Childhood Absence Epilepsy Study
A Collaborative Effort Among 20 Top Pediatric Institutions
Childhood Absence Epilepsy (CAE) is a study funded by the National Institutes of Health. Researchers at Nationwide Children's Hospital Medical Center and 19 other prestigious pediatric hospitals are working together to examine the most effective antiepileptic medications for treating this common pediatric epilepsy syndrome.
Patients who have difficult-to-treat seizures may benefit from a specialized dietary treatment. The ketogenic diet is a high-fat, adequate-protein and low-carbohydrate dietary program. It is implemented and overseen by a medical management team as an additional therapy for epilepsy that is difficult to control.
Under normal conditions, carbohydrates are converted into glucose and utilized by the brain as well as other parts of the body. Because the ketogenic diet restricts carbohydrates, the body is forced to burn fat, which it converts to fatty acids and ketone bodies. The ketone bodies, in turn, have been shown to be effective in reducing the frequency of seizures. In some cases, the diet has worked well enough to allow the patient’s seizure medications to be reduced.
Candidates for the ketogenic diet include patients three months of age or older, who have been prescribed two or more medications without success. Children who take formula or eat food by mouth, or are fed by G-tube can be treated with the ketogenic diet.
Conditions that may be treated by the ketogenic diet:
The ketogenic diet is an advanced therapy, so oversight by the medical management team is essential. A component of the Complex Epilepsy Clinic at Nationwide Children’s Hospital, the multidisciplinary Ketogenic Diet Team includes pediatric neurologists, nurse practitioners, nurses, dietitians, pharmacists and social workers. They work with patients and their families to establish the dietary program and incorporate it into their daily lifestyle.
As indicated above, the ketogenic diet is a medical treatment. For that reason, patients are admitted to the hospital to begin the diet. During the hospital stay, the management team will determine how well the child is tolerating the diet, and assess any side effects. Parents and caregivers will be taught how to weigh and measure food for the diet. Parents are also taught how to check the urine for ketones.
The Ketogenic Diet Team will recommend the child remain on the diet for at least one to two months to measure its effectiveness. Blood work and the child’s weight are closely monitored while on the diet. Follow-up visits will be made at three and six weeks after initiation of the diet. It is crucial that family, friends, educators and caregivers understand and support this form of treatment and follow the recommendations of the Ketogenic Diet Team. It is also important to understand that the diet is restrictive and will affect the entire family’s lifestyle. One small bite of food not on the diet could cause seizures to occur. The child must eat all of the food, all of the time while following the diet. Also, the amount of food may be less, and the kinds of food may be different than what the child is used to.
Patients may also follow the modified-Atkins diet, which is similar to the ketogenic diet, but less restrictive. Because the modified-Atkins diet is sometimes easier to tolerate, it may be an option for school-aged children or teenagers. Patients will be evaluated by the Ketogenic Diet Team but will not need to be admitted to the hospital to begin the diet. A dietitian will provide training and follow-up appointments will be scheduled to monitor response to treatment and side effects.