Seizures makes a child's life a living hell!

With her blonde hair, blue eyes and a scattering of freckles across her nose, Kayla Sterchow looks like a normal 10-year-old girl as she eats with her family at a busy restaurant.

But Kayla's head is aching. She's dizzy. The talking and laughing, glasses clinking and plates piling up are irritating her. Then her younger sister Hayley, 4, spills her drink.

Suddenly, Kayla explodes. She jumps up from her chair and runs through the restaurant. She screams and cries and makes strange noises, unaware of where she is or what she's doing.

Her parents, Tania and Roy, all too familiar with the situation, struggle to restrain their daughter and she kicks and punches them as the rage takes over. Other patrons stop and stare. Their thoughts are obvious: look at those hopeless parents who cannot manage their delinquent child.

Burning with embarrassment, Tania and Roy bundle Kayla, her brothers Andrew, 17, Ashley, 7, and Hayley out of the restaurant and into the car.

The awful experience reinforces the sad fact that taking their eldest daughter anywhere is just too risky.

"We don't go anywhere any more," Tania says. "We've locked ourselves away from the world. Because she looks quite normal, people don't understand there's something wrong with her. We always said if she was in a wheelchair people would be more understanding but instead they look at us like we're the parents from hell."

Kayla suffers from an extreme form of epilepsy. Epilepsy itself is a chronic neurological disorder that affects one in 200 children. It is characterised by seizures which occur when there is a discharge of abnormal electrical activity in the brain cells. In most children, anti-epileptic medication controls their seizures and they live a full and active life. More than half eventually grow out of the condition.

But for children like Kayla, no drugs have been able to stop her suffering between six and 10 seizures a day since she was a toddler.

Rather than the well recognised "tonic clonic" seizures, where a person loses consciousness and starts jerking around, Kayla has "complex partial seizures" in which she goes into a vague, unresponsive or dreamlike state and acts or speaks strangely.

"It's like she snaps and she's a different person," Tania says. "She gets violent and aggressive and starts attacking everybody. There's five holes in the walls of our house and I'm covered in bruises."
These non-convulsive seizures are difficult to recognise and are frequently misinterpreted as tantrums. Epilepsy advocates say that, for many people, coping with the stigma associated with the condition is harder than living with the epilepsy itself.

Carol Ireland, from Epilepsy Action Australia, says negative stereotypes such as people with epilepsy being a danger to others, mean sufferers and their families are often excluded.
At school in the Wollongong suburb of Figtree, Kayla is an outcast. Frequent outbursts of rage at other students and wild mood swings have made the children - and some of their parents - so scared they completely avoid her.

"Generally at school they think she's a nasty kid," Tania says.

Kayla has become distressed at her social isolation.

"I don't like having seizures because when I go to school I get angry sometimes so some people don't like me and won't play with me," she says.

Her neurologist, John Lawson, from the Sydney Children's Hospital at Randwick, says behaviour problems are common in children with severe epilepsy.

After five combinations of medication failed to reduce the seizures, Dr Lawson and Kayla's parents decided to try the last resort - invasive brain surgery.

He says her epilepsy is caused by a hippocampal sclerosis, which is a type of scar on her brain tissue in her left temporal lobe. The scar tissue sends erratic electrical impulses (brainwaves), causing the seizures.

While the surgery carries inherent risks, including the chance of infection and hemorrhaging, doctors and the family - led by Kayla - were desperate.

"I wanted to have the surgery so that I get better and I can do all the things my friends can do," Kayla says. Tania agrees: "She's got no quality of life and we hoped the surgery would make her better." In a four-hour procedure at Sydney Children's Hospital in February, neurosurgeon Mark Dexter shaved a small amount of hair and made an incision across the top of Kayla's head.
"We lifted out a window of bone between eye and ear, then we removed two parts of the temporal lobe; the first is the part scarred by the epilepsy, then, more importantly, the inside part, which is called the hippocampus, where the epilepsy is generated," he says.

Rugby league great Wally Lewis underwent the same surgery last year after suffering a seizure during a sports broadcast. Former Socceroos captain Paul Wade also went under the knife five years ago and no longer suffers fits.

It will be two years before doctors know if Kayla's surgery is a success. On the positive side, she has not suffered a single seizure in the two-and-a-half months since the operation. However, her behaviour has worsened, an outcome Dr Lawson warned may occur. "It's such a traumatic event for the brain - it's like a death in the family - and it takes a long period of adjustment," he says.

Despite an increase in her aggression, school life has become a little easier for Kayla. Time off and the huge scar she is sporting on her head have alerted students and parents to the fact she has a condition that causes her behaviour.

"We're just hoping to get through the next six months," Tania says. "Then we can help her catch up with schoolwork, she can do things her friends are doing and not miss out on life any more."
Epilepsy Awareness Week begins today.

Carol Ireland, from Epilepsy Action Australia, says negative stereotypes such as people with epilepsy being a danger to others, mean sufferers and their families are often excluded.

At school in the Wollongong suburb of Figtree, Kayla is an outcast. Frequent outbursts of rage at other students and wild mood swings have made the children - and some of their parents - so scared they completely avoid her.

"Generally at school they think she's a nasty kid," Tania says.

Kayla has become distressed at her social isolation.

"I don't like having seizures because when I go to school I get angry sometimes so some people don't like me and won't play with me," she says.

Her neurologist, John Lawson, from the Sydney Children's Hospital at Randwick, says behaviour problems are common in children with severe epilepsy.

After five combinations of medication failed to reduce the seizures, Dr Lawson and Kayla's parents decided to try the last resort - invasive brain surgery.

He says her epilepsy is caused by a hippocampal sclerosis, which is a type of scar on her brain tissue in her left temporal lobe. The scar tissue sends erratic electrical impulses (brainwaves), causing the seizures.

While the surgery carries inherent risks, including the chance of infection and hemorrhaging, doctors and the family - led by Kayla - were desperate.

"I wanted to have the surgery so that I get better and I can do all the things my friends can do," Kayla says. Tania agrees: "She's got no quality of life and we hoped the surgery would make her better." In a four-hour procedure at Sydney Children's Hospital in February, neurosurgeon Mark Dexter shaved a small amount of hair and made an incision across the top of Kayla's head.

"We lifted out a window of bone between eye and ear, then we removed two parts of the temporal lobe; the first is the part scarred by the epilepsy, then, more importantly, the inside part, which is called the hippocampus, where the epilepsy is generated," he says.

Rugby league great Wally Lewis underwent the same surgery last year after suffering a seizure during a sports broadcast. Former Socceroos captain Paul Wade also went under the knife five years ago and no longer suffers fits.

It will be two years before doctors know if Kayla's surgery is a success. On the positive side, she has not suffered a single seizure in the two-and-a-half months since the operation. However, her behaviour has worsened, an outcome Dr Lawson warned may occur. "It's such a traumatic event for the brain - it's like a death in the family - and it takes a long period of adjustment," he says.

Despite an increase in her aggression, school life has become a little easier for Kayla. Time off and the huge scar she is sporting on her head have alerted students and parents to the fact she has a condition that causes her behaviour.

"We're just hoping to get through the next six months," Tania says. "Then we can help her catch up with schoolwork, she can do things her friends are doing and not miss out on life any more."