Approximately 470,000 children in the United States are living with epilepsy, which is the fourth most common neurological disorder in the country. Epilepsy awareness month is in November, and one treatment option for refractory epilepsy includes the ketogenic diet. Stacey K. Bessone, R.D., L.D/N., ketogenic dietitian at Johns Hopkins All Children’s Hospital shares how this specialized diet works and when it is used.
What is the ketogenic diet?
It is a high fat, adequate protein, low carbohydrate diet that makes the body go into ketosis, a process that happens when your body uses fat for fuel. This will make the brain use ketones instead of glucose for energy. It is usually started in the hospital, occasionally with a fasting period. Parents are taught how to weigh and measure out foods using a gram scale. Some common foods on the ketogenic diet include oils, avocados, meats, mayonnaise, fish, and cream.
Who should start the diet?
The ketogenic diet is started when patients have failed at least two seizure medications or have a diagnosis of epilepsy that it is indicated for, such as Glucose transporter 1 deficiency. Patients may have a better response to the diet than to keep adding seizure medications. There are some epilepsy conditions that respond well including infantile spasms, Glut1 deficiency syndrome, Doose syndrome (myoclonic astatic epilepsy), tuberous sclerosis, and others. Children with feeding tubes often tolerate the diet using ketogenic formulas. We will initiate and monitor response to the diet for three months to determine if there is a reduction in seizures and consider stopping it after two years. The diet is also being used to treat adult epilepsy patients at Johns Hopkins Hospital in Baltimore.
What is a seizure?
A seizure is a disturbance in the electrical activity of the brain. An epileptic seizure occurs when a restricted group of brain cells (neurons) don’t communicate with each other normally. These groups of neurons are activated together and produce the clinical symptoms of seizures. There are many different types of seizures. Some patients have an aura or warning as the first symptom of a seizure (i.e., nausea). There is then an ictal (middle) phase during which there is an electrical disturbance in the activity of the brain. Patients can have loss of consciousness, loss of awareness/staring, stiffening, color change, extremity shaking, lip smacking, changes in vision, myoclonic jerking or other neurologic symptoms during this phase. As the seizure ends, the postictal phase can include confusion, headache and fatigue.
What causes seizures?
Head injuries, genetic conditions, infections, electrolyte abnormalities, and tumors or other structural findings on neuroimaging can be the reason for seizures. Infection, missing seizure medication, sleep deprivation, and flashing lights can lower seizure threshold in patients with epilepsy.
For more information about the ketogenic diet or epilepsy, visit the Johns Hopkins All Children’s Hospital Institute for Brain Protection Sciences page.
*Presented by Johns Hopkins All Children’s Hospital
About the Author: Stacey Bessone is the ketogenic dietitian at Johns Hopkins All Children’s Hospital in St Petersburg, Florida. She is an instructor of pediatric neurology at the Johns Hopkins University School of Medicine. Her practice is devoted exclusively to all forms of the ketogenic diet, in both inpatient and clinical settings. Stacey received her BS degree in Dietetics and Nutrition from Florida International University in Miami, Florida, and has concentrated her 25 years of nutrition experience to pediatrics. She also does clinical research on patients participating in diet therapy with a special interest in intermittent fasting, cognitive outcomes and patients with GLUT 1 deficiency.