New Dravet syndrome seizures present a parenting dilemma

As a kid, I didn’t play team sports, but I did a lot of cheerleading and gymnastics. I loved dancing around, tumbling, and challenging my body to do things it typically wasn’t meant to do.

Now as a mom, I love sharing this passion with my two oldest children. I’ve taught them how to flip, twist, and turn since they were teeny-tiny. But when it comes to my 8-year-old daughter, Austen, who has Dravet syndrome, I’ve avoided all of that, as well as many other things. What if she has a seizure amid a flip?

The only sport I’ve OK’d is soccer. The balls are a lot softer and aren’t necessarily being thrown at her as in baseball, for example. Austen has had some amazing coaches who’ve helped her build endurance while letting her rest as needed. It was the perfect sport for her, and I thought we’d stick with it.

I’ve never had to say no to a sport before because I encouraged Austen to play soccer. She accepted that and never questioned it — until now. She recently came home from school with a flyer for cheerleading. She was so excited to show it to me and her stepdad, Dakota. Yet while she beamed from ear to ear, my heart was pounding in my throat.

Recommended Reading

May 7, 2024 News by Marisa Wexler, MS

Fintepla more potent than others in taming Dravet seizures: Study

Making the tough calls

I know peewee cheerleading isn’t the same as competitive cheerleading, and the stunts, if there are any, are performed a lot lower to the ground. And the most tumbling anyone would do is probably a cartwheel. But I also know that Austen will want to try anything the other girls are doing, which is a safety concern.

A few weeks ago, I probably would’ve felt differently about her trying a new sport. Her seizure control had been so good, but she’s had two seizures recently that put my nerves on edge in a way they hadn’t been in a while. I now find myself pondering dangers and “what-ifs” at every turn.

Over the past four years, I’d embraced the idea that, with her seizures seemingly under control, Austen had “normalized.” It’s something I once only dreamed of. But now that dream is over.

Before we started treating Austen with Fintepla (fenfluramine), her seizures were so bad that I couldn’t even imagine a life with only one seizure per month. Now I’m devastated that it might become our normal again.

We haven’t decided yet whether we’ll let Austen participate in cheerleading. I’m weighing all of the options and hoping that whatever decision we make will be the best one. Cheerleading or not, our choices will always be about what’s best for Austen, despite my fears and worries.

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.

Print This Article