Your Child At Home
It may be helpful to talk with your other children about epilepsy, and encourage them to ask you questions about it. Children often have misconceptions and may even blame themselves in some way about what has happened to a brother or sister. They may be afraid they will start to have seizures, too.
Siblings may also feel abandoned and lonely because the parents have been so focused on the problems of the child with epilepsy. Parents may have had to spend long hours at the hospital while the other children waited at home.
Setting aside some special time for the other children in the family, and making time to answer their questions fully should help.
Ignoring behavior you don’t like (so long as no one is likely to get hurt by it) and rewarding good behavior is as likely to work for children with epilepsy as it is for other children.
However, parents often worry that discipline or emotional upset because of a wish that is not being granted will cause a seizure. They may be tempted to give in to unreasonable demands from a child with epilepsy because of that natural concern.
If this is something that happens in your family, ask your doctor about the level of risk for your child and how you can exert discipline in a way that is safe and reasonable.
Informed, understanding relatives are a wonderful source of strength when a child has epilepsy.
Others may have beliefs about this condition that hail from an earlier time. They may think it is somehow linked to mental illness (it isn’t), or someone’s fault (wrong), or is related to mental retardation (usually not), or is even a sign of spiritual possession (an old myth that still lingers).
Helping other family members understand the true nature of epilepsy as a medical condition affecting brain function will set these fears at rest. Your commitment to helping your child live as normally and actively as his or her condition permits, and to treat your child as much as possible just like any other child, will guide their response as well.
One of the biggest challenges for parents when a child has seizures is to help the child maintain self esteem.
Studies comparing children with epilepsy with children who have other chronic health conditions, such as asthma or diabetes, show that having seizures has a more negative effect on how children feel about themselves.
The way parents feel about the epilepsy also affects how the child feels. Families that are open and accepting, and that help the child build on strengths, can make a positive difference in the child’s life.
How parents can help
- Emphasize the positive; praise success.
- Build on things the child likes and can do.
- Avoid describing the child’s seizures or the financial burden of medical care as problems in front of the child.
- Encourage a special hobby or lessons to acquire a special skill. Discuss seizures and epilepsy openly with the child and answer his or her questions about it.
- Encourage the child to be active and to have as much social contact with other children as possible.
- Try not to make your child’s seizures a reason not to do things the family would otherwise do.
- Take some time for yourself without feeling guilty about it.
Your child at school
Having seizures at school can be socially damaging to a child and frightening to others. However, it doesn’t have to be.
A well-informed, confident teacher and a supportive school nurse and school administration can make all the difference in the world.
There are several steps parents can take to create a more accepting school environment for a child.
Meeting the teacher
First, take time to meet with your child’s teacher before the beginning of each school year to discuss how epilepsy affects your child, what type of seizures he or she has, and how you would like the teacher to handle the seizures when they occur.
Since seizures are a common problem, many teachers will have had other students with epilepsy. If your child’s teacher is unfamiliar with seizures and would like information about them, contact your local Epilepsy Foundation. Videos, pamphlets and first aid presentations available from the Epilepsy Foundation have a basic message: that students with seizures belong in school and are in no way any kind of threat to other children.
With information, reassurance, and plenty of opportunities to ask questions, other children can also learn to take seizures in stride and continue to accept the child who has them. But gaining acceptance is not the only challenge for children with seizures.
While many children with epilepsy test within the same range as other children, and are quite normal and healthy, their achievement at school may be lower.
There may be several reasons for this, including side effects from the medication, days spent out of school for tests or doctor visits, and anxiety about having seizures at school. Memory or attention may also be affected.
After a seizure a child may be unable to remember anything that happened the previous day or immediately afterwards. Testing for learning disabilities may reveal specific difficulties related to where the seizures are occurring in the child’s brain.
Some children with epilepsy will need specialized planning, with goals and objectives carefully spelled out, developed in partnership between the parent and the school.
School activities should be open to all children, including children with seizures.
Various federal laws (Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act and the Americans with Disabilities Act) and state laws protect children with disabilities from discrimination on the basis of disability.
Dealing with risk
A seizure that ends normally after a minute or two is usually not hazardous to a child who has epilepsy.
However, risks increase when the seizure happens near water, at heights, near traffic, or in any setting in which sudden loss of awareness could be dangerous.
Parents naturally want to protect a child who has this extra level of risk on top of all the other risks that accompany a normal childhood. However, excessive concern about risk may isolate children with epilepsy from others and reduce social interaction. The following information may help you strike a balance.
Water can be a hazard to children with seizures, whether it is in a swimming pool, at the beach, or in the bathtub.
- Supervise young children closely during tub baths.
- Have older children take showers, not tub baths.
- Set water temperature low so a child won’t be scalded if consciousness is lost while hot water is running.
- Hang bathroom doors so they open outwards, and remove locks.
- Make sure shower and bath drains run quickly and are unobstructed.
A child with epilepsy — or any child — should never swim alone, or be on a boat or close to water (including backyard wading pools) without a flotation device or life jacket.
- Carefully supervise children near water.
- Make sure an adult is present who knows your child has epilepsy and is a good enough swimmer to help if your child has a seizure in the water.
- Tell lifeguards or swimming instructors at local pools or beaches that your child has seizures.
If a child has a seizure in water, he or she should be checked by a lifeguard or parent. If there is any possibility that water has been swallowed or breathed into the lungs, get a medical check up.
Unless your child’s doctor recommends otherwise, sports activities and other exercise are as beneficial to a child with epilepsy as they are to any other child.
In general, school sports activities and gym should be open to all children, including children with seizures. Safety measures such as harnesses, shock absorbing mats and adult supervision should reduce risks.
Coaches and other officials should be aware that a child has seizures, and how the parents want them to be managed.
Wearing safety helmets when riding a bicycle, or for sports where head injury is possible, should reduce risk.
What you should know
In many ways, epilepsy is a different condition in a woman than in a man. The differences arise because of biological differences between women and men, but also because of the different social roles they play. As a result of these biological and social differences, women with epilepsy face special challenges, especially in the area of reproductive health.