Treatments – Ketogenic Diet

Who is eligible for the ketogenic diet?

The Ketogenic Diet is intended for children who are significantly disabled by their seizures. It is considered after most medications have been tried. The ketogenic diet has been most effective in children who are 2-12 years old. It is usually used for children who have absence, myoclonic, tonic, atonic (drop) and convulsive seizures. The Strong Epilepsy Center (SEC) Ketogenic Team evaluates each child prior to the start of the diet. The SEC Ketogenic Team consists of a subspecialized Registered Dietitian, Nurse Practitioner, and Neurologist.

Before a child goes on the Ketogenic Diet, a neurologist must do a careful evaluation. During the prediet evaluation and throughout the diet, the Clinical Nutritionist provides continuous assistance because appropriate parameters must be established and maintained. The Clinical Nutritionist will also supply very specific information about all the necessary and allowed dietary supplements. This is important to assure proper growth for the child.

At the initiation of the ketogenic diet, a 4-5 day hospital stay is necessary to monitor the effects of the diet and to complete all the required teaching.

In the first weeks after starting the diet, intensive assistance is given in order to avoid the possible side effects of vomiting, diarrhea, and dehydration. Metabolism must be carefully monitored. The specialized team must balance the effects of the diet with the effects of the antiepileptic medications. Sometimes antiepileptic medications can be decreased.

The diet is tailored to the individual child and the Clinical Nutritionist calculates various recipes which are suitable for that particular child. The ratio of dietary fat to the total of carbohydrate + protein is very important and fine-tuning the proper ratio is the job of the experienced Clinical Nutritionist.

How does the diet work?

The Ketogenic Diet is designed to establish and maintain ketosis. The term, ketosis, refers to the excessive formation of ketones in the blood. Glucose, a carbohydrate, is the brain’s preferred energy source. However, when the supply of carbohydrate is limited, the body produces ketones by burning fat tissue for energy.  The brain then uses these ketones for energy. A similar accumulation of ketones occurs when a patient consumes very large amounts of fat and very small amounts of carbohydrate and protein. This accumulation of ketones in the blood tends to inhibit seizures. Despite substantial research, we do not know precisely why the diet works.

What makes up the diet?

The diet is about 80% fat and 20% protein and carbohydrate. Meals consist of meat, fish, poultry served with heavy cream, margarine or other fat, mayonnaise or oil and a small amount of vegetables or fruits. The meal plan is low in calories and adequate in protein. The diet lacks needed vitamins and minerals, so a sugar-free multivitamin and a calcium supplement are taken each day. In some cases, patients also take a carnitine supplement to help with fat metabolism. The diet is planned by the Clinical Nutritionist, using a child’s food preferences as much as possible.

Can my child go on the diet if he/she is allergic or intolerant to dairy products or requires a special feeding tube?

The Ketogenic Diet can be planned for children who cannot tolerate milk or milk products. A specialized tube feeding product is also available.

How will my child feel on this diet?

Children seem to respond differently to the different stages of the Ketogenic Diet. In the beginning, a child usually feels sleepy or cranky. There is occasional nausea, diarrhea (at the beginning due to the fat in the diet) or constipation (due to low fluid and fiber intake). Some changes are due to medication levels which are monitored and adjusted as needed. Ketosis can also decrease appetite and the high fat diet can slow the time it takes for the stomach to empty, giving the child a feeling of fullness.

How long will my child be on the diet?

It is recommended that a patient begin with a trial period of at least 3 months to evaluate the diet’s effectiveness. Most children remain on the diet for 2 years. Remember that seizures are different for children and it may take time to see the effects of the diet.

Are there complications?

When we start the diet, the child’s blood glucose (sugar) level may drop. This is checked regularly and treated as needed. Weight gain is minimal and the child’s growth rate may slow down. Growth goes back to the normal rate after the child comes off the diet. Occasionally, there is diarrhea or constipation that can be treated with diet changes or medications. It is not known whether or not the diet affects the long term development of heart disease.

Is the Ketogenic Diet hard to learn?   

The Clinical Nutritionist in Strong Epilepsy Center will begin working with you and your child before the child starts the diet. She will continue to work with you not only in the hospital but also when your child is an outpatient. The Clinical Nutritionist provides instruction on how to use a digital gram scale to measure foods and fluids using menus carefully calculated for your child. The diet must be followed exactly, just like the pieces of a puzzle. The Ketogenic Diet Nutritionist also teaches parents how to monitor their child’s urinary ketones as well as instructing them how to monitor blood glucose and ketone levels using a digital monitor. Your child’s progress is monitored during regular clinic visits and ongoing communication with the Clinical Nutritionist.

What is the success rate of the Ketogenic Diet?

Like drug therapy, the Ketogenic Diet has varying levels of success. Approximately 50% improve with about 20% seizure free. About 25% do not respond at all.

How do I find out more information?

Contact the Strong Epilepsy Center Office at 585-341-7420

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