Food for thought

On his plate, Javy Williams of Hanapepe, Kauai, had a simple hamburger patty with no bun, several crowns of broccoli, a slice of cheese and a few packets of mayonnaise.

Williams, 12, ate everything, then downed a small cup of heavy whipping cream.

Across the table at the Shriners Hospitals for Children in Hono­lulu, 22-month-old Hekili Naea of Kapaa, Kauai, was being very good about eating a small plate of red bell peppers, avocado and a hamburger patty, also with no bun.

Javy and Hekili sat down for lunch together Wednesday as the first two children at the local Shriners hospital to test a ketogenic diet, now available as an option for those who suffer from seizure disorders such as epilepsy. The high-fat, low-carbohydrate diet, already offered at more than 200 hospitals worldwide, might help control seizures.

The hospital’s Neurodevelopmental Clinic recently began offering the therapeutic diet as part of a comprehensive program featuring a team of specialists including a neurologist and dietitian. A $58,000 grant from the HMSA Foundation is funding the program.

The ketogenic diet changes the way energy is used in the body. Normally, glucose (sugar) from carbohydrates helps fuel brain function. When carbohydrates are reduced, the liver converts fat into fatty acids and ketone bodies, which pass to the brain and replace glucose as an energy source.

Elevated ketone bodies in the blood, a state known as ketosis, has been shown to reduce the frequency of seizures.

The diet has been around since the 1920s, according to pediatric neurologist Ryan Lee, director of Shriners’ Neurodevelopmental Clinic, but became less popular with the advent of anti-convulsant drugs in the 1940s. Interest in the therapy was renewed in the early 1990s.

"We have known for a long time that fasting or depriving the body of food tends to stop seizures," Lee said. "So over time we have refined that to create a diet, or a form of selecting foods, that would lead the body into a state we call ketosis."

The diet has been effective in reducing the severity and frequency of seizures in at least half of patients studied. Results vary, but some patients have been able to get results, then stop the diet and remain seizure-free. Most children remain on the diet up to three years.

Shriners, which provides care for children up to age 18 with or without insurance and regardless of ability to pay, is recruiting young epilepsy patients interested in trying the ketogenic diet. Lee said the best candidates are those who suffer seizures while under two or more medications, and who would like to come off their medications and try an alternative therapy.

Twenty years ago it worked for then 20-month-old Charlie Abrahams, namesake of The Charlie Foundation for Ketogenic Therapies, a nonprofit group founded in 1994 by Hollywood producer and writer Jim Abrahams. Abrahams’ son Charlie suffered from difficult-to-control epilepsy and started the diet at Johns Hopkins Children’s Center in Baltimore. His seizures stopped, and he was eventually able to return to a normal diet after five years.

At Shriners, participants in the ketogenic diet stay at the hospital for three days to start the program under supervision. They are asked to re­cord everything they eat in a journal and regularly measure the level of ketones in their urine.

The diet, which includes a specific ratio of fats to protein and carbohydrates, requires that all ingredients be weighed on a scale, which is provided by Shriners along with menus.

Lee, who trained at Johns Hopkins University School of Medicine, said improvement in seizure control is usually noted within the first three months of the diet.

HEKILI, whose seizures are the result of a traumatic brain injury a year ago, has been on numerous medications, according to his mother, Fawna Kiefer, who worries of the side effects of the drugs, which include dry mouth, constipation and interrupted sleep cycles.

"I’m very excited there’s an alternative," she said.

Luckily, Hekili is a good eater, willing to consume vegetables.

Javy’s mom, Doris Williams, welcomed the opportunity because she, too, was looking for alternatives to an increased dosage of anti-seizure medications. Williams’ health insurance company, UnitedHealthcare QExA, covered charges for the hospital stay, including transportation.

"I’d already been researching it," she said. "I believe eating is your best medication."

Javy began experiencing epileptic seizures when he was 3 years old and has other conditions, including an intellectual disability and cerebral palsy.

While it might seem counterintuitive, kids on the ketogenic diet are encouraged to eat a high-fat breakfast of bacon, butter and cheese omelets, for example. Snacks include pork rinds and roasted walnuts. For dessert, coconut chia seed pudding.

Rice and potatoes, both high in carbohydrates, are to be avoided.

"There are modified forms of the diet for parents looking for flexibility," said Shriners clinical dietitian Miki Wong.

Alternatives include nut flours, chia seeds and coconut oil.

When Javy celebrates his birthday in December, he can enjoy a ketogenic diet-friendly chocolate cake made with coconut flour and cocoa powder.

Dozens of recipes are available from The Charlie Foundation, which sent trainer Therese O’Flaherty to Shriners for the inaugural lunch with the two Kauai boys. O’Flaherty says recipes popular in Hawaii, including poke with sesame oil, will be added to the database. High-fat hau­pia is also acceptable as part of the diet.

"The good thing is fat tastes really good," Wong said. "That’s the fun part. The hard part is getting them off the dependence on rice, taking the rice away."

The Neurodevelopmental Clinic will be examining whether the ketogenic diet affects other disorders, including autism. Approximately 20 patients with autism are already on a waiting list to try the diet, Lee said.

CORRECTION: Carol Jasper, director of nutrition services at Shriners Hospitals for Children, is holding Hekili Naea in a photo in an earlier version of this story and on page D1 Tuesday’s paper. The caption misidentified her as Kathy Brier.

———

ON THE NET:

» www.charliefoundation.org

» www.shrinershonolulu.org