Ketogenic Diet Program
Lurie Children’s ketogenic diet program offers one of the country’s most comprehensive and multidimensional care programs of its kind. Led by registered dietitian Robyn Blackford, our ketogenic diet team currently serves approximately 175 patients and families. Through the combined efforts of our dietitians, nurse practitioners and social worker, we have the capacity to provide care and support that extends beyond the hospital walls not only for your child, but for your entire family.
What to Expect
There are three essential components of all food: fats, carbohydrates and protein. The ketogenic diet is a carefully prescribed ratio of fats to carbohydrates and protein. This ratio causes the body to convert fat into substances called ketone bodies (thus the name). These ketones are then used for fuel in many cells of the body, including the brain. When this happens, the brain goes into a higher energy state and is better able to protect itself against seizures.
The ketogenic diet works in a fundamentally different way than medications. Scientists have found many different mechanisms of action which contribute to the diet’s success, but one common theme is that instead of causing sedation, a common side-effect of medication, the diet can actually make a child more alert and focused.
The diet’s main fat sources include:
- Heavy cream
- Oils (vegetable, olive, coconut, MCT, etc.)
Many strict forms of the diet remove the following foods:
All of our diets are developed with each individual child in mind. We focus on what the child likes to eat and try as much as possible to incorporate their favorite foods into their diets, and many children actually enjoy their keto food. Even if your child is already on a special diet due to allergies or food intolerances, our team can still incorporate these special needs into your child's ketogenic diet.
We also understand that kids are constantly growing and their tastes are constantly changing, so menus are always being revised. Our team also makes sure to appropriately change calorie levels and make the proper food ratio adjustments to keep seizures under control.
We use the diet to treat a variety of seizure types and epilepsy syndromes, and encourage parents to research the diet at the beginning of their child’s treatment. Our goal is to use the ketogenic diet earlier to avoid side effects of medications and control seizures sooner in a child’s diagnosis.
This may require a lifestyle change for many families, so we advise families who are interested in the diet to learn more by reading some of our excellent printed resources and to talk to each person who regularly cares for the child to make sure there is agreement to try the diet. We usually encourage an appointment with one of our epileptologists to double check that the diet is right for your child, and then an appointment with our ketogenic diet team to go over more of the details.
Typical Treatment Process
- First appointment: Your first meeting with our team will be a one-hour new patient appointment. You’ll meet our nurse practitioners, social worker and dietitians to discuss the diet’s daily requirements, the initiation process, the length of time your child will be on the diet, how the diet may affect your family and any other questions your family may have. If the ketogenic diet team and your family both agree the diet will be manageable for your family, an initiation is scheduled.
- Inpatient stay: Within one month of the first appointment, your child will be initiated on the diet. They will be admitted as inpatients for four days and given a schedule of activities, and our dietitians will guide your child and whole family through about 10 hours of education about the diet. Everyone who will take care of the child, including babysitters, grandparents, nannies, etc., is taught the specifics of the diet. The inpatient stay is also used to adjust the diet to your child’s palate.
- Second appointment: One month after your child’s initiation, we’ll meet again to follow-up on how the diet is working for the child and the family, and talk over any questions.
- Continuous phone support: Our team will be available to answer your questions and address your concerns over the phone throughout the process. We will also be in contact with you to schedule follow-up appointments.
Many children are weaned off the diet after a few years, but other children decide to stay on it longer because it’s helpful for seizure control. However, if your child wants to come off the diet, you should consult your physician and the ketogenic diet team to make sure your child is properly weaned.
We realize that the ketogenic diet can be very demanding of children and families, so we make sure that we stay with families throughout the entire treatment. Our multidisciplinary team includes a social worker that can help your child and their siblings cope with the stresses that come with the diet. Your child will also have regular, relationship-building contact with the same team of nurses. Additionally, we have an education specialist on staff who specializes in meeting with teachers and administrators to help prepare schools for children with epilepsy.
Concerns About Weight Gain
Despite the fact that your child will be mostly eating fats, they won’t gain weight. The portions for every item at every meal are extremely precise; one of our dietitians will plan meals for your child with set ratios that should be followed as closely as you would a dosage of medication. Daily meals are also balanced with physical exercise when medically possible.
You can reach the ketogenic diet team by calling the Epilepsy Center at 312.227.3540. Our team members include:
- Catherine Dezort, MSN, APN, CPNP-PC
- Breanne Fisher, MSN, APN, CPNP-PC
Make an Appointment
Entry into the ketogenic diet program is done through our Epilepsy Center’s physician referrals. To schedule an appointment with one of our epileptologists, call our Epilepsy Center at 312.227.3540.
The Epilepsy Division’s unique ketogenic diet program is funded in part by contributions from our wonderful donors. Since 2005, our program has expanded from 15 children to 175 children, and we couldn’t have made the leap without our incredible supporters.
Contributions have helped fund our staff’s salary and could help our team launch projects such as keto group get-togethers with patient families and keto-cooking parties. Past gifts have also helped us fund a keto cart that is stocked with keto-friendly flavorings, cooking gadgets and electronic digital scales for those that cannot afford to buy their own. Visit our foundation website for more information on how you can support this truly unique program.
Explore every component of our multidisciplinary approach to epilepsy treatment by visiting some of our other care areas. Read more about our care.
For more information on the ketogenic diet, visit The Charlie Foundation’s website, or take a look at the sites listed below.