Ketogenic Dietary Therapies for Epilepsy

If two or more medications have failed to control your child’s seizures, the ketogenic diet is an important treatment option to consider. For certain types of epilepsy, the ketogenic diet may even be the first treatment suggested or may be offered before two medications have failed.

What is the keto diet, and how does it work?

Developed in the 1920s, the ketogenic diet is a high-fat diet that is low in carbohydrates and protein. The diet fundamentally changes the child’s metabolism, so that fat is used for energy, rather than glucose. This creates a cascade of metabolic changes, some of which can reduce the likelihood of seizures. While the exact mechanism of action is not yet fully understood, scientists are learning more each year. Overall, about half of children who try the diet experience at least a 50% reduction in seizures, and 10 – 15% become seizure free.    The foods consumed in the diet typically include a lot of high-fat ingredients like oil, butter, cream, mayo, avocado, eggs and cheese, along with limited amounts of meat, nuts and vegetables. Ingredients must be carefully weighed out, and it is important for children to finish each meal. Our dietitians can help families with creating a variety of recipes that meet the requirements of the diet and are appealing to the child. For infants and for children who have a G-tube, the diet often uses a combination of ketogenic formula and pureed foods.

What’s involved in starting the keto diet?

The ketogenic diet is a complex medical therapy that often requires significant behavior change in both the child and caregivers. To maximize the chances of success, patients and families at C.S. Mott Children’s Hospital are guided through an intensive, multi-step process to start and maintain the diet. The first step is to discuss the potential risks and benefits of the diet with your child’s neurologist. In some cases, there may be other treatment options that offer a greater chance of therapeutic benefit. In rare cases, other medical conditions may prevent a child from safely participating in the diet. In most cases, the ketogenic diet is an appropriate treatment option for children with drug-resistant epilepsy or a specific type of epilepsy that tends to respond well to the diet. Once the decision has been made to pursue the diet, your family has a video visit with our social worker to discuss what is required to successfully follow the diet. Our social worker helps to identify possible barriers to the diet such as limited time, money, family support or confidence. We then work with the family to reduce or eliminate these barriers and identify resources that can promote success. Next, your family has one or two education video visits with our dietitians. The dietitians provide personalized education based on the patient’s age, nutrition needs, food tolerances and family dynamics. This includes the initiation process, meal preparation, monitoring blood ketones and glucose, managing side effects, and much more. Families also receive a detailed guide on how to implement the diet, including helpful resources and tips. Starting the ketogenic diet is a major change, both physically and behaviorally. With this in mind, our patients are admitted to the hospital, typically for four to five days, when they start the diet. This allows our team to provide additional hands-on education, closely monitor the child for potential side effects, and adjust the diet to find the right balance between effectiveness and tolerability. This initial investment provides safety and reassurance in the short term and can increase the long-term effectiveness of the diet. Once the diet has been started and the patient has been discharged from the hospital, the diet is maintained at home. Our ketogenic diet team is available as needed, by phone and the patient portal, to assist your family and answer questions. 1-month, 3-month, and 6-month follow up visits are scheduled, both with the neurologist and the dietitians, so they can monitor and adjust the diet to maximize seizure control, safety and quality of life. Most children stay on the diet for about two years or so, but this varies from child to child. Additionally, most children on the diet continue to take antiseizure medication, although we may be able to reduce the dose or number of medications. We also offer the Modified Atkins diet, which allows for more protein and carbohydrates than the classic ketogenic diet, doesn’t require weighing of foods, and is started at home (as opposed to in the hospital). The increased flexibility and expanded food choices make this diet particularly appealing to older children; however, it is still a significant change from a typical diet and may not be as potent as the ketogenic diet in terms of seizure control.

How can I learn more about starting the keto diet?

If you would like to learn more about ketogenic dietary therapies, please talk to your child’s neurologist, who can answer specific questions about the diet’s appropriateness. In addition, the following resources offer a wealth of information on these therapies:

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