My battle with epilepsy began suddenly, progressed quickly, and ended abruptly with the help of the ketogenic diet. I was a healthy child, developing normally, until the first seizure occurred when I was three years old. This was just three weeks before Christmas, 1959. During the next two months, two long hospitalizations and five drugs failed to control the seizures.
In February, my parents chose to escalate my case to the Mayo Clinic, where I was admitted for a few days and discharged on a new drug regimen. In summarizing my case, the physicians noted that I was a candidate for the ketogenic diet.
I was home from Mayo Clinic a little more than a week before developing ataxia, a loss of muscle control and coordination, as a side effect of one drug. My parents rushed me back to Mayo Clinic for another long hospitalization. The seizures were now coming several times per hour. The doctors proposed the ketogenic diet now, but my parents opted for one more drug trial, which also failed. In July, I returned to Mayo Clinic for a third time, for administration of the ketogenic diet. Shortly thereafter, we moved to the East Coast, and my mother managed the diet with little or no external support. It was act of quiet heroism that changed my life.
Then there is a long silence in my chart because I left the hospital permanently seizure free. Three years later, my mother and I returned to Mayo Clinic to obtain permission to end the diet. The doctors concurred.
I have continued to be seizure-free for the decades since then, and continue to be in good health. I have earned a post-graduate degree, and have worked in the information technology for my entire career. At mid-life, I can see no evidence that the unbalanced nature of the ketogenic diet caused any long-term side effects.
In 1994, a series of unexpected events put me in contact with the Charlie Foundation. I dug into my past to understand my own medical history, and helped the foundation with early publicity. In the years since then, their work has helped spawn research into alternatives to the ketogenic diet, making diet solutions available to a wider age group of patients. In 2007, my teen-age daughter benefited from this research when she gained control of absence seizures using the Modified Atkins Diet for Epilepsy, a regimen which was developed at Johns Hopkins Medical Center, but can be initiated without hospitalization.
Thank you, Charlie Foundation, for ensuring that others get offered the same treatment options that I needed, a treatment that provided a complete cure of my epilepsy!