Pediatric ketogenic (keto) diet

What is the pediatric ketogenic (keto) diet?

The ketogenic diet can be given by mouth, through a gastrostomy tube (if your child has trouble feeding themselves) or through a combination of the two. With this medically supervised diet, 90% of the calories are obtained from fat. Every meal is calculated, weighed and measured.

On a typical diet, our cells break down carbohydrates (sugars) to fuel the cells of our body and our brain.

By restricting carbohydrates on the ketogenic diet, the body must break down fats to create energy for the body. This process creates ketones, which are used very efficiently by the brain as a source of energy. It also creates other mechanisms that help control seizures. On the ketogenic diet, blood sugar levels are also at lower levels, which may help with inflammation and a reduction in seizures.

Typically, children stay on this diet for two years, assuming they tolerate it well.

Other diet options for managing epilepsy

The ketogenic diet isn’t for everyone. We also offer two other diet options for children based on their needs.

1. Modified Atkins diet (MAD) - This is a high protein diet, but with more fat. Instead of weighing and measuring food like with the ketogenic diet, we tell children we want their food to glisten with fat (like with butter, mayonnaise and oils).

   • Carbohydrates are limited to 10 grams (for example, six ounces of nonfat Greek yogurt) a day, but they can gradually increase to 20 grams a day.

2. Low glycemic index diet - We know that when a child eats a certain food that has a carbohydrate, it elevates their blood sugar to a certain level. The low glycemic index diet focuses on keeping blood sugar levels lower, which could help with inflammation and seizures.

   • Instead of focusing on high-fat food and measurements, the low glycemic index diet allows children to have more flexibility. For example: Unlike the ketogenic diet, this diet allows children to eat bread.

   • They do have to think more carefully about the carbohydrates they’re getting. For example, we’d want them to eat stone-ground whole wheat bread instead of highly refined white bread.

What are the benefits of the pediatric ketogenic (keto) diet?

There are three key benefits of the ketogenic diet:

1. Control and reduce seizures in some children

2. Treat conditions resulting from issues in carbohydrate metabolism or its use in the brain

3. Minimize the amount of anti-seizure medications that some children take

What are the side effects of the pediatric ketogenic (keto) diet?

Here are four of the more common possible side effects:

1. Constipation is the most common side effect of this diet because it is low in fiber.

2. Some children will refuse food or have a decreased appetite. Because of this, we monitor children’s growth carefully.

3. The diet can be a poor source of certain important vitamins and minerals, so these must be supplemented.

4. Children may develop too much acidity in their blood (metabolic acidosis), which we monitor closely with blood tests.

What are the risks of the pediatric ketogenic (keto) diet?

The ketogenic diet doesn’t always work for every child. If the diet isn’t significantly reducing your child’s seizures after about three months, we’ll take your child off it. We throughly screen – with a detailed history and blood work – to make sure your child is a good candidate for the ketogenic diet.

Here’s why:

• Your child may have a metabolic issue, like a problem breaking down fat

• Your child may be more at risk of developing kidney stones

• Your child may be more at risk of developing a fatty liver disease (an increase build-up of fat in the liver)

What are Children’s Health’s outcome metrics for the pediatric ketogenic (keto) diet?

Since 2005, we’ve treated more than 300 children on the ketogenic diet. Before the diet starts, there’s no way of knowing who will be successful and who won’t be.

Here’s a look at the results we’ve seen:

• 1 in 3 children will have a greater than 50% reduction in seizures

• 1 in 3 children will have about a 50% reduction in seizures

• 1 in 3 children will not see significant improvement in their seizures

What to expect with the pediatric ketogenic (keto) diet

Our team of epileptologists, dietitians, nurse practitioners, the kitchen staff at Children’s Health and the pharmacy team all work together to make sure the ketogenic diet is right for you and your family.

What to expect before starting the pediatric ketogenic (keto) diet

Because this is a medically supervised diet, your child has to be referred to our epilepsy program. We want to see if they are a good candidate for the diet. You’ll learn more about the ketogenic diet from the epileptologist and dietician during the first appointment. Then, we’ll do blood work to make sure your child is safe to start the ketogenic diet. This includes making sure they don’t have a metabolic issue, like a problem breaking down fat.

During this appointment, we’ll assess for:

• Food intolerances

• Overall well-being

• Your child’s eating habits

Next, we’ll bring your child into the hospital for four to five days. Every day, we will:

• Do blood work to measure for ketones and make sure the child’s electrolytes are stable

• Provide education sessions with the epileptologist and the dietitian

• Teach you how to make keto-friendly meals, and to work with a gram scale to measure and prepare meals.

• Show you how to give medications to your child and change from liquid to tablet medicines, if needed.

What to expect during the pediatric ketogenic (keto) diet

You’ll have weekly check-ins with our dietitian and nurse the first week after your child is out of the hospital. You will also have frequent clinic appointments for the first three months. Typically, once your child has been on the ketogenic diet for two to three months, we’ll be able to tell how well the diet is working.

The specifics of your child's ketogenic diet will change over time as we:

• Make sure your child maintains ketosis

• Measure the needs of your child’s growth

• Test for side effects

Each day you will have to:

• Measure your child’s urine ketones

• Weigh and measure every single meal and snack your child eats

What to expect after the pediatric ketogenic (keto) diet

We gradually reintroduce your child to a more typical diet after two years. Some children, though, will stay on the diet for much longer. The decrease in seizures that your child had while on the ketogenic diet may continue even after they return to a more typical diet.

How do I prepare my child to start the pediatric ketogenic (keto) diet?

We’ll help prepare you and your child for the changes that come with the ketogenic diet. We coach children on what to say if someone offers them food that’s not on the ketogenic diet (“I’m on a magic diet” works well). Fun, smaller dishes may help adjust to the smaller amount of food they’ll eat on the diet.

You’ll need the support of your whole family for the diet to be successful. We’ll give you plenty of customized recipes, educational material and get you connected to other families who can help. We’ll do frequent check-ins and lab work during the first three months to make sure everything is going OK. We’re always here to answer any questions you have.

What questions should I ask my provider about the pediatric ketogenic (keto) diet?

• Can we go to a restaurant?

• Can we still travel?

• How do we manage constipation?

• Is hydration important?

• What do we do if my child doesn’t want to eat?

• What medications can my child still take?

• What should I do if I have to go to an emergency room in a different city or state?

• What should I do if my child gets sick?

• What should I do if my child is throwing up?

• What can my child eat on holidays and birthdays?