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.
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