The ketogenic diet for epilepsy factsheet

Introduction

The ketogenic diet is a medically supervised treatment for children with epilepsy, especially when seizures don’t respond to medication. 

The diet is high in fat and low in carbohydrates. This helps the body use fat for energy instead of carbohydrates, which produces ketones. Ketones are acids that are made by the body when it burns fat instead of glucose for energy.

The ketogenic diet has been used since the 1920’s to manage epilepsy that is hard to control with medication. It is not a “natural” therapy or a fad diet, and must be strictly followed with regular medical checks.

There are two main types of ketogenic diets: 

  • The classical Ketogenic Diet (KD)
  • The Modified Atkins Diet (MAD).

The ketogenic diet is only suitable for children who: 

  • have seizures that are not controlled by medication
  • have certain metabolic conditions like GLUT 1 deficiency. 

It works best for children with specific types of seizures, like: 

  • myoclonic-atonic seizures
  • Dravet syndrome
  • infantile spasms.

 Preparing for the diet

Before your child starts the ketogenic diet, they will need a full medical check to make sure the diet is safe for them. 

The checks may include:

  • looking at your child’s medical and eating history
  • tests to rule out any health problems that could make the diet unsafe, like having trouble processing fats
  • seeing a dietitian to work out how much food your child needs, including the right balance of fats, protein, and carbohydrates
  • blood and urine tests
  • heart and brain tests, like an ECG to check the heart and EEG to check brain activity.

You will also be given information and guidance about:

  • how the diet works
  • how to change your child’s diet
  • possible side effects
  • how to check if it's helping with seizures. 

You and your child will have ongoing support to help manage the diet safely.

During the diet

Starting the diet

The classical ketogenic diet is usually started in hospital, where doctors and nurses can watch your child closely. They may need to stay in hospital for 4 - 5 days. 

Other versions, like the Modified Atkins Diet (MAD), are usually started at home with regular check-ups.

While starting the diet:

  • your child’s blood sugar levels will be checked often
  • your child might feel tired or low in energy as their body gets used to the diet
  • blood tests will be done to check your child’s progress and spot any problems early.

Monitoring the diet

After your child starts the diet, they will have regular appointments to check how things are going. These check-ups are important, especially in the first few months.

If the diet is helping to reduce seizures, your child’s doctor may slowly reduce their epilepsy medication. This will only happen under medical supervision.

 After the diet

Trial period

The ketogenic diet is usually trialled for three months to see if it helps with seizures. If it is helpful, the diet will be continued. If it does not help, it can be stopped after this trial period. 

Long-Term Considerations

Most children who benefit from the ketogenic diet will stay on it for around two years. After that, your child’s neurologist will slowly help them come off the diet. This step is done carefully to make sure seizure control continues.

 Management

Possible side effects

While on the ketogenic diet, your child may experience side effects, including:

Being on the diet for a long time can increase the risk of other longer term side effects, including:

  • kidney stones
  • high cholesterol
  • slowed growth or weight gain
  • bone fractures
  • vitamin deficiencies.

Regular check-ups are important so doctors can spot and manage any side effects early.

Success rates

Studies show that the ketogenic diet helps reduce seizures in many children:

  • around half of children on the diet have more than 50% fewer seizures
  • about one in three children have around 90% fewer seizures
  • some children may stop having seizures altogether.

Resources and more information