When my daughter began having seizures at 3 months old, I immediately went into fight mode. At that time, Avery was a perfectly healthy and typically developing baby. I thought there had to be a reason these seizures were happening, and once we figured that out, we could find…
Discussion
Treatment with the approved Dravet syndrome drug Fintepla (fenfluramine) was more effective than a placebo at reducing seizure frequency and extending periods without seizures among a diverse group of children and adolescents with the rare disease, data from three late-stage clinical trials show. The oral therapy, widely cleared…
Discussion
Recently, a back-to-school photo of my late daughter, Austen, appeared in my Facebook memories. It was from our homeschool years, and she chose a pajama day to kick off first grade. Clad in pink and white striped pajamas with large pink bows in her pigtails, she smiled at the camera…
Discussion
My 10-year-old daughter had an absolute meltdown when it came time to leave a family birthday party the other day. I tried to bribe her. I got down on the floor beside her to reason with her. I reminded her that there could be consequences if she didn’t listen to…
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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