And I was wrong on my previous post. I told you that she was going on "Ativan," but it's Diazepam (or Valium, as it's commonly called) instead. Same stuff in a lot of ways. For our purposes, only difference is the name.
On Thursday, we got to Children's at about 4. By 6 or so, she was hooked up to the vEEG (video electroencephalogram: electrical study of the brain with a video camera to record seizures). They also put a Hep-lock in her hand. That way, if the Valium started to give her trouble, they could give her the antidote quickly. On top of that, she was hooked up to a Pulse-Ox to monitor her heart rate and oxygen saturation levels. This was all standard procedure and mainly for precautionary reasons. The vEEG was basically because she hadn't had one in about 2 years. Since she was going to be there overnight, and most of her seizure activity occurs at night, Chief and I both felt it was a good opportunity to get an update in the brain department.
She got the Valium at about 9 pm.
And would you believe it? That whole night she hardly did anything. Oh, she'd snore a little. She even moved around a little. But other than that, she really just slept. That's very unusual.
Most nights I can hear her seizing. She'll have maybe 3 big ones even before I go to bed. Then I'll wake up in the middle of the night and hear a couple more. And those are just the ones I hear. Nevermind the ones I sleep through.
That night in the hospital, I thought I heard one or two in the early morning. The EEG computer has a little button you can press to make a notation on the study if you see a seizure. That way, the reader can easily find the hot spots over the course of 12 hours of video and brainwave feedback. I pressed it twice. I didn't see her having a seizure, but I thought I heard that all-too-familiar disjointed breathing pattern that happens during one.
At around 8:15 the next morning, Chief came in to look over the recording. After standing there for awhile, watching the recording whiz by and looking for the tell-tale scribble on the screen, he quietly announced that he wasn't seeing anything. I told him about the two markers I left with the button. He looked for a seizure at the same time of the marker.
Nothing.
Not one seizure the whole night.
***
We'll continue to give her the Valium every night for a month. Any longer than that, and her brain will get used to it. If that happens, then the drug will be useless. And like I said in my last post, this whole therapy is in order to give her brain a boost. A much needed break from constant seizure activity. And the thought is, that that rest will have a lasting effect on her seizure control. Even if it's just a few good months, it should improve her quality of life, so it's a welcome respite.
And in my mind, any day without a seizure is a good thing. We'll take all we can get.
3 comments:
That is great. Praying for you guys.
Denna
Yeah! I hope that it continues to help.
I hope the drug does what it's supposed to do. Give her a much needed break! Keep us posted. Austin is going to see a new neuro today. Keep you fingers crossed for us!
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