The ketogenic diet is a very high fat, adequate protein, very low carbohydrate diet that makes the body go into ketosis, a process that happens when your body doesn’t have enough carbohydrates to burn for energy. The brain will use ketones – the byproduct of the body instead burning fatty acids – for energy. In some cases, it is used to treat children with epilepsy.
The diet is usually started in a hospital, sometimes with a 24-hour fasting period. Parents are taught how to weigh and measure out foods using a scale. Some common foods on the keto diet include oils, avocados, meats, mayonnaise, fish and cream. On this week’s On Call for All Kids, Stacey K. Bessone, R.D.N., L.D.N., ketogenic dietitian at Johns Hopkins All Children's Hospital, and Eric Kossoff, M.D., director of the Child Neurology Residency Program, Professor of Neurology at Johns Hopkins Medicine and one of the world experts on dietary treatment for epilepsy (ketogenic diet) explain the benefits of this diet.
Who should start the diet?
We use the diet when patients have certain types of epilepsy or have failed two to three medications. On rare occasions, we’ll try the diet first (before medications), specifically for a type of epilepsy called infantile spasms. Patients may have a better response to the diet than to keep adding medications after they have tried two or three different ones. There are some epilepsy conditions that respond very well including infantile spasms, Glut1 deficiency syndrome, Doose syndrome and others. Children with feeding tubes on formulas also do very well. We will try the diet for three months to see if it’s working, and usually stop after two years. It is being used more now for adults.
What is so exciting about July 27?
The diet is actually 100 years old in July: The first paper published was July 21, 2021 in the Mayo Clinic Bulletin. It was created at the Mayo Clinic in Rochester, Minnesota, by an endocrinologist and was widely used before medicines were used for seizures. Johns Hopkins was one of the first centers to actively use and research the diet in the 1920s and still is today. After many decades of disuse, the ketogenic diet started to become more popular in the 1990s and is now becoming widely used around the world.
How do the clinics at Johns Hopkins in Baltimore and Johns Hopkins All Children’s Hospital work together?
In 2011, All Children’s Hospital joined Johns Hopkins Medicine. The two clinic providers started meeting once a month reviewing patients to create one of the first virtual clinics between the hospitals. Since then, we collaborate regularly on how we administer the diet to patients and receive advice from each other on tough cases. We even have a research database together that we use to publish information on various aspects of the diet. This can help patients have the best outcomes for the ketogenic diet.
What projects are you working on together?
Since the merger of our centers a decade ago, we have written six academic papers together. The three most recent have been very helpful in the ketogenic diet field. One looked at how often children are on the diet alone (without medications) and results showed this happens 14% of the time. Another trial showed that giving extra fat throughout the day allowed children on the diet to stay on their antiseizure drugs as liquids (avoiding the concern that liquid medications have hidden sugars that can negate ketosis). Lastly, we reported our experience in 2020 starting and continuing children on diets during the COVID-19 pandemic. Our centers were very creative, using telemedicine meetings to keep providing the diet to children in Florida and Maryland.
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