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Epilepsy is a neurological condition of the nervous system marked by repeated seizures. A seizure occurs when nerve cells fire off abnormal signals in the brain. According to the Epilepsy Foundation, epilepsy affects approximately 3.4 million people in the United States — 470,000 of which are children.
Neurologists are doctors who specialize in the medical treatment of brain and spine disorders. They will 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 concussion or injury, genetic syndromes, and more.
Because there are many types of epilepsy, which are categorized based on the part of the brain that is being affected and what happens during the seizure, epilepsy looks different for every child. Therefore, it is important to bring together a comprehensive medical team that can fully support your child from diagnosis to management of the disease long term.
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.
Although the causes of about 70 percent of seizures in children are unknown, the rest occur as a result of another medical issue. The most common of these medical issues include:
Research from the Epilepsy Foundation has discovered 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.
After a diagnosis of epilepsy, it is critical to assemble a medical care team that can help you navigate the road ahead, with the shared goal of keeping your child safe and healthy. 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:
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 your child’s health and family history.
A neurologist specializes in neurological disorders of the brain, and an epileptologist is a neurologist that specifically deals with epilepsy in children. Both of these doctors will be important members of your team that will diagnose what type of seizures your child has. They will also know some 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 is not one specific test to diagnose epilepsy, they will typically make a treatment plan based on the results of blood tests, electroencephalogram (also called an EEG) abnormalities, family history, and a full health assessment. An EEG is a test that involves placing electrodes onto the scalp to measure brain wave electrical activity and diagnose seizures.
If a child experiences severe epilepsy that does not 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.
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 diagnosed with epilepsy. Nurse practitioners have more training in a variety of medical conditions and are a valuable addition to the medical care team.
A neuropsychologist is a type of psychologist that specializes in brain disorders. They will 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.
Because it is 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.
A promising aspect of an epilepsy diagnosis is that it 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 what medications have been tried and which ones 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 is 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 are typically compliant with taking their medication each day as directed. However, 50 percent of people admit to sometimes forgetting to take a dose. Forgetting to take 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 is encouraging to note that some children outgrow certain types of seizures.
To avoid further injury, safety precautions should be a top priority for children who have a seizure disorder. All caretakers, 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 in the event they have a seizure when the parents are not nearby. Parents should work with the child’s neurologist to create a seizure action plan for adults to follow in your absence.
If a child diagnosed with epilepsy is in your care or presence and is having a seizure, it is important to follow these steps:
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 for the child and those around them. Depending on the age of the child, there are specific prevention and precautionary measures you should discuss with your child’s neurologist. These measures include whether it is safe for your child to:
Identifying sports and activities that are a danger to your child depends on their age, type of seizure, and treatment plan, as well as your conversation with their doctor. Just because one child with epilepsy is not allowed to do certain activities does not mean that another child will have the same restrictions.
When a child is entering or returning to school with an epilepsy diagnosis, navigating the school setting and communicating with teachers and staff can be frustrating and scary. However, giving the school a heads-up before their first day back, providing the appropriate staff members (principal, school nurse, teachers) with the necessary doctor paperwork, establishing an open line of communication, and educating all involved individuals can make the transition back to school smoother for everyone.
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 give the school team-specific action steps to follow in case your child has a seizure at school.
If your child must take medication while at school, or if they will carry emergency seizure medication, you and your doctor will need to complete additional school forms. These forms will include instructions on the name of the medication, the reason for the medication, the time to be taken while at school, and the dose to be taken. Laws vary by state, but you will typically need to provide the medication to the school nurse, or a trained unlicensed personnel, in the original prescription packaging with the child’s name on it.
Many parents have never heard of a 504 Plan unless they have a child that is diagnosed with a chronic medical condition. The 504 Plan is a binding legal document that is a byproduct of the Individuals With Disabilities Education Act. 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. Another one of its goals is 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 when to call 911. As long as it is 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 Plan would be appropriate. This Individualized Education Plan is part of the Individuals With Disabilities Education Act.
Although an epilepsy diagnosis is not a mental illness, the disruption it causes to daily life can negatively affect the child’s mental health. It can be a difficult realization for your child if they have different struggles and limitations than their friends. 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:
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 is 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.
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 107,000 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 MyEpilepsyTeam. Your story may help others.
Remi A. Kessler, M.D. received her medical degree from the Icahn School of Medicine at Mount Sinai in New York City. Learn more about her here.
Amy Isler, RN is a registered nurse with over six years of experience as a credentialed school nurse. Learn more about her here.
