She's in there!

It's strange how epiphanies in Melanie's treatment seem to rush upon me like a flood. In February we discussed with our neurologist tapering drug no. 2 a couple months after finishing a taper of drug no. 1. The first taper was successful. Then we waited to make sure our new rescue med would work before tapering drug no. 2. Well, the rescue med definitely works much better than the old one. But we found that out right after seeing the neurologist in July... When we had discussed completely weaning the tiny bit of drug no. 3 she's on. Well, I waited to start any tapering or weaning. Follow me so far? (I promise I'm sparing you the complicated details.) Oh, and we feel comfortable that drug no. 4 is her wonder drug and pulls most of the weight in her cocktail of seizure meds.

Then we went to the Dravet conference, where I got new and better ideas for the next steps in Melanie's care. After a pharmacology talk, I thought "hmm, maybe we can keep this small dose of no. 3, now that I kind of understand its mechanism. And maybe we want to do that taper of no. 2." As this thought was stewing in my head the week after the conference, all of a sudden there was talk in the online support group of the nasty side effects of drug no. 2 and how great people's kids are when they taper or wean it. "It's like someone turned on a light bulb inside."

There's the flood. Why did I wait? This is the drug I have felt uneasy about for a long time. It's the one that affects her appetite, weight, speech, gait, comprehension, mood, motor planning... And it depletes her carnitine levels so she needs a supplement that makes her urine smell like the penguins at the zoo, and it damages her liver so that she needs an expensive milk thistle supplement. Who knows, maybe it's even the main culprit in giving her reflux? I know all this from experience- our own and other parents', as well as the official reported side effects. Why did I wait? Why did I wait?

Last Thursday, five days ago, I decreased drug no. 2, which by the way goes by the name depakote, or valproic acid, or in other countries epilim. She's now on 5/6 of what she was taking before, and this Thursday it'll go down to 2/3 of the original dose. UMMMM...... 6+ new words within four days, some ending consonants on some words(!), multiple-word phrases, better appetite, better mood, slightly better motor planning, and... There it is.... The light bulb. It's still not as bright as it can be, but I'm going after that dimmer switch!

Praise the Lord! And I pray we can continue to decrease this drug safely. Our real Melanie is coming out, and I want to keep her.

Melanie and Mommy singing one of our favorites! (with backup)