“Mom, we need help. Baby is having a seizure.” The words, unclear and jumbled, came from my 10-year-old daughter, Avery, who has Dravet syndrome. Avery loves imaginative play, and her favorite thing to do is play with her baby dolls. Recently, that play has included her baby dolls having…
Discussion
No new or unexpected safety issues were identified in a long-term study that tracked outcomes in people with Dravet syndrome taking the antiseizure medication Fintepla (fenfluramine). Of 265 people with Dravet syndrome, only about one in 10 experienced a side effect that investigators judged…
Discussion
A few months after my daughter Austen passed away due to complications of Dravet syndrome, we acquired a new dog. My husband, Dakota, and I had begun talking about how both of our families have traditions of naming animals after loved ones who have passed on. His aunt and…
Discussion
Note: This column describes experiences the author’s daughter has had with vagus nerve stimulation. Not everyone will have the same response to treatment. Consult your doctor about any potential therapies you may be considering. When my daughter, Avery, began having seizures at 3 months old, I knew we’d do whatever…
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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