Since its introduction in 1921, the ketogenic diet has been used for children with difficult-to-control seizures. Why not adults? In perhaps the very first published article about the ketogenic diet, written by Dr. Rawle Geyelin in 1921, ketosis was described as helpful for patients aged “3 ½ to 35 years”. Nowhere in the article did Dr. Geyelin say the diet worked better in children. In 1921, when faced with a choice of either bromides or phenobarbital (or nothing), many adults chose the ketogenic diet
Just 9 years later, Dr. Clifford Barborka from the Mayo Clinic in Rochester, Minnesota reported 100 adults placed on the ketogenic diet. This is still the largest series ever on adults with any diet. Although the age range of patients was from 16 to 51 years, one-third were under age 20 and better referred to as teenagers. Ketosis typically occurred, but interestingly several patients had seizure control without ketosis! How did the adults do? Very well! Fifty-six percent had a >50% response and 12% were seizure-free. Surprisingly, the authors, who were probably biased somewhat by the remarkable improvement seen by their colleagues in children at the Mayo Clinic in 1925 (in which 83% improved and 60% were seizure-free), wrote “there seems to be no question but that the patient who can be afforded the best opportunity for treatment is the child or young adult…whereas older patients…are the least likely to be benefited”.
However, we know now, 80 years later, that 56% responding to the diet is just as effective as most modern studies of children. Unfortunately, in some ways, the damage was done and a myth that the diet worked less well in adults was made. Dr. Barborka wrote in his discussion that the diet was worthy of further study in adults… but this sadly didn’t happen for many decades.
In 1999, Dr. Joseph Sirven and the group from the Jefferson Comprehensive Epilepsy Center in Philadelphia published their experience using the ketogenic diet in 11 adults (9 women) aged 19-45 years. All were treated with a typical calorie and fluid restricted, 4:1 ratio diet after a 24-72 hour fast. At 8 months, 6 (55%) had a >50% seizure reduction and 3 (27%) had a >90% improvement, similar again to most studies of children! Cholesterol increased over 6 months from a baseline of 208 to 291 mg/dl and triglycerides were slightly higher.
What about the Atkins diet? A case series of the benefits of the modified Atkins diet (providing more protein and no fluid or calorie restriction) was reported in 2003 by this author and the group from Johns Hopkins. Half of the 6 patients were 18 years of age or over. The 18-year-old female had a 90% improvement in seizures almost immediately with large urinary ketosis. She was maintained on the diet for 20 months without side effects. In contrast, a 42-year-old man and 52-year-old man had less success.
Based on results from this study, our group started in 2004 and completed this past November, a study of 30 adults aged 18 and over using our modified Atkins diet. Carbohydrates were limited to initially 15 grams per day and medications left unchanged for the first month. Early results from this study were first presented at the 2006 American Epilepsy Society Annual Meeting in San Diego (www.aesnet.org). After 3 months, 47% had a >50% reduction in seizures, yet again similar to children. Many people lost weight, with the average weight loss being 15 lbs. The diet was tough to stick to, but those who did found it was helpful. Most adults who responded to the diet improved within 2 months.
Based on this study, another study is underway at Johns Hopkins by this author and Dr. Peter Morrison. We plan to enroll 30 adults in the USA with at least weekly seizures, who have tried at least 2 medicines, and have not tried the Atkins diet before. The purpose of this study will be to show that the diet is easy to follow – all adults who enroll will be started on the diet over email (and will not have to pay to visit Baltimore!), and the dietitian will be available only for emergencies. Adults enrolling will need to send medical records, sign a consent form, and have a local doctor willing to be available if there are any problems.
The past 10 years have seen not only a resurgence in the use of the ketogenic diet for children, but recently for adults as well. For adults given a choice of only medications, vagus nerve stimulation, or surgery… now a diet is truly “on the menu”.
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