Elissa, 8, with her dad

Your Child and Dravet Syndrome

When you’re a parent or caregiver, your children are your world. You want what’s best for them no matter what. Paying special attention to your child’s behavior, social skills, and emotions can help you best support your child’s development through the impact of Dravet syndrome.

Your Child and Dravet Syndrome

Elissa, 8, with her dad

Matias, 5, with his family

Dravet Syndrome and Your Child’s Development

The impact of Dravet syndrome is different for everyone who is diagnosed. Children may experience multiple seizures per day, which can have an impact on their cognitive development. Dravet syndrome, and some treatments for it, may also affect your child’s behavior, social skills, and emotions. That’s why it’s important to be aware of any changes in the following areas of your child’s life.

Behavior

Since every child is affected by Dravet syndrome differently, changes in behavior can happen for multiple reasons. Sometimes behaviors change around the time of a seizure, because of medicines, or for no reason at all.

Much like seizures, changes in behavior can be triggered. Here are some methods other families have used in the past to help manage the behavior of their child with Dravet syndrome:

Behavior therapy– A type of therapy for changing behavior patterns
A weighted blanket or vest– A method used to calm and soothe children in distress
Service/emotional support dogs

A calm “chill out” corner in the house to avoid overstimulation
Visual/picture schedules, both at home and at school
Medicines

If you find your child’s behavior is becoming increasingly difficult to manage, talk with your child’s doctor about options for managing their behavior.

Visit the Dravet Syndrome Foundation to learn more about the symptoms of Dravet syndrome.

Social Skills

Children with Dravet syndrome may have difficulties developing age-appropriate social skills. This can be the result of treatments, seizures, or other symptoms of Dravet syndrome.

Here are some tips from other families living with Dravet syndrome to help your child strengthen their social skills and relationships with peers:

Early Intervention (EI) programs– Most states have these programs, which support children, age 3 or younger, who have developmental delays
Play therapy– This is a form of counseling or psychotherapy that uses games to assess, prevent, or treat psychosocial challenges
Gym classes/swimming (when seizures are controlled)– Many recreational centers have adaptive sports programs that can help your child meet other children in the community
Groups for children with special needs– If you feel comfortable, there are lots of meetups that allow children with Dravet syndrome and their siblings to interact with other kids in a safe space

Control the environment– Slow things down and make the most of your playdates at home, since it’s a familiar place for your child with Dravet syndrome. Any time your child spends with other kids can be valuable
Playtime with siblings and friends– If you have any other children who are close in age to your child with Dravet syndrome, ask them to bring their sibling to their next playdate
Inclusive games– These are games that involve taking turns with others, like Duck, Duck, Goose. This gives your child a goal and lets them know they are able to take a break once they accomplish it

You are not alone—the Dravet Syndrome Foundation has support groups to help you better manage life affected by Dravet syndrome.

Emotions

Even if your child cannot express their feelings verbally, he or she may feel lonely and live in fear of having another seizure. These feelings may lead to anxious or depressed mood symptoms.

It’s okay to ask for help. If you think your child with Dravet syndrome or someone else in your family may be feeling anxious or showing symptoms of a depressed mood, you may want to talk to your doctor about finding the right support for them. Your doctor may recommend speaking with a social worker or psychologist.

Support for Adults With Dravet Syndrome

Support and resources are important at any age. Connect with other parents and caregivers of adults with Dravet syndrome and get additional support through the Dravet Syndrome Foundation.

Connect now

Find out about fun activities other parents
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Get support and inspiration from
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Shine Forward With Dravet

Find out about fun activities other parents
and caregivers are doing with their child
with Dravet syndrome

View the activities

Get support and inspiration from
other parents and caregivers from
Shine Forward With Dravet