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)

In all things God works for the good...

We just left our new family. We traveled up to Minneapolis for a three-day international Dravet conference, put on by Dravet.org. There were 200 families and many of the biggest names in Dravet there, including Dr. Dravet herself. I've never been with a group of people with whom I feel more connected. Every table of new faces we ate a meal with proved to be fruitful and an instant connection. Amazing... People from all over the world, different personalities, backgrounds, ages... All fiercely in love with their children and always searching for better things for their suffering, yet happy children.

It was heartbreaking to see the other Dravet kids there, especially the older ones. I feel hopeful for numerous reasons, but last night my heart ached so bad for my little girl that I curled up in bed with her... until she literally kicked me out. At this point, I'm actually feeling most concerned for her posture and gait, but that has also renewed my hope and passion for ABM. I told a lot of people about that method and saw many of them take a pen to their notebook, so hopefully more children will benefit from it. I also acted as a cheerleader for diamox, our wonder drug of the last year and a half.

We learned a lot about Dravet syndrome itself, and all things that go along with it, tools to deal with issues, financial and future planning.... All useful knowledge, but so densely packed into three days, that we are now physically, mentally and emotionally exhausted. Praying Nick will survive going back to work tomorrow and the rest of the week.

We made some great connections and new friends which I know will last and continue to be extremely valuable. I hope we can go to the next conference in two years.

Romans 8:28
deo gratia

With the family who live just 2 blocks from Nick's grandparents in smalltown, MN.

 



Melanie and Luella. Melanie's got a fat lip and nose from having too much fun with Grandma earlier in the day...