An epilepsy diagnosis can be a challenge for everyone in the family, especially since many parents do not have in-depth knowledge about the condition and what can be done to help their children manage epilepsy.
It can take time to come to terms with the diagnosis, but reacting positively, openly, and calmly has a huge impact on how your child handles the diagnosis.
It is important to be honest about the diagnosis so that children have a clear understanding of what to expect. Use clear language as younger children can be overwhelmed with facts and unfamiliar words.
Your child has the potential for a happy and healthy life, so it is important to stay positive.
Research
Make sure you understand epilepsy by discussing it with your child’s doctor and making use of any resources they suggest. This will help calm your fears and provide you with better conditions to offer calm and clear answers.
The charity Young Epilepsy recommends: ”The whole situation can be confusing and worrying, as the child now has to take medicine every day and may see their parents upset or worried, which in turn can make the child anxious.”
Encourage questions
Asking questions is an important part of all learning, and epilepsy is a new topic for children, so help them gain knowledge and relieve anxiety. This will help the child ”normalize” their condition.
Reassure the child that there is nothing to be afraid of and give them time to absorb all the information.
Explain
The whole family must be informed about the condition – worried siblings may ask, ”Will I get epilepsy too?” and may become scared when they witness a seizure. Siblings often need reassurance that it will not have a major impact on the family and that they will not suffer because of the diagnosis.
Talk to the parents of your child’s friends so they can help ensure that the friends do not overreact or avoid your child out of fear or being scared. This will help friends manage what happens and be aware of what can trigger a seizure.
Spreading knowledge reduces the chance of misunderstandings that can break friendship bonds.
Involve your child
Your child should feel involved in all parts of the information process or their treatment to avoid confusion from misinterpreting or misunderstanding different conversations. It is a learning process for the child. Engagement and participation remove stress and fear.
One of the child’s biggest concerns will be feeling different from their friends, and that feeling is based on a lack of knowledge.
Involvement will help build self-confidence, but your approach may need to change through different phases of their development.
If your doctor has prescribed medication for seizures, make sure your child knows that administration may be needed either at home or outdoors.
Help your child answer questions
Children are naturally curious, and your child will likely be asked about their condition. Talking to children so that they are knowledgeable and not frightened by questions will enable them to alleviate their fear and reduce misunderstandings with their friends.
Continue ”as usual”
Epilepsy is not a ”barrier” to a normal life. Children can continue most activities and sports, which will boost their self-esteem and help them gain acceptance from other children.
Your child should have a ”normal” childhood and not be limited by epilepsy. Have discussions with teachers, coaches, and youth group leaders and provide them with practical information such as the different types of seizures, the doctor’s phone number, and your contact details.
Ask them which other children should know about the epilepsy in activities such as overnight trips or sports events, as it is important they know to contact an adult if a seizure occurs.
Teenage years
The teenage years can be problematic as children become aware of all the different aspects of their character and appearance. In the teenage years, it may become harder to engage in new groups. It can be embarrassing when switching schools or starting new activities. Public awareness of epilepsy and how to respond to a seizure is still limited.
It is important to continue the dialogue so that any concerns do not develop into stress, anxiety, and negative feelings. Make it easy and natural for your child to talk to you and share their feelings.
Seek help
Your doctor will have resources, either on paper or online, that explain epilepsy in a good way and provide tips on how to manage it.
Support groups, such as patient associations, are a good source of information and hearing about experiences, which helps you not feel isolated and become better at managing your child’s epilepsy through different phases of childhood.
Charities and patient associations for epilepsy provide advice and guidance.
References:
- 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
- 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
