Are my daughter and I seeing a new trigger for seizures?
I thought fever was her only warning left, but it appears there's something else
When Austen, my 8-year-old with Dravet syndrome, started having seizures, most were for no apparent reason. Her only identifiable trigger seemed to be fever.
It’s true that as an infant, Austen went through a short period when bright lights would cause her to have thousands of what we called “eye-roll seizures” each day. But those went away when she was a year old, once we started using tetrahydrocannabinol, or THC, therapy. With that resolved, her only identifiable seizure trigger was being sick. That’s been consistent.
These seizures suck, but they suck a little less when I can anticipate them. When Austen first gets sick, I know to prepare myself and her environment for the inevitable seizure. And before that, I try to keep her from getting sick as much as I can. Compared with other families we know who see seizures over almost everything, we feel lucky to have just the one trigger.
Until recently, that is.
A new trigger?
Back in March, Austen had a seizure at a birthday party when she was in a bounce house with other children. I thought she might have been getting sick, but that wasn’t the case. It just seemed to be one of those seizures that happen for no particular reason. It stressed me out because she’d been doing so well with her seizure control, but I tried to put it behind me.
Austen went into a bounce house at school a few weeks later without any concerns, so when she recently asked to go into a bounce house at a different event, I let her.
Less than five minutes later, she was seizing.
I’m not sure what’s causing these seizures exactly, or why she didn’t have one in the school’s bounce house, but I’m officially considering them a new seizure trigger for Austen. I hate to take bounce houses away from her, but I hate to have her seizing even more.
Thankfully, we’re from a small community, and several of the event’s workers, including my cousin, ran over to check on Austen when the seizure happened. They let her rest in an air-conditioned trailer that was on the site, and within an hour, she was up and going again.
Two seizures in less than two months. Is that a fluke? Is it the start of things getting bad again? I’m not sure. We still have room to increase her dose of Fintepla (fenfluramine), so we’ll try that next. If that doesn’t work, I’m not sure what our next step will be.
But I do know one thing. We’ll do whatever we can to keep Austen seizure-free.
And for now, that means no bounce houses.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
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Catherine plunkett
Kennedy, my 7 year old with dravet has gotten a seizure every time we attend a soft play or a bounce house party. We have had to tearfully decline almost every birthday party this year. It's been very sad for her, but it is most definitely a trigger.