Dr. Freeman, who is writing a book about the ketogenic diet, says he is designing a trial and plans to seek a grant to conduct it.
But based on his more than 20 years of experience with the diet, Dr. Freeman says there is already reason to believe it works.
Twenty-five of the 39 children who were helped by Hopkins' diet were also able to reduce or eliminate their use of drugs.
"These children are calmer, they're less hyperactive, they can pay attention better, relate better and learn better when we get rid of all these poisons we use to control seizures," he says. "And TC they're all poisons."
Sylvia Herrity, now 2 1/2 , seemed to suffer almost as much from her medication as from her epileptic seizures.
In February 1991, the Springfield, Va., girl stopped breathing for more than six minutes before she was discovered, a near-victim of Sudden Infant Death Syndrome. Coached by paramedics over the telephone, her baby sitter revived the 2-month-old infant with mouth-to-mouth resuscitation.
But Sylvia had been starved of oxygen. She was left blind and retarded. Within an hour of arriving at the hospital, her seizures erupted -- massive episodes that eventually came as often as every 15 seconds.
"They put her on all kinds of medications, tried all kinds of things," says Sylvia's mother, Mary Herrity, 31. For the first few weeks, drugs seemed to control the seizures. "Then they started back up and they continued to get worse and worse," Mrs. Herrity said.
Sylvia took as many as 10 drugs at once, one group to control her seizures and a second group to block the side effects of the first.
"She was on so many medications at the same time that her development completely stopped," Mrs. Herrity says. "She was catatonic, she was like in a coma. She couldn't laugh or cry. She just lay there."
She was so listless that she couldn't swallow or clear her throat. Fluid began draining into her lungs. Her breathing became labored. She was fighting infections. Meals became so laborious, doctors inserted a feeding tube in her stomach.
Mary and her husband, Timothy, 36, an elevator mechanic, asked about the ketogenic diet. Their doctor doubted it would work. They took Sylvia to see Dr. Freeman, who suggested the diet might help Sylvia's seizures, "but it won't help much else."
A changed child
Soon after Sylvia began the diet, she was weaned from her medicines, one by one. As she shook off the effects of the drugs, the child changed. "All of a sudden she started looking around and stuff," Mrs. Herrity says. "She looked like she was aware of everything. It was unbelieveable. She started to cry. She laughed a little."
Today, the blond-haired child is eating by mouth. Her parents videotaped her giggling while someone squeezes a toy next to her ear. She seems to enjoy classical music and is struggling to crawl.
It took six months on the diet before all of her seizures stopped. But she has not had a major episode since September.
"We were told that half of her brain was dead, the half toward the back," her mother says. "She's cortically blind. But her hearing is real good. She does a lot of smiling, a lot of laughing. She rolls around on the floor. She says 'Momma,' and 'Da-da,' and 'bye-bye.'
"She does a whole lot of things we were told she would never do. Even just the little things she does is just like a miracle for us."
Hopkins neurologists are not sure why the ketogenic diet seems to work better for their patients than it does elsewhere.
Dr. Freeman has several theories. Most physicians, he suspects, use a version of the diet invented in the 1970s that replaces much of the natural fat with a substance called medium-chain triglyceride oil.
Patients using the oil as an additive can eat more calories a day. At Hopkins, though, physicians say they have had little luck with the revised diet because, they say, the oil has a foul taste and can cause nausea and diarrhea.
Dr. Gregory Holmes, associate professor of neurology at Harvard Medical School and head of the epilepsy program at Boston's Children's Hospital, says he has had problems with the oil-based diet and plans to switch to a version similar to Hopkins.
A complex treatment
Dr. Freeman also says many doctors and dietitians may not have the time to supervise the treatment.
A girl from Puerto Rico, who was seizure-free after six months on the diet, suddenly relapsed. Mrs. Kelly found she was eating seven Macadamia nuts a day, not the three stipulated. When the girl stopped eating the extra nuts, her seizures stopped.
Another time, Dr. Freeman forgot to prescribe supplemental vitamins for a child. "It's the only case of beriberi I've ever seen," he says, referring to a rare disease caused by a shortage of vitamin B-1. The child was rapidly cured.
Mrs. Kelly and the father of a patient are collaborating to make the diet easier to follow.
