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!

New diet

We are fully into the GFCF diet now. We removed dairy a couple weeks ago, and planned to stick with just that for three weeks. Melanie got sick about a week into it, so it was hard to decipher if cutting out dairy has made any difference. The first week of it, she seemed a bit more moody and easy to tantrums- a possible withdrawal symptom. But then again, perhaps she was just starting to get sick. And of course, when she is ill, all of her skills and overall wellness take a step back for a couple weeks.
I decided that it wasn't really worth waiting to start removing gluten. So I believe Friday was her first completely gluten-free day. We haven't seen any changes, and she is still under the weather. Feeding her hasn't really been much of an issue. I haven't even purchased special flours or baked anything, I haven't stocked up on GF pretzels or any of those substitute foods. She's been snacking on nuts, seeds, veggies, veggie chips, guacamole, popcorn from the family farm... She still asks for string cheese and crackers, but it hasn't been too hard to redirect her so far. She likes almond milk (lots of calcium) and even the disgusting "cheese" I've melted on corn chips and put on her taco bowl tonight. Blech. I'm thankful she's not picky.
Once she is fully recovered from this cold, we should start seeing if the diet is making any sort of impact on her in any ways.

Jumping into a new diet, and Mommy plays doctor

We had a good holiday break. For a couple weeks before Christmas, Melanie had become quite screamy and moody, with frequent tantrums. I noticed that she would have frequent pauses mid-word while she was talking. She talks a lot, so I noticed it a lot. The only possible explanation I can think of is increased seizure spikes in her brain. This could explain the change in her mood and behavior: Imagine having a brain blip every 10 seconds or so throughout your day, every day. When someone is talking to you, you would miss a word or two each time that happened. If you're moving or doing a task, somehow your hand just made it from your mouth all the way down to the table in a split second- but you don't remember it actually traveling down. You know that was what you intended to do, but how did it just suddenly get there? When I know that sort of thing is going on, I try to cut down on sudden movements, which might confuse her, and I give her extra time to register things.

That kind of constant spike activity can really be a detriment to learning, as I recall hearing in a lecture at the Dravet conference. That would also explain why, after the initial boost in speech and cognition after our last depakote decrease, she seemed to be plateauing again. So, with the doctor out of town for the holidays, I decided to play neurologist myself, and added just an extra 1/4 pill of diamox (our favorite drug) in the mornings. Instant change! Part of it was the happiness and excitement of Christmas and traveling to MN which boosted her spirits, but it was clear that she was happier and calmer in her brain. The pauses decreased, and speech started exploding again! I think we could safely boost it to an extra 1/2 pill, to help even more. I'm sure this set-back happened because of the tapering of depakote, but I refuse to go back up on that awful drug....especially after seeing that diamox can effectively take its place.

Two big news items for Melanie, besides what you just read: On Thursday night (1/3/13), Melanie jumped, with both feet off the floor, for the first time ever! She seemed to reach both hands between her legs to pull herself up by the butt to do it-- it was cute. And she did it more than once, and more times the next morning. Of course it's not consistent, but she can do it!
The other news is her new diet. We're starting the GFCF diet for her, to see what sort of brain-clearing improvements we may be able to get from it. We're starting by cutting out casein (dairy) for at least three weeks, and then we'll cut out gluten for three weeks. Perhaps then we'll try adding back casein to figure out which, if any of those things actually makes a difference. I'm kind of thinking already that dairy has been affecting her sleep. She has slept a little better and woken up happier without dairy at night. She's still had a little during the past few days, as we sort of ease into it, but I've tried avoiding it in the evenings. I will be taking careful notes.

James and mom start school again tomorrow, so I have been saving Melanie's Christmas presents so that she has brand new activities to do during school. We all need routine again after the break.