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!

 

Hello Dairy

Melanie went without dairy for about four weeks. The first three of those weeks were hard to decipher because she got a cold. That always knocks her back at least 2.5 weeks. Her lightbulb clicked back on last Tuesday, and she's been super chatty and a bucket of bubbles since then. I also choose to believe that her seizure in the wee hours on Friday, January 25 helped hit the "reset" button, so we've seen the usual language explosion after she recovered.
Combing through all the swings she's gone through in those weeks, we never really saw a measurable difference in her when she was casein free. Since casein should be completely out of the system in at least three weeks (probably more like some days), I figured we were seeing a pretty pure picture, once she had recovered from the cold. We gave her a "challenge" with a serving of cheese last Saturday, and waited and watched for three days. No changes whatsoever. So yay!! She can have dairy again! Whew-- I was getting sick of that. Milk is surprisingly hard to avoid on ingredient lists. Plus, I never really knew what exactly I was feeding her with the few dairy substitutions we tried. I may still try avoiding too much dairy in the evening. She might have been sleeping better when we first weaned it in the evenings.

She has been gluten free for a few weeks now, and we're still unsure of any changes with that. Gluten can take much longer to completely leave the system, so this trial might take a bit longer. It really has not been very hard at all. Thanks to Karen for sharing her all-purpose flour mix with me: it really was the kick-start I needed. Melanie loves Karen's bread recipe, the chicken nuggets I made were delicious!, and it's pretty easy to find suitable GF snacks. I've purchased a few boxed/bagged snacks, but mostly it's forcing us to go more simple, natural and healthy. I'm making popcorn regularly, she loves Beanitos chips, guacamole, nuts, seeds, carrots (she could eat a whole bag in one sitting), and now she can have the occasional string cheese. GF pasta is super easy, tacos and tonight's turkey burgers are easy- she never ate them in tortillas or buns anyway. I'm going to try a GF pizza crust some night... So many people are gluten free now, that it's not so hard to do at all. Labeling is convenient, finding entire aisles devoted to GF is common, and I wonder if some companies have just decided it's more profitable to remove any traces of gluten their products uses to have, because enough people would stop buying them otherwise. If we need to keep gluten out of Melanie's diet (and maybe mom will try it too?), I think it will be very doable. I know birthdays and such may be an issue, but I already have a plan for those.

I'm looking forward to any answers we may get in a couple weeks when we travel to MN for a neurology appointment and then overnight EEG. I'm suspicious of possible subclinical and nocturnal things happening. But if I'm right, please pray that we won't let that scare us into bumping up her meds more and losing the great strides she's been making lately in her development. If anything, we need to lower them more so she can come alive even more!