It's definitely not that Christian didn't perform by showing off his seizure talents. Oh, he performed. I knew he would. These new seizures are hard and they happen about 10-15 times a day. They seem to get a little longer with each one. His face gets red and he starts breathing faster, as noted by the respiration alarm that goes off mid seizure after he exceeds the normal limit.
We got the results from the EEG over the last thirty six hours or so. I actually find them very interesting and very telling. So here goes.
He is experiencing classic tonic-clonic seizures. That's obvious by the looks of things. But, in addition, for the first time I got some further information about his EEG patterns. Christian's EEG is abnormal. I know this and I know that aside from Divine intervention, this will be his brain for the rest of his life. It just is. But what's fascinating is that he has slow brain waves, he gets a sharp spike at the onset of a seizure, then the waves go flat, then they enter into "normal" range while the seizure is still happening. After the seizure they settle back down into his regular abnormal, slow waves.
I've always kind of believed that seizures are the injured brain's way of trying to make connections and misfiring. During some of Christian's seizures, we've witnessed a clarity fall over him. I saw his first attempts at smiling during a short seizure. And during these new larger ones, he's been vocalizing, almost yelling through the duration of the seizure.
Now, neurologists may argue this means nothing other than that Christian has a severely abnormal brain pattern (not our neurologists, the one who read the EEG actually thought it was quite interesting). But I think this EEG just proves what we've thought all along - that some of these seizures are his brain's way of making connections, no matter how abnormally it's done.
Furthermore, and this is just a Momma's speculation, but I think the Ambien brought on these new, more intense seizures because it was too much for Christian's brain to handle. It was waking too much up at once maybe?
And then Christian's brain was like - I can't handle this! I'm wiggin' out, Bro!
And then Christian was all - Let's get it together, Brain. Not cool, Dude. Not cool.
This is what a hospitalization in isolation from my normal life does to me. I think Christian and his brain are having conversations.
Anyway, I'm so glad we have the team of neurologists and epileptologists working with us. They are so cool, so thorough, so accessible, so...un-neurologist like.
Despite these findings and our previous decision not to medicate, we are going to try Clobazam. These new seizures are just too hard on Christian and I fear they could get even more intense. I know when to fold. Besides that, we still need to address Christian's evening time freak outs. And we're hoping the Clobazam will kill two birds with one stone, being that it's in the Valium family. I'm hoping it will calm him, at the very least.
So here's to another day in the hospital! Yipeee! Momma, Christian, and Christian's brain signing off.
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2 comments:
Ashleigh has been on Clobazam for about 6 mths now and it has finally been the miracle we hoped it would be. She is 32kg and we were on 5mg twice a day as well as Keppra 1000mg twice a day and 300mg epilim twice a day. Just this week we had to increase her clobazam to 7.5mg twice a day. Success.
I have to say, these pictures of Christian are adorable! Good call on Mr. Bunny. Wasn't it crazy being in the hospital environment again? So strange. I was so grateful to have a healthy kid who is usually not there : ) Thank goodness for them being that way, right?
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