The ketogenic diet is a way of treating patients with poorly controlled epilepsy. The ketogenic diet is used when a child's seizures have not been controlled with medications or when a child has had bad side effects from the various seizure drugs. The ketogenic diet requires extra time and effort and must be followed exactly, especially during the first months.
The word "ketogenic" refers to ketone bodies that come from the breakdown of fat. The ketogenic diet is specifically planned to meet all of your child's calorie needs for growth and development, but it does contain high fat, low carbohydrate, and adequate protein. Instead of getting energy from sugar, the brain will get energy from the breakdown of fat. Exactly how this helps to control seizures is not known; both high fat and low carbohydrate may be important for seizure control. About half of the patients on this diet have more than 50% reduction in the number of seizures; about 20-30% may have more than 90% reduction in seizures. Less than 10% of patients on the ketogenic diet may have no seizures at all.
The ketogenic diet is not new. It has been effectively used for many years and has decreased the rate of seizures in thousands of patients. Before beginning the diet, please become as familiar as possible with the reasons for using the diet. It is very important that you learn what you need to do in planning and preparing the diet. In addition, you should be aware of the possible side effects of the diet.
You will be meeting with the ketogenic diet team when your child is admitted to the hospital, and frequently while your child is on the diet. The team is made up of a neurologist, a registered dietitian, and a registered nurse (ketogenic diet coordinator). The ketogenic diet should never be started without being supervised by a team of professionals.
Once your child is admitted to the hospital, he or she will receive only small amounts of water or sugar-free liquids at first. Do not allow your child to eat or drink anything other than what is recommended by the dietitian.
Your child will begin the ketogenic diet within 24 hours of being admitted to the hospital. The diet contains a fixed amount of calories, carbohydrate, fat, and protein. Each meal has to be measured exactly and all the ingredients weighed in this diet. For young infants, pre-made, ready-to-use ketogenic formulas are available for use. Your child may also need supplements such as vitamins and extra calcium.
Most children accept the ketogenic diet well. While on this diet, your child may become sleepy, may vomit, or may refuse the first few meals. These are usually only short-term problems.
Your child may respond to the diet within the first 48 hours. Usually, however, the effectiveness of the diet cannot be judged for 1 to 3 months. Anyone willing to try the diet should stick with it for at least 3 months to see if the diet is making a difference for the patient.
If the diet is successful in controlling seizures, anti-epileptic medicines may be reduced later. It is possible that your child may still need some drug treatment for best control of seizures.
Before leaving the hospital, you will be shown how to check for ketone bodies in the urine. You must do this at least once a day in the first few months.
You will receive meal plans before you leave the hospital. If you have any problems while you are at home, the ketogenic diet team will be available to answer your questions. If your child becomes seizure-free, you will only have to test urine ketone levels if the seizures return.
If your child is helped by the diet and seizures are better controlled, your child may remain on the ketogenic diet for 2 to 3 years, or longer. The length of time on the diet will be determined by several factors, including how well the diet helps your child, whether your child can be weaned off seizure medications, and your willingness to continue the diet.