Eliana’s Story: A Cautionary Tale about Long COVID in Kids

Fourteen-year-old Eliana Rosario of Lorain is riding roller coasters at Cedar Point this summer, which is a big deal considering she could barely walk last fall.

Eliana suffered through a long bout of troubling symptoms including chest pain, breathing difficulty and eventually, loss of strength in her arms and legs. For months, her symptoms were a medical mystery.

Eliana’s entire family came down with COVID-19 in late 2020. Eliana developed flu-like symptoms and lost her sense of smell and taste. Overall, her symptoms were mild. But weeks later, she developed chest discomfort, light-headedness and heart palpitations. She underwent tests, which didn’t turn up any problems.

On the advice of their pediatrician, Jessica began keeping a journal of Eliana’s symptoms.

Eliana would experience episodes on and off. Then last fall, after her band at Open Door Christian School performed at halftime of a homecoming game, she fell ill. The band director called her mother, Jessica, to the band room.

“I saw her lying on the floor with her feet up,” Jessica says. “I’m talking to her, asking her how she felt, and she couldn’t talk back. She was pale in the face. I couldn’t get a response from her.”

“It was really scary,” Eliana says. “I was not able to use my legs. It was like temporary paralysis.”

Disease Detectives Seek Answers

An ambulance took her to nearby University Hospitals Elyria Medical Center. After undergoing tests, she was transferred to UH Rainbow Babies & Children’s Hospital, where she was seen by specialists including neurology, cardiology and infectious diseases.

Her neurological symptoms were puzzling. But doctors suspected and then confirmed Eliana was suffering from long COVID, a condition that can include a wide range of ongoing health problems. She was diagnosed with COVID-related postural orthostatic tachycardia syndrome (POTS), a blood circulation disorder marked by an elevated heart rate when standing.

Eliana was hospitalized for eight days, and then attended the Rainbow COVID Recovery Clinic as an outpatient.

Long COVID in children presents in many ways, says UH Rainbow infectious disease specialist Amy Edwards, MD, who was involved in Eliana’s care. Extreme fatigue is the most common symptom.

“These are kids who were running track, playing soccer, who were wrestling or playing hockey, and in some cases, they can hardly get out of bed now,” Dr. Edwards says.

Road to Recovery

Eliana gradually improved. She started medication to control her blood circulation disorder and underwent eight months of physical and aquatic therapy.

“She gradually went from a wheelchair, to a walker and then a cane,” Jessica says. “Now she’s running, jumping and riding roller coasters. The medical staff got her to where she is now.”

Kassandra Najm, MD, a Rainbow pediatric hospitalist who treated Eliana, says Jessica’s careful account of her daughter’s ongoing symptoms helped doctors arrive at long COVID diagnosis.

“Jessica was an excellent advocate. She had very detailed records of the symptoms Eliana experienced. Being able to share that information with the team helped us get to the right diagnosis,” Dr. Najm says.

“It’s important to have long COVID in mind as a possible diagnosis, and to work collaboratively with other sub-specialists and with the family.”

Eliana and her mother also heeded Dr. Edwards’ advice that a healthy diet, reducing sugar and junk food, and getting proper sleep will help alleviate long COVID symptoms.

Eliana and Jessica say they hope sharing their story helps raise awareness of long COVID in children, which often is overlooked.

“I really got sick from this virus and I want kids like me get the care they need,” Eliana says.