DIACOMIT is the only FDA-approved antiseizure medication specifically for seizures associated with Dravet syndrome in children as young as 6 months. It is indicated for patients weighing 15 pounds or more and taking clobazam.
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. Biocodex is committed to improving knowledge, so patients can receive earlier diagnoses and manage rare epilepsies, like Dravet syndrome.
Dravet (pronounced “drah-VAY”) syndrome is a rare, hard-to-treat form of epilepsy.3,17-19 It occurs in 1 in 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 a syndrome. It was previously known as severe myoclonic epilepsy in infancy (SMEI).19
For patients with Dravet, brain scans and tests, like an initial electroencephalogram (EEG), may appear normal.21 For that reason, genetic testing is highly recommended and may support a diagnosis. Though not fully conclusive, research shows that over 85% of patients with Dravet syndrome have a mutation in the SCN1A gene.50 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 contribute to several medical and developmental issues, including an increased risk for sudden unexpected death in epilepsy (SUDEP), so it’s crucial to figure out the right combination of antiseizure medications for your child.3,20,21,54,55
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 how DIACOMIT helps families celebrate everyday wins, 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 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
It is also important to talk to your child’s doctor about your child’s risk for sudden unexpected death in epilepsy (SUDEP). People who experience tonic-clonic seizures are at higher risk for SUDEP, and that risk increases further with seizure frequency.54,55 SUDEP is hard to talk about, but understanding the risks may help you reduce them.
*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.
Review the signs and risks of seizures during childhood.
