When it Happens

When a child is first diagnosed with epilepsy (a seizure disorder) her entire life can be impacted. The condition will probably have an impact on the entire family.

The diagnosis usually comes as a shock to everyone involved - the child, her parents and siblings.

Parents often experience a stressful mixture of anger, pain, denial, and even guilt, although there is usually no way the condition could have been prevented. After a while, these feelings resolve, and parents find the strength to face the challenges involved with this condition - and move on.

Studies show the way parents feel about epilepsy affects how the child feels.

Families that are open and accepting, and help the child build on strengths, can make a positive difference in the child's life.

Building Self-Esteem

One of the biggest challenges for parents when a child has seizures is to help the child maintain self-esteem and self-confidence.

Studies comparing children with epilepsy with children who have other health conditions such as asthma or diabetes show that having seizures often has a more negative effect on how children feel about themselves.  

It is important to encourage a positive outlook in children diagnosed with epilepsy. The following are some tips that can be used to encourage children with epilepsy:

• Emphasize the positive; praise success.
• Build on things the child likes and can do.
• Parents should 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 all questions about it.
• Encourage her to be active and to have as much social contact with other children as possible.
• Parents should try not to make the child's seizures a reason not to do things the family would otherwise do. 

The Rest of the Family

It may be helpful to for parents to talk with their other children about epilepsy. They can encourage siblings to ask them questions about it. 

Children often have misconceptions. They may even blame themselves in some way for what has happened to a brother or sister. They may be afraid they will start to have seizures, too. 

Siblings sometimes feel abandoned and lonely because the parents have had to focus so much on the health 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.

One of the most difficult questions that siblings may have is whether a child could die during a seizure. Parents and other family members worry about that, too.

The answer is that it is rare for a child with epilepsy to die during a seizure.

Behavior Issues

Parents sometimes have a tendency to ignore behavior they don't like (so long as no one is likely to get hurt by it) and reward good behavior. This is as likely to work for children with epilepsy as it is for other children. 

However, parents often worry that if a child is emotionally upset by discipline or a wish that is not being granted, he or she will have a seizure. Parents may be tempted to give in to unreasonable demands from a child with epilepsy because of that natural concern.

It is important for the parents of a child with epilepsy to check with the child's health care team about the level of risk for the child and how to respond to negative behavior in a way that is safe and reasonable. 

Informing Relatives

Informed, understanding relatives are a wonderful source of strength when a child has epilepsy.

But the rest of the family - uncles, grandparents, aunts, cousins - may have beliefs about this condition that hail from an earlier time. 

They may think it is similar 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).

The family's commitment to helping a child with epilepsy live as normally and actively as his or her condition permits, and to treat the child as much as possible just like any other child, will shape their attitudes as well. 

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 a busy street, or in any setting in which sudden loss of awareness could be dangerous.

Parents naturally want to protect a child who has to deal with seizures as well as all the other risks that are part of a normal childhood.

However, worrying all the time about risks can make parents overprotective. With the best of intentions, it's easy to end up keeping children with seizure disorders away from others. 

When this happens, it limits their chances of making friends and learning to interact with others.

Water Safety  

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.

Swimming and Water Sports

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 nearby who knows a child has epilepsy and is a good enough swimmer to help if a child has a seizure in the water.
• Tell lifeguards or swimming instructors at local pools or beaches that a 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 medical attention at once.

Other Sports

In most cases, sports activities and other exercise are as beneficial to a child with epilepsy as they are to any other child.
School sports activities and gym should be open to all children, including children with seizures.  Some precautions and extra supervision may be needed.

• 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. 

Seizures and 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

Parents should always take the time to meet with the child's teacher before each school year. They should explain how epilepsy affects the child, what type of seizures the child has, and how they would like the teacher to handle them if they occur.

Since seizures are a common problem, many teachers will have had other students with epilepsy.  If the teacher is unfamiliar with seizures and would like information about them, parents can contact a 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 be supportive of the child who has them.

This advice is based on the belief that being open about a child's epilepsy within the school community will lead to better understanding and a more enlightened response to seizures by school personnel.
 
However, some people point out that there are confidentiality and privacy issues involved, that it is important to weigh any risks along with the benefits of disclosing epilepsy, and that in some cases it may be best for the school nurse to be the only member of the staff who is told. 

In general, the Epilepsy Foundation supports providing information to the broader school community. However, each family has to decide those issues for themselves.

School Achievement 

While many children with epilepsy test within the same range as other children, some may do less well at school. 

There may be several reasons for lower achievement, including side effects from epilepsy medicines, 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 just beforehand or immediately afterwards.  Also, testing for learning disabilities may show that some learning difficulties are related to where the seizures are occurring in the child's brain.

Special Planning

Some children with epilepsy will need specialized educational planning, with goals and objectives carefully spelled out, developed jointly by the parents and school personnel.

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.