Ketogenic Diet, Treatment Option for Epilepsy, Pediatric Epilepsy, Phoenix, Arizona

The Comprehensive Pediatric Epilepsy Program- a key component of the Children’s Neuroscience Institute– is dedicated to finding the right solution for a child with epilepsy. Kids from across the country visit us for our world-class program, which includes an epilepsy treatment option, the ketogenic diet. The diet requires the supervision of a medical practitioner and a dietitian. It is restrictive and requires life style adjustments from the entire family.

Learn about the ketogenic diet:

• Introduction to the ketogenic diet
• Ketogenic diet expected outcome for seizure control
• Factors considered in placing a child on the ketogenic diet
• How is a child started on the ketogenic diet?
• How often does a child need to be seen by the doctor and dietitian?
• Ketogenic diet challenges

Introduction to the ketogenic diet

The ketogenic diet is a time-tested, safe, and effective method for the treatment of epilepsy.  It is a precisely calculated diet which must be respected as if it were a prescribed medication.  Calculations are based on a child's age, height, and weight.

The ketogenic diet is high in fat, moderate in protein, and low in carbohydrate.  It provides enough calories and other nutrients to grow.  It is designed so the body uses fat for energy instead of sugar.  When the body uses fat for energy, ketones are produced.  The ketones are eliminated through the urine. The amount of ketones found in the urine is a good measure of whether or not the body is using fat for energy.  If the ketones are low, changes to the diet may be needed.

The usual ratio is 4:1; 4 parts fat to 1 part protein and carbohydrate.  Amounts of food are calculated into grams and then measured on a gram scale.  To assure all nutritional needs are being met, a multivitamin and mineral supplement may be given.

Ketogenic diet expected outcome for seizure control

The goal of the ketogenic diet is to reduce the number and intensity of seizures.  Complete seizure control is not always possible.  Complete seizure control is achieved in approximately 1/3 of the children placed on the diet.  Half of the remaining children have decreased seizure frequency or require less medication to achieve the same amount of control.  It has been reported that for those children who are able to achieve complete control, the control is maintained even after the diet is discontinued. 

In addition to improved seizure control, another diet outcome that has been observed is  increased alertness or environmental attentiveness.  Most families have found this outcome to be most pleasing.  It is not known how much of the improvement is related to the diet or from the seizure medications being weaned.

Factors considered in placing a child on the ketogenic diet

Prior to placing a child on the ketogenic diet a number of factors must be assessed.  These factors are related to the child's medical condition(s) and psychosocial motivations.

The diet is used for children of all ages and with different seizure types.  The diet is most effective in children with atonic or drop seizures, myoclonic seizures, generalized tonic-clonic seizures, and multi-focal as in Lennox-Gestaut.  It is also effective for seizures related to structural abnormalities of the brain such as prenatal stroke and migration abnormalities.

A child may not respond to the diet immediately, and a three month commitment is required. The family and child must be motivated to try the diet.  The diet is strict.  There are some foods that are not allowed.  A child must be open to trying new foods. All food must be weighed and the amount of food allowed at each meal is limited. Meals may need to be prepared and stored for use at school or when traveling. Social activities involving food at school and at home require modifications. Compliance with the diet may be more difficult in older children as they are more likely to be influenced by their peers. 

How is a child started on the ketogenic diet?

Prior to making the commitment to go on the diet, the family must have a clear understanding of what the diet entails.  The family is asked to read the book The Ketogenic Diet: A Treatment for Children and Others with Epilepsy.  The family is also encouraged to speak with a family whose child is on the diet.

Once the family has decided to proceed, the child is scheduled for an appointment to meet with their child's physician, nurse, and the dietitian. The family is asked to bring information about their child's eating habits to the appointment: foods their child likes and dislikes, food allergies, and the number of meals and snacks eaten in a day. The child's weight and height are measured.  The dietitian uses the information to figure out how many calories the child needs each day and recipes that include foods that the child likes.

The dietitian discusses the basics of the diet, vitamin and mineral supplements and use of a gram scale.  The family receives instruction about measuring urine ketones, handling minor illnesses, lifestyle adjustments, and the need to consider the "sugar or carbohydrate" content of everything including medications, toothpaste, and sunscreen.  The family is instructed to keep a record of their child's seizure activity.

Before starting the diet, baseline laboratory tests are obtained.  The child's current medications are reviewed for carbohydrate content and changes are made as needed.

After the initial visit, the dietitian develops meal plans and sends them to the family.  The family is instructed on how to begin and advance the diet.  The family will measure urine ketones twice a day in the beginning.    

How often does a child need to be seen by the doctor and dietitian?

The child is scheduled for a follow-up appointment one month after the diet is started.  The child's height and weight are measured.  Seizure activity is reviewed, and family questions are answered.  The diet is adjusted as needed.  Laboratory tests are ordered.

The child is then scheduled for visits every 3 months.  The family is encouraged to keep in close contact with the ketogenic diet team.  Adjustments are usually made over the telephone.

Ketogenic diet challenges

Constipation is not uncommon and is due to the child eating only small amounts of food which are low in fiber and high in fat.  Adding lettuce and other vegetables to the diet helps, but a stool softener is often needed.

Even with good seizure control there is a possibility that a "breakthrough" seizure can occur.  A seizure may occur due to illness, a change in ketone level, or for an unknown reason.  

Social and lifestyle adjustments are required of the child and the family.  The child must only eat the foods allowed on the diet.  This means no candy, cookies, cake, etc.  The amount of food is also controlled.  For the child who is alert and active this can be difficult, especially when it comes time to participate in school parties, etc.

The family must also make adjustments.  Additional time is required to prepare and measure the ketogenic diet foods.  If the child attends school, ketogenic lunches must be prepared for the child to take to school.  Food for the other family members may need to be secured so the child on the diet can not get them.