According to the Centers for Disease Control and Prevention (CDC), approximately 3.4 million people in the United States live with epilepsy — and 456,000 of them are children. Navigating a child’s epilepsy diagnosis can feel overwhelming.

A member of MyEpilepsyTeam wrote, “There’s another type of seizure affecting my child, and I’m exhausted with worry. It’s so hard and frustrating.”

This article is a guide for parents, family members, and caregivers of children diagnosed with epilepsy. It aims to help you navigate available resources and challenges to keep your child safe at home and at school, and to ultimately help your child live an independent life.

What Causes Epilepsy in Children?

A seizure happens when there’s a sudden burst of abnormal electrical activity in the brain. Epilepsy is usually diagnosed when a person has two or more seizures that aren’t caused by a temporary problem, like a fever or low blood sugar. For most people with epilepsy — between 65 percent and 70 percent — the cause of seizures unknown.

Other times, epilepsy occurs as a result of various medical issues, including:

• Infectious diseases (such as meningitis or encephalitis)
• Head injury or brain injury
• Tumors
• Hemorrhage
• Brain malformations
• Trauma during birth
• Genetic disorders

According to the Epilepsy Foundation, there’s an association between autism and epilepsy. Children with autism spectrum disorder are slightly more likely to have epilepsy, and children diagnosed with epilepsy are slightly more likely to have autism.

Create an Epilepsy Care Team

Caring for a child with epilepsy involves fostering a team of healthcare professionals to support your child from diagnosis to long-term disease management. This team may include the following specialists:

• Neurologist — A doctor who specializes in the medical treatment of brain and spine disorders
• Pediatrician — A primary care physician who usually has an established relationship with your child and family and can provide a big-picture view of their health and family history
• Pediatric neurologist — Neurologists specialize in neurological disorders of the brain, including pediatric epilepsy.
• Epileptologist — A neurologist who specifically deals with epilepsy in children
• Pediatric neurosurgeon — A neurosurgeon who specializes in performing epilepsy surgery on children
• Pediatric nurse — Nurses with a specialized background in treating children
• Nurse practitioner — A higher-level nurse with additional training in a variety of medical conditions
• Neuropsychologist — A psychologist who specializes in brain disorders
• Clinical psychologist — A psychologist who can help you and your child navigate any potential negative emotions that might arise after an epilepsy diagnosis

Keep a Consistent Medication Schedule

A promising aspect of an epilepsy diagnosis is that the condition can usually be controlled with anti-seizure medications. Some children may have fewer seizures as they get older, and many can become seizure-free, but it depends on the type of epilepsy your child has.

While these outcomes are positive, figuring out what treatment options and dosages work to control seizures can be tricky. Keeping a medication diary, such as this printable one, helps document which medications you’ve tried and which have been successful. This diary can often be crucial in helping your child’s neurologist find the right epilepsy treatment.

Once a medication has been prescribed, it’s critical to set a consistent medication schedule for best results and to reduce the risk of seizures. Timing is also important to minimize medication side effects. Try not to let your child miss doses of anti-seizure medication — missing medications can increase seizures in children.

Ensure Your Child’s Safety With Epilepsy

To avoid injuries, safety precautions should be a top priority for children who have a seizure disorder. All caregivers, friends, family, and babysitters of a child who has epilepsy should be trained in seizure first aid.

You and other caregivers should be aware of your child’s seizure triggers and prevention measures. Work with your child’s neurologist to create a seizure action plan that other adults can follow too.

Seizure First Aid

If a child in your care has a seizure, it’s important to stay with the child until the seizure stops to keep them safe. Time the seizure if you can. Do not put anything in their mouth, and don’t try to hold them down. If they’re not awake, place the child on their side to protect the airway.

Call 911 if the seizure lasts longer than five minutes, if the child has repeated seizures without waking up in between, has trouble breathing, is seriously injured, or the seizure happens in water. If you’re unsure, or the child isn’t returning to normal after the seizure, call for help.

Manage Epilepsy at School

When a child with an epilepsy diagnosis enters or returns to school, navigating the school setting and communicating with teachers and staff can be frustrating and scary. However, you can ease the transition for everyone by:

• Notifying the school before the child’s first day back
• Providing the appropriate staff members (principal, school nurse, and teachers) with the necessary medical paperwork
• Educating everyone involved about your child’s condition

Paperwork

Upon returning to school, you should have a seizure action plan to give to your child’s school nurse, teacher, and principal. This document outlines specific steps to follow in case your child has a seizure at school. If your child must take medication while at school or has to carry emergency seizure medication, you and your doctor may need to complete additional school forms.

A parent can request a 504 Plan, which is a legal document that outlines accommodations for a child to help them be successful in school. It includes educational accommodations as well as medical provisions such as medication administration, reasons to call 911, and seizure first aid.

If your child’s seizure disorder results in learning loss, interferes with cognitive skills, or leads to behavior concerns, they can be further assessed to see if an individualized education plan (IEP) would be appropriate.

Support Teens With Epilepsy and Foster Independence

The teenage years are an important transition between childhood and adulthood. Encourage your teen to start managing their own medications. Organizational tools like pill organizers might be a good way for teenagers to start. Teens might consider carrying an extra dose of medication with them when they’re out of the house, in case they forget to take a dose.

Your child and their friends should think about becoming certified in seizure first aid. As they spend more time away from home at extracurricular activities, with friends, or at work, it’s helpful for people around them to know how to handle a seizure emergency.

Tend to the Mental Health Aspects of Epilepsy

Although epilepsy isn’t a mental illness, the disruption it causes to daily life can negatively affect a child’s mental health. It can be difficult for a child to realize they have different struggles and limitations than their friends do. Coping with these emotions can be confusing and challenging for young children.

Childhood bullying is a chronic problem in schools. Research from the journal Epilepsy & Behavior shows that children diagnosed with a seizure disorder were twice as likely to be a victim of bullying as their healthy peers. Having a chronic medical condition can also result in low self-esteem and isolation, leading to depression and anxiety.

Adding a psychologist or support group to your medical team can greatly benefit both you and your child. Helping your child develop positive coping strategies will benefit your child not only through school but also through adulthood.

Healthy ways to support your child may include:

• Being open and honest with your child about their condition
• Talking to your child about their feelings
• Avoiding language that can make them feel like a burden
• Encouraging interests and activities that your child enjoys
• Educating other parents, teachers, caregivers, and friends about epilepsy
• Building a support network with other children who have epilepsy
• Making sure your child gets enough sleep and eats a healthy diet
• Staying positive

Take Care of Yourself

Having a child with a medical condition can be stressful, but learning about epilepsy and having open communication with your child can make the adjustment smoother for everyone. It’s also important to take time for yourself, as taking care of your mental health will benefit your entire family.

Join the Conversation

On MyEpilepsyTeam, people share their experiences with epilepsy, get advice, and find support from others who understand.

Do you have a child who has been diagnosed with epilepsy? Let others know in the comments below.