Epilepsy for Parents and Caregivers

Many parents, family and caregivers have similar concerns with the care they give to people with epilepsy. When the person you care for is a child, these concerns become more difficult and more important to address.

470,000 children in the United States have epilepsy. According to the Centers for Disease Control and Prevention (CDC), approximately 336,000 kids have at least one seizure annually. Whether you’re the parent or the caretaker of a child with epilepsy, you’ll have many questions and concerns.

Epilepsy affects people at different ages and in different ways. For some, it will be easily controlled with medication and outgrown after a few years. For others, it may be a lifelong challenge affecting many areas of life. We’ll help you find information about seizures and epilepsy in youth of all ages, from newborns to the teenage years. Some information is unique to specific ages, while others are common for all children with epilepsy.

Epilepsy in Kids

About 470,000 American children under the age of 17 have active epilepsy. Recognizing and treating epilepsy early is key. Aside from the physical impact, children with epilepsy face social challenges that can hurt self-esteem.

Learn more about epilepsy in kids

Talking to Kids About Epilepsy

Children need answers. If epilepsy or another health problem affects your child, a family member or friend should give the facts and let your child ask questions. The most important message for any child is that people with epilepsy are just like everyone else.

Learn how to talk to kids about epilepsy

Newborns and Infants with Epilepsy

Seizures in newborns are different from seizures that occur in older children and adults. In fact, other perfectly normal responses in babies can be mistaken for a seizure. It’s important to receive a proper diagnosis from your newborn’s doctor.

Learn more about seizures in newborns

Teens with Epilepsy

Caring for teens with epilepsy requires special patience and understanding. Epilepsy can aggravate or create problems of low self-esteem, dependency, mood swings, or behavior. It can also raise questions about driving, drugs and alcohol, employment, and relationships.

Learn about teens with epilepsy

College and Careers

Choosing a college and career is an exciting time in your life. While you may have concerns, having epilepsy shouldn’t keep you from enjoying either of these experiences.

Learn about college and career choices

Caregivers Play Many Roles

The role of a parent of a child with epilepsy is a big one. We can help you find the information, support, and resources you need as you help your child through their journey.

    As a Parent

    You are the one giving information to the health care team and the primary one working with schools, Camps, or other community groups. You are staying up at night worrying and caring for your child during and after seizures. You want them to Stay safe but may have to balance this with how to let them be kids and develop independence.

    As a Manager

    You are learning what epilepsy is, causes, treatment options, complications, and more. You need to manage your young child's epilepsy. As your child grows, you need to teach him or her how to manage their epilepsy. If your adult child can't manage their epilepsy on their own, you may need to continue in the manager role or find someone else or an agency to manage their care.

    As an Advocate

    You may have to advocate for your child to get the care they need, to get an appropriate education and any necessary accommodations, and to have their rights respected.

    As an Educator

    You must educate so many people about epilepsy and how to treat and respond to your child. You want your child to be treated just like anyone else, but this may take work over the years.

    As a Patient

    Epilepsy affects the whole family - the person with seizures, parents, siblings, grandparents, and more. How it affects you will be different than how it affects the child, other children in the family, or your parents. But it will affect you. As a “patient”, you'll have needs too and would benefit from information and support to help you.

    Related Resources

    Register Your Child for Kids Crew

    For kids 14 years old and under to meet new friends and get involved in the community.

    Epilepsy Foundation Individual and Family Services

    We can connect you with support groups, travel assistance programs, and respite care.

    Lifestyle and Communication Toolkit

    A list of self-management tools, SUDEP resources, and lifestyle and safety resources.

    Wellness Support Toolkit

    Explore how we define wellness and the choices that lead to a fulfilling life.

    Epilepsy & Seizures 24/7 Helpline

    Explore how we define wellness and the choices that lead to a fulfilling life.

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    Find an Epilepsy Specialist

    Ready for help? Find an Epilepsy specialist who can help understand your child’s diagnosis and treatment options.