Ketogenic Diet Therapy Program

We collaborate with epileptologists from the Epilepsy Program, who refer patients to our clinic. Our approach is multidisciplinary, involving providers whose expertise supports our ketogenic therapy program. Additionally, we actively engage with the community, collaborating with pediatricians and other health professionals to educate and support patients who may benefit from ketogenic therapy.

Before your child starts ketogenic diet therapy, there are a few steps that will need to be taken:

  • Your child will have a comprehensive neurological evaluation completed by an epileptologist and referral to start ketogenic therapy.
    • The doctor will explain any medical concerns that may occur when starting the ketogenic diet.
  • A multidisciplinary visit will be done with the ketogenic diet therapy team in which you and your child will meet with the ketogenic dietitian, psychologist and advance practice practitioner.
    • Please anticipate this first visit to last up to 3 hours.
    • This first visit will provide a chance to meet our ketogenic diet team, ask questions, get answers, and help us create an individualized approach for the initiation of ketogenic therapy for your child.
  • Your child will have pre-ketogenic diet laboratory studies taken to rule out any metabolic disorders. Your epileptologist will order these labs.

Once your child starts ketogenic therapy, they will have regularly scheduled visits with a ketogenic dietitian. Each visit will include:

  • A detailed nutrition evaluation by your ketogenic dietitian.
  • Changes will be made to your child’s ketogenic diet plan as needed based on any nutrient deficiencies, medical concerns, tolerance and other factors.
  • Labs will be repeated at each ketogenic clinic visit to monitor for any potential side effects your child might develop while on ketogenic therapy.

Additional visits scheduled during your child’s care while on ketogenic therapy may include:

  • A medical evaluation by your ketogenic team to monitor and manage your child’s medical condition and care.
  • Consultation with a pharmacist as needed to review any medication changes or ensure the appropriateness of medications allowed on the diet.
  • Psycho-social re-evaluation by the ketogenic team psychologist, determined in collaboration with the patient, family and ketogenic team.

Ketogenic Therapy Frequently Asked Questions

The ketogenic diet is calculated at a specific calorie level by your child’s dietitian. The dietitian will keep track of your child’s growth to determine if a change is needed to ensure they grow appropriately. Even though this therapy is high in fat, your child will not gain too much weight. Since the diet alone does not contain enough vitamins or minerals, your child will need special supplements. Without supplements, your child is at risk for nutritional deficiencies. Regular lab monitoring and in-person follow-ups are needed to minimize malnutrition risk.

If your child eats or drinks something not part of their ketogenic therapy, such as juice, cake, cookies or even liquid medications, they are at a high risk for increased seizures. Even having extra portions of ketogenic foods (such as meats and vegetables) may lead to increased seizures. This reaction is similar to suddenly stopping your child’s seizure medicines all at once. In serious cases, uncontrolled seizures may require you to call 911 or take your child to the hospital.

In some children, cholesterol levels may increase during the first six to twelve months because the diet is high in fat. However, as the body becomes more efficient at using fat for energy, these levels usually decrease back to normal. If your child does develop high cholesterol, there are options to adjust the ketogenic therapy. Your child’s cholesterol blood level is drawn before starting and will be re-checked regularly. To date, there are no research studies that indicate ketogenic therapy increases future risk of heart disease.

Though portion sizes are small, your child will eat foods high in fat. These types of foods will help keep them feeling full for a long time since they take longer to leave the stomach. Since ketones are the product of fat breakdown, they will also make your child feel less hungry. Some children even have a hard time finishing all the meals because they feel full. If this happens, your child’s dietitian will work closely with you and make necessary changes to make sure they eat the right number of calories.

Children with feeding tubes can be on ketogenic therapy. There are special ketogenic formulas for feeding tubes. Your child’s dietitian will determine what type and amount of special formula they will need to follow the ketogenic diet.

Your child will need specific blood tests before starting ketogenic therapy. These blood tests will help determine if this therapy is safe for your child. Your child will be tested for certain metabolic disorders or nutritional deficiencies. If they do have certain metabolic disorders, then it is not safe for your child to follow ketogenic therapy. If there are deficiencies, supplements can be added to ensure no long-term deficits occur while on ketogenic therapy.

Children are usually very flexible and can adapt to changes in their diets with minimal difficulty. Ketogenic therapy can fit into your family’s life, but it does require planning. Our ketogenic team will work with your family to help provide support, education, and resources to ensure your success in implementing ketogenic therapy that matches your schedule, travel plans and child’s food preferences.

No, only your child’s neurologist and a dietitian specifically trained to manage ketogenic therapies should give you medical advice regarding your child’s diet. If you use the internet as a source of information, be aware of the quality of information you may read. Not everything you read on ketogenic diets relates to the use of ketogenic therapy for epilepsy. We have also created an educational booklet called Our Journey with Ketogenic Diet Therapy, which is available through Phoenix Children’s Emily Center and as an online app.

There are meals you can prepare for social functions. For example, for your child’s birthday, you can put candles in sugar-free Jell-O® or make a “keto” cake that fits within your child’s ketogenic therapy plan. Offering non-food rewards is another great option since your child cannot have typical candy or desserts. Your ketogenic team will provide specific guidance and individualized recipes based on your family plans and goals.

Yes, children can adapt to the ketogenic diet. Your dietitian can provide recipes that match your child’s food preferences, which makes the transition easier. Talk to your child about why you are making these changes. Knowing why the changes happened may make it easier for them to stick with the diet. Our ketogenic team psychologist will also work with your family to provide strategies and resources to maximize your success.