Monday, January 28, 2013

Does its job

Well, the pulse-ox machine works for its intended purpose. Nick and I were repeatedly awoken by the alarm in the wee hours Friday. So, Nick went up a few times to untangle or fiddle with it to make it stop false-alarming. (that's his job, since I can't fall right back asleep after running upstairs) Well, it kept going off, so I went up to try it and to offer her water, since her sinuses are still draining from this cold. She was warm and trembling. Sight fever, so I gave ibuprofen and kept asking if she was ok. "Yes." do you feel sick? "no." I went down and got back in bed, and not two minutes later the alarm goes off again, I look on the monitor and see her arm outstretched and shaking... 
Got the midazolam in quick and convulsions were soon over. Her eyes were goofy for a while, and she was barely responsive, so I gave the rest of the syringe at 8 minutes from the start. There was a whimpered moan with that, so I think she was coming out of it.
She didn't wake up to try and shake it off right away- just slipped into (finally) a deep, restful sleep. I lay down to sleep with her, but after an hour I realized I would never be able to sleep. I roused her and she responded, recovered, so I went back to my bed.
She's been ok since then. Unlike most Dravet parents, we get to ask "why?" Most DS kids have random seizures all the time, but for two years Melanie has only had them with sickness. She'd been through the worst of the cold already, so why now? Well, she had a fever so I thought it might be sinusitis, but there are no signs of that. In the morning I discovered that she had missed a dose of meds, which I'm thinking, combined with still suffering from the lingering cold symptoms, brought her threshold down. The fever could have been a result of seizure activity. Maybe the restlessness and trembling before the "big show" was like an aura, which is actually seizure activity itself.
I'm anxious to see her get over this cold, so we can see if the diet is helping at all. She's been totally GFCF for over a week, but we see no change yet. Keep the germs away! We need a healthy girl!

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