POTS Program Focuses on Reduction in Symptoms and Quality of Life

January 25, 2024

The Pediatric POTS Program within the Heart Center focuses on a non-pharmacologic approach to managing children and adolescents with symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) through a specific POTS Pathway.

POTS is a clinical syndrome of orthostatic intolerance characterized by sustained and excessive orthostatic tachycardia, absence of low blood pressures, and chronic symptoms of orthostatic intolerance affecting daily activity and quality of life.

Patients with POTS typically experience daily postural symptoms including postural tachycardia, dizziness, and lightheadedness. There has been a growing number of patients presenting with POTS like symptoms post the COVID-19 pandemic. To help mitigate the demand, the Lurie Children’s POTS team is growing.

Jillian Myers, MSN, APRN-NP, CPNP-PC, Director of the POTS Program at Lurie Children’s, has seen over 600 patients in 2023 and this number is expected to double in 2024. The program consists of two nurse practitioners, a nurse coordinator, a nurse, and dedicated clinical exercise physiologist – all specializing in the management of POTS symptoms. The all-encompassing team leads one of the only comprehensive treatment centers for children and adolescents with POTS in the Midwest.

Through their multidisciplinary work with patients and families, program providers aim to give POTS patients an opportunity to live comfortably day-to-day.

The team focuses on lifestyle changes to alleviate symptoms for patients, such as improved hydration, daily exercise, optimization of nutrition, before considering medication management. “Medications act as a Band-Aid by temporarily reducing symptoms. Without incorporating lifestyle changes, complete resolution of symptoms is not typically achieved,” said Myers.

Fortunately, about 80% of patients, will eventually outgrow this condition by the time they reach their early twenties.

Care for POTS at Lurie Children’s

The comprehensive appointment pathway from assessment to management is necessary for an accurate diagnosis.

At the initial visit, patients will undergo an extensive evaluation which includes an electrocardiogram (ECG), an active stand test which is a simple and non-invasive test used for the diagnosis and management of POTS, an evaluation with a POTS provider, and an exercise consultation and evaluation with our POTS Clinical Exercise Physiologist (CEP).

Following the initial visit, patients will follow a “POTS Pathway” which guides their care over the next year. This pathway includes both in-person visits as well as telemedicine visits. The clinic has incorporated as needed telemedicine visits to triage new or concerning POTS symptoms. Read more about Lurie Children’s POTS program here, or learn more about the team approach with Zoe’s story.