Certain children who are having problems with medications, or whose seizures are not being well controlled, may be placed on a special diet called the ketogenic diet. This type of diet is low in carbohydrates and high in protein and fat. No one knows exactly how the diet works, but some children do become seizure-free when put on the diet.
The ketogenic diet works in approximately half of all children with intractable epilepsy; however, the diet does not work for everyone.
What is the ketogenic diet?
The ketogenic diet is very high in fat (about 90 percent of the calories come from fat). Protein is given in amounts to help promote growth. A very small amount of carbohydrate is included in the diet. This very high-fat, low-carbohydrate diet causes the body to make ketones. Fat is used for energy instead of sugars and carbohydrates. If your child eats too many carbohydrates, then his body may not make ketones. Ketones are the measurement we use to see how the body is burning the fat. The presence of ketones is important to the success of the diet.
- Is managed by a doctor. A dietician will create the plan.
- Contains three to five times as much fat as carbohydrate and protein.
- Makes the body burn fat for energy instead of glucose (sugar).
- Strictly limits calories
How does the diet work?
No one knows exactly how the diet works, but some children do become seizure-free when put on the diet. The body’s main fuel is sugar (glucose). Normally, the body burns sugar to make energy and maintain a normal blood sugar level. After the glucose is gone, the body begins to burn fat for fuel. The body does not burn fat completely; but breaks it down into ketones in the blood.
When is the ketogenic diet used?
The diet is used for people of any age with myoclonic, absence, and atonic (drop) seizures. It is even used in some babies through a special formula. The diet may help some children with generalized tonic-clonic (grand-mal) seizures. It may also be used when medicines do not work or cause unwanted side effects.
What does my child eat?
Most ketogenic diets are planned to provide enough protein in the diet, but only allow a few carbohydrates. About 90 percent of your child’s calories will come from fat. We want to make your child's diet as close to normal as possible. We teach parents how to hide fat in meals. Each diet is created specifically for that child. We see what foods your child likes and create recipes around those foods.
- Common foods on the diet include whipping cream, real butter, bacon, hotdogs and eggs.
- Fruits and vegetables are very limited.
- Starches such as pasta and bread are not allowed.
- Calcium, vitamin and mineral (sugar-free) supplements are needed since the diet does not provide complete nutrition.
- Medications are changed to tablet form to provide the lowest carbohydrates. 1000mg of carbs are allowed from medications. Some medications in tablet form still contain some sugar.
- Toothpaste must be sugar-free.
What is an example of the diet?
Sample Ketogenic meal:
- 14 grams applesauce (1 tablespoon)
- 13 grams Egg Beaters®
- 19 grams butter (4 tsp. butter)
- 30 grams of 36 percent cream (2 tablespoons of whipping cream)
Sample Ketogenic Shake:
- 36 grams raw egg (about 1/2 an egg)
- 270 grams heavy cream
How do I know if the diet is right for my child?
Your child's physician will determine if this diet is right for your child.
How do I get started?
When the ketogenic diet is started, your child will be admitted to the hospital so he can be closely monitored. It may take a few days in the hospital to get the diet started and for you to learn how to plan the diet. While in the hospital, your child will need to fast for a couple of hours before having lab work done.
Your child’s nutritionist will:
- Decide on your child’s calorie needs based on his height, weight and activity level.
- Take a diet history along with a list of foods your child prefers.
Your child’s doctor and the nursing staff will:
- Monitor your child.
- Create special meals help to get your child used to a high-fat diet and allow ketones to build.
Before your child can go home:
- He must eat three full meals without vomiting and have stable blood glucose and urine ketone levels.
- Your child’s nutritionist will teach you about weighing foods, planning meals, and dealing with problems that may come up with the diet at home. She can also help you review your child’s diet and set new limits as needed.
How long is the diet used?
Children usually stay on the diet about two years. At Children's, we require a 3 month commitment to the diet. This allows the team to make changes to the diet to better help with seizure control.
If the diet helps to decrease seizures, it is usually continued for a two-year period. While on the diet, your child will need regular lab tests and visits to his doctor. Weaning off seizure medicines varies from child to child. It is not always possible to do.
When it is time for your child to come off (wean) of the diet
- Your child’s neurologist (a doctor who treats diseases of the nervous system) will check his progress, seizure control and EEG before starting the weaning process.
- Weaning means that your child will come off of the ketogenic diet over time – not all at once.
- Fat content in the diet is slowly decreased as the carbohydrate intake is increased.
- Your child will slowly return to a normal eating pattern.
- If seizures return during the weaning process, the previous diet is resumed.
What should I buy to assist with the diet?
- Food scale that is accurate to 0.1gram
- Ketostiks, which are available at local pharmacies to test urine for ketones. You will be taught how to do this when your child begins the diet.
- Sugar-free toothpaste
- Sugar-free multivitamin and calcium