The Ketogenic Diet
In my book, Honest Medicine: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases, I tell the dramatic stories of four treatments that could help save healthcare. As the book’s subtitle states, they are all effective, time-tested, and inexpensive—and they are all used to treat life-threatening diseases. This is timely, as today many doctors prescribe toxic and sometimes ineffective treatments that are so expensive they could bankrupt the healthcare system.
One of the treatments I talk about in Honest Medicine is the ketogenic diet. The story behind the rebirth of the ketogenic diet is very touching. It started thanks to one father’s crusade to stop his baby son Charlie’s almost nonstop seizures, and then to aid other frustrated parents whose children have intractable epilepsy. That man is Jim Abrahams, and his nonprofit organization is The Charlie Foundation to Help Cure Pediatric Epilepsy. Through this organization, Jim has introduced the diet to thousands, if not millions, of parents throughout the world.
This is his story.
In 1994, Abrahams was a very successful Hollywood film writer/director/producer who worked on comedies like Airplane and Hot Shots. These were very funny movies, but, at the same time, something was happening in his personal life that was anything but funny. His son Charlie was diagnosed with a severe form of epilepsy—some days he had over 100 seizures. He continued to deteriorate despite numerous combinations of drugs and even one brain surgery. As Abrahams says, “Many days our home was filled with tears.”
Finally, Abrahams did his own research and—to his surprise—found a diet that had been effective in stopping seizures in children like Charlie for over 70 years at some very prestigious institutions. That diet was the ketogenic diet. But of all the doctors who had examined Charlie, not one had told him about this diet. When Abrahams showed them articles about the diet, they told him not to try it, that it wouldn’t work. Finally, against doctors’ advice, he brought then 20-month-old Charlie to Johns Hopkins—one of the hospitals most adept at administering the diet—to begin the process.
Within 48 hours, Charlie’s seizures were gone.
Abrahams and his wife Nancy couldn’t believe it. At first, he was delighted. But then he became angry. “Why did it take us so long to find this diet? Why aren’t doctors telling other parents about it?” he asked.
He vowed to spend a major portion of the rest of his life spreading the word about the ketogenic diet. He wanted to save other parents from the same unnecessary heartache he and his family had endured. Thanks to the Abrahams and The Charlie Foundation—and Beth Zupec-Kania, RD, CD, the dietitian working with the Charlie Foundation to teach hospital staffs throughout the world about the diet—tens of thousands of children are seizure-free today.
History of the ketogenic diet
According to epilepsy.com, “The ketogenic diet is a special high-fat, low-carbohydrate diet that helps to control seizures in some people with epilepsy. It is prescribed by a physician and carefully monitored by a dietitian.”
This diet was first developed for the treatment of epilepsy at the Mayo Clinic in the 1920s and went on to be championed at Johns Hopkins in Baltimore. It cured tens of thousands of children of their seizures for over 90 years at Johns Hopkins and other prominent medical institutions. However, in the 1940s, with the advent of antiseizure medications, its use declined considerably.
Today many hospitals around the world use the ketogenic diet to treat children with epilepsy. But still the mainstream medical community prefers to use antiseizure drugs rather than the diet. Many parents are upset about this. They think the diet should be the first line of defense against their children’s seizures—and when one remembers the Hippocratic Oath and its admonition to “First, do no harm,” it’s hard to disagree. (In 1997, Abrahams directed a made-for- television movie, which he titled First Do No Harm. It starred Meryl Streep as the mother of a child whose severe epilepsy was controlled by the ketogenic diet. But before this mom was able to get the diet for her son, she had to fight his doctors. Like Charlie’s doctors, they preferred drugs and surgery.)
In addition to being the oldest of the four treatments I feature in my book, the ketogenic diet is also the only one that has held a respected place in conventional medicine. In fact, before the advent of the newer anticonvulsant medications, the diet was one of the very few treatments known to work on seizures. There were a few medications, too: potassium bromide, developed in the late 19th and early 20th centuries, and Phenobarbital, which came on the market in 1912.
Dilantin was discovered in 1938. After that, there was a huge emphasis on discovering other anticonvulsants that would be equally effective. In the 1940s, the use of the diet declined and became obsolete in most hospitals. At Johns Hopkins, Samuel Livingston, MD, was a strong defender of the diet. He continued to treat 20 to 25 patients a year from 1937 until his retirement in 1973. After Dr. Livingston retired, the numbers declined considerably—until Jim Abrahams brought Charlie there to be treated. Then everything changed.
The idea that there is a relationship between food and seizures has been around for a very long time. The Hippocratic Corpus—a collection of 60 ancient Greek medical texts from around 400 BC—proposed that dietary therapy was a sound treatment for epilepsy. In the 1920s, the Mayo
Clinic Bulletin gave an account saying “Interest in the treatment of essential epilepsy has been again aroused by the favorable results of prolonged fasting reported from the Presbyterian Hospital in New York.”
Science behind the ketogenic diet
Since a person cannot fast indefinitely, doctors proposed a very high-fat, low-carb diet that could mimic fasting in the body because it forces the body to burn fat, rather than sugar, for energy. In the 1920s, Russell Wilder, MD, PhD, of Mayo named it the “ketogenic diet” because this kind of diet produces a substance called ketones, and a state called ketosis.
The specific mechanisms of the ketogenic diet remain undefined, though there is an enormous effort in the scientific community to figure that out.
Normally we burn glucose for energy, and we get that glucose from sugar and carbohydrates. In the absence of glucose, we burn fat. When one fasts, one burns his or her own body fat. Doctors found that a high-fat diet with no sugar, limited carbohydrates, and just enough protein to grow on would force the body to burn fat for energy—similar to fasting. The byproduct of burning fat is the production of ketone bodies. The thought is that a combination of reduced blood sugar and increased ketone bodies has a neuroprotective quality and inhibits or suppresses seizures.
John Freeman, MD, the physician who ran the ketogenic diet program at Johns Hopkins for many years, puts it this way in an article titled “Epilepsy’s Big Fat Answer,” in the February 2013 issue of Cerebrum:
The hallmark feature of the diet is the production of ketones (beta-hydroxybutyrate, or BOHB), the residues left when fats are burned in the absence of sufficient glucose. Glucose is an important source of the brain’s energy, but, contrary to popular belief, it is not the only potential source. Ketones are, in fact, a more efficient energy source for the brain and, for unknown reasons, make the ketogenic diet—high in fat, low in carbohydrates—more effective than current anticonvulsant medications in curbing difficult-to- control seizures.
Other parents have also experienced remarkable success by putting their children on the diet. Emma Williams, mother of Matthew Williams, recounts how she begged her doctors in the United Kingdom to let her try the diet when Matthew was two years old, only to be turned down—even mocked. By the time she got their “permission” to try it, six years later, Matthew was already severely brain injured and physically disabled as a result of years of seizures as well as side effects from the medications he’d been taking. In 2004, Emma founded Matthew’s Friends—the UK sister organization to The Charlie Foundation—to educate parents who want to try the diet, so that they won’t have to go through what she and so many other parents have gone through.
Another parent, Jean McCawley, shares an equally moving story of her fight to get the ketogenic diet for her then-infant daughter, Julie. She succeeded after a year of trying. Unfortunately, by that time, Julie had been literally poisoned to near-death by the antiseizure medication Phenobarbital. The diet would have been a far better choice.
Neither Emma nor Jean was offered the diet: both had to fight for it. With the diet, both Matthew and Julie improved immeasurably and almost instantaneously. Unfortunately, both children, now nearly grown, have permanent disabilities resulting from both their pre-diet seizures and medications.
Two longtime ketogenic dietitians continue to champion the diet today: Millicent (Milly) Kelly, who was at Hopkins from 1948 to 1998, and Beth Zupec-Kania, who has worked with the diet from 1993 to the present. Zupec-Kania developed the ketogenic diet program at Children’s Hospital of Wisconsin (CHW) in 1993 and began working with The Charlie Foundation in 2006. She currently serves in two capacities: as director of programs for The Charlie Foundation and as a part-time employee at CHW, providing backup to the primary ketogenic dietitian.
Cost of the ketogenic diet
The ketogenic diet costs significantly less than the majority of antiseizure medications. Average oral anticonvulsant medication can cost anywhere from $14 to $866 a month. At the other end of the spectrum is ACTH, an injectable steroid used—until quite recently—to control infantile spasms, at a cost of approximately $240,000 a month. Many of these antiseizure medications have to be taken for the rest of the child’s life. The ketogenic diet is different in that children usually only need to be on it for about two years. After that, most can eat a regular diet and still maintain seizure control with less medication or none at all. Abrahams estimates that Charlie’s food while he was on the diet cost no more or less than the food for the other members of his family.
Because hospitalization is required at first to start a child on the diet, the cost of administering the diet is greatest in the beginning. It is important that the diet be started under medical supervision. Foods must be prepared appropriately and measured carefully to ensure the correct proportion of fat, carbohydrate, and protein.
The dietitian gives the parents the prescribed diet, and it is adjusted at various times throughout the child’s life—during times of growth, for instance, as well as during times of illness. So parents will need the support of the dietitian at these times as well. The diet works best when it is strictly adhered to.
The ketogenic diet has been found to improve 67 percent of the thousands of children with epilepsy who have had access to it since the 1920s. When appropriately supervised, its adverse effects are minimal, and the positive effects—in addition to improved seizure control and even a cure for epilepsy—include increased cognitive abilities and improved disposition and development. Seventy percent of children with seizures control those seizures with medicine, but many of those come with debilitating side effects. Brain surgery, when appropriate, has tremendous costs, significant risk, and no guarantee of success. As my chapter contributors show in Honest Medicine, early intervention with the ketogenic diet is essential, because seizures and medicine can cause irreparable damage.
Julia Schopick is a public relations consultant, advocate for medical reform, and the author of Honest Medicine. For more information on epilepsy and the ketogenic diet, please visit charliefoundation.org.
Books on the Ketogenic Diet
Today there are many books that were not around when Jim and Nancy Abrahams first began implementing the ketogenic diet for Charlie. “I would have given my arm to have even one of these books when Charlie was little. Resources like these just didn’t exist,” said Abrahams.
Here are a few that Abrahams recommends to parents:
>> Dietary Treatment of Epilepsy: Practical Implementation of Ketogenic Therapy by Elizabeth Neal
>> Fighting Back with Fat: A Parent’s Guide to Battling Epilepsy through the Ketogenic Diet and Modified Atkins Diet by Erin Whitmer and Jeanne Riether
>> Ketogenic Diets: Treatments for Epilepsy and Other Disorders by Eric Kossoff, MD, John Freeman, MD, Zahava Turner, RD, and James Rubenstein, MD
>> Keto Kid: Helping Your Child Succeed on the Ketogenic Diet by Deborah Snyder, DO