S9Supplement: Epilepsy and Quality of Life

Impact of Epilepsy in Children

Joan Austin, D.N.S.

Over the years, our research team has interviewedchildren to learn about their experiences with epilepsyand seizures. In the course of this research, we havegathered narratives from children with epilepsy thatdescribe the impact of seizures on their lives. Thispaper uses some of these descriptions to highlight theconcerns, fears, and perspectives of children withnew-onset seizures or chronic epilepsy, including ex-tended writings from two young women with epi-lepsy: Kristin, a senior in high school who writes tochildren with epilepsy so they do not feel alone, andJanet, a young adult who had epilepsy in childhood.

Children with New-Onset Seizures

Children with new-onset seizures initially havemany concerns. Many children ask why they devel-oped seizures. “Why did it happen to me?” “Why didI get them?” “Why do I have them?” Some childrenattempt to identify specific causes and ask more fo-cused questions. “Is it because of stress?” “Is it be-cause I had a growth spurt?” “Is it because I startedmy periods early?” “Because I got hit on the head?”“Because my mother is an alcoholic?” There are alsomany questions about the nature of seizures. “Why doI jerk?” “What causes me to shake?” “How bad will Ishake the next time?” “What happens in my brainwhen I have a seizure?” Children ask why doctorscannot predict when seizures will occur. “Why can’tyou just tell me when I’m going to have my nextseizure?” “Will it be soon?” “How can I tell when Iwill have one?”

Children also develop a number of fears and somechildren talk openly about their fears. “Will I die dur-ing a seizure?” “If I bite my tongue, will my teeth popout?” “Will I fall and break my neck?” “I’m afraid togo to sleep at night.” “I’m afraid just to be alone.”“Will I grow up to be normal?” “Will I become men-tally ill?” “Will I keep getting sicker?” “I worry aboutbeing different.” “I feel crazy.” “I feel worried.”

They take particular note of other children withepilepsy. “The other kids in the (neurologist’s) waitingroom looked very bad—will I become like them?”They have questions about their diagnostic tests andtreatment. “No one will tell me what the tests are for

or how they went.” “My shots (blood tests) used tobother me and I would scream, but now I do not evencry.” “How does the medicine work?”

Children quickly become concerned with how theirschoolmates and family members will react to them.“It bothers me that people are going to make fun ofme.” “Everyone acts like it is so serious.” “I feel guiltybecause I will worry my mom.” “I don’t want to havea seizure in front of my friends.”

How Children with Chronic Epilepsy Cope

We have conducted numerous interviews with chil-dren with chronic epilepsy to learn how they copewith their epilepsy. In particular, we ask them whatthey did when they were worried or felt bad abouthaving seizures.

Children describe a number of different strategies tocope with their epilepsy. “I talk to a friend.” “I try tobe calm.” “I try to get busy with something.” “I pre-tend I don’t have them.” “I know it is not my fault andtry not to be mad about it.” “I try not to think aboutit.” “My doctor knows how to treat them, so every-thing will be okay.” “I remember that people love meanyway.”

It is interesting to ask children whether anythinggood has come out of having seizures. Most say no,but others are able to see the silver lining. “I get toleave school to go to the doctor.” “After I see thedoctor, I get to go out to eat.” “My friends brought mepresents when I was in the hospital.” “My parents takebetter care of me because I have seizures.” “My broth-ers are nice to me now.”

Writings from Two Young Women with Epilepsy

Kristin. Kristin writes letters about her experienceso that children with epilepsy will not feel alone.

I was diagnosed with epilepsy when I was ten years old. Idon’t remember my first seizure at all, probably because no onereally knows when it was. It all started when a teacher noticedthat I was acting spacey and did not hear directions. I was soscared. I cried at the doctor’s office. From then until the end of

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S10 Supplement: Epilepsy and Quality of Life

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fifth grade, I feared being separated from my mother. I threwtemper tantrums if I could not be with her at all times.

My family doctor talked to me and examined me. I wasreferred to a neurologist and a few days later went for the EEG.I was so scared that I cried, so the tech put an electrode on mymom’s wrist to show me that it didn’t hurt.

The EEG was abnormal so I went to see a neurologist. He toldme all about seizures and epilepsy, and he made me laugh.That was one of the things I remember most, because probablyit was the most positive, happy moment during an otherwisepainful, negative time in my life.

The rest of fifth grade was hard. I was really scared and feltalone. I thought I was the only kid with epilepsy, but I waswrong. The nurse at school arranged for me to meet Ben,another kid with seizures, and we have been friends ever since.

I had a special teacher in the sixth grade. She was the onlyperson I really talked to about my seizures besides my parents.She listened and taught me how to express my feelings onpaper. That’s when I really started writing. It was a way for meto truly begin to deal with and accept my epilepsy, withoutactually having to talk about it. Now, don’t get the wrong idea,my problems and feelings about seizures didn’t go away. It wasmerely a step in the right direction.

Kristin did well into the eighth grade. Her seizureswere controlled. She had friends, and she was begin-ning to be more physically active.

That summer I went to camp and was allowed to walk on thehigh wire thirty feet above the ground. I also could do some-thing called the “zip line.” I was so scared as I climbed the tree.My counselors and the other campers were so wonderful,shouting encouragement and praise. As I slid down the zip lineI screamed, first in fear, but then in exhilaration.

I had accomplished so much. I had won a battle I had foughtfor so long. I had overcome many of my fears and obstacles. Iwas a step closer to fully accepting my epilepsy and it wasgreat.

But things started getting worse for Kristin in herfreshman year of high school. Her seizures increasedand her grades dropped. She hated school. A changein medication helped her seizures, but her sophomoreyear was even worse.

This was my worst year ever. I was at the lowest point in mylife. I was constantly tired and making bad grades. I felt uglyand unattractive. I felt that I had no friends or future and neverwould. On top of that, my seizures weren’t controlled.

I cried a lot and was moody. All I did was sleep—12 to 16hours at a time. When I was awake I was a zombie, not reallyable to understand anything.

Currently, Kristin is doing well. She is looking for-ward to a bright future.

Things have changed a lot for me since that time. I nowrealize that I have an incredible future waiting for me, that I am

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smart, and that people do want to be my friend. Today I am asenior and having a wonderful, yet busy year. I have alsoovercome one of my greatest fears—to have an MRI done. I hadit done, and it was A-OK. I am looking forward to going tocollege next year.

Janet. Janet is my daughter. She is now a youngadult. Recently, I asked her to reflect back on what itwas like growing up with epilepsy. She talked aboutbeing scared by her seizures, the effects of the treat-ment, her neurologist, and the resiliency of children.

I was scared during my seizures. I worried that I might die.They happened at night when I was alone in my room. I thinkthe worst part of having seizures was the lack of control Iexperienced. I would be awakened from my sleep by my sei-zures, and then just have to watch as my left arm and leg jerkeduncontrollably. I would call for my parents and they wouldcome into my room, but there was really nothing they could do.

There were times when I felt like I couldn’t breathe duringmy seizures, which just emphasized how out of control I felt. Iremember trying to regain control of my life. I tried to figureout why or what had caused my seizures.

One day, I was watching TV when the show was interruptedby a special announcement about people who had unknow-ingly been poisoned. I don’t remember the details, but theannouncement ended with the consequences of poisoning, oneof which was having seizures. I hadn’t quite grasped the con-cept of cause and effect yet, and I came to the conclusion thatpoisoning caused all seizures, and that I must have been poi-soned. Because I had seizures in bed, I looked for poison on mypillow, and because the seizures started in my hand, I thoughtthere was poison on my hand.

I began to wash my hands obsessively trying to get rid of thepoison. Of course, what I didn’t know was that my seizureswere not caused from poisoning. But in my 6-year-old mind, Iwas trying to gain control by getting rid of the seizures.

My seizures were treated with phenobarbital, which had a lotof side effects. As a child, I didn’t really know what side effectsmeant. The phenobarbital made me feel like I was living in afog, but I didn’t realize I felt that way because of the medi-cine—I thought it was just me. I’d always been the last one tofinish an exam in school until I went off the medication. Iremember the first time I took a test after I quit taking mymedicine. I was the first one to finish the test, and I wasconvinced I must have skipped some pages or something.Because my seizures started right when I started school, I hadalways assumed I was just slow.

I was confused about going to the neurologist, even when Iwas 15 years old and had been seeing one for years. He stilldidn’t seem like a real doctor to me. We would go into hisoffice, and my mom and I would sit in the chairs in front of thedesk and discuss my treatment. I always thought a doctorshould be someone in a white coat who took my temperatureand listened to my chest—not some guy in a sport coat who satbehind a desk and asked you questions.

I don’t know many people who would say that they had anormal childhood. Although we tend to think of childhood asa carefree time, many children have to cope with chronic ill-nesses, such as epilepsy, asthma, and allergies. Others copewith cancer and serious illnesses, and still others have to deal

S11Supplement: Epilepsy and Quality of Life

with psychological stress associated with divorce, or even childabuse. But, fortunately, children can be extremely brave andresilient when dealing with these problems and can grow up tobe normal adults.

Having epilepsy did affect who I am today—I’m sure ofthat—but so did being in Girl Scouts and the 4H Club, andmoving from Texas to Indiana. I guess what I am trying to sayis that epilepsy influenced who I am today, but it did not defineme.

Conclusions

Our research has shown that the immediate impactof seizures does seem to be primarily negative for

children, but that over time children begin to makepositive adjustments and develop strategies for deal-ing with epilepsy. Kristin’s writings demonstrate ahealthy way that she found to cope with her ownepilepsy that was also beneficial for other childrengoing through similar experiences. Janet, who likemany children with epilepsy outgrew her seizures,views it as one of many life events that had an influ-ence on her development.

The ways in which children learn to accept theirepilepsy, adapt, and move on with their lives canteach us all valuable lessons.

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