How a child copes with epilepsy depends on many factors. Children with poorly controlled seizures are more likely than children with well-controlled epilepsy to have increased fatigue and lower energy, as well as difficulties with attention, behaviour, self-esteem, social skills and peer relationships.
Other co-existing disorders such as cerebral palsy, autism or tuberous sclerosis complex can add to the challenging effects of epilepsy. Even children whose epilepsy is reasonably well controlled can still have emotional, social or learning difficulties. However, there are many things you as a parent can do to help your child cope more effectively with their epilepsy.
Your child’s response to epilepsy
Your child’s response to epilepsy depends on their age and stage of development.
School age children may be frustrated because they may not be able to participate in the same physical activities as their friends. They may also be frustrated by how closely they are monitored by parents and others.
During adolescence, youth typically spend more time with peers and become increasingly independent. Epilepsy may increase social isolation because of self-esteem issues related to seizures; having to take daily medications; rejection by peers (e.g., bullying or teasing); or because of seizure-related safety concerns that result in limits on the adolescent’s independence or activities.
Your child’s desire to be liked and to fit in with their peers may be compromised if they are having seizures in front of their friends or classmates. They may feel resentful or anxious about their own safety and the limitations, such as decreased independence, that are imposed on them because of their seizures.
Talking to your child about epilepsy
One of the best ways to help your child cope is to teach them about epilepsy and help them understand their type of seizures in particular.
Explain what epilepsy and seizures are to your child in an age-appropriate way and be available to answer their questions and concerns.
- Explain to your child what you know about epilepsy and their type of seizure. When children do not have enough information, they may fill in the blanks with incorrect facts that can cause worry or concern.
- Pay attention to the questions that your child asks. Use them to guide the amount of information that you share with them about epilepsy.
- Tell your child about epilepsy and give them information about any upcoming medical tests or treatments. Help them to understand if and how any of these interventions may cause changes to their life.
- As your child receives care and treatment for their epilepsy, try to create as many opportunities for choice as possible (e.g., remembering to take their own medication with help from an alarm on a smartphone or watch). This can help your child feel that they have control over the situation.
- Create opportunities to talk with your child about the seizures and any new changes. Creating an environment of open communication will provide your child with the opportunity to express their emotions about their epilepsy.
- Involve your child in the discussions with the epilepsy care team, especially as they get older. Encourage your child to talk to any of the epilepsy care team members, alone or with you, and to ask questions.
- Sit down with your child before an appointment and write down any questions they may have. For children who feel shy asking questions directly to the health-care team during an appointment, parents can refer to the list and ask questions on the child’s behalf. This can be a nice introduction to children about how to become more involved in their epilepsy treatment.
As your child matures, the amount and type of information they require about their epilepsy will change. Check back with them often, encourage them to ask questions and create an environment of open communication at home.
Setting the tone for your child
Children with epilepsy tend to experience more anxiety, depression, social difficulties and lower academic achievement than children with other chronic conditions. These difficulties may not be fully explained by the seizure frequency or intensity. Personal attitude and feelings of self-worth seem to also affect how well a child does. Children’s feelings about themselves and their seizures often reflect the reaction that others demonstrate, including their family, friends and school staff.
Your attitude and your reactions towards your child’s epilepsy will have an impact on how your child views their epilepsy. A positive attitude and a matter-of-fact approach that emphasizes seizures as temporary disruptions to the normal routine of life will help your child develop a healthy attitude.
- Try to maintain your usual family routines as much as possible. This will demonstrate to your child that epilepsy is just one part of their and your life.
- Although your child’s regular activities may be affected by the seizures or treatment, encourage them to participate in activities whenever possible.
- Encouraging competence and independence and having expectations of your child will help them feel normal.
- Because children with epilepsy may experience a “loss of control” over their bodies when they have seizures, it is important to provide other opportunities for your child that foster a sense of being in control.
- If your child is young, let them express themselves through play. If they’re old enough, talk to them about how epilepsy is affecting their life and teach them strategies that will help them cope with the effects of epilepsy.
- Help them develop special interests in areas where they can experience success. This will provide them with opportunities to succeed and feel proud, which can improve their self-image.
- Ensure your child with epilepsy has an active role in your family's activities and is responsible for specific chores or tasks, just like their siblings.
Balancing safety and independence
At first, some parents view their child as being sick or fragile. Understanding epilepsy and finding positive ways to cope with the seizures can take some time. As you develop a greater understanding of epilepsy and your child’s seizures, and gain more experience in managing the seizures, epilepsy will hopefully no longer define your child but instead be viewed as one aspect of your child’s life.
One of the most difficult challenges for the child and their family is uncertainty about when the seizures are going to happen. Some children report that once their seizures are well controlled, they don’t have to worry anymore. The unpredictability of seizures influences parenting style. Since parents do not know when a seizure will occur, they try to make their child’s environment as safe as possible.
Another challenge for parents is the balance between promoting your child’s independence and ensuring your child’s safety. Many parents wonder if they should allow their child to ride a bike, swim, cross the street by themselves, or play certain sports. The answer to these questions may be different for every child and can depend in part on the type and frequency of seizures your child is experiencing. It is useful to discuss these issues with your child’s epilepsy care team. The goal is to help your child be involved as much as possible in typical activities.
Ensuring your child’s safety sometimes involves restrictions on certain activities. However, it is important to allow your child the freedom to participate and develop similar to their peers. Encouraging typical play and peer interaction can strengthen your child’s sense of competence and self-image. It can also provide them with the opportunity to learn the skills to live an independent and productive life. Epilepsy, particularly when seizures are under control, should not interfere with your child or teen engaging in activities with their peers.
Helping your child adapt to change
Talk with your child about how they see epilepsy and seizures changing their life. If everything feels different to your child, look carefully for exceptions and talk with them about things that have stayed the same. Talk about and find ways for your child to continue with activities they were interested in before developing seizures and help them to explore and develop new areas of interest where they can feel proud.
Self-esteem is how a person sees, feels and values themselves and the extent to which they feel positive about themselves. How a person feels and thinks about themselves influences how they act and behave. Self-esteem is influenced by internal thoughts that we have about ourselves, which often have been influenced by how others view us.
Children with epilepsy may be at risk for lower self-esteem because there is a focus on what they cannot do because of seizures. Talk with your child about these feelings and change the focus to what your child is able to do.
Building self-esteem can have beneficial effects in all areas of life, including relationships with peers and academic achievement.
- Encourage your child to express their feelings. This will help them feel understood and supported.
- Encourage your younger child to play, which may promote conversation about their epilepsy and life. This might include drawing or role-playing with puppets or dolls.
Helping your child interact with other people
Help your child to find the words to respond to other children when they ask about seizures and epilepsy. If your child has a solid and age appropriate understanding about their epilepsy, they can more easily respond to questions from others who do not understand. Your child’s epilepsy care team or a local epilepsy organization can help provide educational resources.
Meet with your child’s teacher. Share the information that you feel is important for them to know about epilepsy and the ways in which it can impact your child physically, academically, socially and emotionally. Children with epilepsy are more often teased and bullied by their peers. Strategies to help your child respond to teasing and bullying include:
- informing an adult, such as a parent, teacher, or principal, to address the problem immediately
- ignoring the person
- refusing to express distress
- standing up and saying, "I refuse to be treated like this," which may force the confronter to respond
- defusing the situation with humour
- walking away
Speak to your child’s teacher or principal and develop a plan that sees the school’s policy put into action.
Identify opportunities to provide education to your child’s peers, including those who bully, about epilepsy.
For children who are cared for at children’s hospitals, there are health-care professionals who can help you identify resources and supports to assist in your child’s adjustment. There may also be support groups, homework clubs, social groups, or camps specifically for children who experience seizures. Providing your child with an opportunity to meet another child with epilepsy may offer support and combat feelings of isolation. Resources focused on diversity and respect for differences may also help in your child’s adjustment process.
Helping your child deal with tests and other procedures
Some children with epilepsy need blood tests to monitor their medication levels. If your child has a fear of needles and is worried about the pain of an injection, there are different coping methods they can use to help reduce pain and fear, including topical anaesthetic and distraction techniques. Ask your child what they need to help them cope with needles or other procedures.
Giving your child responsibility for their own care
Both you and your child will need time to learn and adapt to the changes that are required to live successfully with epilepsy. For example, taking medications and adapting to limits placed on independence may require new responsibilities for the child and for their parents.
Encourage your child to take on responsibilities that are appropriate to their age, ability, and understanding of seizures to help them achieve some control over their epilepsy. It is often useful to give your child new responsibilities, in small increments, over time. It may be difficult as a parent to find the balance between protecting your child by taking on the majority of responsibility for their epilepsy, and letting your child become responsible for their own care. As your child gets older, they will need to take on more responsibility for their own care as they prepare to transition to an adult health-care setting. This could include meeting with their health-care team on their own or asking their own questions.
Be realistic about what your child can manage in relation to their own health care. Children vary in their ability to assume responsibility for their epilepsy management. The epilepsy care team can guide you and your child in successful seizure management.
Everyday life and behaviour
Try to follow the same approaches to parenting your child with epilepsy that you use for your other children. Treat your child in a similar way before and after the diagnosis. This approach will help your child to understand that they are the same person as before, with the addition of seizures.
Reward good behaviour when you see it. A reward could be special time set aside with parents.
Develop a strategy to deal with inappropriate behaviour. Find alternate ways for your child to express their negative feelings or behaviours (for example, say, "When you get angry, I would like you to..."). React to inappropriate behaviour with consequences that are suitable for your child’s age or development. The response should be prompt, consistent, and clear. In some situations, ignoring the behaviour may be the best strategy. Too much attention can cause negative behaviours to increase.
Keep in mind that your child’s behaviour may be influenced by epilepsy, medications or frustration with the situation. It can often be difficult to sort this out, but strategies can still be put into place to help your child regulate emotion.
Creating a safe and supportive environment
Make your home safe for your child so they can function as much as possible inside without concerns about getting hurt.
For details and suggestions, speak to your child’s epilepsy care team or see the page on "Ensuring a Safe Home."
Encourage your child to speak to the epilepsy care team and establish a relationship so that they feel comfortable talking to them about their concerns.
Find support groups for children with similar conditions through the hospital or your local epilepsy association. There are also camps available for children with epilepsy or children with a chronic illness.
Seek support for your child from peers. Help your child explain epilepsy to their peers in a way that they can understand and are not afraid. If your child must be away from school or home for an extended period, help them to keep in touch with friends, classmates, and siblings through phone calls, video chats, social media and visits.
Advocate for your child at their school and other places outside the home. Ideally, with your child’s involvement, explain to family, friends, teachers and others about their epilepsy (including learning, language and behaviour concerns). At school, set clear expectations, help school personnel understand how to handle a seizure, and create a system so your child can feel part of the school and function to the best of their ability.
Helping your teenager cope with epilepsy
A teenager coping with epilepsy will have a different set of issues to deal with than a younger child. It is important for teenagers to belong and fit in with their peers. They want to feel “normal”, so being "different" in any way can be very difficult. This may be a time when teenagers try very hard to hide their epilepsy and, for example, ignore the importance of taking anti-epileptic medication on time, getting proper rest and refusing drugs and alcohol. Many of the above strategies may still be useful in helping your teen cope, but it’s important to keep their adolescent-related issues in mind as well.
Some additional suggestions to help your teenager are:
- Empathize: give them the opportunity to express their concerns and frustrations.
- Emphasize their experience, character and strength in dealing with negative experiences, illnesses or differences.
- Give them some extra time and support.
- Involve the epilepsy care team and support groups as needed in the process.
