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How to Support a Child with Epilepsy: Information for Parents

Most children with epilepsy live full, active lives that include school, friends, sports, and other activities. How much epilepsy interrupts a child's life depends upon the kind of epilepsy, the success of treatment, and many other factors. Talk to your child's doctor about what activities your child can do and encourage your child to participate.

As your child grows, help him become more independent. Driving, college, career, marriage, and raising a family are possible for the vast majority of people with epilepsy.

Tips to Encourage & Support a Child with Epilepsy:

  • Learn as much as you can about epilepsy.
  • Discuss epilepsy openly and honestly with your child and help your child talk openly and honestly with others about epilepsy.
  • Avoid saying things that could make your child feel like a problem or burden.
  • Be positive.
  • Praise your child's success.
  • Encourage sports, hobbies, and other interests.
  • Help your child make friends.
  • 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. Respite allows you to take care of yourself so that you are physically and mentally better able to care for your child.
  • Build a support network for you and your child. Resources are available through the Epilepsy FoundationParent to Parent-USA,  Parent Training and Information Centers and Family Voices: Family-to-Family Health Information Centers.
  • Establish routines. Routines, schedules, and structure are what keep all busy families going.
  • Have your child take medication at the same time every day.
  • Involve your child in taking charge of her medications. 
  • Make sure your child gets enough sleep to lower the risk of seizures.
  • Schedule a regular time for homework.

Infants & Toddlers with Epilepsy:

Seizures occur most frequently during the first few years of life, during a time when the brain is going through its most dramatic growth and changes. Recognizing and treating seizures as early as possible can help avoid learning and developmental delays. However, diagnosing seizures in infants can be difficult, as they cannot communicate what they are feeling after a seizure or during medical tests. Parents and caregivers observations are especially valuable and necessary for doctor's to effectively treat infants and toddlers with epilepsy.

Finding child care for infants & toddlers with epilepsy:

One of the biggest challenges parents of infants or toddlers with epilepsy can face is child care. Some child care centers may not admit children with epilepsy. Some refuse to give them emergency anti-seizure medication, even though they may be required to do so by the Americans with Disabilities Act. Your local Epilepsy Foundation can provide information about laws and resources in your area. Click here for more information.

School-age Children with Epilepsy:

When children are older, having epilepsy can impact many parts of their lives, including how well they do in school, what sports they can play, and how they are treated by friends. The more parents can do to help their child lead an active, normal life, the better.

As with all school-age children, it is best to establish routines and set clear rules 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 a certain behavior, it should not increase the risk of a seizure. Parents should talk to their child's doctor if they have concerns about the best way to discipline.  

Teens with Epilepsy:

The preteen and early teen years are difficult for everyone. It is a time of great change, new challenges, and some dangerous temptations. When a child develops epilepsy, the risks, and insecurities that go along with this period are increased. It is important for parents to talk as openly as possible with their child about epilepsy and any other concerns.

  • Dating: This is a normal part of teen life – but it's far from easy. A first date can be nerve-wracking under the best of circumstances, but epilepsy just adds another twist. Teens often worry about is how much and how soon they should tell their date about their epilepsy. They also worry about rejection. Here are some dating tips and ideas to share with your teen.
  • Puberty: Changing bodies affect how children look, feel, and think. Changes in hormones can also affect seizures and medication needs, especially for girls. Sometimes, teens need to change in the amount or type of medication they are taking based on behavioral changes, etc.
  • Social Life: Having friends and fitting in may seem to be all a teen thinks about. Being "different" in any way, such as having epilepsy, is not easy. While parents can't make their child popular, they can help their son or daughter understand that having a few good friends is actually more important than having a lot of casual acquaintances. Teens should be encouraged to talk about epilepsy with their friends.
  • Substance Abuse: Alcohol and drugs are dangerous for all children, but even more so for children who are prone to seizures and may be taking medication for epilepsy. Parents should discuss the risks with their child. Then talk some more, and encourage your child's doctor and others your child respects to talk to her, too. Even if it seems like your child is not paying attention, the message may eventually sink in. Discuss not only the risks, but also ways to get out of uncomfortable situations.
  • Responsibility: This is the time when teens are learning to be more independent and that their actions have consequences. If a teen gets epilepsy at this age, it could affect his independence for a while. As a teen begins to spend more time away from home, he will need to start taking on some new responsibilities. Parents should work with your child and doctor to figure out the best way to organize and monitor their condition when they are away from home. When teens learn to drive, parents will need to check their local state driving laws.

Transitioning teens with epilepsy to adult health care:

Parents and medical professionals should work as a team to prepare children for their move into adulthood and help them learn to manage their health condition. This will include responsibilities such as:

  • Keeping track of medications
  • Refilling prescriptions
  • Making doctor appointments
  • Asking questions of the medical team, etc.

For more information and resources on building a care notebook, click here.  

Resources for Explaining Epilepsy to Teachers & Friends:

Help others in your child's life understand epilepsy. Make sure others know what to do if your child has a seizure. This will help keep your child safe, feel more comfortable, and do better in school. By talking openly and honestly about epilepsy, parents reduce some of the stigma and fear about it.

For tools and resources on explaining epilepsy to teachers and friends, visit www.epilepsyclassroom.com

​Additional Information:

Last Updated
11/19/2014
Source
Developed with funding from the Health Resources and Services Administration, Maternal and Child Health Bureau under grant U23MC08582 for Project Access. (Copyright © 2010 Epilepsy Foundation of America, Inc)
The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.
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