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Families share many things — food, holidays, clothes, and daily routines. They share each other's joys and disappointments, celebrations and setbacks. Thus, when a child has epilepsy, it affects the whole family. The condition isn't contagious (catching), but there can be a family connection (see “Genetics and Epilepsy”).
As a parent of a child with epilepsy, you want to do everything you can to help your child. However, if you have other children, you may then be concerned that you are then not able to give them enough attention. You may be uncomfortable telling relatives, or not want to worry them. If your child has numerous doctor appointments or is hospitalized, it can mean time away from work, adding to your stress and possibly financial concerns.
Find Support
Do not try to do it all alone. One of the most important things you can do for your family is to build a support network. In an EpilepsyUSA interview, Mary Lou Connelly spoke about how her family first found it hard to talk to relatives and friends about her son's epilepsy. She said, “We did hold a lot in when we probably should have shared and could have gotten more support from people when we were in a time of need.” Read more of her EpilepsyUSA interview and visit the Raising Awareness section of this site for tips on talking to and involving others.
“It Really Does Take a Village,” is an EpilepsyUSA article that looks at how important it is to build a supportive community. One of the best places to start is your local Epilepsy Foundation affiliate, which can connect you with other families and services in your community. You can also talk online, 24/7, with other parents through our Parents Helping Parents eCommunity.
Remember, if you don't take care of yourself, you won't be able to take care of your child. Read “Caring for the Caregiver: You” from EpilepsyUSA. You should try to go out once in a while and do something special for yourself, such as go to a movie, exercise class or dinner with friends. If you use a babysitter, talk to your sitter beforehand about your child's epilepsy. Make sure the sitter is comfortable with your child's condition before you leave them alone. If your child has frequent seizures, have the sitter spend time with you and your child to see how you handle the seizures. Click here for materials about epilepsy and first aid that you can give to your babysitter.
Establish Routines
Routines, schedules and structure are what keep all busy families going. For some families this means dinner at the same time every night. For others, it could be rules about when homework and chores get done or a nightly bedtime story. What's important is that there is enough structure that children feel secure and organized. This is essential for children with epilepsy.
Routines That Work:
- Have your child take medication at the same times every day.
- Make sure your child gets enough sleep to help lower the risk for seizures.
- Schedule regular time for homework and studying to help your child keep up at school.
- Give your child chores such as setting the table, picking up toys or getting water for a pet. Children like to feel that they're contributing to the family and learn responsibility from helping.
- Set clear rule and limits. Sometimes, parents worry that upsetting a child with epilepsy can lead to a seizure. Usually, if you stay calm and your child is old enough to understand why you are stopping or not allowing a certain behavior, it shouldn't increase the risk of a seizure. However, if this is a concern, talk to your doctor about the best way to discipline your child.
Include the Whole Family
Another concern for many parents is how to spend enough time with their children who don't have epilepsy. You can't be at a doctor's appointment and little league game at the same time. If one child is struggling at school and needs help every night with homework, you'll have less time to help another study for tests or do special projects.
As soon as children are old enough to understand, explain to them what epilepsy is and why it requires so much of your attention. See Explaining Epilepsy to Children for some tools you can use. When they get older, teach them what to do if their sister or brother has a seizure.
Try to understand that it's normal for children to resent or be jealous of the time parents need to spend taking care of siblings with epilepsy. They may be scared that they could get epilepsy (see What Causes Epilepsy). Or, they could have heard children saying cruel things about epilepsy and be embarrassed. Encourage them to talk about their feelings and let them know that it is okay to have them. When you can, plan special outings or activities so each of your children can have some time alone with you. It does not have to take a lot of time or cost a lot of money. Ten minutes reading a book, a walk to get ice cream or watching a movie together can help all children feel “special.” It is also important to continue to make time for the traditions and celebrations — holidays, birthdays, vacations, etc. — that are so important to family life.
Garth Stein is an author and filmmaker whose work captures some of the concerns and challenges he faced growing up with a sister with epilepsy. He says that they helped each other and that she taught him "you don't quit. If you believe in your own talent, you don't quit." As a child, he says he was often the one to find her having a seizure and learned to take control: “I was suddenly in charge, telling people to get ‘that thing’ out of her mouth — whatever ‘that thing’ happened to be — and to please call an ambulance, or to go find my parents." Read more of his EpilepsyUSA interview
Be Safe
Wanting to do everything you can to protect your child is part of being a parent. When your child has epilepsy, even everyday things — steps, bicycles, and the local pool — can be dangerous. Each family has to make their own decisions about what is and isn't safe for their child. This will depend a lot upon your child's age, interests, types of seizures and how well your child responds to treatment. When in doubt, talk to your doctor.
In general, the more active and involved your child can be, the better. However, if your child has epilepsy, there are some extra safety precautions you should take:
Water Safety
- Supervise young children during baths and have older children take showers. In case your child has a seizure while the hot water is running, set the water temperature low. Make sure the drain works well and won't clog.
- Never let your child swim without an adult watching who knows your child has epilepsy and what to do in case of a seizure.
Helmets
- If your child has atonic or tonic seizures, your doctor might recommend that your child wear a helmet when playing outdoors in case of sudden falls. If your house has a lot of steps, you might want to have your child keep the helmet on indoors as well.
- All children, and especially children with epilepsy, should wear a helmet when bicycle riding, skateboarding, etc.
Everyday, the two most important things you can do to protect your child are to make sure that:
- Your child takes medication as directed.
- There are always people with your child who know what to do if your child has a seizure.
How Parents Can Help
- Discuss epilepsy openly and honestly with your child
- Encourage sports, hobbies and other interests
- Work with your child to explain epilepsy to friends, relatives, teachers and others
- Continue family activities and traditions
- Make time for yourself without feeling guilty
