Newswise — As a treatment for epilepsy, the ketogenic diet (KD) may reduce the need for medications, which in some settings are difficult to obtain on a consistent basis. After initial education, KD treatment is completely under patient control and provides some flexibility, particularly with the less restrictive diet options, such as the modified Atkins/modified ketogenic diet. Finally, the approach that can be maintained using foods that are often more accessible than medications, though cost can be a factor.
More than 75 countries now have at least one ketogenic diet center for the treatment of epilepsy, but most centers are located in high-resource countries. Establishing the ketogenic diet in a low-resource area comes with several considerations. One crucial step is the acceptance of the diet as a treatment option by providers, local nutrition technicians, and the community.
Several years ago, Archana Patel became interested in bringing the ketogenic diet to Zambia. “We saw so many kids with refractory epilepsy, and also a lack of access to anti-seizure medications,” said Patel, assistant professor of neurology at Harvard’s Boston Children’s Hospital.
After attending an ILAE congress session that discussed the basic requirements for ketogenic diet services in resource-limited regions, Patel began.
"We had to adapt the guidelines, and also get people in Zambia on board," Patel said. "We needed ethical approval because this wasn’t an approved therapy there; they considered it new. We worked with the entire department of pediatrics to get that going. And once we did, people were very interested."
Once physicians and department heads were on board, the process went relatively smoothly. "I didn’t have trouble getting buy-in, at least for an initial attempt with the diet," Patel said. "Some patients were very resistant, but they adapted because everyone was telling them the same thing—not only us, but the other doctors and the local nutritionists."
To initiate the diet, Patel looped in Ann Bergin, assistant professor of pediatric neurology and the director of Boston Children’s ketogenic diet program. "We came into a primed situation," said Bergin. "There wasn’t much skepticism because Archana had been training people for a while and they had seen the evidence."
Bergin’s team included a nutritionist, who worked with local nutrition technicians. “The technicians were incredibly interested and gave their time to be taught by our nutritionist, but also to teach her what would be available, affordable and acceptable,” said Bergin.
Costs and cultural factors
Acceptance of the ketogenic diet can be a challenge anywhere, but it can be particularly difficult in low-resource areas, where high-fat and high-protein foods generally cost more, and high-carbohydrate foods are less costly and easier to find. As well, many countries rely on a high-carbohydrate staple food, which often carries strong cultural significance. In Zambia, that food is nsima, which is usually made from maize (corn) but also can be made from millet or sorghum.
Nsima is the basis for at least one meal a day, and Zambians are generally raised to believe that no meal is a “real” meal without it. Many customs, rituals, expressions and songs revolve around this food, and there are as many as 20 words to describe it.
"You can’t have nsima on the ketogenic diet," said Patel. "That’s a very big deal; it may be the first complaint that families have and what they’re most worried about."
The mother of the family also must learn and follow separate recipes for the child with epilepsy, which takes extra time and effort. Even if the mother is willing to adjust, the rest of a child’s family may be resistant, said Bergin—and family acceptance is important, in any country, to ensure that the diet is followed. "For example, some family members think it’s cruel to not allow kids to have candy or sweets," Bergin said.
Securing hospital beds in order to initiate the ketogenic diet can be another hurdle in lower-resource regions. "Giving up a bed for someone who isn’t critically ill can be a hard case to make," said Patel, who still managed to secure space for the pediatric patients who were started on the diet.
Another option, exercised at a children’s hospital in Cairo is to forgo the inpatient phase and implement an outpatient protocol. This also reduced costs for the families, many of whom did not have health insurance.
"Outpatient initiation is possible," said Patel. "But it’s difficult if someone lives far from the hospital. It also takes longer, which means we have to wait longer to know whether the diet is helping."
Families in Zambia could not afford the necessary vitamin supplements that are given along with the diet. Patel initially secured vitamin donations, and then worked out a price agreement with a pharmacy. "But I don’t know what the quality of the vitamins is now," she noted. "They’re not all created equal."
Disorders of fat metabolism are contraindications to the ketogenic diet; in higher-resource countries, multiple tests are usually conducted before the diet is initiated, including liver and kidney function, fasting lipids, a serum acylcarnitine profile, and several others. These tests are not feasible in low-resource areas.
"In the West, we can test easily and we also have a good medical history," Bergin said. "But in Zambia and other countries, testing is out of reach, and the medical details of why someone has epilepsy are not well understood."
Repeated testing for ketones also is done twice daily in high-resource countries; this testing is not possible for families in low-income countries. However, such testing is not crucial, said Natasha Schoeler, research dietitian in Clinical Neurosciences at the Great Ormond Street Institute of Child Health at University College London.
"Testing ketone bodies is not at the top of the priority list for biochemical monitoring," she said. "It’s more of a fine-tuning mechanism, rather than something that needs to be monitored because of safety."
More than two years of laying the groundwork in Zambia ultimately resulted in three patients going on the diet. One did not maintain it due to issues at school; one maintained the diet for two years with improvements in seizure frequency and was then weaned off it. The third tolerated the diet well, became seizure free, and has remained seizure free.
The groundwork remains, however, and both Patel and Bergin see the potential.
"What we have in place now in Zambia is a team that can administer the diet with a little remote support," said Bergin. "We can continue working with them without needing to be there."
"They are still evaluating patients in Zambia and are doing routine follow ups," said Patel. "They have combined clinics in which the neurologist and the nutritionist are there together, which is great for families."
For more information
Ketogenic diet in Zambia: Managing drug-resistant epilepsy in a low- and middle-income country. Kafula Lisa Nkole et al (2020), Epilepsy & Behavior Reports, Volume 14, 2020, 100380
Implementation of the ketogenic diet in a medium resource setting: an Egyptian experience. Mary Gerges et al (2019), Epilepsy & Behavior Reports, Volume 11, 2019, Pages 35-38
Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 120 national chapters.
Through promoting research, education and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.