Coping with the diagnosis of epilepsy

A diagnosis of epilepsy presents new challenges for parents and children in terms of adjusting to a new normal and developing coping strategies that will help them live with the condition.

When a child is first diagnosed with epilepsy, family members can experience a range of feelings. The experience of witnessing a child's first seizure can be frightening for parents. Initially, parents may fear that their child might die or that the seizure(s) might cause brain damage.

The range of emotions may include:

• Anger, shock or denial: Why my child? Why our family? This can’t be true.
• Confusion: What is epilepsy? What is causing my child's epilepsy? How do I keep track of all the tests and treatments? Will my child have more seizures? What are medication side effects?
• Sadness: I want to be able to fix this or make it go away, and I can’t.
• Guilt: Why didn’t we notice something earlier? What did we do wrong? Is there something I did to cause this? Some mothers think back to their pregnancy to try to determine what they might have done. Doctors often reassure parents that they did not cause their child's epilepsy.
• Fear and worry: What does this mean for my child’s life and future? What happens if the medicine doesn't control the seizures? Will my child outgrow the epilepsy? What will others think about my child? How will they treat my child? Will epilepsy affect my child's ability to learn? What effect will epilepsy have on my child's social development in the future? How will it affect our family? Many parents worry that they won’t be able to cope. This is common when faced with a new diagnosis.
  
• Anxiety and frustration: Parents may feel anxious because of the unpredictable nature of the seizures. They may feel frustrated if the seizures are not coming under control. The uncertainty can permeate all aspects of life, such as disruption to work life, family life or the parent relationship.
  
• Hope: Most parents express a hope that the seizures are only temporary, or that the seizures will be controlled by medicine

All these concerns and emotions are very normal. Talking about them, learning to manage them and getting your questions answered all form an important part of adapting and learning to cope with a diagnosis of epilepsy. Your child’s treatment team can give you support, as can local epilepsy organizations and support groups.

By learning more about your child’s condition, you can also help your child understand and cope. Your child may have many questions, or they may not want to think or talk about the diagnosis. They may be anxious, confused or angry.

How parents react

Along with the need to know as much as possible about epilepsy and its impact, parents have practical worries about their child's safety:

• How closely should they monitor them?
• What restrictions should be placed on their activities because of safety concerns?
• What information should they provide the school to ensure a safe environment?

Finally, parents wish to know how to effectively communicate their questions and concerns to their child’s doctor and the other health team members involved in managing their child's epilepsy.

Coping with your feelings

Your feelings about your child’s diagnosis can influence their perception about seizures and epilepsy. It therefore can be helpful to explore your feelings and how they affect your behaviour, the ways in which you act and how you respond to your child.

Consider talking about your feelings with family members, doctors and other parents of children diagnosed with epilepsy. A good way to connect with other families living with epilepsy is through your local epilepsy agency. The Canadian Epilepsy Alliance can help you find an agency near you.

Ask questions, get information. The more you understand about seizures, tests and treatment options, the more this can help you gain some control of the situation. The more you know about your child’s condition, the more information you can share with them. Learning more about seizures can also help you to share appropriate information with extended family and friends, as they too will most likely be trying to find ways to make sense of this new diagnosis.

Speaking with other parents whose children have gone through something similar may be helpful. Your epilepsy health-care team or local epilepsy chapter may be able to put you in touch with these parents. You can also get in touch with epilepsy support groups online.

Health-care professionals, such as social workers associated with the hospital who have expertise in counselling, can also provide support.

How children react

Your child may also react to a diagnosis of epilepsy with many different emotions:

• Worry: How will this affect my activities? What will my friends think?
• Fear and anxiety: Will this procedure hurt? Am I going to die?
• Anger and resentment: Why me? This isn’t fair!
• Guilt: Did I do something wrong? Do my parents have to take too much time off work to look after me?

What do you tell your child about the diagnosis?

The information that you share with your child will depend on your child’s age, maturity level and personality, what your child already knows and wishes to know, your comfort level in sharing information, and the knowledge you have about the seizures. Children who have not been aware during their seizures may not be as curious or express distress or concern. However, if others provide negative feedback about the seizures, your child will need some explanation and reassurance about the seizure.

Understanding the information about epilepsy can help you to share appropriate information with your child. It is common for parents to struggle with what to tell their child about the diagnosis. It is helpful to include children as partners in their care as soon as possible by sharing information and encouraging them to ask questions and express their concerns. This will help them to prepare for the more active role they will play in their care in the future.

Tips for talking with your child

These suggestions may help you share information about the diagnosis with your child:

• Find out what your child already knows. You could ask, “Can you tell me what you already know about epilepsy?”
• Clarify your child’s understanding. Children may use correct words, such as “seizure,” but may continue to have misconceptions. You could ask, “What does ‘seizure’ mean?”
• Ask to share more information. You could ask, “Can I tell you what I know about epilepsy and seizures?”
• Share information in a clear way. Provide manageable pieces of information and use language your child can understand. For instance, most children can understand that “The brain is the boss of your body and it controls everything that you do, from scratching your nose to talking to kicking a ball. Your brain sends messages to your body. Sometimes these messages get mixed up and then a seizure happens.” How you share the information will depend partly on your child’s age; there is more information about what to tell children of different ages below.
• Let your child lead the discussion as much as possible, as this will give you a better idea of what they want to know.
• Be aware of how your child responds to the information. Listen to what they say and watch for non-verbal cues and changes in mood or behaviour, as these may all be signs that your child is having a difficult time with the information. They may not understand, they may be sad or they may be worried or confused. You could ask, “What questions do you have about what we’ve talked about? What do you think or how do you feel about all this?”
• Maximize opportunities to talk and share information when your child is curious and asking questions about their condition.
• If you don’t know the answer to your child’s questions, take the opportunity to find the answer together, for example, by talking to the neurologist or getting information from a local epilepsy association. This will help your child gain the confidence to ask questions and begin to take control of their situation.
• Use varied resources to help talk to and educate your child, including books, videos, pamphlets, drawing, play, or joining children’s groups offered at a local epilepsy association.

How children respond to illness, and how you can help them cope, depends on their age as well as their normal coping style. See Epilepsy resources and support for a list of books that can help with talking to your child about their condition in age-appropriate language.

Coping at different ages

Preschool: 3 to 5 years

At this stage, children’s understanding of illness is vague and magical.

• They need simple explanations of the body, the illness and the treatments. You could say, “You need to take medicine to help you stay strong and healthy.”
• They begin to understand conditions through direct experiences. For instance, a child of this age can understand that “I have to go to the doctor because I have a cough.”

School age: 6 to 11 years

At this stage, children are developing logical reasoning skills. They can understand external causes and are more interested in the body.

• They need specific information about illness. You could say, “You are having seizures because of abnormal activity in your brain.”
• They can make links between having seizures and needing treatment. For instance, they can understand that “Blood tests help us to see if the medicine is working.”

Adolescence: 12 to 18 years

At this stage, children are able to understand multiple causes of illness. For example, they can understand that seizures may result from a combination of individual factors, such as the seizure threshold, and environmental factors, such as triggers and lack of sleep.

• They can understand ideas about prevention and factors that may cause seizures, such as stress and physical activity.
• They are able to weigh risk. For instance, one teenage girl with epilepsy says, “If I play basketball I will have a seizure. I still want to play, and I choose to play on weekends so seizures won’t disrupt my school work but I can still enjoy my sport.”

Coping styles

(This information is summarized from Kuttner L. A Child in Pain: How to Help, What to Do. Point Roberts, WA: Hartly & Marks; 1996.)

How your child has coped in the past with information that created anxiety and uncertainty may provide you with an indication of how they may cope with information about their epilepsy.

Leora Kuttner, PhD describes four different coping styles of children. Of course, these categories have been developed to provide an idea about the spectrum across which children display their coping tendencies. The categories should not be used to place children in boxes, but instead can be used to provide you with an idea of where your child is at a certain time and how to approach them.