RECIPE FOR HOPE
Director Jim Abrahams says a controversial diet saved his epileptic son
The disease, says Abrahams, was causing the “slow disintegration of Charlie
(in ’92)
“You have to go with hope, “says Abrahams (at home in Santa Monica
with Charlie).
Babies, Nancy Abrahams well knows, are inexplicable creatures, one minute engaging
you in a round of peek-a-boo, the next minute lost in some deep trance. So when
her son Charlie went limp in her arms a few days before his first birthday in
March 1993, Nancy, 39, didn’t think much of it. Moments later, after all,
he was back playing hide-and-seek amidst the pillows on her bed. “I didn’t
even mention it to my husband,” she says.
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.”
“The ketogenic diet got lost,” says Dr. John M. Freeman (at the Johns
Hopkins Outpatient Center in Baltimore, with dietitian Millicent Kelly and a
child with epilepsy), “because modern technology believes the next drug
will work.”
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 2 _ - 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, “says 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 this 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
of fish, 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 required
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 re-measure it,” says
Nancy. “But now it takes only five minutes to prepare a meal. It’s
much easier than giving him drugs six times a day.”
After wrapping Hot Shots! Part Deux in ’93, Jim (with Charlie Sheen) stopped
working.
Charlie and his parents cheered on Jamie at a basketball game in January.
“They asked if Charlie would die,” says Abrahams of son Joseph and
daughter Jamie.
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 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 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
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