experts are learning how seemingly mild cases of COVID-19 have turned into debilitating cases of long-haul COVID-19. Svetlana Gustova/Getty Images
  • Recent studies have found that as many as 1 in 4 people who had COVID-19 end up with long-haul COVID-19. But research is still ongoing.
  • Experts are also learning how long-haul COVID-19 affects children and teenagers.
  • Long-haul COVID-19 symptoms may appear weeks after the initial infection, even if the initial infection is mild or asymptomatic. The symptoms may also change over time.

While COVID-19 cases are declining in the United States, experts are still learning what the effect of a year-long global pandemic has been on our long-term physical and mental health.

In particular, attention has turned to people with long-haul COVID-19, a syndrome that has appeared in people who have lingering symptoms after an acute case of COVID-19.

While most people with severe COVID-19 were adults, experts are learning how seemingly mild cases of COVID-19 have turned into debilitating cases of long-haul COVID-19.

Recent studies have found that as many as 1 in 4 people who had COVID-19 end up with long-haul COVID-19. But research is still ongoing.

What is ‘long COVID’?

Long-haul COVID-19, often referred to as “long COVID,” can involve a wide variety of symptoms, some of which include:

  • fatigue
  • trouble concentrating
  • shortness of breath
  • muscle aches
  • depression
  • anxiety

Symptoms may appear weeks after the initial infection, even if the initial infection is mild or asymptomatic. The symptoms may also change over time.

Although much of the attention around long-haul COVID-19 has focused on adults, early research shows that it can also affect children and teenagers.

In these cases, many children have seemingly mild cases that then lead to long-haul COVID-19, which can be debilitating.

Researchers are still working to uncover the cause of long-haul COVID-19 and identify the most effective treatment approaches.

One family’s story

For one family, the effects of the pandemic won’t be over anytime soon, even as cases in the United States decline.

Molly Burch was 16 years old in March 2020, when she first developed symptoms of COVID-19.

“She started with a little cough on March 8, and then by March 9, that cough was getting worse and she had a fever,” Molly’s mother, Ann Wallace, told Healthline.

Over the next 3 weeks, Molly’s symptoms got worse before they got better.

After her initial infection had passed, some of her symptoms lingered on, and months later, new symptoms appeared.

“I thought she was better, but in August, her symptoms came back with new shortness of breath,” said Wallace. “I remember because it was her birthday; she was having trouble breathing, and it was incredibly alarming.”

Molly’s acute illness may have subsided, but the teenager never fully bounced back. 

Walking up the stairs now leaves Molly out of breath. A day at school leaves her exhausted.

Her symptoms are consistent with long-haul COVID-19, in which symptoms last for weeks or months after someone first contracts the virus that causes COVID-19.

“I feel like in the past week, she’s better than she was the week before,” said Wallace. “But you never know with long COVID. You can think you’re in the clear and then be slammed.”

Trying to get tested

One of the challenges in diagnosing long-haul COVID-19 is that many people who have contracted the virus never got tested for it. Or they might have been tested only after the virus had cleared from their system.

Testing capacity was very limited when Molly became sick in March 2020. Her doctor presumed she had COVID-19 based on her symptoms, but she didn’t meet the narrow testing criteria that were in place then in her home state of New Jersey.

“Molly had not been out of the country. She did not have contact with a known case of COVID. And she had a fever and a cough, but no shortness of breath,” recalled Wallace.

More than a week after Molly got sick, Wallace also developed symptoms of COVID-19.

Both of them were finally tested on March 22: Wallace’s results were positive, but Molly’s were negative.

That doesn’t mean that Molly didn’t have COVID-19. By the time she got tested, she was weeks into her illness — at a point where the virus is often no longer detectable.

“The place where we got tested said, ‘Molly is presumed positive,’” said Wallace. “The doctor had initially said, ‘We think it’s COVID,’ and my positive test gave further credence to that.”

The search for treatment

Like COVID-19 itself, long-haul COVID-19  is a new condition with many unknowns. Healthcare professionals have had to learn on the go, which has posed challenges to them and the people they treat, including Molly and Wallace.

“It’s not that people haven’t offered help. It’s that in the beginning, there was really no help to offer,” Wallace said.

“And it’s still maddening, the difficulty getting care for people with long COVID,” she said.

Over the past year, more specialized clinics have opened up across the country to provide rehabilitation support to people recovering from COVID-19.

Norton Children’s Pediatric COVID-19 Follow-Up Clinic in Louisville, Kentucky, focuses on treating children and teenagers in particular.

“We started noticing children who have had lingering symptoms from COVID, and there wasn’t a lot of data on it or resources to help some of these kids,” said Dr. Daniel B. Blatt, a pediatric infectious disease specialist at the clinic. “So we decided to create our own clinic to not only treat these children but also investigate the nuances of the syndrome.”

Diagnosing and managing ‘long COVID’

Before Blatt gives a child a diagnosis of long-haul COVID-19, he checks for other potential causes of their symptoms.

Long-haul COVID-19 causes general symptoms, which means they are similar to those of other conditions. For example, fatigue and shortness of breath may be caused by a variety of infections.

“One thing that we’re really good at as infectious disease doctors is teasing out whether it is long COVID or a different infection that can look like long COVID,” said Blatt.

“Then we’ll either have the patient come back and follow up in our clinic or we’ll refer them out to different sub-specialists depending on what their symptoms are,” he continued.

For example, Blatt might refer a child to a pulmonologist or cardiologist if they’re having shortness of breath.

He might refer them to a psychologist or psychiatrist if they’re experiencing anxiety or depression.

Molly’s doctor has recently ordered chest X-rays and referred her to a cardiologist.

Offering emotional support

To help children and families cope with long-haul COVID-19, Blatt said that one of the most important things that a healthcare professional can provide is emotional support and reassurance.

“Almost everyone we’ve had so far with long COVID gets better with time,” said Blatt. “It’s scary and frustrating to have lingering symptoms, but the reassurance that they will get better helps with a lot of the anxiety.”

Emotional support is also a key aspect of the care that Noah Greenspan, DPT, CCS, EMT-B, provides to patients at the COVID-19 Rehabilitation and Recovery Center at H&D Physical Therapy in Manhattan, New York. Greenspan is a cardiopulmonary and complex medical physical therapist and founder of the Pulmonary Wellness Foundation.

“COVID-19 is a global pandemic,” Greenspan told Healthline. “The situation is constantly evolving. The information is only as good as the last news cycle, and recommendations change constantly.”

“That in itself is anxiety-provoking,” he continued. “Plus, the isolation, the inability to get a test, dealing with this critical illness. It is a really challenging time.”

Greenspan has been treating Wallace’s own persistent symptoms following COVID-19, while also offering her support in managing her daughter’s health needs.

“One thing that Noah has offered is this awareness of how families are impacted, how I’m impacted by my daughter’s health, and how helping her get better is also helping me,” Wallace said.

Stepping up as a community

Children with long-haul COVID-19 need support from other community members as well, including school personnel.

“I think we need school leaders to be mindful of kids who’ve had COVID, so they’re not pushed too hard,” Wallace said.

Molly’s school has recently adopted a hybrid learning approach, which means she has in-person classes 2 days a week and online classes the rest of the time. The academic demands have been hard for her to manage.

“Several weeks in a row, she went in to school on Wednesday and then could not get out of bed on Thursday,” said Wallace. “You know, the effort of going to school just knocked her out.”

Even when Molly attends classes online from home, it requires energy that she only has in short supply.

“We need accommodations, even when kids are learning from home,” said Wallace.

Taking steps to prevent ‘long COVID’

Wallace would like to see people take the risks of COVID-19 in children more seriously, including the risk for long-haul COVID-19. The condition can have wide-ranging effects on a child’s health and well-being.

“In a kid’s life, being sick for a year is a huge deal,” said Wallace. “Think of all the developmental milestones and social milestones that kids go through in the course of a year.”

Blatt told Healthline that the only way to avoid getting long-haul COVID-19 is to do what you can to avoid getting COVID-19 in the first place.

“And the best way to not get COVID is to get vaccinated,” he said.

The Centers for Disease Control and Prevention (CDC) recommends COVID-19 vaccination for adults and children 12 and older. Researchers are continuing to study the safety and efficacy of the vaccines in younger kids, who are not currently eligible to get vaccinated.

The more adults and older children get vaccinated, the more protection that may provide to younger children.

Higher rates of vaccination in a community help stop the spread of infection.

Wearing face masks also lowers the risk of transmission.

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