Diet Promise for Epileptic Children
The Lafayette, Calif., mother keeps a running total. Her blond, blue-eyed four-year-old has been seizure-free for 40 weeks.
That is a life-altering change for Noah, who had been averaging a seizure a week since he was six months old. The longest one lasted three hours. Many ended in a hospital emergency room.
Noah tried state-of-the-art medications to control his epilepsy, without success.
A low-tech approach transformed the boy's life -- a strict high-fat, low-carbohydrate diet that defies all good-nutrition recommendations.
Known as the ketogenic diet, it has been around since biblical times and has gone in and out of favor.
Instead of fruits and vegetables, Noah's meals often include heavy cream, bacon and butter laced with cinnamon.
Why and how the diet works remains a mystery.
However, Children's Hospital Oakland, Kaiser Permanente, the Lucile Packard Children's Hospital at Stanford and other institutions have put scores of epileptic children on the diet, with varying degrees of success.
Experts stress that the diet can have side effects and should be attempted only under strict medical supervision. Most recommend it only for children with uncontrolled epilepsy who have tried several drugs that failed to reduce their seizures.
"We always want to make it clear to families that we don't see this as a more holistic approach to epilepsy care," says Karen Amorde-Spalding, clinical nutrition manager at Children's Hospital in Oakland, Calif. "It comes with its own set of risks and complications."
The risks include serious constipation, kidney stones, gallstones and pancreatitis.
However, for some who have tried nearly everything else with no luck, the diet can have a dramatic effect.
A little more than a mile from the Holts, the Cortessis family shares a similar success story.
Five-year-old Niko used to have as many as 25 seizures a day. Sometimes he would have staring spells. At other times, he would suddenly faint, dropping and hitting his head.
His family tried at least five medications, but none stopped the seizures, and they did not like the side effects.
"He was a zombie," his father, John Cortessis, says. "He retrogressed in his language skills, his social skills."
Now, Niko, who has been on the ketogenic diet for nearly two years, has been seizure-free since April 7, 2006.
His parents have just begun the nerve-racking process of weaning him off the diet, fearful that the seizures will return. Health experts prefer that children not remain on the diet for much longer than two years.
For many children, the seizures will have halted permanently. For others, the seizures return, and experts will continue searching for ways to help them.
How it Works
The ketogenic diet essentially puts children in a starvation mode.
Normally, the body burns carbohydrates for energy. Without carbohydrates, it starts burning fat.
The liver then produces ketone bodies, which circulate through the body, including the brain, and become concentrated in the blood, says Amorde-Spalding of Children's Hospital Oakland.
The children are placed on a strict diet with about 90% of their total calories coming from fat.
Their urine is tested regularly to ensure that it is concentrated with ketone bodies, indicating they remain in a fat-burning stage.
The Bible mentions people fasting to end their fits, which are believed to have been epileptic seizures.
The current ketogenic diet was developed in the 1920s to treat epilepsy but began going out of favor in the 1940s as anti-epileptic drugs became available.
The diet catapulted back into popularity in 1994 when a movie executive who had a child with uncontrolled epilepsy took him to Johns Hopkins medical center. There, a ketogenic diet halted his seizures.
His father promoted the treatment and produced a 1997 made-for-television movie starring Meryl Streep, First Do No Harm.
Families must weigh each bit of food and calculate the proper proportion of fat to carbohydrates. Dietitians such as Amorde-Spalding develop plans to ensure that young people receive enough calories to grow properly.
The diet seems to work best in young children, says Dr. Dan Birnbaum, head of neurology at Children's Hospital Oakland.
"It's hard to know whether the diet cures the epilepsy or just stops it so the brain can mature and get beyond the problem," he says.
The diet can put families to the test. Both the Holts and Cortessises locked their refrigerators and pantries to keep their sons from eating prohibited foods.
However, the families say the diet has been remarkable and the boys have adapted to the restrictions.
Noah "prays for no seizures," Cathy Holt says.
The Cortessises are slowly increasing the percentage of carbohydrates in Niko's diet, hoping the seizures will not return.
"Once you've been there, you don't want to go back," Niko's father says.
From the March 31, 2008, Prepared Foods e-Flash