Helping your child cope with epilepsyHHelping your child cope with epilepsyHelping your child cope with epilepsyEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemConditions and diseasesCaregivers Adult (19+) EducatorsNA2010-02-04T05:00:00ZIrene Elliott, RN, MHSc, ACNP;Janice Mulligan, MSW, RSW11.000000000000046.00000000000003071.00000000000Flat ContentHealth A-Z<p>How a child copes with epilepsy depends on many factors. Helping a child live with epilepsy includes family support and creating a positive atmosphere.</p><p>How a child copes with epilepsy depends on many factors. It is well known that 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.</p> <p>Other co-existing disorders such as cerebral palsy, autism or tuberous sclerosis can compound the disabling effects of epilepsy. Even children whose epilepsy is reasonably well controlled can still have emotional, social or learning difficulties. This being said, there are many things you as a parent can do to help your child cope more effectively with their epilepsy.</p><h2>Key points</h2> <ul><li>Epilepsy education is an important factor in helping your child cope with their epilepsy.</li> <li>Finding a balance between safety and independence, maintaining a positive attitude, supporting your child as they adapt, and allowing them to take some responsibility for their own care are other factors that will help a child cope.</li></ul>
Aider votre enfant à composer avec l'épilepsieAAider votre enfant à composer avec l'épilepsieHelping your child cope with epilepsyFrenchNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemConditions and diseasesCaregivers Adult (19+) EducatorsNA2010-02-04T05:00:00ZIrene Elliott, RN, MHSc, ACNP;Janice Mulligan, MSW, RSW11.000000000000046.00000000000000Flat ContentHealth A-Z<p>La façon avec laquelle un enfant compose avec l’épilepsie dépend de nombreux facteurs. Pour l’aider à vivre avec sa maladie, on doit lui offrir un soutien familial et créer une atmosphère positive.</p><p>La façon avec laquelle un enfant compose avec l’épilepsie dépend de nombreux facteurs. Il est bien connu que les enfants dont les crises sont difficilement contrôlables, à la différence de ceux dont elles sont bien contrôlées, sont plus susceptibles d’avoir une fatigue accrue et moins d’énergie. Ils peuvent aussi avoir plus de difficultés sur le plan de l’attention, du comportement, de l’estime de soi, des aptitudes sociales et des relations avec les pairs.</p> <p>Des troubles connexes, comme la paralysie cérébrale, l’autisme ou la sclérose tubéreuse, peuvent s’ajouter aux effets invalidants de l’épilepsie. Même les enfants dont l’épilepsie est raisonnablement contrôlée peuvent avoir des difficultés sur le plan affectif, social ou de l’apprentissage. Cela dit, il y a beaucoup de choses que vous pouvez faire, en tant que parent, pour aider votre enfant à mieux composer avec l’épilepsie.</p><ul><li>L’un des meilleurs moyens d’aider votre enfant à s’adapter à sa maladie est de l’aider à comprendre ce qu’est l’épilepsie.</li> <li>Trouver un équilibre entre la sécurité et l’autonomie, maintenir une attitude positive, soutenir votre enfant à mesure qu’il progresse et lui permettre d’assumer une part de responsabilité dans ses propres soins sont d’autres facteurs qui aideront l’enfant à s’adapter à sa maladie.</li></ul>

 

 

Helping your child cope with epilepsy2109.00000000000Helping your child cope with epilepsyHelping your child cope with epilepsyHEnglishNeurologyChild (0-12 years);Teen (13-18 years)BrainNervous systemConditions and diseasesCaregivers Adult (19+) EducatorsNA2010-02-04T05:00:00ZIrene Elliott, RN, MHSc, ACNP;Janice Mulligan, MSW, RSW11.000000000000046.00000000000003071.00000000000Flat ContentHealth A-Z<p>How a child copes with epilepsy depends on many factors. Helping a child live with epilepsy includes family support and creating a positive atmosphere.</p><p>How a child copes with epilepsy depends on many factors. It is well known that 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.</p> <p>Other co-existing disorders such as cerebral palsy, autism or tuberous sclerosis can compound the disabling effects of epilepsy. Even children whose epilepsy is reasonably well controlled can still have emotional, social or learning difficulties. This being said, there are many things you as a parent can do to help your child cope more effectively with their epilepsy.</p><h2>Key points</h2> <ul><li>Epilepsy education is an important factor in helping your child cope with their epilepsy.</li> <li>Finding a balance between safety and independence, maintaining a positive attitude, supporting your child as they adapt, and allowing them to take some responsibility for their own care are other factors that will help a child cope.</li></ul><h2>Informing your child about epilepsy</h2><p>One of the best ways to help your child cope is to help them understand about epilepsy in general and their type of seizures in particular. Studies have found that compared to children with other chronic conditions such as diabetes, children with epilepsy seem to have the least understanding about their situation. </p><p>It is important to explain epilepsy and seizures to your child in an age-appropriate way and be available to answer their questions and concerns. </p><ul><li>Explain to your child what you know about their epilepsy. When children do not have enough information, they may “fill in the blanks” with incorrect facts that can cause a great deal of worry or concern. </li><li>Pay attention to the questions that your child asks. Use them to guide the amount of information that you share with them about epilepsy.</li><li>Tell your child about their epilepsy and give them information about any upcoming medical tests or treatment. Help them to understand if and how any of these interventions may cause changes to their life. </li><li>As your child receives care and treatment for their epilepsy, try to create as many opportunities for choice as possible (for example, remembering to take their own medication with help from an alarm watch), which in turn can lead to a feeling of greater control over the situation. </li><li>Create opportunities throughout the day and week to talk with your child about the seizures and any new changes. Creating an environment of open communication about epilepsy will provide your child with the opportunity to express their emotions about their epilepsy. </li><li>Involve your child in the discussions with the epilepsy care team, especially as they get older. Encourage your child talk to any of the epilepsy care team members, alone or with you, and to ask any questions they may have. It is often a useful exercise to sit down with your child before an appointment and jot down any questions they may have. For children who may feel shy in asking their questions directly to medical staff during an appointment, parents can consult the list and ask questions on the child’s behalf. This can be a nice introduction for children about how to start to become more involved in their epilepsy treatment. </li></ul><p>As your child matures, the amount and type of information they require about their epilepsy will change. So check back with them often, encourage them to ask questions, and create an environment in your home where open discussion is the norm. </p><h2>Setting the “tone” for your child</h2><p>Children with epilepsy tend to experience more anxiety, depression, and social difficulties and lower academic achievement than children with other chronic conditions. These difficulties may not necessarily be explained by the seizure frequency or intensity. Personal attitude and feelings of self-worth seem to affect how well a child does. Children’s feelings about themselves and their seizures often reflect the reaction that others (such as family, friends, and school personnel) demonstrate. </p><p>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.</p><ul><li>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. </li><li>Children lead active and busy lives. Although your child’s activities may be affected by the seizures or treatment, encourage them to participate in activities whenever possible. </li><li>Cultivating competence and independence and having expectations of your child will promote their sense of normalcy.</li><li>Because children with epilepsy may experience a “loss of control” over their bodies with their seizures, it becomes important to provide other opportunities for your child that foster a sense of being in control. </li><li>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 the epilepsy on their life. </li><li>Help them develop special interests in areas where they can experience success. This will provide them with opportunities to succeed and feel proud. </li><li>As with every child in your family, ensure your child with epilepsy has an active role in your family's activities.</li></ul><h2>Balancing safety and independence</h2><p>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 as you 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. </p><p>Uncertainty about when the seizures are going to happen is perhaps one of the most difficult challenges for the child and their family. Children report that once their seizures are well controlled, they "don’t have to worry any more." 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. </p><p>The balance between promoting your child’s independence and ensuring your child’s safety is one of the greatest challenges for parents. 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 the child is experiencing. It is useful to discuss these issues with your child’s doctor or clinic nurse. The goal is to help your child be involved as much as possible in typical activities. </p><p>Ensuring safety sometimes involves restrictions on certain activities. This being said, 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 and provide them with the opportunity to begin 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. </p><h2>Helping your child adapt to the ways in which epilepsy changes their life</h2><p>Talk with your child about the ways in which they view epilepsy and seizures changing their life. If "everything" feels different to your child, look carefully for exceptions to the rule and talk with them about the ways in which life has remained the same. Talk about and find ways for your child to continue with activities they were interested in prior to developing seizures. Also, help them to explore and develop new areas of interest where they can feel proud. Feeling proud and successful in even one area can help promote a healthy self-image. </p><p>Self-esteem is how a person sees themselves, feels about themselves, and values themselves. It is the extent to which a person feels positive about themselves. Self-esteem is important because 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 those around us view us. </p><p>Self-esteem can be at risk in children with epilepsy because they may receive many messages focused on what they cannot do because of their seizures. Talking with your child about these feelings and changing the "focus" to what your child is able to do is a positive step toward combating a negative self-image. Building self-esteem can have beneficial effects in all areas of life, including relationships with peers and academic achievement. </p><ul><li>Encourage your child to express their feelings. This will help them feel understood and supported.</li><li>Encourage your (young) child to play, which may promote conversation about their epilepsy and life. This might include drawing or role-playing with puppets or dolls. </li></ul><h3>Helping your child interact with other people</h3><p>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 understanding about their epilepsy, they can more easily respond to questions from others who do not understand. Access "local" epilepsy chapters and use written information to help educate others. </p><p>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. Make yourself aware of any signs of bullying or teasing as this can often be more of a problem for children who are viewed as "different." </p><p>For children who are cared for at paediatric hospitals, there are health 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 ("I’m not alone"). Reading material focused on diversity and respect for differences may also help in your child’s adjustment process. </p><h2>Helping your child deal with tests and other investigations</h2><p>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, it is often helpful to place a special patch (local anaesthetic used to numb the skin) on the site where blood will be drawn. These patches are typically placed on the skin half an hour to an hour before blood is drawn. Ask your doctor or clinic nurse about this patch. </p><p>If your child tends to become anxious during medical procedures, it may be helpful to use special breathing or relaxation techniques that you have already practiced at home. Distraction, for example through humour, talking, singing, or reading, may also help your child make it through uncomfortable tests and procedures. Sometimes just acknowledging the worry and uncomfortable feelings and holding your child or remaining as close as possible can help. </p><p>Make your child the expert. Children love to talk to others about what the doctors did and how they dealt with procedures.</p><h2>Giving your child responsibility for their own care</h2><p>Both you and your child will experience a learning curve in relation 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. </p><p>Encouraging your child to take on responsibilities that are appropriate to their age, ability, and understanding of seizures will help them to achieve some control over their epilepsy. It is often useful to give your child new responsibilities, in small increments, over time. It can sometimes be difficult as a parent to find the balance between protecting your child by assuming the majority of responsibility for their epilepsy, and letting your child become responsible for their own care. </p><p>Remain 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. </p><h2>Everyday life and behaviour</h2><p>Try to follow the same approaches to parenting your child with epilepsy that you use for your other children. Also, try to 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. </p><p>Maintain a routine as much as possible even though seizures are unpredictable. Routines are important, especially when seizures have the ability to throw your child and your family off track. </p><p>As with the other children in the family, encourage your child with epilepsy to take responsibility for age-appropriate household chores, getting ready for school, preparing for bed, and so on. </p><p>Reward good behaviour when you see it. A reward could be special time set aside with parents.</p><p>Develop a strategy to deal with inappropriate behaviour. For example, find alternate ways for your child to express their negative feelings or behaviours (for instance, 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. </p><p>Keep in mind that your child’s behaviour may be influenced by epilepsy, medications, or frustration with the entire situation.</p><h2>Making the environment supportive</h2><p>Make your home safe for your child so they can function as much as possible inside without fear of getting hurt.</p><p>For details and suggestions, please see the page on "<a href="/Article?contentid=2105&language=English">Ensuring a Safe Home." </a></p><p>Encourage your child to speak to the epilepsy care team and establish a rapport so that they feel comfortable talking to them about their concerns.</p><p>Use other resources available to your child. For children and their families who are cared for at a paediatric hospital, there are health professionals who can help your child adjust. These include social workers, child life specialists, nurse specialists, and neurologists who specialize in epilepsy. There may also be support groups for children with epilepsy or chronic illness in general. Your "local" epilepsy association may also be able to put you in touch with support groups or resources. </p><p>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. </p><p>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 for an extended period of time, help them to keep in touch with friends, classmates, and siblings through letters, e-mails, cards, videos, and visits. You may be able to set up a web site for your child that friends can check. </p><p>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. </p><h3>How can you help your child deal with teasing or bullying?</h3><p>Children with epilepsy, like children with other special needs, are more often teased and bullied by their peers. Teasing and bullying can take many forms, including physical or verbal harassment. This can occur when epilepsy is misunderstood by others. Strategies to help your child respond to teasing and bullying include: </p><ul><li>informing an adult, such as a parent, teacher, or principal, to address the problem immediately</li><li>ignoring the person</li><li>refusing to express distress</li><li>standing up and saying "I refuse to be treated like this," which may force the confronter to respond</li><li>defusing the situation with humour</li><li>walking away</li></ul><p>It is important to hold those who tease and bully others responsible for their actions. Your child’s school may have policies in place to deal with bullying; speak to your child’s teacher or principal. Develop a plan that sees the school’s policy put into action.</p><p>Identify opportunities to provide education to your child’s peers, including those who bully, about epilepsy.</p><p>For more information, please see the "<a href="/Article?contentid=2123&language=English">Resources and Support</a>" page.</p><h2>Helping your older child cope</h2><p>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, 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 keep their adolescent-related issues in mind as well. </p><p>Some additional suggestions to help your teenager are:</p><ul><li>Empathize: give them the opportunity to express their concerns and frustrations.</li><li>Emphasize their experience, character, and strength in dealing with negative experiences, illnesses, or differences.</li><li>Give them some extra time and support.</li><li>Involve the epilepsy care team and support groups as needed in the process.</li></ul>https://assets.aboutkidshealth.ca/AKHAssets/helping_your_child_cope_with_epilepsy.jpgHelping your child cope with epilepsy

Thank you to our sponsors

AboutKidsHealth is proud to partner with the following sponsors as they support our mission to improve the health and wellbeing of children in Canada and around the world by making accessible health care information available via the internet.