A recent seizure has me worried about my daughter with Dravet
For years, Austen seized only when she was sick. Now that's changed.
When Austen, my 8-year-old with Dravet syndrome, started taking Fintepla (fenfluramine), I didn’t have much hope. It was quite literally our last option, as every medication previously thrown at her had failed. Why, then, should I expect Fintepla to work?
But it did.
Within a month of starting the medication, the frequency of Austen’s seizures began to decrease. As time went on, they decreased more and more. In all of 2023, Austen had only one seizure. Compared with 2019, when she was experiencing up to 10 a day, that was huge.
Over the last two years, Austen seized only when she was sick, so we shifted our focus to keeping her healthy. I think we’ve done a decent job. In 2022, she had two battles with the flu, both causing seizures, and in 2023, a round of COVID-19 caused her one episode.
A life where she seized only when she was sick? It wasn’t perfect, but it sounded like a fairy tale to me.
Then, earlier this month, Austen had another seizure. But this time, she wasn’t sick. And my world, at least internally, started to crumble again.
Life gets turned upside down
We were at a birthday party. Austen was playing in the bounce house while I was across the room with the other parents. I was also babysitting that day, so I had my friend’s baby in my lap. The idea of a seizure hadn’t even crossed my mind that day — until I heard another adult yell it.
“Seizure!” came the call from across the room. My mind went blank.
Next thing I knew, I was sitting in the bounce house next to Austen. Her older brother, Atlas, 10, had gone to retrieve the oxygen, and I was holding her and telling her it would be OK. Thankfully, one of the other parents at the party was a nurse, so she sat with me. The birthday girl’s mom had taken my friend’s baby and was bouncing him on her hip to keep him occupied. Everyone helped me load the car and we headed home. My boyfriend helped get Austen out of the car, and we got her safely tucked into the couch.
The seizure had lasted roughly a minute and a half. No emergency meds were needed, and no ambulance was called.
But there wasn’t any illness.
For the first time in over two years, Austen seized for no identifiable reason. She had a slight fever afterward, but nothing else. And the fever lasted only a few hours.
It’s crazy how easily you can get used to something — whether it’s your child seizing all the time or barely seizing at all. It’s even crazier how a single event can turn your world upside down.
If Austen seized once without an underlying cause, who’s to say it won’t happen again in three months? Next month? Next week? A seizure without an illness doesn’t automatically mean we are slipping back into the darker times of Dravet syndrome, but should I ignore it as a fluke or prepare myself for the outcome that I know is possible because I’ve lived it before?
My therapist once told me I have a tendency to catastrophize situations, and he’s right. Over the last few weeks, my brain has played out every possible scenario. I know I can’t change the outcome; Dravet syndrome is a monster with its own stubborn course.
With that in mind, I’ll continue to make sure we take advantage of every good day we have. But I’ll be packing a few more emergency meds, and maybe an extra tank of oxygen in the car, just in case.
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.
About the Author
Elaine Maurer
Austen had an underlying cause…it was the fever. Most kids with Dravet have seizures anytime the body temperature elevates. She was jumping in the bounce house, and that probably caused the elevatation in her temp. takes awhile for it to right itself also, once it does she’s right as rain. We experience this often with our warrior.
We live in San Antonio…get Austen a cooling vest from Polar Products, we don’t let our little outside with it when it’s over 70 and humid or 75 and dry air. Good Luck reach out anytime!