Ketogenic Diets and Your Child: Before You Decide to Start

Ketogenic diets are made up of foods that are high in fat (cream, oils, butter), medium in protein (meat), and very low in carbohydrates (sugars, fruits, vegetables and grains). There are 2 types of diets:

• The classic ketogenic (keto) diet
• The modified Atkins diet (MAD)

The body normally uses carbohydrates from food for energy. When carbohydrates are eaten in very small amounts, the body will use fat for energy instead.

When you eat a high fat diet, the body makes ketones (KEE-tones). With ketogenic diets, ketones will rise to a high level in your child’s body. This is called ketosis (kee-TOE-siss). For many, being in ketosis can control seizures.

• This is the strictest seizure diet.
• This diet is calculated by a measured balance (ratio) of fat to protein and carbohydrates.
• You use a gram scale to weigh food.
• Your child has to eat all of the food at every meal, because the amount of calories must be the same each day (calorie controlled).
• Your child will need to stay at the hospital for 3 to 5 days to start the diet.

• Carbohydrates are usually limited to 10 to 20 grams per day. As an example, a small apple has about 15 grams of carbohydrates.
• Your child must eat fat and protein with every meal, but this is based on their diet and is not calorie controlled.
• You can use household measuring cups to measure food.
• Your child can start the diet at home.

• More control of seizures
• Improved behavior and learning
• Reduced need for anti-seizure medicines

Your team will work with you to control these risks:

• Hunger, thirst and low energy
• Anger, frustration or feeling different from other children
• Low blood sugar, or ketones that get too high
• Upset stomach
• Constipation or irregular bowel movements
• Slower growth
• Weak or brittle bones
• High fat levels in the blood
• Kidney stones
• Dehydration if your child gets sick

Each child responds differently to being on the ketogenic diet. Sometimes the diet and anti-seizure medicines are both needed to control seizures.

People of all ages, including infants, school-aged children and teens can use these diets to help control seizures.

The diets have been used to help people with myoclonic, atonic and tonic-clonic seizures. However, when medicines have not worked well or if they cause bad side effects, it may be worth trying a ketogenic diet for other kinds of seizures.

Yes, the goal of the diet is to be sustainable and provide the energy needed for appropriate growth, but the diet itself does not provide sufficient nutrients. This is why children on the diet need to take vitamin and mineral pills (supplements).

When your child will have fewer seizures is different for each child. It can take a few weeks to a few months to start seeing improvement.

Children who start the diet must follow it very closely and carefully for at least 3 months. If your child does well, you can continue the diet as long as they tolerate it, and it helps with seizures.

Some people choose to continue the diet into adulthood.

Before you begin the diet, here are ideas to help your child and family be successful.

• Prepare siblings and other close family members. Help others in the family know how important it is to strictly follow this special diet. Tell them you need their help. This means they cannot share food or give food or drink to their sibling. You may want to create some family rules about eating if you think your child on the ketogenic diet will be upset watching a family member eat certain foods.
• Talk with your child often about how hard it is to be on the diet. Listen to your child’s feelings.
• Find ways to enjoy being together as a family that do not involve food.
• Avoid having foods around that will tempt your child.
• Set realistic expectations for the diet and celebrate your child’s success!
• Reward your child for doing a great job. Use a sticker chart to track and reward progress. Go on a special outing when a goal is reached.
• Find support for yourself. Many parents find it helpful to connect with others who share their experience.

If you feel that the ketogenic diet may be right for your child, we will work with you to start the process. This process can take up to 3 months. It requires multiple appointments, which we will use to:

• Assess if the diet will work for your child.
• Decide which diet is best for your child.
• Help you and your child prepare for the diet.

At your first appointment you and your child will meet with a doctor (neurologist) who specializes in the ketogenic diet. They will review your child’s medical history and decide if the diet would be a good treatment option. This is the best time to ask questions about the program and the requirements before starting the diet.

After this appointment you will need to complete paperwork:

• Neurology Nutrition Intake Form
  seattlechildrens.org/pdf/PE812.pdf
• Food Intake Record
  seattlechildrens.org/pdf/PE703.pdf

Before your next appointment with neurology, your child may also need to see other doctors or have tests done. This may include a visit:

• With a gastrointestinal (GI) doctor
• For a swallowing evaluation
• With a kidney doctor (nephrologist)

Once your child has completed all the appointments and tests and we have their completed paperwork, we will call you to schedule the next appointment.

At the next appointment, you will meet with a ketogenic dietitian to review the Neurology Nutrition Intake Form and provide education about the diet.

After that there will be a visit with an Advanced Practice Practitioner (APP), a ketogenic dietitian and a social worker.

They will give you more information, including:

• Information about the diet
• Medical issues and how they relate to the diet
• Support your family may need

You may meet with this team or a ketogenic dietitian multiple times to make sure your child is ready to safely start the diet and that you have a good understanding of the diet.

When your child is safe to start the diet, you will meet with a ketogenic dietitian for a teaching session. All family members who prepare food for your child should come to this teaching session.