The Ketogenic Diet for Epilepsy
Epilepsy or seizure disorder is a neurological disorder in which the brain’s nerve cell activity is disturbed which causes epileptic seizures. Fasting and other dietary regimens have been used to treat epilepsy since at least 500 BC (1).
The beneficial effects of starvation on controlling seizures was reported by Rawle Geyelin at the American Medical Association convention in 1921. Not so long after, it was reported that the effects of starvation could be mimicked by the Ketogenic Diet (KD) by Dr. Russell Wilder from the Mayo Clinic (2, 3).
It was documented that KD was as effective as starvation for the treatment of epilepsy in children. Because this type of diet caused human body to go in ketosis, it became known as the ketogenic diet (KD).
Here’s a scan of the actual Mayo Clinic Bulletin article that reported favorable results of prolonged fasting:
In my book, Honest Medicine, I tell the dramatic stories of four treatments that, in my opinion, could literally save healthcare because, as my book’s subtitle states, they are all effective, time-tested and inexpensive, and they are all used to treat life-threatening diseases. This, at a time when many doctors are prescribing often-toxic, sometimes ineffective treatments that are so expensive that I’m afraid they will bankrupt our healthcare system.
I am passionate about getting the word out about all of these inexpensive, effective treatments to as many people as I can—treatments that help people with conditions as far-reaching as liver disease, non-healing wounds, autoimmune diseases and epilepsy. I am on a mission.
Although I am passionate about all four treatments that I feature in my book, perhaps the treatment that causes me to become most emotional is the Ketogenic Diet, which has helped to control seizures in many thousands of children with epilepsy since the 1920s, according to many studies (4, 5, 6, 7, 8, 9).
Honest Medicine features contributions by three parents who fought tirelessly to be able to put their children on the diet. In each case, their doctors discouraged them; their fight seemed hopeless. In each case, they eventually succeeded.
The parent who started it all was Jim Abrahams. He is the story of one father’s crusade, begun in 1994, first to help stem his baby son Charlie’s almost non-stop seizures, and then to help other frustrated parents throughout the world whose children have intractable epilepsy.
I hope one day to publish an article in a major magazine—or to find the right freelance writer to do it. The title of the article will be “The Man Who Changed the Face of Pediatric Epilepsy.” That man is Jim Abrahams. His not-for-profit organization originally called The Charlie Foundation to Help Cure Pediatric Epilepsy has broadened its scope and mission. It is now The Charlie Foundation for Ketogenic Therapies. Through this organization, Jim has introduced the diet to thousands, if not millions of parents throughout the world. He has also convened several conferences worldwide devoted to spreading the word and educating the world about the diet.
Jim’s story follows. It is also the story of a diet that would have been forgotten if young Charlie Abrahams hadn’t been diagnosed with epilepsy as an infant.
In 1994, Jim Abrahams was a very successful Hollywood film writer/director/producer (“Airplane” and “Hot Shots”). These were very funny movies. But, at the same time, something happened to Jim and his family that was anything but funny: little Charlie was diagnosed with a severe form of epilepsy. Some days he had over a hundred seizures. He continued to deteriorate, despite numerous combinations of drugs and even one brain surgery. As Jim describes it, “Many days, our home was filled with tears.”
The doctors convinced Jim that Charlie would never improve; that their only answer would be more and more drugs—ending in severe retardation. Finally, Jim went to the library in an effort to learn about ways his family would be able to cope with this hopeless future. To his surprise, Jim found a diet that had been effective in stopping seizures in children like Charlie for over seventy years at some very prestigious institutions. That diet was called the Ketogenic Diet. But not one doctor, of all the doctors who had examined Charlie, had told Jim about this diet. When Jim excitedly showed them articles about the diet, they told him NOT to try it; that it wouldn’t work.
Jim had told the doctors that, in addition to the Ketogenic Diet, he was also considering bringing Charlie to an herbalist he and his wife had heard about who worked out of a strip mall in Houston, Texas. One doctor said, “Flip a coin, I don’t believe either will work.”
Jim and Nancy took his advice. They flipped a coin. It said to go to Texas. They did, and Charlie’s seizures continued.
At long last, against doctors’ advice, Jim called Dr. John Freeman from Johns Hopkins, one of the authors of the book, “Seizures and Epilepsy in Childhood: A Parent’s Guide“. He suggested they bring Charlie to Hopkins. They did and Charlie was started on the diet. He went from having dozens, frequently as many as one hundred seizures a day, to zero within forty-eight hours. He was off his four anti-convulsant medicines within a month. Five years later he was weaned off the diet and has remained seizure and drug-free while eating a regular diet to this day.
Jim and Nancy couldn’t believe it. At first, Jim was delighted. But then he became angry. “Why did it take us so long to find this diet?” and “Why aren’t doctors telling other parents about it”? Jim 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. He and Nancy created The Charlie Foundation to help cure pediatric epilepsy. Thanks to Jim and Nancy and The Charlie Foundation—and Beth Zupec-Kania (the dietitian he hired to teach hospital staffs throughout the world about the diet)—many children are seizure-free today.
In Honest Medicine, Jim points out: “What makes Charlie’s story unusual is not that his seizures were difficult to control, or that medications had bad side effects and failed to help. The truth is that about thirty percent of children with epilepsy do not have their seizures controlled by drugs.
According to the organization, Citizens United for Research in Epilepsy (CURE), “It is estimated that close to 2 of the 3 million Americans with epilepsy do not have complete seizure control, or only experience seizure control at the cost of debilitating side effects from medications.”
Jim realized that his position was unique in that he had sufficient funds and influential friends, and he knew how to disseminate information. He asked his friend Meryl Streep to narrate a video telling parents about the diet. As it turned out, one of the people Jim hired to create the video was on the production staff of the television show, “Dateline NBC.” The man was struck by the power of Jim’s and Charlie’s story. What resulted were two “Dateline NBC” segments. After the first one aired, Jim received so much mail that he had to set aside an entire room to house all the letters he received, many from parents whose children with epilepsy had been similarly abused by the medical system.
One of the letters was from a woman who had had an experience similar to Jim’s and Charlie’s. In her case, though, her fight to obtain the diet for her young son almost didn’t end so well. Doctors and hospital staff tried to keep her from taking her little boy to Johns Hopkins. Eventually, she won, and like Charlie, her son was put on the diet. Like Charlie, he is seizure-free today. Jim contacted the woman. The result was a made-for-television movie, “First, Do No Harm.” Meryl Streep played the mom.
The Ketogenic Diet was becoming better known as a treatment for childhood epilepsy.
Jim led me to two other parents who provided their stories for Honest Medicine. Emma Williams, Matthew’s mother, tells 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 of The Charlie Foundation, to educate parents who want to try the diet for their children, so that they won’t have to go through what she and so many other parents have gone through.
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 anti-seizure 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 grownups, have permanent disabilities resulting from both their pre-diet seizures and their pre-diet medications.
Honest Medicine also contains contributions from the two dietitians who championed the diet from 1948 to the present. Millicent (Milly) Kelly was at Hopkins from 1948 to 1998 and Beth Zupec-Kania has worked with the diet from 1993 to the present. She is a consultant to The Charlie Foundation and goes around the world, teaching hospital staff to administer the diet. She also manages Ketogenic Diet therapy in people with various neurological disorders.
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 have seizures controlled with medicine, but many of those come with debilitating side effects. Brain surgery, when appropriate, has a tremendous cost, 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.
So, here is a diet that has been around for nearly 100 years. While it is becoming better known, many parents are still not being told about it by their doctors. Why is this? As Jim Abrahams puts it in Honest Medicine: “How many children, worldwide, have suffered unnecessarily because their parents were uninformed or misinformed about the diet? What is the collateral damage? It’s a human tragedy of incalculable proportions.”
I hope that, as more people read Honest Medicine and share the stories in it with others, more parents will learn about the diet and it’s effect on Seizure Control.
Julia Schopick is a best-selling author of the book HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases. She is a seasoned radio talk show guest who has appeared on hundreds of shows and is often invited back. In addition, her book has been featured in numerous publications, both print and online. Through her writings and her blog, HonestMedicine.com, Julia’s goal is to empower patients to make the best health choices for themselves and their loved ones by teaching them about little-known but promising treatments their doctors may not know about. Julia’s writings on health and medical topics have been featured in American Medical News (AMA), Modern Maturity (AARP), Alternative & Complementary Therapies, the British Medical Journal and the Chicago Sun-Times. You can contact her on Facebook at https://www.facebook.com/julia.schopick visit her fan page or write to her at [email protected].