Receiving a Dravet diagnosis for your child can feel like venturing into uncharted territory. We hope that this information will help you feel prepared for conversations with your child’s doctors and educators and with others in your community.
Dravet (pronounced “drah-VAY”) syndrome is a rare, treatment-resistant form of epilepsy.3,17-19 It occurs in one of 15,700 births in the United States, and symptoms usually occur in the first year of a child’s life.24 Dravet syndrome is named after Dr. Charlotte Dravet, who in 1978 first described the condition as severe myoclonic epilepsy in infancy (SMEI).19
For patients with Dravet, brain scans and tests, like the electroencephalogram (EEG), may appear normal.21 For that reason, genetic testing is highly recommended. Though not fully conclusive, research shows that nearly 75% of patients with Dravet syndrome have a mutation in the SCN1A gene.21
Genetic testing is available at no cost for children up to age 8 through the Behind the Seizure® program at Invitae.
Unfortunately, seizures associated with Dravet syndrome may not respond to the standard antiepileptic drugs, and some medications may even make the seizures worse.3 For children enduring regular seizures, understanding the underlying cause can help guide more precise treatment.
Getting seizures under control early can make a difference. Frequent and prolonged seizures can lead to several medical and developmental issues, so it’s crucial to figure out the right combination of antiseizure medications for your child.3, 20, 21
A mother and caregiver shares her daughter’s Dravet syndrome diagnosis journey and success with DIACOMIT.
DIACOMIT® (stiripentol) is the only FDA-approved antiseizure medication developed specifically for seizures associated with Dravet syndrome in children as young as 6 months. It is indicated for children weighing 15 lb or more and taking clobazam.1 To learn more about DIACOMIT, visit About DIACOMIT.
Organize your questions and observations to prepare for conversations with your child’s doctor.
What To Do During a Seizure
It can be overwhelming and nerve-wracking to watch your child experience a seizure. But you can help them. To keep your child as safe as possible and prevent injury, you can:41
Administer any emergency treatment that your healthcare provider has prescribed to control seizures.
Review the Centers for Disease Control and Prevention’s guidance on Seizure First Aid.
It is also important to keep a record of your child’s seizures. A thorough record can help you and your child’s doctor understand triggers and evaluate potential treatment options. The free, comprehensive tools at seizuretracker.com can help. When tracking seizures, be sure to note the following:42
Because seizures can strike at any time, they can complicate simple daily activities and make spontaneous plans difficult. Each child will have a different experience with Dravet syndrome, but you know your child best. Talk to your child’s doctor about the following ways to address your child’s unique needs:41,43
*Be sure to consult with your child’s doctor before incorporating a ketogenic diet or other lifestyle changes into your child’s treatment plan. You may require input from various members of the healthcare team to address your child’s specific challenges.