Medication and community support vital for epilepsy sufferers

JAKARTA (JP): Rejection is among the forms of bitter treatment that people with epilepsy often suffer at the hands of ill- informed family and community members who think the disorder is contagious.

Tonny (not his real name) was diagnosed for epilepsy, known locally as ayan, when he was a toddler. The boy achieved poor grades at school and was scolded and isolated by other children and adults in the neighborhood.

Following the completion of several years of medication, Tonny was declared able to live a normal life with no signs of a relapse. But the teasing and jeering continued, especially when schoolmates found out that he once suffered from epilepsy.

Depressed and feeling he could no longer take it, Tonny took his own life.

A child neurologist at Cipto Mangunkusumo General Hospital (RSCM) in Jakarta, Hardiono D. Pusponegoro pointed out recently that public fear and the avoidance of people with epilepsy is groundless.

"This disorder isn't contagious or inherited and with proper medication, most children with epilepsy can be cured and live normally," he told a media briefing, organized by the New Jersey- based company, Janssen Pharmaceutical.

Epilepsy is a disorder marked by strong and sudden electric currents that disturb the brain's rhythm. This can happen as a result of a brain-damaging accident, a tumor, a stroke, congenital defects and infections that affect the brain, such as meningitis, enchepalitic.

"Electric waves in the brain enable people to walk, talk and perform daily activities. Paralyzed people usually have low electricity currents in their brain but in cases of epilepsy, a sudden and very strong current passes through the brain several times causing disruption to the brain's rhythm," he said.

"The attack can also be triggered by a number of causes such as lack of sleep or flashing lights, which may disturb brain waves in epilepsy sufferers," he said.

During epileptic fits children make strange unconscious movements like munching, muscle spasms and suffer blackouts.

"People around these children may not notice that the unusual behavior is caused by epilepsy," Hardiono said.

The parts of the body which go into spasm during a fit are determined by the affected parts of the brain. But if there are several parts of the brain that are affected, epileptic people may experience spasms in various body parts.

In mild cases, an attack lasts for less than 30 seconds but in serious cases, it can last for as long as 30 minutes, which can create more brain damage and lead to mental retardation.

"When parents notice their children jerking or acting unusually or see their babies make sudden movements -- like reaching out their hands several times -- they should consult a doctor immediately," Hardiono cautioned.

He added that children with epilepsy usually perform poorly in school due to recurrent attacks and warned parents that these children should not be left alone, especially when they are involved in activities that may expose them to danger.

"Parents or other adults should be there to watch children with epilepsy if they are cycling in the street or swimming," Hardiono said.

There are some 200 new epilepsy cases annually diagnosed at RSCM. These children are aged between five and 12 years old. After two or three years of treatment, 80 percent of these children can live normally without relapse, while the rest need to take medication for the rest of their lives.

Doctors may prescribe cheap generic drugs, like phenobarbital, carbamazepine and phenytoin or non-generic ones like topiramate, clobazam, clonazepam, nitrazepam, among others. Some of these drugs are used to restore the normal flow of brain waves.

"Drug therapy should be taken continuously. This is important. And never stop taking them regularly as this can cause a turbulent epileptic fit," he warned.

For a small percentage of intractable epilepsy sufferers, surgery may be required to remove the affected parts of the brain to stave off seizures.

However, he said, parents should not panic when their children jerk or spasm, because one-off seizures do not necessarily indicate epilepsy. (lup)