The ketogenic diet is one of the oldest forms of treatment for epilepsy. Devised in the 1920s when there were few effective treatments for epilepsy, this special diet, which is high in fat, low in protein, and has negligible amounts of carbohydrate, was created to simulate some of the metabolic effects of fasting, a state known to decrease seizures in some individuals.
It has been known for centuries that fasting ameliorates seizures. In the early 1900s, a boy in New York who was experiencing uncontrollable seizures was taken by his desperate parents to Hugh Conklin, an osteopathic faith healer and disciple of the well-known faith healer Bernard McFadden. Conklin recommended prayer and ten to twenty days of fasting, as well as osteopathic treatments. When they prayed and fasted with this child, his seizures improved. Experience demonstrated that prayer alone was insufficient. Others confirmed the benefits of fasting for seizure control. In order to search for the mechanism by which this improvement occurred, the boy's father, a lawyer, made a generous donation to the newly established Department of Paediatrics at the Johns Hopkins University School of Medicine, which was being directed by his brother, John Howland. At the time, Howland was initiating studies of metabolism in young children. Together with his younger colleague, James Gamble, he began studies of the metabolic effects of fasting in children with epilepsy.
Simultaneously, researchers elsewhere began to report success with fasting as a treatment for epilepsy. Physicians at the Mayo Clinic devised a diet that "would simulate the effects of fasting." This diet derived about 80 percent of its calories from fats; it contained minimal protein and virtually no carbohydrate. This diet remains the basis of today's ketogenic diet.
In the absence of glucose (sugar), muscle protein and fat cannot be completely "burned" and leave a residual "ash" in the body in the form of ketone bodies, which are washed out in the urine. Protein that is burned leaves uric acid, which also appears in the urine. At the time, it was believed, erroneously, that the presence or absence of uric acid held the key to seizure control. When a fast was broken by eating glucose or protein, the uric acid in the urine disappeared. If the fast was broken by eating fat, the uric acid excretion was maintained. A diet was developed that was high in fat and had just enough protein for growth and as little carbohydrate as possible. This was termed the ketogenic diet because it caused a continuous excretion of ketones in the urine. (Ketones also account for the "sweetish " smell of the breath of children who are on the diet.)
Today we know that it is not the uric acid in the urine that accounts for the effectiveness of the diet. However, the ketones in the urine are a good index of the degree of metabolic change that has occurred. But the excretion of ketones, while necessary, is not alone sufficient to document the anticonvulsant effectiveness of the diet. In 1997 we still do not know how the ketogenic diet works.
Since the only available effective medications in the early 1900s were phenobarbital and bromides, which failed to control many individuals' seizures and both of which posed major toxicity problems, the ketogenic diet came to be widely used – with substantial success. In a number of reports from the Mayo Clinic, from New York Hospital, and from Johns Hopkins in the 1920s and '30s, it seemed that 20 to 40 percent of children with difficult to control seizures had their seizures completely controlled by the diet. An additional 30 percent had a substantial decrease in the frequency of their seizures, and 25 to 40 percent did not benefit.
However, even then, physicians looked askance at this highly restrictive diet, which they considered unpalatable. Their most favourable comments were often "Yuk!" or "What normal school-age child would stick to a diet like that?" In 1939 the first highly effective anticonvulsant, Dilantin (phenytoin), was discovered. Clearly it was far easier to take pills than to stick to a rigid diet. Gradually, during the 1940s and '50s, other anticonvulsants were discovered, fewer children were placed on the diet, and the diet was used less and less.
At Johns Hopkins Hospital during the 1940s and 1950s, the diet continued to be used, under the leadership of Dr. Samuel Livingston, one of the pioneers in paediatric epilepsy and one of the doctors who prescribed the diet extensively. The dietician who was responsible for the diet, Millicent Kelly, remained at Hopkins after Dr. Livingston retired, and the hospital continued to start eight to ten children a year on the diet. It was one of the few institutions using the diet at that time.
In the 1960s a modified form of the diet using medium-chain triglycerides (MCT oil) was developed. It had the alleged advantage of allowing more protein and carbohydrate in the diet and therefore "greater variety" in the meals. Dieticians and physicians used this diet in place of the older, "classical," ketogenic diet. As new anticonvulsants became available, few in the medical profession, and even fewer dieticians, retained or gained experience with either form of the ketogenic diet. Often, those who used the diet miscalculated it, because of their lack of experience, and as a result it was not effective. Therefore, the use of the diet gradually withered away. That is, until October 1994.
In the fall of 1994, Charlie Abrahams, the two-year-old son of a Hollywood producer, was brought to us with intractable seizures. His father, Jim Abrahams, had read about the diet in the first edition of this book and wanted to start Charlie on it. Charlie's seizures were quickly controlled and, freed from medicine and the effects of the seizures, Charlie started to blossom. He is now a normal young man, free of seizures. Mr. Abrahams felt compelled to inform other parents about the diet as an alternative to medication, and so he made a videotape, which is available from the Charlie Foundation. After a segment about Charlie appeared on a television program, the demand for the ketogenic diet was rekindled! |
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