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Explaining a parent’s or sibling’s epilepsy to children

Parents talking to their child.

Explaining a parent’s or sibling’s epilepsy to a young child can be difficult at first. It’s important to use language at a level the child can understand. The description needs to be clear but not frightening. Every child is different and you are the best judge of what type of information your child needs. Explaining your own or a sibling’s epilepsy to a child is generally no different to explaining to a child about their own epilepsy. The explanations provided in the first section of this booklet should be used. The key points are that the seizures are short, that the person feels better afterwards, and that the person may get sleepy. In addition to this, you have to tell the child whether or not they will need to do something when the seizure happens. Explaining to the child exactly what they will see if they watch the person have a seizure can reduce the impact the event has on the child.

Young children

The child needs to know what to do if their parent or sibling has a seizure. For young children this means telling an adult who can help. It helps to prepare them by saying something like “If Daddy has a seizure, tell Mummy”, or “If Mummy has a seizure, press 1 for Granny”, or “If your brother/ sister has a seizure, tell an adult”. Even young children have been able to raise the alarm by pressing a preset number on a phone. It helps if the person with epilepsy wears ID which includes their details.

Your child may be worried about their safety if their mum or dad has a seizure while they are together. You can explain who they can contact, if they can use a phone, or who to give a card with ‘My parent has epilepsy’ on it to, to ask for help. If they are with their parent in a public place they can give this card to someone who can help keep them safe like a Garda, security guard or a person working in a shop. Epilepsy Ireland supplies these cards. Similarly, they can carry a card for a sibling. 

Older children

Older children and teens need to hear the same messages to reassure them about seizures. They need to hear that seizures are usually short, that the person should recover soon and that they need to tell an adult. They may also be able to give practical help − like the correct first aid − themselves.

How can an older child or teen help?

This will depend on their level of maturity. You know best what your child or teen is able to handle. Many cope well when their parent or sibling has a seizure and can manage the situation alone. Others might be upset or need support themselves. Your older child may manage a seizure well but they should still be told to call an adult for support to deal with it. This will ensure that they are not being held responsible for the decisions made, and will not have to handle their fear or anxiety alone.

Key points: talking about a parent’s or sibling’s epilepsy

  • Find out what your child believes epilepsy is and gently correct any misleading information.
  • Keep explanations brief, giving the main points but not too much detail.
  • Acknowledge their fears or anxieties about the seizures.
  • Use information suitable for their age and level of understanding.
  • Use the terms ‘epilepsy’ and ‘seizure’ so they are familiar .
  • Tell them it’s not their fault that their parent or sibling has epilepsy.
  • Only give them them the level of responsibility that they can handle.
  • Give them clear instructions on what to do and who to contact.
  • Try not to allow epilepsy become the main focus of family life.

 

You can read more about explaining epilepsy to a child by visiting the 'Children' Section of our website.