Explaining epilepsy to others: how do I explain Epilepsy to my child?

Explaining epilepsy to others: how do I explain Epilepsy to my child?

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A diagnosis of epilepsy can be difficult for all the family, particularly as many parents will not have a deep knowledge of the condition and how to help their children cope.

It may take time to come to terms with the diagnosis but responding positively, openly and calmly will have a huge influence on how your child deals with it.

It is important to be honest about the diagnosis so they have a clear understanding of what to expect but use clear language and terminology as younger children can be overwhelmed with facts and unusual words.

Your child can have a happy, healthy life so it is vital to be positive.

Research

Make sure you understand the nature of their epilepsy by discussing it with their clinician and following up on any resources they suggest. It will help allay your fears and better equip you to provide calm, clear answers.

The charity Young Epilepsy advises: “The whole situation can be confusing and worrying, as they now have to take medicine every day and may see their parents upset or worried, which in turn can make them anxious.”1

Encourage Questions

Asking questions is an essential component of all learning and epilepsy is a new subject for them so help them gain knowledge and dispel anxiety. It will help them ‘normalise’ their condition.

Reassure them there’s nothing for them to be frightened about and give the child time to take in all the information.

Explain

The entire family needs to be aware of the condition – it can be unsettling for siblings who will ask ‘Will I get epilepsy?’ and may be distressed when seeing a seizure. They need to be assured that it will not affect the family dynamic and they won’t suffer as a result.

Talk to the parents in their friendship group so they can help ensure their friends do not over react or shun them because they are fearful or scared. It will help them manage activities and be aware of anything that might trigger a seizure.

Circulating knowledge reduces the opportunity for misunderstandings that can fracture friendships.

Involve Your Child

Your child should feel involved in any element of the awareness process or their treatment to avoid any confusion from misheard or misunderstood conversations. It is a learning process for them and engagement and involvement removes stress and fear.
One of their biggest concerns will be feeling different from their friends and that is fuelled by lack of knowledge.

Involvement will help build self-confidence but your approach may have to change through different phases as they grow up.

If your doctor has prescribed rescue medication in case there are seizures, make sure your child knows that administration might be needed, eigher in a home or outdoors setting.

Help them deal with questions

Children are naturally inquisitive and your child will certainly be asked about their condition. Talking to them so they have knowledge and are not scared by questions will enable them to reduce fear and misunderstanding among their peer group.

Carry on ‘as normal’

Epilepsy is not a ‘barrier’ to normal life and children can carry on with most activities and sports, which will reinforce their self-esteem and help acceptance from other children.

Your child should enjoy a ‘normal’ childhood and not be limited by epilepsy. Have discussions with school teachers, sports coaches and youth group leaders and provide them with practical information such as the type of seizures, the doctor’s phone number and your contact details.

Ask them which other children at activities, such as a sleepovers and sports events, should know about their epilepsy as it is important they know to get an adult if a seizure occurs.

Teen years

Teenage years can be problematic as children can become self-conscious about any aspect of their character and appearance. They may find it harder to engage with new groups – and may be embarrassed – when they change schools or take up new activities and the general public’s awareness about epilepsy and how to respond to a seizure is still limited.

It is important to keep up a dialogue so that any concerns do not grow into stress, anxiety and depressive feelings. Make it easy and natural for them to talk to you and share their feelings.

Seek Support

Your doctor will have printed and online resources that are effective at explaining epilepsy and providing tips on how to manage it.

Peer support groups are a good source of information and lived experiences that will help you not feel isolated and become better able to manage your child’s epilepsy through the various, distinct phases of their childhood.

Epilepsy charities and associations provide advice and guidance across European countries.

 

References:

  1. Young Epilepsy. Talking to Your Child. Accessed January 2021. https://www.youngepilepsy.org.uk/for-parents-and-carers/epilepsy-and-your-child/talking-to-your-child.html
  2. Epilepsy Foundation. Epilepsy & My Child Toolkit. A Resource for Parents with a Newly Diagnosed Child. Accessed January 2021. https://www.epilepsy.com/sites/core/files/atoms/files/English_Toolkit_updated%202014.pdf
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