We know that caring for a baby or young child with Dravet syndrome can be challenging. Understanding what to look for can help you and your child’s healthcare team prepare the best plan to manage your little one’s seizures.
Dravet syndrome typically starts in the first year of life, with most children experiencing their first seizure before 8 months old.21,22 Seizures may be triggered by fever, illness, or vaccination. While the link between vaccination and seizures is still being explored, it is important to note that vaccines do not cause Dravet.20 It is thought that Dravet can be caused by a mutation in the SCN1A gene.21
The types of seizures that your child experiences tend to change over time:
Seizures may be triggered by fever, illness, or vaccination, but they can also occur when a child is otherwise healthy.
Prolonged seizures (lasting between 5 and 30 minutes) are common. This is referred to as status epilepticus.
Typically, seizures are:21,44
Different types of seizures may emerge. Around 4 years old, seizures may occur more often in clusters and during sleep.21-23
Other types of seizures that can arise include:21
Over time, seizures often decrease in length and frequency, but they will not completely disappear.21
Around age 6 years, some children with Dravet syndrome will develop an unsteady gait, which affects their ability to walk.45
Getting your child’s seizures under control as soon as possible is an essential treatment goal. Children who experience frequent and prolonged seizures during key developmental years are at risk for several medical and developmental issues.17,20,45 These may include:
DIACOMIT® (stiripentol) is proven to control seizures associated with Dravet syndrome. It 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, visit About DIACOMIT.
Children with Dravet syndrome can attend school, which plays an important role in their cognitive and social development.
Your child will likely need an individualized education program (IEP) to support them at school. The IEP sets academic and cognitive goals designed specifically for your child. This plan may involve behavioral, occupational, physical, and speech therapy.45
You may need to familiarize school personnel with your child’s diagnosis and ask that they know basic seizure first aid. You should also share your child’s seizure triggers (e.g., loud noises, heat) and ask them to make efforts to limit your child’s exposure to those triggers. Give the appropriate school personnel your child’s seizure action plan and any rescue medication prescribed by their doctor.41,43
This resource can help your child’s school personnel better understand Dravet syndrome.
Discovering new ways to keep your child happy and engaged can be difficult for any parent or caregiver. Play is crucial for healthy development, and you can explore fun activities that also provide therapeutic benefits. Always check with your child’s doctor before starting possibly strenuous activities to make sure they are comfortable with your child’s participation, and never allow unsupervised activities.
DIACOMIT is the only treatment specifically for seizures associated with Dravet syndrome in children as young as 6 months.