Children help quest for answers about long COVID

Although she’s never had COVID, 3-year-old Scarlett Flack is part of a national effort to help scientists understand its long term effects. But that’s not what the little girl focused on as she lounged on an exam bed in the MUSC Children’s Health R. Keith Summey Medical Pavilion in North Charleston.

“Stinky feet,” she said happily, wiggling her rainbow-colored boots at Ron Teufel, M.D.

“Are these stinky toes?” Teufel asked with a smile as he prepared to do an electrocardiogram, or EKG, to measure the electrical activity of Scarlett’s heart. It was one of several measurements his team took for a study called the RECOVER Initiative. RECOVER stands for Researching COVID to Enhance Recovery. It’s funded by the National Institutes of Health.

 

“Most people think of COVID as a very acute illness, but we've really learned that symptoms often linger beyond four weeks, which is the criterion for long COVID in this study,” Teufel said. He saw plenty of children suffering from COVID as he served as the director of Pediatric Hospital Medicine at the MUSC Shawn Jenkins Children’s Hospital through the pandemic. He’s also discussed the illness with students, residents and fellows as a professor of pediatrics at the Medical University of South Carolina.

Now, Teufel brings that experience and knowledge to the study of long COVID in children. The research involves approximately 35 sites across the country, including MUSC Children’s Health. The goal is to represent a range of experiences with the virus, so it includes both people who have had COVID and kids, like Scarlett, who haven’t, for comparison.

So what is long COVID? Common symptoms include:

• Coughing.
• Feeling short of breath.
• Losing sense of smell.
• A change in ability to taste.
• Fever.
• Body aches, headaches, chest pain or stomach pain.
• Brain fog.
• Trouble sleeping and/or fatigue.
• Mood changes.

Teufel said his team is still looking for more kids and their caregivers to participate in the study. You can apply to join by emailing Tyler Kasmarcak or Teufel. “We need a diverse group of participants in this study to really understand how COVID-19 affects the general population of children.”

The goal is to involve up to 20,000 children and their caregivers across the country. They’ll answer surveys, use safe at-home kits to get small amounts of blood and spit and may also be asked to come in for checkups or other tests. “Many of the tests are optional for younger children, and if a patient cannot complete a test, it’s all right; we are just trying to get as much information as possible,” Teufel said.

Teufel said without such research, it’s hard to know if kids have long COVID. “In the hospital, we treat COVID all the time, but we don't necessarily know what happens once patients go home.”

He wanted parents to know that while the study does not include treatment for long COVID, it can give them important information about their children’s health. “If you end up demonstrating that you have long COVID, we do a fair amount of testing that I think can help you understand how much it's affecting your child. We do pulmonary function tests. We do neurocognitive testing to see if it's affecting both your lungs and the way that you concentrate.”

 

The study also collects about 2 milliliters of saliva, which in older kids takes about two to five minutes to complete. Scarlett looked skeptical as Teufel showed her the container she’d use for that. “You know how you spit out toothpaste? We’ll just collect as much as we can in this little vial,” Teufel told her.

“The saliva collection is primarily to have genetic information,” Teufel said in a separate interview. “That way, we can test in the future, accessing the genetic information to see if it’s related to long-term effects of COVID. But we want parents to know that the RECOVER biorepository has gone to an impressive length to ensure that your genetic information is kept separate from your name and other personal health information. It’s kept very secure and is not shared in any way outside of this study.”

The research is part of a larger effort by MUSC Health and MUSC Children’s Health that began early in the pandemic to answer some of the pressing questions about COVID and find treatments. That includes research on vaccines for children and adults, a first in nation treatment for the COVID complication MIS-C, convalescent plasma, COVID’s effects on cancer patients and whether hospitals were following national guidelines for treating children with COVID.

 

Krista Flack, Scarlett’s mother, said it’s important to her family to be part of that research to study a virus that’s had such a powerful impact on people’s lives. “I work in health care. I work with kids with disabilities. I'm an occupational therapist, and my husband works in emergency services. So all through the pandemic, we've been working. We haven't been able to stop our jobs.”

Teufel hasn’t stopped working either. He called the research rewarding. “I think it is it's exciting to be a part of a study like this to try to answer these questions. I also think that that's the type of patient that we're looking for – patients who are curious and want to contribute to understanding this a little better. Because we don't have these answers, and it would be nice to know because COVID – it's not totally going away.”

Scarlett doesn’t know about all of that. But she does have an answer to another question important in a 3-year-old’s life.

“What’s your favorite color?” Teufel asked her.

“I love the whole rainbow,” she said.

“I love it,” the doctor said with a huge smile.