William B. Svoboda, MD, is a retired pediatric neurologist. He is the founder and former Director of Via Christi Epilepsy Center of Wichita, Kansas.
This series of articles about the effects of epilepsy on children's lives and personalities, and how parents can help their child achieve a happy, independent life, is based mostly on an interview with Dr. Svoboda that was conducted by Shawna Cutting, a writer for epilepsy.com.
How common are behavior problems in children with epilepsy?
Roughly one in four children with epilepsy has significant behavior problems. Another one in four has emotional difficulties that are less severe but still disturbing. In general, behavior problems are more troublesome in children whose seizures began at an early age. This is especially true for boys, who are more likely to "act out," but girls also are affected. Their emotional problems may be recognized less often.
What causes disturbed behavior? Is it the epilepsy itself?
You may suspect that your child's behavior problems are related to the epilepsy itself. It is true that behavior difficulties can be caused or worsened by epilepsy. Several aspects of epilepsy can affect the brain and contribute to behavior problems:
- underlying brain damage
- the seizures themselves
- small electrical discharges between the seizures
- the effects of seizure medicines
Any of these can impair normal brain functions or may cause chemical imbalances in the brain that lead to psychiatric difficulties. In some cases, small effects accumulate over many years and cause psychiatric problems to emerge in adulthood.
You may see brief periods of abnormal behavior leading up to a seizure, during a seizure, or for a few days following a seizure. A few children swing back and forth between uncontrolled seizures and bad behavior. Even older children who have had seizure surgery may be extra emotional for up to a half year after the operation.
All types of epilepsy can make children prone to behavior problems:
- Complex partial seizures, especially of early onset—hyperactivity, problems in paying attention or controlling temper
- Seizures from the left side—anxiety and frustration due to problems in understanding and expressing ideas
- Seizures from the right side—social difficulties and impulsive behavior from problems in recognizing social signals
- Seizures from the front of the brain—disorganization, acting without regard to the consequences.
[Editor's note: Most of the statements in the paragraph above are based on experience rather than research. They are interesting but may not be true of your child.]
Or are behavior problems caused by how people react to the epilepsy?
Epilepsy and seizures themselves probably have had some effect on your child's behavior. But it is far more likely that most of your child's behavior problems are related to the way you and others have reacted to the diagnosis of epilepsy. Children experience these reactions more than they experience the seizures.
Like many parents, you first may have felt shocked and overwhelmed by the diagnosis. In the initial stages, parents often are fearful and don't want to believe it. Next they start to feel guilty or angry. Then they may enter a period in which they desperately search for a doctor who can stop the frightening attacks. If the seizures do not stop, many parents begin to feel depressed and withdraw from active medical care.
It is natural for you to experience many of these feelings, but you should understand that they have affected your parenting and may be reflected in your child's self-concept. You can help your child most by reaching a stage of acceptance. Then you can work as part of the treatment team to help your child gain seizure control and reach his or her potential.
Of course, your reactions are not the only ones that affect your child. Other people also influence your growing child's emotional development:
- teachers, who may not expect as much from your child as from others
- playmates, who may reject your child because of seizures
- other family members, who may be jealous of the time you spend with that child
How can parents support and effectively discipline their child?
Treating epilepsy means treating the whole child, not just the seizures. Even if medications or surgery cure the seizures, problems with language, learning, and behavior may remain. We emphasize disciplining the child, not the seizures. Parents will often discipline and parent the epilepsy, not the child. They fear that if they stress the child by scolding too much, the child will have a seizure. Don't let the seizures change things. If discipline does precipitate seizures, tell the doctor so that can be worked on. Discipline should be pretty much the same whether your child has epilepsy or diabetes or no health problems at all.
Under-disciplining is one reason a lot of kids either end up eternally dependent or go the opposite way and become quite rebellious. If the parents stop their discipline because of the seizures, the child gets the message "I'm special." The child could even develop non-epileptic seizures later to further control.
Another issue is that parents are prone to see children with epilepsy as having something wrong with them. The parents tend to emphasize the negative: Don't do this, don't do that. I ask the parents what they want the child to do instead and suggest that they work on that. The idea of replacing a bad behavior with a good behavior is also very important.
You may need to learn new parenting approaches and behavior modification techniques. One of the most effective approaches is to deal with little problems before they become major difficulties. The doctor and teacher should be alert for the earliest signs of behavior problems. The school especially should look for possible learning difficulties that may trigger frustration behaviors.
Try to put as much effort into developing what your child CAN do as you put into overcoming the limitations that seizures have created. Encourage your child's doctor and teachers to take the same approach. Instead of seeing your child as a handicapped child with seizures and behavior problems to be overcome, accept the challenge of developing the good qualities of your special child.