For nine months, Ibrahim, a seven-year-old from Marthandam, had been in the ICU of the Comprehensive Epilepsy Care programme at the Sree Chitra Tirunal Institute for Medical Sciences and Technology here, without regaining consciousness, as recurrent seizures wracked his tiny body.
He was not responding to medications though his vitals remained stable. Ibrahim underwent epilepsy surgery last month.
Since then he has remained seizure-free and is on the way to being weaned off the ventilator.
Ibrahim is one of the lucky ones to have come into the comprehensive epilepsy care programme at SCTIMST early enough where he could be thoroughly investigated and taken in for surgery so that he can grow up to be a normal adult.
Epilepsy is a brain disorder that can be treated through a well-planned care programme. With the help of modern drugs, surgical modalities and psycho-social therapy, almost 80% of those suffering from epilepsy can lead a normal life, free from seizures.
Wide treatment gap
Yet there is a treatment gap of about 50-60% in the case of epilepsy in India. “Delayed referral is a major issue. If we get them young, the treatment outcomes are dramatic. But even in a literate State like Kerala, there exists a treatment gap of 30-35%. The public’s perception of epilepsy affects early treatment, leaving those with epilepsy to struggle with their disabilities and social stigma,” says Sanjeev V. Thomas, Professor of Neurology, who is in charge of the epilepsy care programme
An estimated five million people in the country have active epilepsy. (The prevalence rate in Kerala is put at five per 1,000.)
In about one-third of these patients surgery is an option with excellent prognosis.
Waiting period of a year
SCTIMST is one of the few centres performing this surgery in the country, where annually, at least 50,000 patients are awaiting surgery. Since 1995, SCTIMST has done nearly 2,000 surgeries. The current waiting period for surgery here is one year.
“The goal of surgery is to keep them seizure-free and medicine-free. If children are made seizure-free early in life, their cognitive and psycho-social development improves dramatically and they grow up as independent adults,” Dr. Thomas says.
In children, developmental, metabolic, genetic issues, as well as behavioural and psycho-social issues have to be addressed separately.
Treatment drop-out rates and non-compliance to medication are high among paediatric cases, often because the parents are frustrated and move from one doctor to another or one system of medicine to another.
SCTIMST is currently experimenting if a community model of care, involving early detection and care of children with epilepsy, is possible as a school-based programme.