After a year break, her seizures are back

The short story.

Eloise’s seizures have returned. We thought it was just an indication she was getting sick and they’d go away again, but they might be here to stay. And treatment options are complicated.

What kind of epilepsy does Eloise have?

Eloise’s seizures are related to a single gene she’s missing — SCN1A. This gene is the root cause of the worst genetic epilepsy known to man called Dravet Syndrome.

Most diagnosed with Dravet have a mutation, whereas Eloise has a deletion. Technically, I don’t think Dravet Syndrome is written as a part of Eloise’s diagnosis — her seizures are a little different than those who have a mutation.

But it doesn’t really matter.

Because mutation or deletion, there is currently no cure to their seizures. They are considered “treatment resistant”.

Depending on what statistics you read, around 1 in 3 individuals with this type of epilepsy die before the age of 14.

That sucks. That really sucks.

But maybe she will grow out of the seizures?

People over the years have often asked if she will grow out of her seizures. I wish we could say “Yes!” But, while there’s a decent possibility that they will get a little better over time, they will never go away.

But have you tried…?

I mean what about keto or CBD or THC or medicinal marijuana or Charlotte’s Webb or Hailey’s Hope or Rick Simpson Oil or Medical Medium or VNS or hemispherectomy or red light therapy or or Nemecheck protocol or gene therapy or avoiding food allergies or no vaccines or Fiji water or this other medicine or fill in the blank alternative therapy or idea?

Some of these things may help, but they will never fully stop her seizures.

Because, believe me, if there was a community of parents that would have found a cure for their kids’ seizures by now, I can tell you parents of Dravet warriors would have. Because they are some of the most desperate, traumatized, fiercely loving humans you will ever meet. And they are so sick of near-death events and emergency hospital visits and medicine trials and doctors — they are doing everything they can to find a way to fix their kid.

Which is why, at least with current science and research, Eloise’s seizures will never fully go away. We might have periods of rest like we just had. But they will never disappear completely.

The seizure storm of 2022

Eloise was having one seizure every month or so. Very mild. In autumn of 2022, though, Eloise had some med changes. Within a few short weeks, her seizures suddenly escalated to the point she was having 70+ seizures per day. It was scary.

Her doctor said literature notes that this seizure storm is something that happens frequently around that age for kids with Dravet syndrome.

And, even more scary, 25% of those kids don’t survive it.

Thankfully, though, Eloise did.

How she got out of her storm

During that hospital visit we ended up on an anti-seizure medication combo that began working overnight. Within 24 hours, her seizures completely stopped.

Research has shown that the combo of Stiripentol used with Clobazam and sometimes Sodium Valproate, is one of the most effective medication combos for Dravet Syndrome. And that’s what Eloise was put on (along with Keppra).

Over time, her doctor wisely weaned her off of Keppra. And then Sodium Valproate, too.

By November Eloise had been seizure-free for one year and was only on 2 medications — Stiripentol and Clobazam.

Her team, however, decided to remove Clobazam, leaving her only on a low dose of Stiripentol. Any med change is risky, but she’d been doing so well, so her doctors decided to do it.

It was a great decision.

Why we love not having Clobazam

Since coming off of Clobazam — which is a very strong benzodiazepine, like opioids but stronger and more addictive — we’ve seen huge changes in Eloise.

Her pain-induced screaming breakdowns that happened right before meds in the morning and evening have stopped. We don’t dread mornings and evenings any longer.

Her scary saliva attacks at night where Brian had to hold her up for hours at bed time have stopped. Brian can now put her in bed and then have some downtime in the evenings.

Her throwing herself backwards after sitting for 30 seconds every time has stopped. She’s now sitting for 30-60 minutes at a time.

Everyone has noticed a change in Eloise.

But.

Cause there’s always a but.

As you’ve know, her seizures have come back. And the likely cause? She’s no longer on Clobazam.

So what’s the plan?

Plan A is to get her on a higher dose of her remaining medication, Stiripentol.

So far, we’ve already doubled her dose. We may get to the point where we triple it.

But I have an itching suspicion that even a higher dose won’t get us back to where we were. Because research shows Stiripentol is most effective for Dravet when it’s combined with Clobazam.

So then shouldn’t we just put her back on Clobazam?

If it were only that simple. “Put her back on Clobazam” has me picturing those months of Eloise in pain and distress at home. It has me picturing Brian unable to rest or have downtime. It has me picturing the development regressions she was in for over a year. That doesn’t seem like a good life for her or us. I don’t want to go back

So what else can doctors do?

Well, there’s a newer medicine specifically created for Dravet syndrome that’s shown promise. It’s called Epidiolex and it’s a synthetic CBD. Many kids like Eloise have shown major improvement on it (although many it didn’t help at all). And it also often comes with the side effect of helping development.

The problem is it’s not technically approved by nor covered by Estonian healthcare. To get access, Eloise’s doctor would need to really justify why she needs it and nothing else works. But even if that happened, we’d need to find 10K+ to pay for it. Sometimes there are funds in Estonia that can help. But not always.

And we don’t know for sure that it will help.

And to make it a little more complicated

Eloise’s dedicated babysitter came down with Covid symptoms on Tuesday night. And Eloise’s seizure frequency started increasing more and more (although thankfully mild!) on Wednesday.

So it may be much of this seizure activity is just Eloise’s body starting to get ill with Covid.

All we can do is wait. And pray. And, as many like to remind us, take it one hour at a time.

Love and hugs from us to you