Children and Epilepsy
When a child is diagnosed with epilepsy, parents sometimes react with a range of emotions including anger, fear, or grief. Parents may know very little about the condition and may feel confused and helpless. Learning about epilepsy can empower you and help you to make decisions regarding issues such as medical treatment, care, and safety.
Epilepsy Support Centre has resource material on epilepsy and a staff committed to answering questions and providing helpful information. The Centre can also link you to support groups or with other parents experiencing similar challenges.
Encourage and Support Your Child
Be straightforward about epilepsy with your child. A diagnosis of epilepsy may result in your child experiencing low self-esteem, anxiety, anger, or a feeling of powerlessness. In some cases, a child may even develop a fear of dying. Encouraging openness and discussing these reactions with your child may help to build your child's self-esteem. Parents may also help to alleviate some of the child's concerns by assuring that the child knows the seizures are not anyone's fault and it is extremely rare for a child to die of epilepsy.
There is an increased risk of depression in people with epilepsy. Depression may be a side effect of medication, or it may occur just before, just after, or between seizures. Depression may also be a reaction to the insensitivity of others or of living with the constant fear of having a seizure.
Even if their seizures are effectively controlled by medication, children may be concerned about having a seizure in public. Children are often afraid of being different. They may be reluctant to take medication while with others.
Explaining to your child that other children may also have conditions (e.g. food allergies or asthma) that could require medication and/or lifestyle changes may help your child to understand.
Talking with your child about his or her feelings is important. If depression is ongoing or is hindering your child's enjoyment of life, discuss this with your child's doctor.
Being too overprotective can hinder your child's emotional development. If a child learns to be fearful or is continually being restricted, he or she may develop a dependency that will continue into adulthood. By encouraging a child to view seizures as a temporary inconvenience and, by encouraging participation in activities, you may help your child to develop the confidence to become an independent adult.
Sharing with Others
Depending on the type and frequency of your child's seizures, it may be important to inform others about your child's condition.
We advise that you inform caregivers, teachers, or neighbors who are responsible for your child as it is essential that they know how to help should your child have a seizure.
Parents should also tell people who are often with your child such as relatives, good friends, and their parents.
Older children and adolescents should be allowed to be involved in decisions regarding who should be told and how.
As with any child, try not to use labels when talking about your child (e.g. epileptic). Your child has epilepsy but the condition is only one facet of your child's life.
Develop a Positive Family Environment
Discuss epilepsy with the members of your family. Siblings may have fears such as whether or not they will get epilepsy or they may feel jealous or resentful because of the extra time or attention given to the child with epilepsy. These concerns should be addressed and discussed.
Treating the child with epilepsy like other members of the family with respect to responsibilities may be helpful in creating a positive family environment. Siblings should not be expected to be constant caregivers of a child with epilepsy but they should know what to do should a seizure occur.
In some families, older relatives misunderstand the condition partly due to historical misconceptions. Sharing information on the condition with family members will help them to better understand epilepsy.
Reprinted in part from Edmonton Epilepsy Association.