Pediatrics

Ketogenic Medical Nutrition Therapy is very high in fat, adequate in protein and extremely low in carbohydrates. When this therapeutic diet is followed, fat is burned and a by-product, ketone bodies, are produced. The diet is prescribed for children who have seizures and is generally recommended for seizure control when anticonvulsants and medications have failed.

Fasting, and the ketosis it produces have been recognized since Biblical times as beneficial for seizure control. In 1921, Wilder introduced the modern Ketogenic Diet in an attempt to reproduce the metabolic effects of starvation. It has been used since then, but probably less frequently since the early 1950's when more effective anticonvulsants became available.

Many people with seizures can be helped by the diet. There is no way to predict whether it will be successful, one must simply try it. Traditionally, the diet has been used in children between the ages of two and six, with myoclonic, atonic and tonic-clonic seizures. It is often difficult to maintain ketosis in an infant, and older children may rebel at the food restrictions. However, when traditional medications have not been effective, or if they produce unwanted side effects, the ketogenic diet should be considered as an alternative. Studies suggest that 67-75% of patients have a decrease in seizure activity of at least fifty percent.

It is required that you read the Ketogenic Diet book prior to admission to start the Ketogenic Diet. The first or second edition may be available at your local library. Any edition is acceptable. The book may be ordered from Demos Publications (212) 683-0072 or (800) 532-8663.

"The Epilepsy Diet Treatment: An Introduction to the Ketogenic Diet," First and Second Editions, by John Freeman, Millicent Kelly, and Jennifer Freeman.

"The Ketogenic Diet: A Treatment for Epilepsy," Third edition, by John Freeman, Millicent Kelly, and Jennifer Freeman.

Directed by Jim Abrahams, Starring Meryl Streep. In this video, parents and children speak frankly about the initial concerns and the problems they had in starting and adhering to the diet. The video, narrated by Meryl Streep, shows the step-by-step preparation of the meals, and the options available on the diet. The parents also discuss various queries and concerns they had (mostly about the cholesterol levels which might result from a diet so rich in fats, including whipping cream drinks) and how their questions were answered and fears allayed.

To order an Introductory video to the Ketogenic Diet send a written request and a check for $10.00 (shipping and handling) to:
The Charlie Foundation To Help Cure Pediatric Epilepsy
1223 Wilshire Blvd #815
Santa Monica, CA 90403-5406

A scale that is accurate to at least 1.0 gram, and preferably 0.1 gram, is necessary to weigh the food for the ketogenic diet. The Ohaus Corporation makes a scale that can be used with the diet, the Ohaus SP 401. This scale is accurate to 0.1 gram and will weigh up to 400 grams at one time. This scale includes an AC power adapter so it can be plugged in or run on batteries, and it has a weight for calibrating the scale regularly.

The Ohaus scale is expensive, but worth the money. We have had numerous problems when trying to use cheaper scales, but you are able to use any scale that is accurate to 1.0 gram, but preferably 0.1 gram (a tenth of a gram). The 0.1 gram measurement is helpful when trying to fine-tune the diet for the best possible seizure control.

You may also order this scale on the Internet at http://www.discountscales.com. Please look for the SP 401 in the Ohaus listings. There are other scales on this site that are appropriate for use with the diet, such as the MyWeigh scale. For your convenience, I have looked up the price of a few scales on the website.

My Weigh Model i300: cost is $34.95. This scale is accurate to a tenth of a gram and weighs up to 300 grams. This scale only comes with batteries, the AC adapter is separate. Calibration weights not included.
My Weigh Model iBal 500: cost is $73.95. This scale is accurate to a tenth of a gram and weighs up to 500 grams. This scale comes with batteries and an AC adapter. Calibration weights not included.
Ohaus Model CS200: cost is $52.95. This scale is accurate to a tenth of a gram and weighs up to 200 grams. This scale only comes with batteries, the AC adapter is separate. The AC adapter costs $22.95.
Ohaus Scout Pro Model SP401: cost is $111.95. This scale is accurate to a tenth of a gram and weighs up to 400 grams. This scale includes the AC adapter and calibration weights.

No one is certain how the diet works. Originally it was thought to be related to the ketones that are produced when fat is metabolized. The body normally burns glucose for energy and can store up to one day's supply. After a one day fast all the stored glucose is burned, which causes the body to turn to burning fat for energy. This results in ketosis, which is maintained by feeding a high fat diet. The brain uses ketones as a source of energy.

Ketosis is produced by eating foods that are ketogenic (fats) and avoiding foods that are antiketogenic (carbohydrates). Dietitians calculate how many calories a child needs for energy and normal growth. The calorie allowance is initially approximately 75% of the RDA for the child's age. To maintain the desired ketosis, Ketogenic Therapy is provided in terms of a ratio, for example 4:1. In the 4:1 ratio there is 4 times as much fat as protein and carbohydrates combined. The dietitian devises meal plans that provide the needed calories in this ratio. Food is weighed on a gram scale, or preferably tenth of a gram scale, because it is imperative to maintain the diet exactly as planned. Each meal pattern gives the exact weight of each food item.

The diet is generally started in the hospital under medical supervision. Ketosis can be produced rapidly by removing most of the carbohydrate from the diet for 24 hours. As the child's body gets used to burning fat for energy, it is important to monitor him/her carefully to make sure that his/her blood sugar does not drop too low. Most children tolerate this period well. Once the child is excreting large amounts of ketones in his urine, the diet is gradually introduced. To be sure that the child will tolerate all these new fatty substances, one-third of the recommended diet is given for the first two meals. The child then progresses to two-thirds of the total diet over the next two-three meals, followed by the full diet.

The fat in the diet comes mainly from butter or butter substitutes and heavy whipping cream. The food must be weighed accurately, and the diet must be followed rigidly. Even very small amounts of carbohydrate may eliminate the desired ketosis and allow breakthrough seizure activity.

The child is usually maintained on the diet for approximately a two-year period. If all is going well, a gradual wean off the therapy is initiated by decreasing the ketogenic ratio. If parents are interested in reducing medications a drug wean may be initiated once seizure activity begins to decrease.

If a child is very successful with the diet and becomes seizure free for a year, it is possible that a wean off the diet may be started at that time. There are no hard and fast rules for the weaning of the diet, and it is frequently continued for a much longer period of time because quality of life is significantly improved on the therapy. Many children are able to be weaned and remain seizure free and drug free when the diet has been discontinued.