My daughter Avery is 10 and has a severe form of epilepsy called Dravet syndrome. I am not just her mom; I am her caregiver. To put this role into perspective, I am her everything. Being the primary caregiver to a child with additional needs is both a great…
Discussion
Enrollment has been wrapped up in a large, worldwide, late-stage clinical trial that’s testing the therapy candidate zorevunersen for reducing seizures in children and teens with Dravet syndrome. According to developer Stoke Therapeutics, which is sponsoring the Phase 3 study, October marked the completion of recruitment of…
Discussion
The preteen years are stressful for many parents. Bodies are changing, hormones are raging, and emotions run high, resulting in that preteen angst we all love. Between the elementary and teen years, kids are trying to figure out who they are and who they will become. As a parent, I…
Discussion
Two children with Dravet syndrome developed severe toxicity from the anti-seizure medicine valproic acid after stopping the ketogenic diet, a case study reported. The study, the first to report the issue, showed that the diet suppressed valproic acid blood levels in both children, which rose sharply once the diet…
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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