Explaining an epilepsy diagnosis

Important considerations for talking to your child, siblings, and others about an epilepsy diagnosis.

Talking to your child

One of the important responsibilities that a parent of a child with epilepsy will face is the responsibility of helping the child cope with their condition both emotionally and practically, so that they learn to manage their own health as much as possible.

This is not a simple task. It requires open, careful communication, patience, and trust.

A variety of factors will determine how much information to give your child about their condition and when to provide that information.

A child’s age, developmental abilities, and other personal factors are important considerations. It is necessary to recognise the important impact of epilepsy on a child and to be responsive to their needs as they adjust to their condition.
It is equally important not to lose sight of the fact that a child with epilepsy is first and foremost a child with multiple qualities and interests, and reduce the risk of having epilepsy define the child.
The decision of how much to tell your child is a critical one. It is important to strike a balance in the information that is provided so that the information enables the child to understand their condition without causing anxiety.
Children are very perceptive and will know that something is somehow different. Being honest will avoid confusion and mistrust. It will help you in the future to build your child’s skills and capacity to reach their optimal level of independence, and, in most cases, to manage their own epilepsy.

Regardless of the child’s age, they are likely to have questions and concerns. Like parents, they will have feelings about their situation and will need time to adjust. Children will generally let their parents know how much information they want.

Communication tips

When communicating with your child about their epilepsy, it is helpful to:

Be honest about the diagnosis and the implications of the diagnosis.
Provide information in a developmentally and cognitively appropriate way - tailor the information to your child’s level of understanding.
Encourage the child to ask questions and talk about their feelings - always try to be available to answer any questions the child has in a straightforward way.
Reassure the child - e.g. tell them that the parents and doctors will work together to help the child manage their epilepsy.
Reassure the child that the epilepsy is not their fault - sometimes children imagine that their illness is a punishment for something they have done or thought.
Be honest about your own feelings but do not overburden the child with your feelings - be positive and optimistic about your ability to cope.
Seek support from your child’s doctor or healthcare team to help explain the diagnosis to your child.
Provide information to help your child know what to expect in terms of seizure onset, management of the condition, preparation for procedures, or feelings they may experience.

Managing expectations

Managing feelings:

A child’s feelings about their diagnosis may change over time depending on the progression of the condition and their developmental stage. It is important to encourage your child to talk about their feelings and concerns.
Sometimes a child may feel more comfortable talking to another adult about their feelings, perhaps a grandparent, aunt, teacher, school counsellor, and so on.
In many ways, parenting a child with epilepsy is the same as parenting any other child, only with a few extra requirements depending on the nature of their epilepsy. For this reason, it will be important for parents to treat their child as much as possible as they would any other child. This will help the child lead as normal a life as possible.

Adolescence and teens:

Adolescence can be a challenging time for young people with epilepsy as they struggle for independence from their parents, attempt to conform to their peers, and forge their own sense of identity.
It can be a time of high anxiety for parents who may be concerned about compliance with medication and other potentially risky behaviours. Open honest communication and information, along with a healthy dose of patience will help.

Participation in activities:

Participation in the types of activities that children of a similar age would normally participate in should be encouraged (within the limits of the child’s abilities and safety requirements).
Appropriate discipline and boundary setting are as important for children with epilepsy as for those without. Expectations of your child should be clear and discipline should be consistent - e.g. completing homework, undertaking chores, and being polite.
These measures will help ensure that the child develops good social and practical skills which help them achieve their optimal level of independence in their social environment. They will help the child feel included and respected as an equal member of the family and community. This will also help equalise the relationship with siblings.
The key is to strike a balance which takes into account the child’s ability and fairness in expectations of behaviour and participation.

Talking to siblings

Having a child with epilepsy often places additional demands on parents, both emotionally and practically.

Siblings of children with epilepsy are similarly affected and have to undergo the same process of adjustment to the diagnosis as parents. Parents, therefore, must be mindful of the needs of siblings to provide the support that they need to cope with their feelings and special circumstances.

It can be difficult for parents to manage all the competing needs whilst trying to adjust themselves. Seeking support and assistance for yourself when needed will benefit the whole family.

It can be difficult for siblings, but most siblings of a child with extra needs will make a good adjustment. Most will be able to describe stressful feelings as well as positive aspects of their experience.

Common sibling concerns

Worry about their brother or sister
Worry about the parents
Worry about the future
Fear of getting the condition
Confusion about the condition
Isolation and a feeling of being left out
Anger and resentment
Embarrassment
Pressure to be good, helpful, and successful
Sense of responsibility for looking after the sibling

When parents are aware of the actual impact of epilepsy on other children, additional assistance can be organised to help the siblings.

Tips to support siblings

When responding to the needs of siblings, remember to:

Focus on open, honest communication about the diagnosis and its implications.
Provide siblings with opportunities to talk about their feelings and strategies for dealing with them. Listen to the sibling, encourage questions, and be available to answer questions and talk about feelings.
Provide information in a developmentally and cognitively appropriate way.
Provide strategies to deal with difficult situations (e.g. embarrassing behaviours, reactions of others, seizures, etc.)
Facilitate peer support and links with other siblings of a child with special needs.
Ensure social support (e.g. connections with other family, adults, schools, peers, etc.)
Create opportunities for individual quality time for the sibling with the parents.
Acknowledge and celebrate the sibling’s special qualities and achievements.
Acknowledge the challenges faced by the sibling.
Facilitate opportunities for positive interactions between the child with epilepsy and their sibling.
Lead by example (e.g. share feelings, pay attention to self-care, etc.)
Be aware of the signs that the sibling may be struggling and seek professional advice (e.g. withdrawing, sleep disturbances, avoiding sibling, significant behaviour changes, etc.)

Telling others about the diagnosis

Decisions around who to tell and when to tell others about your child’s epilepsy are not always straight forward.

On the one hand, telling others about the diagnosis will enable them to provide valuable support and assistance to parents and will help reduce isolation.

On the other hand, it may also lead to numerous calls and questions before parents have had time to process the new information themselves.

The timing seems to be the key factor, and this will depend on the individual family.

Tips for deciding what information to share about your child's epilepsy

Only talk to others about the diagnosis when you are ready to talk.
Consider limiting who you share the information with immediately after the diagnosis to a small number of close family or friends - this will give you an opportunity to process some of the information yourself before confronting other people’s questions and concerns.
Nominate a family member or friend to be the contact person for extended family and friends - they will be able to filter calls and share information in accordance with your wishes.
Be prepared for the fact that others may not understand the diagnosis or may have different opinions regarding treatment and management.
Think about what you need to say to whom and gear your information accordingly. For example, the information that your child’s school will need to know will be different from the information that you would share with grandparents and siblings.
Be specific about any support or assistance you require. Be precise about any care and safety requirements.
Focus on your child as a whole person. Your child is not the diagnosis - the language you use will help reinforce your child’s personal strengths and characteristics rather than epilepsy and associated challenges.
Ensure that your child with epilepsy and any siblings have been given appropriate information about the diagnosis - they too need to be prepared for the reaction of others, and it is important that they receive information directly from the parents.