Zoe’s Story: Managing POTS with a Team of Experts

During her freshman year of high school, Zoe came down with a respiratory virus. Even after she recovered, unusual symptoms persisted, including a rapid heart rate, dizziness and fatigue.

Along with her parents, Zoe sought the help of pediatricians, emergency doctors and cardiologists, all of whom were stumped as to what was causing her symptoms.

Throughout the nearly yearlong process of seeking medical help in suburban Chicago, Zoe noticed clinicians rarely spoke to her directly or seemed to listen closely as she described her symptoms.

“The first few doctors didn’t have any idea what was going on,” she said. “They would talk to my parents, but they didn’t really listen to me.”

Finally, the family was referred to Lurie Children’s to be evaluated by the POTS Program. POTS, or Postural Orthostatic Tachycardia Syndrome, is a clinical syndrome with a sudden onset usually between 12-15 years of age, mostly in girls. The condition is characterized by a marked increase in heart rate with little to no change in blood pressure during position changes, plus symptoms of palpitations, dizziness, lightheadedness, near fainting and fatigue.

Zoe and her mother Deb met with Dr. Stuart Berger, Division Head of Cardiology at Lurie Children’s, and Jillian Myers, Advanced Practice Provider in Cardiology and POTS Program Coordinator.

Right away, Zoe and Deb noticed a difference in the way the pediatric providers engaged with them.

“I felt like it was the first time people really listened to Zoe,” Deb said.

The team gathered Zoe’s medical history and ran a variety of tests before confirming Zoe’s POTS diagnosis. They explained what this diagnosis meant for Zoe, and outlined the ways they would help Zoe manage the condition.

For Zoe and her family, the news came with some relief.

“I cried because, finally, we had an answer for what was going on to this seemingly healthy child who couldn’t even get through a school day,” Deb said.

Managing POTS symptoms aims to increase circulating blood volume and enhance blood return to the heart. Initial management of POTS includes increased exercise and hydration, and enhanced nutrition.

The team instructed Zoe to increase her daily intakes of water and sodium, as well as enroll in an exercise program led by clinicians to help retrain her nervous system to work properly with her heart. Throughout the pandemic, Zoe has met virtually with Brittany, an exercise physiologist.

Within two months, Zoe said she began to feel better. “At first it was difficult to adjust, but once I started drinking more water and exercising with Brittany, it really helped me,” she said.

Now a junior in high school, Zoe is refocused in her classes and carrying a 4.1 GPA. She hopes to become a physician or physician’s assistant post-college so that she can help others.

“I really want to go into the healthcare field mainly because of my experience with POTS,” she said.

“It’s been life-changing,” Deb says. “It gave me my child back. She can function again and be a kid. That’s been tremendous, and Lurie Children’s has been extremely supportive. Jillian and Brittany have been incredibly supportive, always answering our the questions and giving Zoe the motivation to stay on track.”

About Lurie Children’s POTS Program

The POTS Program at Lurie Children’s provides comprehensive care to patients with cardiovascular symptoms of Postural Orthostatic Tachycardia Syndrome (POTS). We understand that POTS can be very difficult to live with. Our providers are here for you and your family to create individualized care plans based on your needs to find a way to best navigate your care with an end goal of a syndrome and symptom-free life. Learn more here.

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