Recipe for Hope
updated 04/17/1995 AT 01:00 AM EDT
•originally published 04/17/1995 AT 01:00 AM EDT
Days later, it was her husband, 50-year-old producer-director Jim Abrahams—co-creator of the Airplane!, Naked Gun and Hot Shots! movies—who noted a disturbing bit of behavior. He had been playing with Charlie in the backyard of the family's million-dollar Spanish-style home in Santa Monica when suddenly the boy's arms jerked up oddly in the air. Jim went to find Nancy.
"Have you ever seen him do this thing with his arms?" he asked her.
Nancy's throat tightened. She had not—but this, combined with the limp spell, did not seem like normal kid stuff. The Abrahamses immediately took Charlie to a local pediatrician, Dr. William Gurfield. After witnessing a brief seizure in his office, Gurfield sent the Abrahamses to a pediatric neurologist, who conducted various tests and delivered the devastating news: Charlie had Lennox-Gastaut syndrome, a severe form of epilepsy, which, if unchecked, would cause mental retardation. Worse, it was soon surmised, Charlie was part of the 15 percent of the nation's 375,000 children with epilepsy who do not respond to drugs. Months later, after $100,000 worth of tests, drugs and surgery, Jim and Nancy still had found nothing to stop the convulsions—lasting from a few seconds to 45 minutes—that gripped their child up to 100 times a day.
"I remember thinking it was clear that none of us would ever smile again," says Jim, recalling his son's almost constant state of seizure. "We actually believed our child had been given a fate worse than death."
Stooping today to pick up his little boy, who has been seizure-free for 17 months, Jim lets out a sigh of relief. He was wrong—as were all the doctors who believed that drugs, if anything, could help Charlie. "I was raised to believe doctors are healers and that the answers to an illness come in prescriptions," says Abrahams. "And that just isn't true."
After trying nearly all modern medicine had to offer, Jim and Nancy ultimately found an unorthodox—and low-tech—answer: a high-fat, no-sugar diet. But their path to that remedy tested them severely.
The failure of Charlie's anticonvulsant drugs was one of the family's lows. At one point, Charlie's tiny body (he weighed 21 pounds, at the time) was absorbing four drugs at once—and was still racked by seizures. "We would just hold him and wait for something to happen," says Nancy. "It was a vicious cycle of sleepless nights, drugs and worry."
The couple became virtual recluses. Jim stopped working to help his wife at home. "We were lucky," he says. "We didn't have to worry about finances." For months they did little more than take their older children, Joseph, 10, and Jamie, 9, to school and shuttle Charlie to one of the eight doctors they consulted at various times. They tried to give Charlie as normal—or at least as safe—a life as possible. "We padded a room so he wouldn't hurt himself when he would try to walk," says Nancy. "We even put a helmet on his head."
In the late fall, Charlie's primary physician, Dr. Donald Shields, head of pediatric neurology at the UCLA Medical Center, found two cysts in Charlie's brain. Though he could find no direct connection to the seizures, Shields wanted to remove them just in case they were the cause. But the delicate 2½-hour operation proved fruitless. Shields told the Abrahamses that after months of exploring medical and surgical remedies, he saw no ready cure for Charlie. Desperate, the Abrahamses brought a faith healer into their home. "He prayed some sort of gibberish over Charlie, and we just cried," say Jim. Then they took Charlie to a herbalist in Texas, who recommended exorcising modern technology. "He told us to unplug our microwave," says Nancy.
Finally, Jim took the matter into his own hands, doing research in the UCLA Medical Center library. There, reading a 1990 book called Seizures and Epilepsy in Childhood: A Guide for Parents, co-authored by Dr. John M. Freeman, he discovered the ketogenic diet. A folk remedy for epilepsy first given serious medical consideration at the Mayo Clinic in Rochester, Minn., in the 1920s, the diet is based on ketosis, a change in the body's metabolic state in which the body-burns primarily fat, not sugar, for energy.
In his book, Freeman, who since 1969 has used the diet to treat hundreds of children with epilepsy at Johns Hopkins Hospital in Baltimore, claimed a 30 percent success rate in stopping seizures. Jim immediately contacted Charlie's physician, Dr. Shields, who was unenthusiastic. "A lot of people had tried the diet and not had much success," says Shields. "Myself included."
Undeterred, Abrahams called Dr. Freeman at Johns Hopkins, then one of a few institutions besides the Mayo Clinic to administer the diet. A few weeks later Jim, Nancy and Charlie were sitting in Freeman's waiting room. After undergoing a two-day fast to cleanse his system of sugar, Charlie began a meticulously regulated regimen offish, poultry, vegetables and fruit enriched with hearty portions of red meat, heavy cream, butter, olive oil and other high-fat foods. On day three, Charlie's seizures stopped. As with all patients who successfully use the diet, no one knows exactly why. "It's witchcraft," says Dr. Freeman, half in jest.
What experts, including Dr. Freeman and Dr. Shields, do know is that the prescribed quantities and combinations of food must be strictly followed or the diet won't work. That's one reason why the diet is a last resort. "It requires an almost overwhelming time commitment to do it right," says Shields.
"Even a change of toothpaste can throw it off track," says Jim.
"At first I'd measure everything and then Jim would remeasure it," says Nancy. "But now it takes only 5 minutes to prepare a meal. It's much easier than giving him drugs six times a day."
Despite his initial skepticism, Shields has been inspired by Charlie's success. "I said I would reassess what I think about the diet if Charlie responded to it, he says. "And that's what I did." Indeed, Shields has started a ketogenic diet program—with about a 40 percent success rate so far—for patients who do not respond to drugs. "It's important to emphasize that this is not a first line of treatment," Shields says. "As old as it is, we still know more about drugs than we do about this diet."
The Abrahamses have made the diet a crusade; in February of 1994, they founded the Charlie Foundation to Help Cure Pediatric Epilepsy (1-800-FOR-KETO) One of the foundation's goals is to teach doctors about the diet. With its help, 11 clinics around the country now offer ketogenic diet programs.
But the couple's most important mission remains looking after their own little patient. Charlie will remain on the diet for another year. After that, if all is well, he will start eating other foods. Amazingly, he suffered no brain damage. Nancy says he is a normal 3-year-old. "I read him a book and he finishes the sentences," she says. "And he's learned to climb on chairs and things."
Jim has returned to work—but not, for now, to comedy. Instead he is producing a made-for-TV movie based on the true story of another epileptic child who was saved by the ketogenic diet. "It's about a woman taking the medical future of her son into her own hands," he says. "And that is certainly the moral of our story: You have to trust yourself." When the show airs late this year, the family will be gathered around the TV—an exception to the house rule. "At night we never watch TV" says Nancy with a smile. "We just watch Charlie."
KAREN S. SCHNEIDER
JOYCE WAGNER in Los Angeles