Ironically, though the Ketogenic Diet is underutilized due largely to a dearth of keto dietitians, the argument could well be made that none of us would be reading this blog, and perhaps today the diet itself may have faded into extinction, were it not for one particular dietitian, Millicent Kelly RD. Along with Dr. John Freeman and Dr. Samuel Livingston, she became the dietitian at Johns Hopkins that quietly put so many hundreds of children on the ketogenic diet and kept the diet afloat while fighting a near perfect Western medicine storm of modern drugs, their simplicity of use, and their enormous profit margins.
Mrs. Kelly, as her patients came to call her, enrolled at Johns Hopkins after college graduation in 1948 to take a one-year course as a student dietitian. She formally retired in 1999. She learned the diet from Dr. Samuel Livingston, a Johns Hopkins pediatrician and a passionate advocate for the diet. In 1953 he published that of 304 patents he had put on the diet, 43% had complete seizure control and another 34% were markedly improved. (As a measure of how times have changed, Livingston not only would make follow-up house calls on his keto patients, he would frequently take a week at a time and travel from Baltimore to Texas, Florida, or Wyoming to see how they were doing). It was in this positive environment that Mrs. Kelly learned and then helped perfect the diet, one child at a time.
Two decades later, in 1973, though the keto dietary staff at Hopkins had shrunk to Mrs. Kelly and just a few other dietitians, Livingston wrote, “Since 1958 we have treated an additional 575 patients with the ketogenic diet regimen and the results with regard to seizure control were essentially the same as those reported earlier.” Yet the patient lists dwindled as new, easily prescribed drugs came along and overwhelmed the work intensive ketogenic diet.
It was about this time that Livingston retired and handed over the reins of the ketogenic diet program to John Freeman who, equally impressed with the diet’s success and challenged by the absence of medical acceptance in the face of modern drugs, found a way to keep the diet afloat–found a way within the Hopkins machinations to keep Mrs. Kelly helping fifteen to twenty sick kids per year stop having seizures with a diet and her gentle tenacity.
Decades passed. More new drugs were introduced. Other ketogenic diet centers began to fall by the wayside. One by one, the dietitians dropped out of the keto program leaving Dr. Freeman and Mrs. Kelly, along with Diana Pillas coordinator-counselor at Hopkins Pediatric Epilepsy Center, the lone slender threads that kept the ketogenic diet helping kids at Hopkins. By 1990, contract food services took over the keto nutrition at Hopkins complicating her work even more acutely. Later that year when Mrs. Kelly was demoted within the nutrition department, she went to Dr. Freeman to announce her retirement. Freeman, whose rebellious, persistent spirit is loved by all who know him, fully understood Mrs. Kelly’s importance to the very existence of the diet, and would have none of it. He found a way to keep her on board as Pediatric Dietary Consultant to Pediatric Neurology. Mercifully, she stayed.
In 1994 the ketogenic diet dramatically circumvented traditional medical information distribution routes, and awareness of its success went straight to millions of families through mainstream media focus. Public demand fueled an enormous resurgence of interest in the diet within the scientific and medical communities. It began to achieve a new foothold in epilepsy treatment and has begun to restore its rightful focus within the neurology community. Today, with over 200 ketogenic diet centers world wide, it is once again becoming a priority in the treatment of children and adults with difficult to control seizures, other neurological disorders, and certain cancers.
But one has to wonder where this story might have ended were it not for the Livingston/Kelly/ Freeman connection. What might have happened if Mrs. Kelly had simply gone away? So I asked her recently what kept her going through all those years of hard work, little pay, and even less recognition. “I thought it was my job,” she said. “I met some of the nicest people. Some of those mothers and fathers and families–what they had to endure. If I could do something, I had to.”
The Charlie Foundation