Fat chance for sick boy

PUBLISHED : Wednesday, 07 May, 1997, 12:00am
UPDATED : Wednesday, 07 May, 1997, 12:00am

The boy with an amazing head of thick, curly hair smiles heartily as his mother pats his tummy. 'He is a lively boy,' said Debra Painter, 'and seems to be in a very good mood these days.' Words like 'smile' and 'lively' are strange descriptions for four-year-old Ian. Born severely brain-damaged, he is mentally and physically retarded. The child, whom Mrs Painter adopted in the United States, can hardly swallow and has to be force-fed by a tube attached to his stomach. He also used to suffer four major seizures and numerous minor ones daily.

But Mrs Painter observes the boy has undergone heartening changes. The key to his apparent improvement, she said, could be a special diet with heavy doses of fat, which is helping a growing number of children with severe epilepsy in the United States.

Dubbed the ketogenic diet, the 70-year-old treatment for epilepsy has returned to the limelight after being featured in a made-for-television movie starring Meryl Streep early this year.

The movie, First Do No Harm, is produced and directed by Jim Abrahams, whose other works include Airplane and Naked Gun. Abrahams went through a personal struggle when his now five-year-old son Charlie became stricken with epilepsy. He put his son, who had up to 100 seizures a day, on a special diet under close medical supervision, and the boy responded so well that he was able to stop all medication.

Developed in the late 1920s after a New York paediatrician observed that three patients who fasted with a faith healer temporarily stopped having seizures, the ketogenic diet is not limited to children who are tube-fed. Children old enough or capable of eating are given fatty foods such as butter, heavy cream, bacon, eggs and mayonnaise.

The menu is strictly controlled, with 70 to 90 per cent of calories from fat and only very limited amounts of carbohydrates. The idea is to trick the body into believing it is starving by depriving the body of glucose, so it begins breaking down fat cells for energy. Ketone bodies - breakdown products of the contents of fat cells - serve as food for starving cells. Researchers have noticed that when the blood's ketone levels are high, seizures are controlled, although why this diet works successfully in about half the children who start it, is not understood.

Until the 50s, the diet was used for children whose seizures failed to respond to the limited amount of anti-convulsant drugs then available. Its use declined sharply with the development of new medication.

More than two years since the Abrahamses were introduced to the diet at the Johns Hopkins Medical Institution in Baltimore, and the Charlie Foundation formed by the grateful parents to reignite interest in the ketogenic diet, Mrs Painter is hoping the same miracle will work on Ian.

'I heard about the diet in the United States,' said Mrs Painter at her Tsim Sha Tsui home. 'I was working full-time then and the diet required quite a lot of work so we didn't consider it.' Her interest in it was rekindled by Professor Virginia Wong, chief of child neurology at the University of Hong Kong. 'Professor Wong suggested we tried it. I want to wean Ian off the epileptic drugs. They seemed to make him very irritable. He would scream and cry for hours at night. Maybe we started him on too high a dose,' she said.

'Since the diet he has done a lot more with his hands, such as holding and gripping. I think he is much more alert. He seems to be getting back some of his motor skills,' said Mrs Painter.

As Ian is still on epileptic drugs, albeit lower doses, it is too early to say if his improvement has been solely due to the special diet, but Professor Wong said that the child was responding well.

Diagnosed with infantile spasm, Ian has had no seizures since he went on the diet in January. Six of Professor Wong's patients have gone on the diet, with varying results. 'Some are doing well, others are not so good,' she said. 'At the moment, we are only recommending the diet to children with intractable, difficult-to-control epilepsy,' she said.

The diet is considered mainstream medicine at the University of Washington children's hospital for those with severe epilepsy who don't respond to anti-convulsant drugs. There it is reported that up to three quarters of children have fewer or no seizures once they go on the diet. Other big medical centres, including Johns Hopkins, are trying the diet on adults with difficult-to-control epilepsy.

Children who are on the diet will have to be sent to hospital initially so that their bodies will adjust to the new regimen. Side effects, such as the development of kidney stones, dehydration and anaemia, have been recorded overseas.

According to Professor Wong, children don't have to remain on the diet forever. The theory is if it works, it 'resets' the brain after about two years and seizures will no longer be a problem.

Professor Wong said that she would not recommend the diet for children whose seizures could be controlled by drugs. And children old enough to cheat may also create problems for doctors.

Some of the diet's recommended menus, such as peanut butter, butter and apple sauce mixed together with a small helping of cream do not sound too appetising. Parents also need to be co-operative and committed. Attention must be paid to the carbohydrate content of all food, including cough syrups, antibiotics, daily vitamins and even toothpaste, or the children's delicately balanced metabolism can be harmed.

'The diet is strict. A child will defeat the purpose of the diet if he cheats and has a candy bar or dim sum,' she said.

Mrs Painter said: 'The diet is easier for us because Ian is being tube-fed and his food can be easily prepared.

'In about four months, when he is taken off all drugs, we will know whether the diet is working for him,' she said.