Epilepsy can be a scary challenge

Jennifer Davis

Kelly Hamilton was eight days from her due date with her third child when Clare, her oldest, had her first major epileptic seizure.

"It was 3 a.m. or so and she came into our bedroom. She'd been coughing, but she didn't have a fever," Kelly recalls.

"I gave her some PediaCare - this was before they changed all the rules on giving young kids cough medicines - and let her lay down with us in bed for awhile. Since I was a week away from my due date, it wasn't all that comfortable so I took her back to bed. She was still awake so I started rubbing her back. She turned away from me and then I heard her make a strange noise and she started convulsing."

Kelly screamed for her husband, Mark, who tried to hold Clare and keep her from hurting herself during what seemed like an endless seizure. In reality, it was probably 1 1/2 to 2 minutes long - time enough to call the paramedics as the 4-year-old stopped breathing and her lips turned blue.

"That's when I really started to panic, but she soon stopped convulsing and she started to breathe better," Kelly says.

In those few excruciating minutes last September while the Peoria, Ill., couple watched their daughter, helpless, the thought that she could have epilepsy never crossed their minds. Neither of them had it or knew of any family history of it.

Now, nearly a year later, they've learned so much: that epilepsy can strike anyone at any time; that much misinformation still surrounds this disorder; that epilepsy is not, as Kelly once feared, "a death sentence."

Epilepsy and seizures affect more than 3 million Americans, including about 300,000 American school children younger than 14, according to the Epilepsy Foundation of America. It affects children at different ages, and in different ways. For some, it will be a temporary problem, easily controlled with medication and outgrown after a few years. You may never know your neighbor's child even has it.

For others, it may be a lifelong challenge affecting many areas of life - from self-esteem and peer issues to possible learning and attention problems.

A widely held belief in many countries is that a person with epilepsy is seized by a supernatural power or force, hence the name of the disorder. Epilepsy is derived from the Greek word "epilambanein" which means "to seize or attack."

In developing countries, up to three-fourths of those with epilepsy are not treated, often because of economic and social reasons. Here in the U.S., there is less superstition and more treatment options, but that doesn't mean the Hamiltons didn't find hurdles of their own.

First, there was the struggle in pinning down what was wrong with Clare.

"I learned the Internet was a wonderful resource, but it's also a scary, scary place," says Kelly, who finally stopped obsessing over the horror stories she found and now only gets her information from reputable sources like the Epilepsy Foundation.

Acceptance was another obstacle. Kelly believes her husband had an easier time dealing with their daughter's diagnosis.

"It was almost like I was grieving for the normalcy our lives had before. You have all these ideas about the kind of life your child will lead. ..." Kelly trails off. "You just have to go through the stages (of acceptance.)"

Some parents don't, says Connie Milburn, Peoria service coordinator for the Epilepsy Foundation of North/Central Illinois.

"I have a mom, a special education teacher, and she is still, after four years, dealing with the fact that her son is not normal," Milburn says. "She has let a lot of education slip through her fingers because she doesn't want to be seen in public at the support groups, which is sad."

"There is help and support out there," she adds, "but you have to look for it."

Milburn runs a monthly support group open to anyone, but she also groups parents of epileptic children close in age into smaller support groups. Additionally, she helps parents develop individual education plans for their children, working with their teachers.

"About second or third grade, lots of kids are misdiagnosed with ADD or ADHD," says Milburn referring to the attention deficit disorders.

What many teachers think is daydreaming may actually be small seizures called an absence seizure. To others, the child has a glazed look and is staring, usually for just a few seconds. "It's just like the child's brain shuts off. They don't hear anything or see anything. They're receiving no information.

"We all daydream. The difference is when we daydream, we know what we're thinking about."

"Seizures come in patterns. You have to watch for it. Usually they happen in the morning when they're more tired," says Milburn, adding that her own daughter was misdiagnosed in the third grade. "It wasn't until she was 16 and had a shaking seizure, what used to be called a grand mal seizure, that we figured out what was really going on. She was put on medication and has really led a normal life." Her daughter is 22 now.

Central Illinois is lucky, Milburn says, to have a comprehensive epilepsy center at OSF Saint Francis Medical Center. The next closest such facility is in Chicago or St. Louis. And the Hamiltons rave about Dr. Blas Zelaya, their pediatric neurologist, who helped Clare battle through several changes in medication, including some that didn't work and others that caused allergic reactions.

"You have to be patient," says Kelly. "It's not going to be better overnight. You have to have hope."

The monkey bars are off limits, and swimming is something Clare only does when mom or dad is right there with her, but, otherwise, Clare is just like every other 4-year-old, almost 5, planning her birthday with a Cinderella/basketball theme.

"We're still getting used to it," Kelly admits, "But there are times when I'm not afraid. Sometimes, I forget."

Jennifer Davis can be reached at 686-3249 or jdavis@pjstar.com.

Frequently asked questions: Epilepsy

What is it? Epilepsy is a neurological disorder that, from time to time, causes brief disturbances in the brain’s normal electrical functions. This upset may affect a person’s consciousness, bodily movements or sensations for a short time. Epilepsy is one of the oldest conditions known to mankind. It is defined by two or more unprovoked seizures.

What causes it? Epilepsy is never contagious, but in 7 out of every 10 people, no cause can be found. In those cases, the theory commonly accepted is that it is the result of an imbalance of certain chemicals in the brain, especially chemical messengers known as transmitters.

The cause may also be linked to a head injury or lack of oxygen during birth. Other causes include: brain tumors, genetic conditions (such as tuberous sclerosis), lead poisoning, infections like meningitis or encephalitis or problems in brain development before birth.

Who gets it? Epilepsy is often thought of as a condition of childhood, but it can develop at any time of life. Epilepsy knows no age, racial, sexual or geographic boundaries. In other words, anyone can get it.

About 200,000 new cases of epilepsy are diagnosed each year. Prevalence tends to increase with age, and one period of relatively high incidence of onset is after the age of 65. At any one point in time, 50 million people have epilepsy.

Source: The Epilepsy Foundation and World Health Organization

What to do during a seizure

- Stay calm

- Do not put anything in the person’s mouth

- Do not restrain the person

- Do not call an ambulance (unless the jerking continues for more than 5 to 10 minutes by a clock, not your estimate)

- Do try to lay the person on their side

- Do put something soft under their head

- Do loosen tight clothing around their neck

- Do remove sharp objects (tables, chairs) from the immediate area

After the seizure

- Do stay with them until awake and alert

- Comfort and reassure

- Allow them to go back to activities if OK

Source: "Seizures and Epilepsy in Childhood: A Guide" by John M. Freeman, M.D.; Eileen P. G. Vining, M.D. and Diana J. Pillas.

Types of seizures

People can suffer from just one or several types of seizures, some of which are listed below:

- Absence seizure: Starts suddenly, without warning, and lasts just seconds so they are often missed or dismissed as daydreaming. The child has a glazed look. Though the body is functioning normally, the mind is basically shut off.

- Myoclonic seizure: This seizure involves abrupt jerks of muscle groups. True myoclonic seizures can be dangerous because they are often only one manifestation of a mixed seizure disorder. Most people experience a startle response sometimes while falling asleep. Those are not seizures.

- Atonic seizure: Unlike myoclonic seizures which involve jerking or muscle spasms, these seizures cause parts of the body to go limp.

- Tonic-clonic seizure: Formerly called grand mal, this is the type of seizure most people think of with epilepsy. The most frightening type to observe, they are also the most common in children. Typically, the eyes roll back in the head, the body stiffens and shakes and it is difficult for them to breathe. Saliva may cause a gurgling sound, which causes people to mistakenly think they have swallowed their tongue. Do not stick something in their mouth.

Source: "Seizures and Epilepsy in Childhood: A Guide" by John M. Freeman, M.D.; Eileen P. G. Vining, M.D. and Diana J. Pillas.