New diet to control seizures seems to really work: High fat, low carbs

Without hesitation, Cathy Holt can tell you how long it has been since Noah's latest seizure.
The Lafayette mother keeps a running total. Her blond, blue-eyed 4-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 6 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.

But 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," said Karen Amorde-Spalding, clinical nutrition manager at Children's Hospital Oakland. "It comes with its own set of risks and complications."

The risks include serious constipation, kidney stones, gallstones and pancreatitis.

But 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, said. "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-wracking 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.

The experience has bonded the two Lafayette couples -- Cathy and Bryan Holt and John and Kirstin Cortessis, who were once strangers. They now understand one another in a way few others can.

"Kirstin has become one of my dearest, closest friends," Cathy Holt said.

Niko and Noah are being treated at Children's Hospital Oakland.

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, said Amorde-Spalding of Children's Hospital Oakland.

The children are placed on a strict diet with about 90 percent 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."

The regimen bears some similarities to the Atkins diet, which also puts people in a fat-burning state, but the ketogenic diet is much more controlled.

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.

To start the diet, children often spend three days carefully monitored in a hospital as they switch into a fat-burning stage.

The diet seems to work best in young children, said 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 said.

It may be that the diet changes some biochemical pathways, resulting in improvements for some children, said Dr. Joseph Sullivan, director of the pediatric epilepsy center at UC San Francisco.
"As a result, other chemicals are increased that are known to have anti-seizure effects," he said. "But it's not well understood."

Kaiser Permanente started its program 15 years ago. Among 300 Northern California children it put on the diet, about 20 percent have become seizure-free, and 75 percent to 95 percent have had some improvement.

"It doesn't work for everybody, so it is not a panacea," said Dr. Calvin Wheeler, Kaiser subchief of pediatric neurology in southern Alameda County. "It is not a first-line treatment for seizures."

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.

They also had to make sure well-meaning relatives or neighbors did not slip their child a cookie or piece of cake, which could prompt another seizure.

But the families say the diet has been remarkable and the boys have adapted to the restrictions.
Noah "prays for no seizures," Cathy Holt said 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 said.

Reach Sandy Kleffman at 925-943-8249 or skleffman@bayareanewsgroup.com.