The Challenges of Epilepsy for Kids and Teens
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 do parents' goals for their child change after a diagnosis of epilepsy?
I think the parents are often very pessimistic. Their first thoughts are "Will he be able to succeed or even stay in school? Will he ever be able to hold a job? Will it kill him?" They are worrying about functioning, brain damage, or even death.
The doctor, or many times the nurse, can help them start planning ahead. Many times, I will ask the parents "What do you see him doing at 25 years of age?" Their child may be only 2 or 3, but they're already worried about whether he'll live that long, whether he'll be able to go to school, whether he will be dependent. I try to get them to see what the child can do in terms of taking care of himself or herself and in terms of making a living. We try to work together as a team towards these goals.
What challenges does a child with epilepsy face?
I think the main challenge is just to be normal when your parents and your teachers are treating you as if you are different, as if you are fragile. They teach you that if you try to do things, you might have a seizureand if the seizure doesn't harm you, then you are going to be embarrassed.
Children who have epilepsy see it through the eyes of their parents and teachers. A lot of times kids look at epilepsy as their parents' disease, not theirs. The child gets poked, punctured, pounded, and pummeled. Then the doctor turns around and explains everything to the parents, who dispense the meds. So it's not the kid's epilepsy.
Kids experience the reactions of others. But if you look just at them, you'll see that kids with epilepsy tend to see themselves as different. Younger kids think of themselves as special, or too special. By adolescence they often think of themselves as some type of contagious monster.
What kinds of changes happen at different ages?
In infancy there's very much the feeling of "I'm a part of the family." The toddler is discovering independence. In childhood, socializing is very important. In adolescence they re-evaluate what they learned in early childhood.
When children see themselves as fragile or handicapped, they tend to prolong the stage of being dependent. But teenagers frequently become rebellious and don't want to take their pills. That rebellion often comes to a head at about age 14, when the child is moving away from dependency. Many people don't ever go beyond that rebellious stage, unfortunately. I've seen many 44-year-old 14-year-olds. They give me two messages: (1) Why don't you control my seizures? and (2) I'm not going to take those pillsa classic example of being caught between dependency and rebellion.
Teenagers have to face three questions:
When teens with epilepsy think about "Who am I?" the answer depends a lot on what idea their parents gave them. They could have been given the idea that they are handicapped, an "epileptic," or an individual who just happens to have seizures.
Answering the question "Where am I going?" means looking at the future. But teenagers who have been overly restricted don't see the future. They are busy enough trying to survive now.
Surviving now is the point of the "What am I doing here?" question. Kids who are having problems making friends and so forth because of their epilepsy also say "I'm just trying to survive."
How do seizures and fear of seizures affect a child's social interactions?
It varies by age. In first and second grade, as one child put it, a seizure in school is sort of like show and tellit's interesting to everybody. Until their classmates go home, that is. Then their families tell them about how seizures might be harmful to them. The next day, a lot of the kids try to stay away from the child who had the seizure.
For a teenager, a seizure is a big embarrassment. There is nothing worse than having your first seizure on your senior prom night. I can remember one young lady who did. Her comment was that it messes up your gown and it messes up your life. Fortunately, she had a teacher who came out in front of the class the next morning and said that she too had seizures, but they were controlled. She led the whole class in one of the best lessons that ever happened. Afterwards the girl and the teacher both said they benefited from it.
Do seizures affect a child's personality and the kind of person he or she becomes? [Editor's note: Many of the statements in this section are based on experience rather than research studies. They are interesting but may not be true of your child.]
I think they can, especially if there are related problems. For instance, a child with a left-sided seizure disorder is more apt to have language problems. So these kids are more likely to have personality traits that are commonly related to a language problemthings like getting stuck on details (because they are not sure they understood correctly), depending on what others say, being extremely religious, or fantasy thinking.
By comparison, children with seizures on the right side of their brain often have perception problems. They may not see details, letters, or words, and therefore confuse things. Consequently they tend to deny things and rush through their schoolwork. They also don't see details in social language, appearance, facial expression, and such. These kids will blunder right in when the average person would hold back. Kids who are visually impaired have the same problemthey blunder in. One of the things that we need to work on with these kids, especially if they have parietal or temporal seizures, is how to observe how others feel.
One thing to remember, though, is that if the seizures start when the child is very young, language may be pushed to the other side of the brain. Then the differences between the sides may be less than one would expect. But the tendency is still there, especially when the child is under stress
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