Childhood Epilepsy: Talking About Epilepsy
The Importance of Talking About Epilepsy
A childhood epilepsy diagnosis affects the entire family. As parents, you must obtain specialized knowledge and caregiver skills. You must change your priorities—as well as your schedule—to care for your child. Because siblings will also be affected by a child's diagnosis, you must remain attentive to their needs in order to help everybody adjust. Equally important is learning to care for yourself and your own needs in this process.
But the effects of a diagnosis are not limited to a child's immediate family. A child with epilepsy should be supported in leading as normal a life as possible, given his or her particular situation. This view should be shared with extended family members, teachers, coaches, and friends. It is important for you to recognize how others are affected by the diagnosis and communicate with them accordingly.
People who engage with your child will do so on different levels and in different environments. They may also have different concerns. Teachers may be concerned with how having a student with epilepsy will affect the classroom environment. Coaches may be more concerned about the safety of the child participating in a particular activity or sport. Other children may wonder whether a child with epilepsy can be a good friend. Everybody is likely to be anxious about what to do in the event of a seizure.
See the Activities, Safety, and First Aid page for more information about responding to seizures, and visit Epilepsy Basics for an introduction and answers to common questions.
Talking with Your Child
No one will be more affected by an epilepsy diagnosis than your child. With so many unknowns—What happens if I have a seizure at school? How long before my medication starts to work? Will having seizures or taking medication change who I am or affect my abilities?—he or she might, understandably, be very frightened at first. Your commitment to helping your child live as normally as his or her condition permits will positively influence how he or she responds to the diagnosis and treatment.
In first speaking with your child about a diagnosis, it is important to be direct. It is likely that your child will suspect something is going on in his or her brain. Tell your child that he or she has a condition known as epilepsy. Explain that many children have seizures, and it is not something to feel afraid or ashamed of. Normalizing the condition and your child's experience with it can help lessen the anxiety that often arises when children feel different from their peers and have a disorder that they are not able to fully control.
For a child in early elementary school, keep things simple and concrete. Forego elaborate explanations; instead, use visual supports or a picture of the brain that illustrates what a seizure is. (Images of the brain can be found in The Brain page.) Keep in mind that younger children are very egocentric. They may feel as though they have somehow brought the condition on themselves, when in fact they have no influence or control over it. Encourage your child to express his or her feelings or ideas about the seizures, and help your child to understand that his or her thoughts or actions do not cause these experiences.
Be positive and proactive as you help your child accept epilepsy for what it is. Seek to raise self-esteem by praising successes, and by encouraging him or her to pursue favorite activities, sports, or hobbies and to be active in his or her peer group. Avoid discussing with your child some of the negative aspects of the condition or its effect on the family, such as any financial burden or personal grief you may be experiencing. Helping your child view epilepsy as a manageable, even ordinary condition will ultimately help him or her enjoy life.
When discussing medication or other possible treatments with your child, explain why it is important to comply, but also watch for and discuss any side effects he or she might be experiencing, and report them to your child's practitioner. As children get older, the desire to fit in with peers may cause them to skip their medication or "cheat" on a dietary treatment. You must be diligent in reinforcing the message that staying on a treatment plan will lead to good results, and combine this with support. Sometimes, arranging for the child to see a social worker or other mental health professional, or to meet other children with the same kinds of issues, may help assure the child that he or she is not alone in this process.
Talking with Siblings
Brothers and sisters of children with epilepsy often report feelings of isolation, helplessness, and stress—all of which might contribute to jealousy and resentfulness toward the sibling with epilepsy. Therefore, you should regularly set aside some time to talk with your children about epilepsy and how it affects them. It is also important for them to develop an understanding of epilepsy and how it affects their sibling. Siblings can be a strong source of support to a child with epilepsy, and for a family to remain healthy it is essential that all members willingly accept some of the responsibilities.
Encourage siblings to ask questions about epilepsy, and listen without being critical. If siblings question why their brother or sister does not seem to understand things or why he or she cannot act more like a regular kid, understand that these are normal questions. In discussing the intellectual and behavioral capacities of a child with epilepsy, it helps to recognize the siblings' own age and level of comprehension.
Here are some guidelines for understanding how children of different ages may respond to a sibling's epilepsy. Prior to age five, children cannot fully articulate their feelings. They might notice subtle differences between themselves and their brother or sister who has epilepsy. By the time they reach elementary school age, children become more aware of differences. Although they will understand concrete explanations about epilepsy, they may still have unwarranted concerns, such as whether the disorder is contagious or not. They may also become resentful toward their sibling and either noncompliant or overly helpful—in order to obtain their parents' attention. Adolescents have the ability to understand more elaborate explanations about their sibling's medical condition.
It may be helpful to provide your children with the opportunity to meet other siblings of children with epilepsy. A social worker or other mental health or medical provider can facilitate this. By devoting time to your other children for leisure activities and open conversation, and by thanking your other children for their help and patience, you also set the foundation for a better future for your child with epilepsy and for your entire family.
For more information on talking with siblings about epilepsy, see the Family Life section.
Talking with Relatives, Caregivers, and Coaches
Extended family can be a wonderful source of strength when a child has epilepsy. Babysitters, athletic coaches, or other adults, such as afterschool providers, may also play a significant role in the child's life. But these people may be fearful of or hold misconceptions about epilepsy. So helping them understand the nature of your child's epilepsy and teaching them about seizure safety may be necessary to help them feel comfortable in their interactions with your child.
Depending on their level of involvement with your child and the nature of your child's treatment, you may choose to thoroughly educate these people about the treatment plan. Or you may just want to inform them of any known seizure triggers and explain what a seizure looks like so that they will know what to do if one occurs in their presence.
It is important to convey that all seizures are not the same. Let others know that seizures can run the gamut, from a convulsive seizure, which people generally associate with epilepsy, to a seizure that might be perceived as nothing more than a daydreaming episode, if noticed at all. First, explain that if a seizure occurs, you want them to remain in control and avoid panicking. Seizures are nothing to be afraid of. Then, provide enough information about what to do (and what not to do) during the seizure and in its aftermath. For example, describe the type of seizure that your child has so that its symptoms will be recognized. Tell them whether they should send your child home or let him or her rest for a few minutes once a seizure ends before resuming normal activity. In the case of prolonged seizures, tell them they will need to call emergency services.
See the Activities, Safety, and First Aid section to print a downloadable PDF on Seizure First Aid (PDF).
To learn more about seizure types and where in the brain they arise, see the Seizure Types and Syndromes section.
Your Child at School
Informed and confident teachers and coaches, as well as a supportive school nurse and school administration, can make a huge difference in how your child perceives the school environment. When talking with your child's teacher—preferably prior to or early in each school year—be sure to discuss how epilepsy affects your child specifically, what types of seizures he or she has, including triggers, and how you would like the teacher to handle seizures when they occur. See Parents' View of Henry's Seizure Condition and Prevention Strategies (PDF) for a downloadable PDF demonstrating how one set of parents communicates with teachers and caregivers regarding their child's condition and needs.
Because an estimated 2 in 100 people have seizures, many teachers will have already encountered students with epilepsy. If your child's teacher is unfamiliar with seizures and would like information about them, either provide it or direct him or her to specific resources, such as this site. The teacher will learn, among other things, that students with seizures belong in school and are in no way a threat to other children. Given information, reassurance, and opportunities to ask questions, classmates can also learn to accept your child's condition for what it is and may even reach out to provide support.
With respect to academic achievement, it is important to convey to teachers that there may be valid reasons why your child might lag behind peers. Approximately half of all children with epilepsy will have some form of learning difficulty—the most common relate to attention, language, and memory. Contributing factors might include side effects from medication, missed classes due to medical visits, and anxiety over seizures. To address this, you might team up with the teacher to develop some learning objectives specifically designed to meet your child's needs. Be confident in your approach and insist on appropriate services, if called for, including an individualized education plan (or IEP). Federal and state laws mandate that educational opportunities should be open to all children, including children with seizures.
For more information on how epilepsy affects learning and for a downloadable PDF on Strategies for Educators (PDF), see the Learning section.
As you advocate for your child, be proactive and schedule your own conferences, instead of waiting for teacher-scheduled meetings. Describe your vision for your child's education and ascertain whether this can be adequately supported at the school.
Talking with Medical Professionals
Parents of children with epilepsy are actively involved in their medical treatment program. Not only must parents learn all about the medication given to their child—including the name, dosage, frequency, and side effects—but they must also be able to observe how well the medication is working in controlling seizures. The same vigilance applies to observing results of a dietary treatment or surgical intervention.
As parents, you must often speak on behalf of your child, especially for younger children. You must communicate to your practitioner, for instance, whether a medication dosed three or four times a day will be feasible given your child's daily routine, as well as how a given medication may be affecting him or her.
Because seizures differ from person to person, you should also discuss ways to take care of your child before, during, and after a seizure. For example, make sure you understand whether your child may need to rest after a seizure. This is critical information to convey to others in the child's circle of family, friends, teachers, and caregivers.
At one time, controlling seizures was the sole aim of the care provided to children with epilepsy. However, because epilepsy can affect learning, mental health, and participation in many activities, the reach of care has expanded to encompass the whole child. If you have concerns about the ways in which epilepsy may be impacting your child's learning, mental health, and behavior, talk to your doctor and ask for a referral to other medical professionals and specialists who may suggest a neuropsychological evaluation or other diagnostic tests.
To learn more about epilepsy's impact on mental health and behavior, see the Mental Health and Behavior section.
Talking with Each Other
Parents of a child with epilepsy have significant responsibilities. It takes financial resources to obtain evaluations and support therapies and to provide appropriate care for the child. Further, parents must maintain balance in the rest of family life and nurture a career and other relationships. This physical and emotional rollercoaster might lead to negative feelings that include worry, denial, anger, embarrassment, fear, guilt, and resentment, putting your spousal relationship under enormous pressure. As important as it is to communicate with others in the child's life, it is also important to communicate with each other.
Some strategies that might help strengthen your commitment to each other include maintaining open lines of communication, in which feelings and thoughts are regularly expressed, not suppressed; sharing what each of you learns about the disability; and agreeing on the type of lifestyle you want for your child and your family. You may want to join a support group or talk about your situation with a family therapist. You may take comfort in knowing that there are others in a similar situation, and you may also learn helpful strategies to manage daily life. That said, epilepsy need not be the focus of your life. Make sure to take time to enjoy everyday life activities.
An educational psychologist is a licensed psychologist who evaluates children with learning difficulties and advises educators and parents on the child's development and educational progress.
A neuropsychologist is a licensed psychologist with expertise in the evaluation of cognitive and behavioral functions.
A psychiatrist is a medical doctor who specializes in the diagnosis and treatment of mental and behavioral disorders. A psychiatrist who treats people with epilepsy is familiar with the cognitive and behavioral issues that are common to the disorder and knows what treatment options are most effective for these issues, including medication options.
A psychologist is a professional who has earned a doctoral degree in psychology and has undergone clinical training. He or she is a specialist in the diagnosis and treatment of mental and emotional problems, and may be involved in evaluation, testing, counseling, and/or psychotherapy.
A social worker is a licensed professional who provides support to families and children with medical or psychological issues
Family Advisory Council
The Family Advisory Council at MGfC is dedicated to developing a positive partnership between parents, children and staff.
Once we start caring, we never stop.
At MassGeneral Hospital for Children, we are dedicated to providing outstanding, personalized and developmentally-appropriate care from infancy through adolescence.