Babies and Children
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.
Signs of Seizures in Babies and Children
Dravet syndrome typically starts in the first year of life, with most children experiencing their first seizure by 6 months old.21,22,49 Seizures may be triggered by fever or illness. It is thought that Dravet can be caused by a mutation in the SCN1A gene.21 The types of seizures that your child experiences may change over time:
First Seizure
Seizures may be triggered by fever or illness, but they can also occur when a child is otherwise healthy.
Hemiclonic and Tonic-Clonic Seizures
Prolonged seizures (lasting between 5 and 30 minutes) are common. This is referred to as status epilepticus.
Typically, seizures are:21,44
- Hemiclonic: Seizures that cause rhythmic shaking on one side of the body. They can also switch sides from one to the other.
- Tonic-clonic: Seizures that cause rhythmic shaking on both sides of the body.
Additional Seizure Types
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
- Myoclonic: One or two short jerks in the arms and/or legs.44
- Focal-impaired awareness: Unresponsive staring that may occur with fiddling hands or chewing movements. Often leads to sleepiness.44
- Atypical absence: Long, gradually occurring periods of impaired consciousness with reduced muscle strength.47
- Nonconvulsive status epilepticus: When a seizure lasts for more than 5 minutes or a child is unable to properly recover between multiple seizures over 5 minutes or more.48
- Obtundation status: Varying levels of consciousness paired with reduced control over posture and myoclonic jerks.49
Stabilization
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
Early Intervention Matters
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 may be at risk for several medical and developmental issues.17,20,45 These may include:
- Slow developmental progression
- Delayed language development
- Poor appetite and eating habits
- Decreased muscle tone
- Inattention
- Hyperactive behavior
- Sleep difficulties
- Poor coordination
- Crouched gait
It is scary to talk about, but children with Dravet syndrome are also at risk for sudden unexpected death in epilepsy (SUDEP). Those who experience tonic-clonic seizures are at higher risk for SUDEP, and that risk increases further with seizure frequency.54,55
DIACOMIT® (stiripentol) is proven to control clonic and tonic-clonic seizures associated with Dravet syndrome. It is the only FDA-approved antiseizure medication developed specifically for seizures associated with Dravet 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.
Julia’s Dravet Journey
Duane and Daryl, Julia’s parents, share how DIACOMIT has made a substantial difference for their daughter.
Navigating School
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
Share the Navigating Life With Dravet Syndrome Booklet
This resource can help your child’s school personnel better understand Dravet syndrome.
Making Room for Play
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. The following activities can be enjoyed by the whole family and offer opportunities to celebrate everyday wins! 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.
Arts and Crafts
- Using different media, such as paint, pencils, or clay, can help your child practice their motor skills.
Board and Card Games
- Games help children learn rules while interacting and communicating with others.
- Multiplayer games are a great way for the whole family to spend quality time together.
Summer Camp
- Camps specifically for kids with seizure disorders provide a safe place for them to interact with peers who understand their condition. But they aren’t your only option!
- Check out the Epilepsy Foundation’s recommendations for choosing a summer camp.
About DIACOMIT
DIACOMIT is the only treatment specifically for seizures associated with Dravet syndrome in children as young as 6 months.