Common questions from parents about the Ketogenic Diet
- What is the ketogenic diet?
- How does the ketogenic diet work?
- What type of seizures is the ketogenic diet effective for?
- Is my child a good candidate for the ketogenic diet?
- How do I locate an institution that is currently treating children successfully with the ketogenic diet?
- How long with my child have to be in the hospital?
- How soon will we know if the diet is working?
- How can my child go on diet if he is allergic or intolerant to dairy products?
- How will we be able to manage birthdays and holidays?
- How will my child feel on this diet?
- What if my child “cheats” on the diet?
- Will anti-seizure medications be discontinued after my child goes on the diet?
- If the diet seems to be working, how long will my child be on the diet?
- Can the ketogenic diet be used in adults?
- Can the ketogenic diet be used for conditions other than epilepsy?
- Can the ketogenic diet be used for epilepsy in animals?
What is the ketogenic diet?
The ketogenic diet is a special diet used to treat seizures. It was initially studied in the 1920’s as a treatment option for those with intractable epilepsy. Since then, medications have replaced the diet, but there is now a resurgence of interest in the Ketogenic diet. The diet is high in fat, and low in carbohydrate and protein, which results in ketosis. In addition, fluids are limited, which helps contribute to the diet’s success. This ketotic state exerts an anti-epileptic effect, though its precise mechanism of action is not completely understood.
How does the ketogenic diet work?
The diet is high in fat, and low in carbohydrate and protein, which results in ketosis. In addition, fluids are limited, which helps contribute to the diet’s success. This ketotic state exerts an anti-epileptic effect, though its precise mechanism of action is not completely understood.
What type of seizures is the ketogenic diet effective for?
It appear to be effective for multiple types of seizures. However, we have found it to be most effective for myoclonic seizures and “minor motor” seizures. The diet also seems to be helpful for other type of seizures, such as tonic-clonic seizures and complex partial seizures.
Is my child a good candidate for the ketogenic diet?
We recommend that you consult your physician or neurologist about the appropriateness of the ketogenic diet for your childs seizure disorder. You should also contact other keto providers and families who have been on the diet. Usually the ketogenic diet is used as a secondary method of treatment, that is, when conventional anti-seizure medicatiozns do not seem to adequately control seizures. Also, if the adverse effects of the anti-seizure medications are too great, the diet can also be considered (so that medications can be reduced).
How do I locate an institution that is currently treating children successfully with the ketogenic diet?
Ask your childs neurologist for a referral to a, preferably close to home, site that will evaluate your child for appropriateness to start the ketogenic diet. Please note that as there are a limited number of institutions that have an active keto team, your child may have to wait a month or more to be admitted. You can find a partial list of centers/programs that are offering the ketogenic diet on our pages.
How long with my child have to be in the hospital?
Uncomplicated hospital admissions scheduled to initiate the ketogenic diet are typically 4-5 days in duration (Monday-Friday).2. How long does my child stay on the diet? If the diet proves to be a worthwile form of therapy usually, the diet is followed for 2 years and weaned in the 3rd year, similiar to what might be tried with an antiepeleptic drug (AED).
How soon will we know if the diet is working?
The diets effectiveness is seen in varrying amounts of time among individuals. It can be immediate, while the diet is being initiated in the hospital, or it may take several months. Remember, seizures are different for all children, some have several daily and other only once every 6 months.
How can my child go on diet if he is allergic or intolerant to dairy products?
The ketogenic diet can be planned for children who cannot tolerate milk or milk products; this is true for either oral or gastrostomy fed keto kids. Heavy whip cream does not need to be a component of the diet, it can be replaced with other food sources of carbohydrate, fat and protein and produce the same degree of ketosis. For children fed by a gastrostomy, nasogastric or jejunal feeding tube, RCF (Ross Carbohydrate Free) is recommended. The protein in dairy products, which is the allergen, is replaced by a soy protein in RCF, thus there is no allergic potential, as long as the child is not allergic
How will we be able to manage birthdays and holidays?
Most of us are used to celebrating special occasions with friends, family, fun and yes, food. These days can still be special, but they do not need to be food centered for the ketogenic kids. For instance, at Halloween, trick or treat candy can be traded in for nickles to buy a new toy or rent a video. Birthday candles can be stuck into Play Dough and placed on a gift or the table. The rest of the family need not suffer through the holidays, however, being sensitive to a keto kids unique diet therapy is warranted.
How will my child feel on this diet?
Children do seem to respond differently to the different stages of the ketogenic diet. Alot of this depends on what the childs baseline awake state is. Most often, during the fasting your child may feel sleepy, lethargic, and cranky. Then as the diet begins, lethargy may continue as well as nausea and vomiting, this may be due to excessive ketosis, or it the side effects of the change in metabolism from using glucose as a primary energy source to using fats instead. It may be also related to a change in drug levels. In time, children should return to their normal, or close to normal activity level; some keto kids even get more energetic with time? One common, side effects of a high fat diet for everyone is a slower gastric emptying time, thus even though the portions may look smaller, the food will stay in the stomach longer and give a longer feeling of satiety.
What if my child “cheats” on the diet?
Cheating, or mistakes happen for various reasons, it can be purposeful by the child, or an incorrect amount of food weighed out and realized retrospectively. Trying to mimimize this is important, but being prepared for what might likely occurr at least once is equally important. Depending on how big the extra amount of food is/was depends on the treatment. Often times, it is safe just to recognize the mistake and pick up with the regular ketogenic meal plan at the next meal.
Will anti-seizure medications be discontinued after my child goes on the diet?
Well, that depends on the individual circumstances. In most patients anti-seizure medications are reduced. If they are on polytherapy, we usually try to eliminate some of the medications, perhaps maintaining just one medication. If they start the diet while on just one medication, we may try to reduce the dosage. If the patient is on a barbiturate, we do routinely decrease the dose when they go on the diet, since the diet seems to raise the barbiturate levels.
If the diet seems to be working, how long will my child be on the diet?
If your child remains seizure-free for 2 years, most neurologist would recommend switching back to a normal diet. This “wean” off the ketogenic diet is analogous to weaning anti-seizure medication after a seizure-free interval. The success rates of the ability of children to remain seizure-free off the diet after a successful treatment (with the diet) is not well studied.
Can the ketogenic diet be used in adults?
In general, the diet does not seem to be as effective in adults. Most studies have been restricted to children and a few adolescents. In these studies, people have pointed out that the diet does not seem to work as well in older children, and seems to work best in children aged 1-10 years. The reason is not clear, but some have felt that older adolescents and adults may not make or use ketones quite so well. There are currently no published adult studies.
Can the ketogenic diet be used for conditions other than epilepsy?
So far, the only condition that the diet seems to be effective is epilepsy. It also seems to useful for treating seizures in a rare metabolic condition that begins in infancy (such as glucose transport protein defects). In this condition inadequate amounts of glucose (sugar) gets transported to the brain. There is very little information on the use of the diet in other conditions, such as multiple sclerosis, diabetes, obesity, etc.
Can the ketogenic diet be used for epilepsy in animals?
The use of the ketogenic diet in animals is as yet undefined. Experimental models using rats have been developed, but the efficacy and side effects of the diet in other animals is not known. We would recommend that people consult with their Veterinarian about the ketogenic diet in their pets.