm willing to restart the Ambien just to see if that is really what's causing the shift in well being. I mean if he continues or gets worse, that means it's the Ambien, right? Yes, it does give me more smiles, bigger smiles! But I don't want to push this at the expense of his physical comfort. There are twenty-two more hours in a day, and, although those two Ambien hours are very interesting and revealing, Christian's overall contentment is what is THE MOST important thing for those remaining twenty-two hours.

What to do? What to do? So far, it will be waiting to see if he's coming down with something. Because if that's the case, it will explain this last week. If not, The Guessing Game continues.

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