No rest for the weary

Man it’s been a rough season around here. The good news, I hope, is that it’s just a season.

I had planned to write about our shorter-than-expected long Tartu hospital stay. But that plan got derailed yesterday when seizures started.

But let’s give you a little background.

A few weeks ago (after that weekend of like 15 seizures), they put her on a new medication called stiripentol/diacomit. It’s newly been approved for use as young as 6 month old in those with Dravet syndrome. (Eloise doesn’t technically have Dravet, but she’s missing the affected gene and should respond to same medications in a similar manner.) We were hopeful, since this medication is recommended as the first one to try for seizure control for kids like her.

Sadly, though, a big seizure came a few hours after her first dose. Doctors thought it might have been related to the muscle improvement med that we also increased that day. So we reduced that one. After the second set of bad seizures a week later, they took her off the muscle med completely. Which is why, when the EEG Thursday — a week after her second emergency hospitalization — showed things had actually worsened as far as epileptic brain activity for Eloise, they knew it had to be the new medication that had been the problem — stiripentol.

So we came up with a plan to get rid of stiripentol, increase one of her other meds (sodium valproate), and soon add her back on her muscle development medication.

Which is why we were excited that Eloise took her last dose of stiripentol yesterday morning.

Since that time, in a little under 24 hours, she’s had 17 seizures so far. That’s over double the worst seizure day for her she’s ever had. And she falls asleep between almost every one of them — which means they are really rough on her little brain.

The last time we were in a place where she couldn’t stay awake between seizures, she was rushed to the hospital emergency within a day.

I’m really hoping we don’t have to go back yet again. Especially not after we literally just left the hospital on Friday.

I know that seizures change around the age of 2 for kids with Dravet, generally worsening. I’m hoping that this is entirely medication related.

Regardless, though, we miss our snuggly cute kid. We’ve seen glimpses but, by and large, she’s mostly been asleep since yesterday morning.

Virtual hugs, prayers, well wishes, thoughts — all is accepted.