The ketogenic diet is a medical treatment for controlling seizures by switching a body’s primary metabolism to a fat-based energy source rather than utilizing glucose.
The body obtains energy from three major food sources:
1. Carbohydrates: Starches, sugars, breads, cereal grains, fruits, and vegetables
2. Fats: Butter, margxarine, oil, and mayonnaise
3. Proteins: Meat, fish, poultry, cheese, eggs, and milk
Carbohydrates comprise approximately 50% to 60% of the average American’s daily caloric intake. The body converts these carbohydrates to glucose, which is burned by the body to produce energy. When the supply of glucose is limited, as during fasting, the body burns its fat for energy. During prolonged starvation, if there is insufficient fat, then muscle is burned, thus compromising energy and good health.
The body maintains only about a 24–36 hour supply of glucose, and once that glucose is depleted, the body automatically draws on its backup energy source—stored body fat. This is a survival skill, inherited from our hunter-gatherer forefathers who may have had to go for prolonged periods between game kills and, during those times, used their stored fat as their energy source.
The ketogenic diet was designed to simulate the metabolism of this fasting. When a fasting person has burned up all his glucose stores, he then begins to burn stored body fat for energy. After the initial fasting period, a person on the ketogenic diet derives his energy principally by burning the exogenous dietary fat rather than from the more common energy source, carbohydrate (glucose), or from their own body fat. But unlike fasting, by providing exogenous fat the ketogenic diet allows a person to maintain this fat-burning metabolism as its primary source of energy (instead of glucose) over an extended period of time.
In the absence of glucose, the fat is not burned completely but leaves a residue of soot or ash in the form of ketone bodies, and these ketone bodies build up in the blood. The ketone residues are beta-hydroxybutyric acid and acetoacetic acid. The beta-hydroxybutyric acid can be metabolized by the liver and by the brain as a source of energy. The acetoacetic acid is excreted in the urine and the breath and imparts a sweet smell to the breath that has been likened to pineapple.
When ketone levels are large enough, as indicated by a simple urine test, it is said that the body is ketotic (pronounced key-tah´-tic) or in a state of ketosis. Ketosis is also evidenced, as mentioned previously, by a fruity, sweet odor to the breath. In the presence of large levels of ketone bodies, seizures are frequently controlled.
REMINDER: The traditional ketogenic diet is a rigid, mathematically calculated, doctor-supervised therapy. This diet should only be attempted under close medical and dietary supervision.
The ketogenic diet simulates the metabolism of a fasting individual. A fasting person burns stored body fat for energy; a person on the ketogenic diet derives energy principally from the fat in the diet rather than from the more common energy source, carbohydrate. But unlike fasting, the ketogenic diet allows a person to maintain this fat-burning over an extended period of time. Traditionally, the diet has been initiated over 3 days after a 48-hour period of fasting (a limited amount of carbohydrate-free fluids are allowed during this period). More recent studies (discussed in Chapter 7) have questioned whether fasting, slow initiation, or even the traditional ketogenic diet itself is necessary for seizure control.
Foods
Common, but carefully selected, ingredients are used in meals that a child can eat while on the ketogenic diet (see Chapters 8 and 9). With the help of a dietitian and careful calculations, the diet can be adapted to many foods and many cultures around the world (see Chapter 6).
The diet can also be started as a liquid formula for bottle-fed infants and children with a gastrostomy feeding tube. For the parents of these children, the diet can be fairly easy to administer because compliance is not an issue, and the formula tastes as good as regular baby formula.
Can my child live a normal life while on this diet?
The answer is clearly YES! Here are examples of what some ketogenic meals might look like:
Sample meal plans
Breakfast 1 |
Breakfast 2 |
Scrambled egg with butter |
Bacon |
Diluted cream |
Scrambled eggs with butter |
Orange juice |
Melon slices |
|
Vanilla cream shake |
Lunch 1 |
Lunch 2 |
Spaghetti squash with butter and Parmesan cheese |
Tuna with mayonnaise |
Lettuce leaf with mayonnaise |
Celery and cucumber sticks |
Orange diet soda mixed with whipped cream |
Sugarless Jell-O with whipped cream |
Dinner 1 |
Dinner 2 |
Hot dog slices with ketchap |
Broiled chicken breast |
Asparagus with butter |
Chopped lettuce with mayonnaise |
Chopped lettuce with mayonnaise Vanilla cream Popsicle |
Cinnamon apple slice with butter topped with vanilla ice cream |
Alternatively, breakfast might include a mushroom omelet, bacon, and a cream shake, or another special Keto-recipe cold cereal. Keto cereal was invented by the creative mother of a child who missed eating his bowl of cereal in the morning. The mother crumbled keto cookies in a bowl and poured cream over them. This made an excellent cold cereal that satisfied her son. Each meal will depend upon the desires of the child and the imagination of the parent.
REMEMBER: The ketogenic diet should only be initiated under medical and dietary supervision!
Contrary to the beliefs of some parents, the ketogenic diet is not “all natural,” “holistic,” “organic,” or “pure.” The ketogenic diet is a means of treating seizures in children, and perhaps in adults as well. The diet may be more effective for some forms of seizures than our current medications. It definitely is a substantial intrusion on a family’s life. Some families have made it more of an intrusion than others. Some have fed the child on the diet separately from the rest of the family thinking the KetoKid might feel deprived if they saw other food that they cannot have. We feel that this is never a good idea. Rather, one can make the child feel special by emphasizing that he (or she) has a special diet. However, physicians and families must always weigh the difficulties and benefits of the ketogenic diet compared to medications and their side effects and to seizures, and try to do the best thing for each child.
THE DIET is not the best choice for everyone.
The ketogenic diet is not completely free of side effects. In general, the ketogenic diet is better tolerated than most medications and has fewer potential side effects. However, it does have side effects. The major side effects seen with the diet are lack of weight gain, slightly decreased growth, somewhat high cholesterol, constipation, kidney stones, and acidosis. All are treatable and reversible without having to stop the diet.
Emma, who had epilepsy, is one example. Emma’s family thought any diet would be better than giving their daughter drugs. They believed that medications were unnatural and had side effects, so they tried to keep Emma off anticonvulsants. They had tried gingko and St. John’s wort and had made several trips to chiropractors and hyperbaric oxygen treatment centers. Nothing had helped her seizures. After a long discussion about the ketogenic diet with neurologists at Hopkins, however, Emma’s parents began to recognize that although the diet was perhaps an option, medicines, if effective, would be much simpler! An anticonvulsant medication was started, and Emma became seizure free after 3 weeks. She never had to go on the ketogenic diet.
Charlie Abrahams is an alternative example. For over a year and a half, his physicians had tried multiple medications and even surgery before the ketogenic diet was attempted. His seizures were completely controlled within 1 week on the diet.
The ketogenic diet requires a lot of commitment and a lot of work initially. Medications are easier if they are effective and without substantial side effects. Even for families who become expert in preparing the diet and organizing their lives around it, the ketogenic diet is a big undertaking. Anticonvulsant medications are far easier to use, and if they work, they are probably a better choice than the diet. This is why physicians usually recommend that an individual with seizures should try one or two medications before turning to the diet.
A modified Atkins diet (discussed in Chapter 18) is somewhat easier than the traditional ketogenic diet, but it is still not easy.
Common misunderstandings about the diet
• “The diet will completely control the seizures.”
Some children (about 1 in 10) do become seizure free. Others will have a reduced number of seizures. Half of children who try the diet do not receive enough benefit to make it worth continuing. In any event, the diet is worth trying. If it is too difficult or provides inadequate control, you can always stop the diet (see Chapter 16) and return to trying medications.
• “She will get rid of all those poison medicines that have side effects and are not even approved for use in children.”
This is a result to be desired, but it is not a reality for everyone. First, a child has to have good control of the seizures. Only then the doctor can try to decrease or eliminate medicines.
• “We will just try it for a few weeks, and if it doesn’t work we’ll go back to medications.”
We ask each family for a 3-month commitment. After starting the diet, it takes 3 months to fine-tune it, which involves finding the correct amounts of calories, finding the correct spacing of the meals, and getting both the child and the parent accustomed to this new lifestyle. Initiating the ketogenic diet requires too many changes and commitments on the family’s part, and too much commitment from the whole keto team, to have someone not give it a proper chance.