Lisa Vanatta MS, RDN, CSP; Christi Wheeler MS, RDN, CSP; Randa Jarrar MD
For centuries, dietary manipulation, including fasting, has been used for the treatment of epilepsy. In the early 1920s, physicians at Mayo Clinic discovered that a low carbohydrate diet provided similar effects to fasting and coined the term “ketogenic diet,” which is still in use today. Ketogenic therapy (KT) is a diet with high fat, low carbohydrate and adequate protein intake.
The KT program at the Barrow Neurological Institute at Phoenix Children’s is a robust clinical program staffed by experienced dietitians, psychologists, pharmacists and epileptologists. In line with our goal to be a leading global center of excellence, we focus efforts to integrate innovative approaches to this ancient treatment. This includes outpatient initiation for all patients (including infants), use of cutting-edge technology for patient monitoring, the first-of-its kind education app and educational conferences for healthcare providers.
Outpatient Initiation for Infants
Prior to the COVID-19 pandemic, very few centers in the U.S. implemented KT outpatient due to concern about adverse effects. Eighty percent of centers initiated it inpatient to allow close observation and medical intervention for adverse effects. None of the hospitals initiated the diet outpatient in infants < 12 months of age. Although the pandemic has resulted in a move toward outpatient initiation, many centers continue to initiate this therapy inpatient especially for infants.
The Barrow Neurological Institute at Phoenix Children’s was one of the first programs in the U.S. to initiate outpatient KT in infants and children, even before the pandemic. In a cohort of 33 infants (4-18 months of age) initiated on KT outpatient in the past 10 years at our center, constipation was the most common adverse effect (58%), followed by acidosis (30%) and emesis (21%). Symptoms were mild, and the majority of patients were managed successfully at home. Four infants required hospitalization during the initial three months when adverse effects are most common. Most of the admissions were in the setting of illnesses, which likely contributed to the severity of symptoms. We have concluded outpatient initiations can be done safely in all ages when appropriately managed by knowledgeable staff and with the innovative monitoring tools we have developed.
Home Monitoring
To further enhance safety and optimize clinical management, a home monitoring app was developed in 2021. To use the app, caregivers electively enroll to receive a text message daily to log weight, urine/blood ketones, blood glucose, alert symptoms (lethargy, sleepiness, flushed cheeks, fast breathing, nausea, vomiting), daily feeding intake and seizures. The text is received by the on-call ketogenic dietitian. If alert symptoms are noted, the appropriate ketogenic team member contacts the family for further information and action.
Since its launch last year, the app has been well-received and adopted by caregivers no matter the age of the patient. All infants < 12 months of age initiated on KT were enrolled in the app. Of the patients enrolled, 69% submitted > 10 days of data in the first 30 days during initiation. All patients were successfully initiated outpatient with only mild adverse effects. Only 11 of the 90 submissions by caregivers of infants reported alert symptoms. No infants required emergency services or hospital admission. These initial data suggest the app functions as a helpful tool to improve safety in monitoring outpatient initiations.
Ketogenic Dashboard
Our ketogenic dashboard tracks in real time the number of active patients on the diet, each patient’s last visit, monitoring labs, imaging studies and electrocardiogram. The current list of admitted patients on KT is available along with the current list of medications prescribed that may contain excess carbohydrates. These are all crucial for monitoring the safety and efficacy of the diet. No patient is lost to follow-up, and unintended exposure to carbohydrates is minimized.
Journey Board
Implementing KT is a significant undertaking for families; therefore, education is crucial for successful execution. Even carbohydrates from medications and personal care products are closely monitored. In collaboration with Phoenix Children’s health education specialists, our team also developed a mobile app for education. “Our Journey with Ketogenic Diet Therapy” is a unique tool, available in hard copy, digital and mobile platforms that utilizes a “teach back” approach to ensure families understand the information. Presenting KT training and education for families in a mobile app was the first of its kind for ketogenic education.
One of the unique features of an electronic educational platform is the ability for multiple caregivers, teachers and healthcare providers to download the app in both English and Spanish. The gameboard-like feature (highlighted on the screen below at the Ketogenic Summit) allows families to attain a gold star with completion of each educational section. The app also links to outside resources, including videos, and provides a notes section for families to document questions or patient-specific information to share with their providers during clinic visits. “Our Journey with Ketogenic Diet Therapy” has been downloaded an estimated 665 times since its inception three years ago. Download locations span the globe from the United States, Canada, China, Mexico, Spain and Argentina.
Ketogenic Summit
Successful initiation and management of KT require a knowledgeable team. We strive to educate, learn from and share knowledge with other providers around the world. Our team hosted two Ketogenic Therapy Summits with the goal of sharing knowledge with other well-respected experts in the field to develop best practical applications of KT. Our most recent summit in September 2019 included international attendees from various healthcare disciplines. Attendees reported intention to improve their programs by incorporating psychosocial support, using “teach back” method for education, implementing the diet earlier in practice and exploring outpatient initiation.
Future Focus
“To accomplish great things we must not only act, but also dream; not only plan, but also believe.”
Anatole France
Our Ketogenic Team is committed to integrating technological advances to improve patient care. In the future, we plan to enhance our home monitoring app to include push notifications to remind families when lab monitoring is needed and communicate directly through the app to follow up on any alert symptoms reported. Our goals also include enhancing our educational platform to include a track for feeding tube-dependent patients and those on more liberal versions of KT, including modified Atkins and low glycemic index treatment. Finally, our multidisciplinary ketogenic clinic is focused on researching methods that improve adherence to KT with the goal of expanding the use and success of this tried-and-true therapy.
