This week, I cried in an individualized education program (IEP) meeting. I didn’t even know what an IEP meeting was until I sat in a room full of education professionals the year my daughter Avery started preschool. An IEP was necessary for Avery, who is now 10, due to…
Discussion
Children with Dravet syndrome experience developmental and language delays, but the nature and severity of their communication difficulties can vary widely, a small study in Spain suggests. All six children in the study showed delays in language development, but their ability to understand and use language varied considerably. Some had…
Discussion
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…
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.
Get regular updates to your inbox.
