Understanding the Ketogenic Diet

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If you or someone you love is living with epilepsy, you’ve probably heard about a special diet that is sometimes used to help control seizures. The  ketogenic diet is a high-fat, low-carbohydrate diet that helps to reduce or prevent seizures in some people with epilepsy, often for those whose seizures cannot be controlled by medication and/or surgery.

The ketogenic diet is often associated with children. But recent studies suggest that the diet is not only effective in children, but it can be used for adults, as well.

“Adults can have a difficult time adhering to these diets, but they can also be very effective, particularly in adults who have the same seizure types and epilepsy syndromes as the children who respond well,” says Mackenzie C. Cervenka, M.D., Assistant Professor of Neurology and Director of the Johns Hopkins Adult Epilepsy Diet Center and the Epilepsy Monitoring Unit.

How does it work?

Usually the body uses carbohydrates (like bread, pasta, sugar) to produce energy. With the ketogenic diet, fats are the primary energy source used, which forms substances called “ketones” in the body. The diet uses careful measurements of calories, fluids and proteins to maintain a higher level of ketones, which has been found to help control seizures.

The ways in which the ketogenic diet controls seizures are largely unknown, but several possible theories have been proposed, including the release of neurotransmitters and a reduction in inflammation.

Is it effective?

The ketogenic diet has been used for the treatment of chronic seizures since the 1920s. According to Dr. Cervenka when the diet is used for children with  refractory epilepsy, approximately 50% have a more than 50% overall reduction in seizures.

“This is the standard definition of response to treatment with anti-seizure drugs,” Dr. Cervenka notes.

Children who seem to respond well to the diet are those with certain seizure types and epilepsy syndromes, including:

  • Glucose Transporter Protein 1 (GLUT1) deficiency

  • Infantile spasms

  • Doose syndrome

  • Dravet syndrome

  • Tuberous sclerosis

  • Rett syndrome

Some children also respond to less restrictive forms of the ketogenic diet, such as the  modified Atkins diet or the  low-glycemic index treatment

“We recently found that teenagers and young adults with drug-resistant  juvenile myoclonic epilepsy respond well to the modified Atkins diet,” notes Dr. Cervenka.

Is it safe?

For children, some of the concerns with the diet include constipation, osteopenia (reduced bone mass), kidney stones and growth retardation. Findings are conflicting about the effects of the ketogenic diet on growth in children, but in general, growth retardation occurs when the diet is used in younger children and can improve after stopping the diet.

In adults, hyperlipidemia (too many lipids, or fats, in the blood) is also a concern. However, the NIH recently published a  study showing that while LDL (the “bad” cholesterol) initially increases over the first 3 to 6 months of treatment, it typically normalizes after the first year.

How do I get started?

Ask a doctor if the ketogenic diet may be an effective treatment for you or your loved one. Because the diet involves special consideration and monitoring, it must be prescribed by a physician and should be carefully monitored by a dietitian or nutritionist.

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Medical Reviewer: William C. Lloyd III, MD, FACS
Last Review Date: 2019 Apr 14
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