We've made some treatment changes since our last appointment in November. First on my list was weaning the benzodiazepine. She was on a tiny dose because she suffered horrible side effects when we tried bringing it higher, and I doubted that it ever did anything productive. It's supposed to be one of the "magic three" for Dravet. It's also a very dangerous drug with horrid withdrawal symptoms, calling for a very slow weaning schedule. It took us about a month to wean her tiny dose, and she was a bit of a monster at times and had a few seizures because of it. I could tell she felt awful.
Well, about five days after her final dose, she was alert, sweet, obedient and exploding with language. Suddenly, I see her recognizing that her words don't sound quite right and she doesn't use the right grammar, and she is making a careful effort to fix that. She's also getting better at the phonics game we play ("let's think of words that start with mmm...").
We also began a daily dose of N-Acetylcysteine (NAC). This is a vitamin which has been discussed quite a bit recently in the Dravet support group. A number of kids have done well with it, improving mood and seizure control. Even though we're supposed to make one change at a time, I was anxious to start it and hopefully give her a little extra protection while weaning the benzo. I'm wondering how much of her recent "awakening" is because of NAC, and also if it has been boosting her immune system. She may be fighting something right now, but so far she's been healthy all season, avoiding many bugs around us.
We've been having a great Christmas break, spending time with both sides of the family. Melanie got some presents which will help us a lot in school, as we learn to read and write. I'm super excited about the felt boards made by Grandma Johnson!
The Lord has blessed us richly in 2013, and I know that whatever 2014 holds is in his sovereign plan and is for the good of us who love him, who have been called according to his purpose.
Happy new year, everyone, and thanks for following Melanie's progress! I know many have been praying for our little Rose. Please remember in your prayers the families of the 13 children who lost their lives to Dravet in 2013.
I'm so happy to hear that Melanie is doing so well!! We've have NAC here for awhile but haven't tried it yet. ... just another thing on the list of "things to try". I'm excited to hear it may be helping Melanie. Keep us posted! Luella's at 2 seizures so far this week so that may be something we should try sooner rather than later! All the best to you in this new year!!
ReplyDeleteWhat a beautiful way to end the year, Claire. We're giving thanks to God for Melanie's current progress. We'll also remember in prayer those who are mourning.
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