Fourteen months, or 425 days. That’s how long my daughter was free from status and tonic-clonic seizures. For most people, that doesn’t mean anything, but for someone with Dravet syndrome, seizure freedom of that length means everything. For over a year, my 10-year-old, Avery, didn’t experience any seizure…
Discussion
High temperatures and heat waves may make seizures more frequent, longer-lasting, and harder to manage in children and adolescents with Dravet syndrome, according to parents interviewed in a new study. Parents described summer heat as a persistent seizure trigger that could dramatically change their children’s seizure patterns and force…
Discussion
Halloween was my favorite holiday when I was a child. My grandparents threw a big party every year for their friends and family — with music, food, and games like horseshoes and pool. We would all dress up, run around like maniacs on sugar rushes, and end the night with…
Discussion
When my daughter Avery joined the youth cheer team this year, I wasn’t sure what to expect. Because of her developmental disability, speech delay, and the many seizure triggers brought on by Dravet syndrome, her participation in youth sports has been almost nonexistent. When we walked into the cheerleading…
Becoming educated and informed about Dravet syndrome is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnist’s words of wisdom to help you along on your Dravet syndrome journey.
There is no cure for Dravet syndrome yet, but here you can find more information about current therapeutic approaches, as well as experimental treatments that are in the pipeline.
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