Managing Your Child’s Epilepsy
I am worried. Is this normal?
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.
What can I do to lessen my child’s risks?
Here are the best ways to reduce the risk of more seizures, injury, or even death from a seizure:
- Make sure your child takes their seizure medicine regularly. Missed doses are one of the most common problems leading to more seizures or seizure emergencies.
- If medicines aren’t working and seizures continue, call your child’s doctor or nurse. It may be time to recheck the medicine or try something different.
- Learn seizure first aid. Make a seizure action plan on what to do if your child has a seizure and how to keep them safe. This includes knowing when your child may need to go to the hospital. Having a plan and knowing what to do can lessen your worries and make you feel more confident in managing seizures.
What can I do to keep my child’s life as normal as possible?
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
- 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.
- 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.
- 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.
- 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.
Are there any special precautions I should take to keep my child safe?
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.
Who needs to know about my child’s epilepsy?
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.
Who can I talk to about my concerns?
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.
What resources are available for families through the Epilepsy Foundation?
- Print and online learning resources, including
- Kids Crew program for children 14 and under helps them create awareness, share stories, and join activities
- Teen and young adult programs through your local Epilepsy Foundation provide opportunities for connecting through fun activities like bowling nights, art programs, basketball workshops, museum nights and more
- Connecting with other families at local walks and family education conferences and special events
- Camps overnight or day for younger children, teens and families are fun and help children meet others like them
- "Teens Speak Up, Speak Out" program helps young people get involved and raise awareness among their legislators
- Art programs provide a creative way to express feelings and connect with other participants
- Training for families, schools and childcare personnel improves seizure recognition and teach seizure first aid
- In-person, phone or online support groups for individuals and families offered by your local Epilepsy Foundation
- Webinars and Facebook live sessions to help answer your questions
- Someone to talk with 24 hours a day, 7 days a week, who can link you to epilepsy care, support and services
Epilepsy Foundation 24/7 Helpline: 1-800-332-1000 (en Español 1-866-748-8008)
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