Ketogenic Diets and Your Child Before You Decide to Start

The ketogenic diets are medical treatments for . They are life changing for children and families. The diets must be followed very closely.

What are the Ketogenic diets are made up of foods that are high in , medium in ketogenic diets? (meat), and very low in (sugars, fruits, vegetables and grains). There are 2 types of diets:

• The classic ketogenic • The Modified 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 (KEE-tones). With ketogenic diets, ketones will rise to a high level in your child’s body. This is called (kee-TOE-siss). For many, being in ketosis controls seizures.

The classic ketogenic • This is the strictest diet. diet • This diet is calculated by a measured balance (ratio) of fat to protein and carbohydrates. • Food is weighed on a gram scale. • Your child has to eat all of the food at every because the amount of calories must be the same each day (calorie controlled). • A 3- to 5-day hospital stay is required to start the diet.

The Modified Atkins • Carbohydrates are usually limited to 10 to 20 grams per day. As an Diet (MAD) 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. • Food is measured using household measuring cups • The diet is started at home.

What are the • Seizure control benefits? • Behavior and learning improvements • Reduced need for anti-seizure medicines

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To Learn More Free Interpreter Services • • In the hospital, ask your nurse. 206-987-2078 • From outside the hospital, call the • Ask your child’s healthcare provider toll-free Family Interpreting Line, 1-866-583-1527. Tell the interpreter • seattlechildrens.org the name or extension you need. Ketogenic Diets and Your Child

What are the risks? Your team will work with you to control for these risks: • , thirst and low energy • Anger, frustration or feeling different from other children • Low blood sugar or ketones that get too high • Upset stomach when first starting diet • 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

Will the diet work Each child responds differently to being on the ketogenic diet. Sometimes a for my child? 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 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 is worth trying a ketogenic diet for other kinds of seizures.

Will the diet give No, they do not have enough for children to grow properly. This is enough nutrition why children on the diets need to take and pills (supplements). for my child to grow?

How long does the When your child will have less seizures is different for each child. It can take diet take to start a few weeks to a few months to start seeing improvement. working?

How long would Children who start the diet must follow it very closely and carefully for at my child need to least 3 to 6 months. If your child does well, the diet can be continued for as long as tolerates it and it is helping with seizures. be on the diet? Some people choose to continue the diet into adulthood.

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How can I help my Before you begin the diet, you may want to think about your ideas for child cope with the helping your child and family be successful. diet? • Prepare brothers and sisters and other close family members. Help others in the family know how important it is to strictly follow this special diet, and tell them that 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 sibling or parent eat certain foods. • Talk with your child often about how hard it is to be on the diet. Listen to your child’s feelings. • Role model by giving up something yourself. • 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.

What if I want my If you feel that the ketogenic diet may be right for your child, we will work child to start the with you to start the process. This process can take up to 3 months. It requires multiple appointments, which we will use to: diet? • Assess if one of these diets will work for your child. • Decide which diet is best for your child. • Help you and your child prepare for the diet.

First ketogenic At your first appointment you and your child will meet with a neurologist appointment 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 for your child. 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:

• Ketogenic Diet Intake Form seattlechildrens.org/pdf/PE812.pdf • Food Intake Record seattlechildrens.org/pdf/PE703.pdf

Tests and Before your next appointment with neurology, your child may also need to appointments 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.

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Planning to start At the next appointment, you will meet with a ketogenic diet Advanced the diet Practice Practitioner (APP), a ketogenic 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 Most families meet with this team 1 or 2 times to make sure that their child is ready to start the diet and that you have a good understanding of the diet.

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

Seattle Children’s offers interpreter services for Deaf, hard of hearing or non-English speaking patients, family members and legal representatives free of charge. Seattle Children’s will make this information available in alternate formats upon request. Call the 11/20 Family Resource Center at 206-987-2201. This handout has been reviewed by clinical staff at Seattle Children’s. However, your child’s PE100 needs are unique. Before you act or rely upon this information, please talk with your child’s healthcare provider.

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