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The Ketogenic Diet for Controlling Epilepsy

  • Date: 2014/09/23 (Rev: 2015/09/19) Disabled World - Disabled World
  • Synopsis : Information regarding the ketogenic diet as a method for controlling epilepsy and epileptic seizures, particularly in children.

Main Document

When parents of children with epilepsy first hear about the ketogenic diet, they tend to be somewhat skeptical. A diet that can control epilepsy and stop seizures without medications seems somewhat like a scam. Yet the ketogenic diet is both real and legitimate. The diet works well with a number of people. The catch is that it is extremely demanding and is hard to follow. The fact is - it is so hard to follow that the majority of doctors recommend it only for people who have not been able to control seizures through medications.

The ketogenic diet is defined as a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet forces the body to burn fats rather than carbohydrates.

The ketogenic diet is an extremely high-fat diet that requires a child to consume 4 times as many fat calories as calories from carbohydrates or protein. A meal may include a small portion of chicken, a little bit of fruit and a whole lot of fat; usually cream or butter. To be plain, it is a hard diet to swallow.

A child might begin the diet in the hospital, so doctors and nurses can observe the first few days. A child will most likely need to go without any food for 36-48 hours before starting the ketogenic diet. After that, food is gradually increased over a few days. The diet does not provide all of the vitamins a person's body needs, so a child will probably have to take sugar-free vitamin supplements as well.

Why the Ketogenic Diet Works

To be plain, no one really understands why the ketogenic diet works. It was developed in the 1920's and does work well. What is known is how it affects a person's body.

Through reduction of the number of carbohydrates a person consumes, their body is forced to burn fat for energy - a process referred to as, 'ketosis.' Ketosis is the same process that begins when a person is fasting, on purpose or due to starvation. Fasting has been a traditional seizure treatment for centuries.

Something else that is not known is how ketosis helps epilepsy, but it does help. Researchers at Johns Hopkins University studied 150 children with epilepsy in a study. After a year on the ketogenic diet, half of these children experienced 50% fewer seizures. One-fourth of the children reduced their seizure activity by an incredible 90%. After a few years on the diet, a number of these children did not need to take epilepsy medications at all.

The name, 'ketogenic,' means that it produces ketones in a person's body. Ketones are formed when a person's body uses fat for its source of energy. Usually, a person's body uses carbohydrates such as bread, sugar, or pasta for its fuel - but because the ketogenic diet is very low in carbohydrates, fats become the body's fuel instead. Ketones are not dangerous; they can be detected in a person's urine, blood and on their breath. Ketones are one of the more likely mechanisms of action of the diet, with higher ketone levels often leading to improved seizure control. There are; however, many other theories as to why the diet works.

People the Ketogenic Diet Will Help

Doctors usually recommend the ketogenic diet for children whose seizures have not responded to several different seizures medications. It is particularly recommended for children with the, 'Lennox-Gastaut syndrome.' The diet is usually not recommended for adults, mainly because the restricted food choices make it difficult to follow. Studies done on the use of the diet on adults; however, show that it appears to work just as well.

The ketogenic diet has been shown in small studies to be particularly helpful for some epilepsy conditions. These conditions include:

Using a formula-only ketogenic diet for infants and gastronomy-tube fed children might lead to better compliance and possibly even improved efficacy. The diet works well for children with focal seizures, yet may be less likely to lead to an immediate seizure-free result. Generally, the diet can always be considered as long as there are no clear mitochondrial or metabolic reasons not to use it.

Example of the Diet

The typical ketogenic diet, also referred to as the, 'long-chain triglyceride diet,' provides 3-4 grams of fat for every 1 gram of protein or carbohydrate. A dietitian recommends a daily diet that contains 75-100 calories for every kilogram of body weight and 1-2 grams of protein for every kilogram of body weight. If the diet sounds complicated; well...it is. Due to the complicated nature of the diet, parents need a dietitian's assistance.

A ketogenic diet, 'ratio,' is the ratio of fat to carbohydrate and protein grams combined. A 4 to 1 ratio is stricter than a 3 to 1 ratio and is commonly used for children. A 3 to 1 ratio is typically used for infants, adolescents and children who require higher amounts of carbohydrates or proteins for another reason.

The kinds of foods that provide fat for the ketogenic diet are heavy whipping cream, butter, mayonnaise and oils such as olive or canola oil. Because the amount of carbohydrate and protein in the diet must be restricted, it is very important to prepare meals carefully. No other sources of carbohydrates may be eaten - even toothpaste may have some sugar in it. The ketogenic diet is supervised by a dietitian who monitors a person's nutrition and has the ability to teach parents and the child concerning what can and cannot be eaten.

The Ketogenic Diet Process

The diet is usually started while the person is in the hospital. The person typically starts by fasting, with the exception of water, under close medical supervision for a period of 24 hours. For example; a child may go into the hospital on Monday, begin fasting at 6:00 PM and continue to fast having only water until 6:00 AM on Tuesday. The ketogenic diet is started, either by slowly increasing the calories or the ratio.

There is growing evidence that fasting is most likely unnecessary for long-term efficacy, although it does lead to faster onset of ketosis. The main reason for admission in most centers is to monitor for any increase in seizures on the diet, to ensure all medications are carbohydrate free, as well as to educate parents and family members. Additional facts about the ketogenic diet include the following:

  • Children who are on the ketogenic diet continue to take seizure medications
  • If the person goes off the diet for even a single meal it may lose its good effect
  • When medications can be lowered depends on the person and the comfort level of a neurologist
  • Some people are able to take smaller doses or fewer medications than before they started the diet
  • It can be hard to follow the diet 100%, especially if there are other children at home on a regular diet
  • Evidence suggests lowering medications can be done safely in some children as soon as the diet is started
  • Small children who have free access to the refrigerator are tempted by foods that are not on the ketogenic diet

Ketogenic Diet Side-Effects

Someone beginning the ketogenic diet might feel sluggish for a few days. The experience may worsen if the person is sick at the same time as they start the diet. Due to this, it is important to encourage carbohydrate-free fluids while the person is ill. Additional side-effects that may happen if the person remains on the diet for a long time include the following:

  • Dehydration
  • Constipation
  • Kidney stones
  • Bone fractures
  • Slowed growth or weight gain
  • High cholesterol levels in the blood

Medication Changes and the Ketogenic Diet

The ketogenic diet does not provide all the vitamins and minerals found in a balanced diet, so a dietitian will recommend vitamin and mineral supplements. The most important of these are vitamin D and calcium to prevent thinning bones, as well as folic acid and iron. There are no anticonvulsants that should be stopped while a person is on the diet. Topiramate and zonisamide do not have a higher risk of acidosis or kidney stones while a person is on the diet. Valproic acid does not lead to carnitine deficiency or other difficulties while on the diet either. According to recent studies, medication levels do not change while a person is on the diet.

Early on, a doctor will usually see the person every 1-3 months. Blood and urine tests are done to ensure there are no medical issues. The person's weight and height are measured to find out if their growth has slowed down. As the person gains weight, their diet might need to be adjusted by their dietitian.

Stopping the Ketogenic Diet

If a person's seizures have been well controlled for a period of time, usually 2 years, their doctor may suggest going off of the ketogenic diet. The person is usually gradually taken off of the diet over a period of several months or even longer. The person's seizures might worsen if the ketogenic diet is stopped at once. Children usually continue to take seizure medication after they stop the diet. In a number of situations, the diet has led to significant, yet not total, seizure control. People may choose to remain on the ketogenic diet for several years because of this factor.

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