Dravet Syndrome Doesn’t Only Involve Seizures

It was the summer of 2016, and I was trying my best to finish my grocery shopping with three kids in tow. My list was short and the store was slow that morning. It should have been a fast and easy trip. But the calming music dancing through the speakers was soon drowned out by my child’s ear-piercing screams. Pacifier, toys, and even my phone were smashed to the floor in an effort to calm her down. Nothing worked.

To the store’s credit, they didn’t ask me to leave. The employees didn’t say anything, but they did give me looks that let me know they felt bad for me. A few older women inched closer, possibly in fear of the noise coming out of my child that frankly didn’t sound human. Each asked if I wanted them to try holding her while I got my shopping done. Each got the same answer.

I would have let those strangers hold my baby at that point if I thought it would have helped. I was that desperate. But it wouldn’t have helped then, just like it wouldn’t have helped the following week or every other time I tried to take Austen to the store in her early years of our battle with Dravet syndrome.

What I didn’t know then was that Austen wasn’t just being obstinate, and she didn’t simply hate grocery carts. There was turmoil inside her brain every time we stepped into a grocery store that she could not comprehend. She dealt with it by crying and screaming.

Austen was completely normal before her first seizure. And for the first year of her life, it seemed like seizures were the only symptom of Dravet syndrome she was experiencing. I had read there could be others, but I didn’t want to believe it could happen to my child. I didn’t want to worry about things that had not yet come to pass, so I almost missed them when they showed up.

Yes, Dravet syndrome is mostly characterized by frequent and prolonged seizures, but that is not where it ends. Children with Dravet syndrome can also suffer from autism, sleep issues, chronic infections, low appetite, behavioral delays, and delayed language and speech, among other things. At 5 years old, Austen ticks off all but one of those secondary symptoms — but that day in the grocery store I had no idea.

We were lucky. Austen was put into early intervention therapy right away with a therapist who read up on Dravet syndrome as much as she could. Her trained eye could see the snags in Austen’s development that I was missing. It was through her that I first learned of sensory processing disorder and how to help Austen when she gets overwhelmed. Soon Austen could last 10 or 20 minutes in a store without a meltdown, and now she rarely has one at all.

When Austen graduated from early intervention therapy, she was leaps and bounds ahead of where she started out. Just as early anti-epileptic therapies work wonders in getting seizures under control, early intervention is just as beneficial for all the secondary symptoms.

Before COVID-19, Austen was enrolled in three therapy programs: physical therapy, occupational therapy, and applied behavior analysis therapy. She might not ever have perfect handwriting, or be able to do a backflip on the trampoline, but by accepting and working on these issues early on, she has the potential to have a normal childhood in a normal learning environment. 

As normal as possible for as long as possible — that has always been our motto with Austen. It’s never easy to accept something is wrong with your child, or that more might be wrong with them on top of what you initially thought. But with therapies, we are able to achieve our goal, and our motto can still stand.

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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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