Managing Your Child’s Epilepsy

Seeing a child having a seizure is very frightening for most parents. After a seizure, it’s common for parents to feel very anxious that another seizure may occur and may cause permanent harm or even death to their child. Parents usually worry too about their child being away from them – for example to visit with friends or other family members, to attend school, or to participate in sports activities. Parents may move the child into their room or sleep in the child’s room, so they can monitor them at night. Unfortunately, the parent’s sleep gets disrupted!

It may be normal for a parent to feel anxious at first. Yet it’s important to know that the risk of death or serious injury from a seizure is very low in most children. Even if more seizures occur, they usually are short and stop on their own. Seizures are able to be controlled with medication in most children.

Here are the best ways to reduce the risk of more seizures, injury, or even death from a seizure:

Encourage your child to be active socially. Everyone may feel nervous at first, but keeping your child from going out with friends or doing normal childhood activities can be more harmful to him or her. Think about your child’s strengths, difficulties, and what she enjoys. How can you maximize their physical, social, and psychological well-being?

A Few Tips

  1. Children should socialize with their friends. Playdates are encouraged for most children with epilepsy, although the responsible adult should be aware of the epilepsy and what to do if the child has a seizure. Sleepovers are reasonable for most children. Make sure the child/teen does not stay up too late, or get up too early, if seizures are associated with sleep.
    • In most cases, it is safe for teens to go out with their friends without a parent present, as long as someone in the group knows what to do if a seizure happens.
    • It is important that teens understand potential triggers for their seizures so these can be avoided. If a trigger can’t be avoided, they can learn ways to modify their habits or lifestyle.
  2. Children and teens with epilepsy are able to participate in nearly all sports activities if their coaches are aware of the seizures and any safety precautions.
  3. It is generally safe for most children with epilepsy to be left with a babysitter, but make sure the sitter knows the child has epilepsy, knows basic seizure safety, and when to call for help.
  4. While many families worry about seizures during sleep, sleeping in the same bed is discouraged for most children. This can lead to greater sleep problems and may increase the risk of seizures. Many families use a baby monitor in the child’s room when they are asleep. Other monitoring devices are available specifically to detect seizures. Most of these detect repeated movements that happen with a tonic-clonic seizure. Use of these may not be reliable for very young children. They are generally not needed for most children with epilepsy controlled by medication.

Children and teens with epilepsy have a significantly higher rate of drowning than those without seizures. Most deaths from drowning happens in bathtubs or pools.

  • All children with epilepsy need one-on-one supervision while in the bath. Showers are much safer options.
  • Showers are also better for older children and teens with epilepsy. This gives them more privacy, as they do not require one-on-one supervision.
  • If the shower has a pop-up shower drain, water can build up if someone falls on it. It’s easy to take the pop-up drain out to avoid this.
  • Is a child/teen tends to fall during seizures, shower while sitting on the floor of the tub and use a hand-held shower nozzle. Or use a shower seat.

Children and teens with epilepsy also need supervision while in a pool. A responsible adult should remain poolside when the child/teen is in or around the vicinity of the pool.

Families and teens vary a lot in how comfortable they are talking about the their epilepsy. Who you tell is very much up to you, but it is strongly recommended that any adult who is in a position of responsibility be aware of the diagnosis. This would include teachers, coaches, parents of friends, camp counsellors, etc. In most cases, children and teens with epilepsy should have a seizure rescue or action plan that is shared with the school or relevant persons. Make sure to update this each year or if there are changes in seizure types, medicines, or what to do.

As teens socialize more away from their parents, they need to learn how to talk about seizures and decide who they want to share it with. Encourage them to start with close friends and people they spend a lot of time with. Teaching friends basic seizure first aid should be part of this.

Every parent is different in how they cope with their child’s epilepsy. It is not unusual for each parent of the child to process information differently.

  • Some confide in their partner and others to close friends and family.
  • Others prefer to speak with other parents who have faced the same challenges.
  • Your child’s doctor or other professionals they work with (such as nurses and social workers) are also good resources.
  • Your local Epilepsy Foundation is a good way to connect to other families and professionals.

It is important to find someone you trust to talk about these concerns and worries.

Resources

Epilepsy Foundation 24/7 Helpline: 1-800-332-1000 (en Español 1-866-748-8008)

Find Your Local Epilepsy Foundation

Authored By:

Elaine Wirrell MD

on Wednesday, March 13, 2019

Resources

Epilepsy Centers

Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

Epilepsy and Seizures 24/7 Helpline

Call our Epilepsy and Seizures 24/7 Helpline and talk with an epilepsy information specialist or submit a question online.

Tools & Forms

Download our seizure tracking app, print out seizure action plans, or explore other educational materials.

Find an Epilepsy Specialist

Ready for help? Find an Epilepsy specialist who can help guide you through your epilepsy journey.