Photo of Dr. Elizabeth Thiele
Dr. Elizabeth Thiele

Epilepsy is a common condition and is the most frequently diagnosed neurological disorder afflicting children. Epilepsy, a term describing recurrent seizures, affects approximately 2 percent of the population worldwide—children as well as adults.

Epilepsy is caused by abnormal excitation in a region of a person's brain; the particular region of the brain involved determines what the seizure itself "looks" like. Epilepsy has many causes, and seizures occur in a wide variety of forms. Some children with epilepsy experience a seizure once or twice a year, while others have hundreds of seizures per day. Fortunately, epilepsy can be effectively treated in over half of individuals who develop the disorder. Many children with epilepsy will "outgrow" their epilepsy and eventually will be able to stop taking medication.

The diagnosis of epilepsy has a significant impact on the child and on the family. Children are faced with the unpredictability of the disease and their lack of control over it. They worry about when and where a seizure may happen—in school, playing soccer, or asleep at night—which can cause significant fear and anxiety and may lead to a sense of isolation.

Children with epilepsy also grapple with the fear of how those who observe the seizure will react, easily sensing the concern, anxiety, and fright—as well as lack of understanding—of family and friends. Parents and other family members, in turn, may fear the physical or emotional impact that the seizures have on the child. Often, family dynamics and relationships experience unwanted changes, compounded by a limitation in activities due to the needs of, or concerns about, the child with epilepsy.

Children with epilepsy struggle to learn, struggle to make and keep friends, and struggle to maintain their self-esteem. In order to effectively "treat" a child with epilepsy, all of these issues must be addressed. Even if a child's seizure episodes are effectively controlled, if that child does not understand the epilepsy—or if those around the child do not appreciate how the disorder and its treatments may affect the child's ability to learn and interact with the surrounding world—then that child is "handicapped" by epilepsy.

Jordyn Cook and her family have lived with epilepsy—and with the wide-ranging and ongoing struggles that it entails. Diagnosed in 2000, when she was just three years old, Jordyn has already been through more than most adults can imagine. She has taken more than 10 different epilepsy drugs, sat through countless medical procedures and evaluations, and even underwent surgery that removed part of the right temporal lobe in her brain. And unfortunately, none of this was able to completely stop her seizures.

When I met Jordyn and her family—parents Peter Jr. and Xan Cook, and Jordyn's three brothers (one of whom is her twin, who has no health problems)—I was struck by the bravery of this little girl, and the determination of the people who love her. Not only were they all committed to Jordyn's treatment and progress, they were also passionate about educating others about epilepsy, shedding crucial light and removing the stigma surrounding the disease. The Cook family has made a generous commitment to reach out to other patients and families—as well as to the general public—by establishing the Cook Family Charitable Fund.

The Growing Up with Epilepsy Web site is a collaboration between the MassGeneral Hospital for Children's Pediatric Epilepsy Program and WGBH Educational Foundation, funded by the Cook Family Charitable Fund. Our goal is to provide clear information about epilepsy in childhood, its diagnosis, and its treatment, and to educate site visitors about the disorder's effects on learning, behavior, and family life.

The site contains videos featuring specialists, along with supporting text, explaining the range of symptoms, treatments, and issues affecting learning and behavior in people with epilepsy. The eight family stories presented in the video profiles create a window into the lives of those living with epilepsy. In addition to describing experiences common to most people with epilepsy, each video also illustrates a particular issue that has been important to that family—issues that other families affected by epilepsy are likely to encounter.

We are deeply grateful to these eight children and their families for sharing their personal stories so that others can learn and gain understanding and hope from them.

A pinwheel image was chosen for this site, as it symbolizes the many features of epilepsy in childhood. The design is cheerful and vibrant—as are most children who live with epilepsy. The varied colors of the pinwheel suggest different children, different types of epilepsy, and different treatment options. The spokes of the pinwheel represent the different people needed to work together in supporting the child with epilepsy: parents, teachers, nurses, doctors, and others, on many levels.

A pinwheel needs the power of the wind to make it turn, just as the child with epilepsy needs the understanding and support of his or her environment to thrive in the world.

Jordyn Cook was delighted to go out this Halloween, like any other young girl, dressed as a "pop star." For us, children living with epilepsy are all superstars—and our heroes. These children start each day with the uncertainty of when a seizure may happen, and work very hard each day to learn, participate, have friends ... and just be children.

It is our hope that this site will help increase understanding and awareness of childhood epilepsy, and help these kids to be accepted for who and what they are: children.

Thank you for visiting.

Elizabeth A. Thiele, MD, PhD
Director, Pediatric Epilepsy Program

Back to Top