Minnesota Nice

We had a successful trip to MN, with a happy report. I traveled with both kids and my dad up to the Twin Cities, for a neurology appointment and then an overnight EEG at Gillette Children's.
The neurologist was so pleased with how well Melanie is doing. She's growing and learning and developing, and she's only had four seizures since our last appointment, in July. She seemed quite interested in my report that after our last decrease in Yucky-Drug, before Christmas, I started to hear frequent pauses in her speech, along with lots of crankiness. She agreed with my hypothesis that she was having bursts of spikes in her brain (short seizures), and that those frequent blips would make her cranky. Well, what she found interesting was that those pauses improved when I added an extra 1/4 pill of Wonder-Drug in the mornings, and then they seemed to disappear when I bumped that up to an extra 1/2 pill. (I had made that change on my own, since she was out of town for the holidays.) So that tells us that Wonder-Drug has the capability to do the work of Yucky-Drug, without ANY apparent side effects. Yucky-Drug is yucky because it poisons just about everything: liver, cognition, appetite, growth, motor development, speech, mood.... did I miss anything? Yeah, it's pretty nasty. Oh, and too much of Wonder-Drug can make her blood too acidic, but her bicarb levels taken during our stay were almost better than normal, so we're safe there-- with room to go up if needed.

Well, the main reason I wanted this overnight EEG, besides the fact that she hasn't had even a short EEG in over a year and a half, was because I've been worried about nocturnal seizures. Most Dravet kids develop almost exclusively nocturnals at some point-- many develop them by this age. And I hear Melanie wake somewhat frequently through the night... Well, Dr. Wical came to talk with me in the morning, after reading her EEG (I think she's Superwoman- how did she read that whole thing so fast?). She walked in and said, "Her EEG looks rrrreeeally good!" She listed the few abnormalities/spikey bursts she saw, which were almost minuscule for a Dravet patient. And her nighttime waking is just that: plain old waking, not from seizures. Yay! That was the biggest comfort.

So Dr. W was definitely happy and ready to taper Yucky-Drug some more. We had already cut it down to half the dose she was on for so long, and now we have a schedule to cut it in half again over the next 6 weeks. Oh, I hope this is a fruitful and easy taper. I can live with a very low dose of Yucky-Drug if she seems to really need it, though I'd be thrilled to chuck it out the window. She's also on a teeny-tiny dose of Could-Be-Dangerous-Drug, and a smallish dose of Not-Sure-It's-Needed-Drug (which I continue to skimp on more each week or so-- trying to slowly nudge it out of the cocktail).

Dr. Wical is so impressed with how Wonder-Drug has been working for Melanie, that she said it will be her next Dravet treatment study. All because of Melanie! And she's ready to give Dr. Hecox in Milwaukee a huge pat on the back for his unconventional choice for Melanie two years ago. Wonder-Drug, by the way is acetezolamide (Diamox). Yucky-Drug is divalproex/valproic acid/epilim/Depakote.

Besides the drug taper, the plan is to add zinc and selenium to her daily supplements, and to continue with our trial of gluten-free. The jury's still out on that, but it takes a while for the gut to heal from gluten, so we're sticking with it for a while yet.

If there were a utopian hospital, I think it would be Gillette Children's in St. Paul. The people, amenities, everything... just superb. Almost hotel-like! And to top everything off, our morning nurse, Lance, did awesome Elmo and Tigger voices! Everyone loves to make Melanie smile and giggle.



Rawr! The EEG Lion!