• Once your child is diagnosed with epilepsy, having a care team of specialists helps ensure they get the care they need.
• Keeping a consistent medication schedule and being prepared for seizure first aid are vital to your child’s health and safety.
• Mental health is an important aspect of well-being both for children living with epilepsy and for their caregivers.

According to the Epilepsy Foundation, epilepsy affects approximately 3.4 million people in the United States — 470,000 of whom are children. Navigating a child’s epilepsy diagnosis can feel overwhelming and stressful. One parent 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 designed as a guide for parents, family members, and caregivers of children diagnosed with epilepsy. It aims to give insight on how to navigate the available resources, challenges, and treatment options to help your young child be safe at home and at school and ultimately live an independent life.

What Causes Seizures in Children?

In around 70 percent of cases of epilepsy, the causes are unknown. The rest occur as a result of medical issues including:

• Infectious diseases (meningitis, encephalitis)
• Tumors
• Genetic disorders
• Hemorrhage
• Brain malformations
• Trauma during birth
• High-risk pregnancies

Research from the Epilepsy Foundation revealed that 3 out of 10 children with autism spectrum disorder also have a seizure disorder. It has also been found that approximately 3 out of 10 people have a change in the structure of their brain that can cause seizures.

Medical Care Team

Neurologists are doctors who specialize in the medical treatment of brain and spine disorders. They’ll diagnose epilepsy in children who have more than one seizure not directly caused by trauma or another health condition. Other health conditions that can cause seizures include infection, diabetes, high fever, low or high blood sugar, brain injury or concussion, and genetic syndromes.

Because there are many types of epilepsy, which are categorized based on the part of the brain that’s affected and what happens during the seizure, epilepsy looks different for every child. Therefore, it’s important to bring together a comprehensive medical team that can fully support your child from diagnosis to long-term management of the disease.

Read about ways your child’s doctor can help you find support.

Your child’s care team members may change over time as you move from the diagnosis stage to the treatment and management stage. However, the care team will likely consist of these types of medical professionals:

• Pediatrician
• Pediatric neurologist
• Pediatric neurosurgeon
• Pediatric nurse and nurse practitioner
• Neuropsychologist
• Clinical psychologist

Pediatrician

Also considered a primary care physician, this team member should be in the loop from diagnosis to when the child becomes a young adult. The pediatrician usually has an established relationship with the child and can capture the big-picture view of their health and family history.

Pediatric Neurologist

A neurologist specializes in neurological disorders of the brain, and an epileptologist is a neurologist who specializes in treating epilepsy. Both of these doctors will be important members of your team that will diagnose your child’s type of seizures. They’ll also know about interventions to control your child’s epilepsy going forward and how to measure if the treatment plan is working, and they can make adjustments as needed.

Although there’s not one specific test to diagnose epilepsy, doctors typically make a treatment plan based on the results of blood tests, electroencephalogram (EEG) abnormalities, family history, and a full health assessment. An EEG is a test that involves placing electrodes on the scalp to measure brain wave electrical activity and diagnose seizures.

Pediatric Neurosurgeon

If a child experiences severe epilepsy that doesn’t respond to multiple antiseizure medications, surgery may be a part of epilepsy treatment. Surgery can involve either removing the area of the brain causing seizures or implanting a small device that helps regulate electrical activity in the brain. If your child is a candidate for epilepsy surgery, a neurosurgeon will lead this intervention.

Pediatric Nurse and Nurse Practitioner

From bedside nurses to care coordinators, pediatric nurses have a specialized background in treating children and are a great resource for educating parents of children who’ve received a diagnosis of epilepsy. Nurse practitioners have more training in a variety of medical conditions and are a valuable addition to the medical care team.

Neuropsychologist

A neuropsychologist is a psychologist who specializes in brain disorders. They’ll be able to assess how epilepsy has affected your child’s ability to learn and if there might be a potential learning loss at school.

Clinical Psychologist

Because it’s common for epilepsy to alter a child’s mood, create learning barriers, and cause other mental health complications, a clinical psychologist can help you and your child navigate the negative feelings and emotions that often arise after an epilepsy diagnosis.

Consistent Medication Schedule

A promising aspect of an epilepsy diagnosis is that the condition can usually be controlled by antiepileptic medication. Additionally, most children will eventually outgrow their childhood epilepsy. While these outcomes are positive, the upstream puzzle of figuring out what medications work and at what dose can be tricky. Keeping a medication diary, such as this printable one, helps document which medications have been tried and which have been successful. This diary can often be crucial in helping your child’s neurologist find the right medication.

Once a medication has been prescribed, it’s critical to set a consistent medication schedule for best results and reduce the risk of seizures in the future. Timing is also important to minimize medication side effects. Research shows that 73 percent of people typically take their medication each day as directed. However, 50 percent of people admit that they sometimes forget to take a dose. Missing a dose of an antiseizure medication can significantly increase a child’s chances of having a seizure.

The goal of epilepsy medication is to stop all seizure activity. It’s encouraging to note that some children outgrow certain types of seizures.

Read more about tips for taking epilepsy medications.

Safety

To avoid further injury, 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. They should also be aware of triggers and other prevention measures to ensure the safety of the child if they have a seizure when the parents aren’t nearby. Parents should work with the child’s neurologist to create a seizure action plan that other adults can follow.

Seizure First Aid

If a child diagnosed with epilepsy is in your care or presence and is having a seizure, it’s important to follow these steps:

• Keep calm.
• Stay with the child until the seizure stops.
• Time the seizure.
• Don’t restrain the child.
• Move objects away to prevent a head injury.
• Place the child on their side to protect the airway, if they’re not awake.
• Administer emergency seizure medication if available and you’re trained.
• Call 911 immediately if the seizure lasts longer than 5 minutes.
• Call 911 immediately if it’s the child’s first known seizure.

Understanding the child’s seizure triggers (lights, lack of sleep, certain foods, missed medication, etc.) and workable prevention measures add an extra layer of safety. Depending on the child’s age, specific prevention and precautionary measures should be discussed with the neurologist. These measures include whether it’s safe for your child to:

• Go swimming
• Drive a car
• Climb on tall play structures
• Participate in contact sports
• Play video games
• Follow a specific diet
• Bathe alone
• Ride a bike or horse
• Attend a camp away from home

Identifying sports and activities that pose a danger depends on the child’s age, type of seizure, and treatment plan, as well as your conversation with their doctor. Just because one child with epilepsy isn’t allowed to do certain activities doesn’t mean that another child will have the same restrictions.

Managing Epilepsy in the School Setting

When a child enters or returns to school with an epilepsy diagnosis, 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 doctor paperwork
• Establishing an open line of communication
• Educating everyone involved about your child’s condition

Required Paperwork

Upon returning to school, your child should have a completed seizure action plan to give to the school nurse, teacher, and principal. This document will outline specific steps to follow in case your child has a seizure at school.

If your child must take medication while at school or will carry emergency seizure medication, you and your doctor will need to complete additional school forms. These forms will provide instructions and include the name of the medication, the reason it’s used, the time it’s taken at school, and the dose. Laws vary by state, but you’ll typically need to give the medication to the school nurse (or trained unlicensed personnel) in the original prescription packaging with the child’s name on it.

504 Plan

Many parents have never heard of a 504 Plan unless they have a child who’s been diagnosed with a chronic medical condition. A 504 Plan is a binding legal document that’s a byproduct of the Individuals With Disabilities Education Act (IDEA). This document guarantees all children in the United States with disabilities (or with chronic health conditions) a free and appropriate public education.

Because epilepsy is a qualifying condition for a 504 Plan, a parent can request it from the school administration as long as they have the diagnosing paperwork from the doctor and appropriate documentation.

The goal of a 504 Plan is to legally decide what accommodations will be made for the child to help them be successful in the classroom. It also aims to ensure that all staff members are trained on the appropriate ways to keep the child safe at school, including seizure first aid, rescue medication administration, and reasons to call 911. As long as it’s necessary, this plan can follow the child through their educational career, including college.

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 program — also part of IDEA — would be appropriate.

Mental Health Aspects of Epilepsy

Although epilepsy isn’t a mental illness, the disruption it causes to daily life can negatively affect the child’s mental health. It can be difficult for a child to realize that 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 are 42 percent more likely to be a victim of bullying than their healthy peers. Having a chronic medical condition can also result in low self-esteem and isolation, leading to depression and anxiety. Enlisting a psychologist or support group to your medical team can be of great benefit to both you and your child.

Helping your child develop positive coping strategies and skills to deal with stress and difficult emotions 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 them about their feelings
• Avoiding language that can make them feel like a burden
• Encouraging interests, activities, and hobbies 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 they get enough sleep and eat a healthy diet
• Staying positive

Self-Care for Caregivers

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

Read about strategies to manage stress and invest in your own well-being.

You Are Not Alone

Do you have a child who has been diagnosed with epilepsy? What steps did you take to build your medical team and educate others about your child’s condition? You can find support at MyEpilepsyTeam, where more than 118,000 people with epilepsy gather to share advice and talk about their experiences living with this medical condition.

Share your experience in the comments below or on your Activities page. Your story may help others.