When Monika Kalva Varma’s son started getting chronic headaches, long COVID was the last thing on her mind.
But when the 9-year-old contracted COVID-19 in December 2021, Akshay Varma developed asthma, chronic headaches, heart palpitations and other symptoms that lasted for months.
“We had been reading about (long COVID) for adults, we didn’t know it was really a thing for children,” said Kalva Varma, who lives in Alexandria, Virginia. If it weren’t for the pediatrician, “we may not have connected that it was long COVID.”
In the year and a half that Akshay struggled with his symptoms, doctors at post-COVID clinics have made strides in the pediatric field. Akshay, now 10, participated in a Children’s National Hospital study where researchers have been investigating the long-term effects of COVID-19 in children after recovering from an acute infection.
Over the past year, they’ve learned that an estimated 5% to 10% of children and teens develop a wide range of ongoing health problems called post-COVID conditions, or long COVID, said Dr. Roberta DeBiasi, chief of Pediatric Infectious Diseases at Children’s National Hospital in Washington.
“Many of these kids were completely healthy kids prior to the diagnosis and it can completely disrupt their life and their ability to participate in sports and school,” she said.
Along with researchers, the Biden administration has also made progress since coordinating with U.S. Department of Health and Human Services last year to address long COVID, including additional funding for research and raising awareness about the condition.
Read more about long COVID:
Here’s a look at the latest information about long COVID and kids.
What experts have learned about long COVID in kids and symptoms
DeBiasi leads a team of researchers at Children’s National Hospital, who’ve been studying long COVID in collaboration with the National Institute of Allergy and Infectious Diseases. Their study has enrolled over 800 children and aims to end enrollment this summer with 1,000 participants, she said.
Most children studied didn’t have a severe bout of COVID-19, with many reporting mild symptoms during the acute infection.
Here’s what she’s learned:
►Researchers have been able to narrow down the prevalence of long COVID to about 5-10% of children. Previously, some experts had estimated as little as 1% while others thought as high as 20%. “The truth is somewhere in between,” DeBiasi said.
►The average age of children who get long COVID is about 13, but the study encompasses participants as young as 2 and as old as 20.
►Kids are less likely to experience lung problems from long COVID compared to adults. The most common long COVID symptoms among children and teens are significant fatigue or symptoms that worsen after physical or mental exertion, in addition to shortness of breath, chest pain, muscle aches, headaches or feeling like they can’t think clearly. Participants may also develop mental health conditions, like anxiety and depression.
►On average, participants report experiencing about 10 symptoms. “Some kids have only a couple of problems, but most of them have multiple problems going on at once,” DeBiasi said. “The goal of the initial intake visit is to catalogue everything and then address the things that are most impacting their functions.”
►The majority of kids with long COVID eventually recover from their symptoms. Some feel better in as little as six months, while others may take a year. “Our experience has been reassuring,” DeBiasi said. There are “very few children who have not gotten back to normal activities.”
Questions about long COVID that still need to be answered
One of the most important questions that still needs to be answered is the physiological mechanisms of long COVID, or basically how and why do some people continue to experience post COVID conditions, experts said.
Among the working theories: some experts hypothesize long COVID symptoms may be triggered by the virus hiding in a reservoir somewhere in the gut. Others say the virus may have left the body, but symptoms continue due to an overactive immune system responding to lingering viral RNA.
The answer could lead to more targeted therapies that address the root of long COVID instead of related symptoms.
It could also have implications for other chronic illnesses, said Adm. Rachel Levine, assistant secretary for health for the U.S. Department of Health and Human Services.
“Is this a chronic infection or is it more of an autoimmune response to the infection? It might not be the same for every patient,” she told USA TODAY on Tuesday.
Levine said it’s important to address the clinical needs to a growing population suffering from long COVID symptoms.
“The epidemiology is critically important, but we can’t wait years for that to be done to start to treat patients because the patients are here now,” she said. “The research, the evaluation and treatments, they all need to kind of go at the same time.”
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What the Biden administration has done, so far
The federal government last year launched the Researching COVID to Enhance Recovery (RECOVER) Initiative, which is one of the largest studies examining long COVID. Since then, RECOVER has been expanded, which will help “gain a better understanding of the pathophysiology. That’s what the six different arms of RECOVER is looking to understand,” Levine said.
In addition to supporting research, in the past year government agencies have also:
►Expanded “high-quality care” for people with long COVID, especially to those living in underserved, rural, vulnerable populations and veterans, and including telehealth and behavioral health services.
►Promoted long COVID education and support for health care providers, including creating a new billing code specific to post-COVID conditions, so clinicians are better equipped to treat long COVID patients.
►Raised awareness that long COVID could be a potential cause for disability, in hopes of including the condition into inclusive disability policy regarding employment and assistance.
‘It can be hard, but you’re not the only one…’
Almost a year and a half after getting sick, Akshay has nearly recovered from his long COVID and returned to school and extracurricular activities, including soccer.
He’s learned a lot during his illness, listening to his body and being mindful of what may trigger post-COVID symptoms. He also learned how to better regulate his emotions and frustration when he’s unable to perform tasks to the ability he used to before long COVID.
Akshay told USA TODAY that by participating in the study, he can help others going through the same thing and show them that it gets easier.
“I want people who are also struggling with long COVID … for them to just know it can be hard but you’re not the only one who has gone through it,” he said.
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Follow Adrianna Rodriguez on Twitter: @AdriannaUSAT.
Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.