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Diet therapy for epilepsy
Diet therapy can sometimes be a good alternative for childhood epilepsy when medications cannot control seizures or have intolerable side effects. While diet therapy is often worth trying in general, it can be especially helpful for certain epilepsy syndromes, such as myoclonic astatic epilepsy (Doose syndrome).
There are now a number of different diets that can be used for epilepsy: the Classic Ketogenic Diet, the Modified Atkins Diet, the Medium Chain Triglyceride Diet and the Low Glycemic Index Treatment Diet. The choice is made after the initial consultation, and depends on the epilepsy diagnosis, the child’s age and feeding habits, and family needs and preferences.
Ketogenic diets are the treatment of choice for glucose transporter deficiency (GLUT1DS) and should be considered in pyruvate dehydrogenase deficiency (PDH) and other mitochondrial disorders, even when these disorders do not cause seizures.
Diet therapy takes care and dedication, but it may offer children a better chance of seizure control than trying a new anticonvulsant drug. Unfortunately, we don’t yet have good predictors of whether a child will respond to diet therapy, so we usually recommend a trial of three to four months.
About the ketogenic diet
Known for more than a century, the ketogenic diet has recently come back into use for epilepsy and has been shown to be effective for many children when drugs fail. It can provide control of seizures for about 30 percent of children with epilepsy.
In its strictest form, the ketogenic diet provides more than 90 percent of its calories through fat (as compared to the 25 to 40 percent usually recommended for children). When we burn fat for energy, rather than glucose from carbohydrates, we produce compounds known as ketone bodies—hence the name “ketogenic diet.” The increase in ketones—referred to as ketosis—is thought to have an anticonvulsant effect in the brain, although how this works is still something of a mystery.
The ketogenic diet is not a “natural” diet, or one to be undertaken lightly. It’s highly precise and restrictive and can cause side effects. It is started under medical supervision and requires strong family commitment. The details are important!
Children for whom the diet is effective usually stay on the ketogenic diet for about two years. We then slowly transition them back to a regular diet, and some are able to remain seizure-free.
Starting the ketogenic diet
Before embarking on the ketogenic diet, we assess the child’s nutritional status, diet preferences and calorie needs. If the diet seems like it will be feasible for the family, we customize it to each child to achieve optimal seizure control while meeting daily energy and nutrient needs. Sometimes, if extra attention is needed, we start the diet in the hospital. Special ketogenic formulas are available for infants or children who need to be fed though a tube.
It can be challenging to maintain ketosis while providing enjoyable meals with enough calories for normal growth. Our long-running Ketogenic Diet Clinic is anchored by nutritionists who specialize in the diet and can provide detailed counseling. Families using the classic ketogenic diet will receive a selection of recipes individualized for their child. A gram scale will be needed to precisely weigh food ingredients (thanks to support from the Tyler Foundation, we have been able to help with obtaining a gram scale when necessary). Our nurses and social workers experienced in diet treatment can provide additional support.
Because ketogenic diets are not nutritionally balanced, children will also need vitamin and mineral supplements. Ketone levels should be periodically checked and the diet tweaked as needed to maintain ketosis.
Ketosis can have serious side effects, such as severe constipation and kidney stones. Before prescribing a ketogenic diet, we make sure that the child has no other medical condition that might make the diet unsafe. Some children may need extra surveillance, such as those with a family history of kidney stones. Good hydration is very important.
Though the diet is challenging, it’s easier than it used to be. As interest in the diet has increased, “keto-friendly” products have become more readily available, like coconut oil, low-carbohydrate noodles, sugar-free syrups and flavorings and nut flours for baking. These are allowing a wider range of child-friendly, palatable ketogenic meals.
Click here for a sample ketogenic menu.
Teens and young adults who are becoming more independent often find the ketogenic diet too difficult to follow. Dietary options for epilepsy have expanded in recent years to include the modified Atkins diet and the low-glycemic index treatment diet. The latter diet does not necessarily cause ketosis, and may instead curb seizures by lowering glucose levels in the blood and possibly in brain cells.
While still restrictive compared to a “normal” diet, these diets are less structured than the ketogenic diet and easier to incorporate into normal life. They are easier to follow when eating out. The scientific evidence for their efficacy is still preliminary.
As with the ketogenic diet, families using these diets will receive detailed education about how to carry out the diets at home, allowing them increased flexibility. It is possible and sometimes helpful to transition between the various diets.
For more information
Online resources such as the Charlie Foundation provide a wealth of information about the diet therapy for epilepsy and can connect patients with diet clinics, providing keto-friendly product information and offering diet training and family support. Online forums allow families to support one another, share information about keto-friendly foods and swap recipes.
New software like the Ketocalculator© allows families to devise their own keto-compliant meals in collaboration with their nutritionists.
This sample daily menu is for a child who needs 1,400 calories per day and a ketogenic ratio of 4 to 1 (fat to combined protein and carbohydrate). For precision, foods must be weighed on a gram scale. Fats are provided from heavy cream, butter and vegetable oils, and sweets and other carbohydrate-rich foods are eliminated.
Scrambled eggs made with the following ingredients:
Strawberries: 12 g (1 medium)
Quesadilla with creamy avocado dip made with the following ingredients:
Chicken salad served on an iceberg lettuce leaf made with:
Macadamia nuts: 26 g (0.9 oz)
Orange: 15 g (one-tenth of an orange)
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