Long COVID is debilitating children. Doctors worry there aren’t enough centers to treat them

When 11-year-old Jack Coviello contracted COVID-19 in January 2022, his worst symptom was a sore throat that kept him out of school for a week. A couple of days later, graver symptoms started to appear: gastrointestinal issues, tachycardia, panic attacks, and extreme fatigue that kept him sleeping 20 hours a day. 

It would be a full month of running tests in which doctors continued to say Jack was “fine,” until his pediatrician diagnosed him with post-COVID syndrome, also known as long COVID, and referred him to a specialized clinic, said his mother, Kelli Coviello, who is a principal’s assistant at an elementary school in Massachusetts.

“It’s been a challenge of them not really, truly understanding,” Coviello told Salon in a phone interview. “They think it’s just school avoidance, and he doesn’t want to come in or maybe it’s just anxiety, and all this other stuff. … But he’s an 11-year-old boy, who is looking at you saying, ‘Am I dying? What’s happening to me?'”

Jack is one of thousands of children that has been diagnosed with long COVID. Last month, the National Institutes of Health updated its considerations for long COVID to say the burden of the condition in children “may be quite large.” Studies estimating its prevalence in pediatric populations are limited and conflicting, estimating up to 25% of children infected with the SARS-CoV-2 virus could go on to develop long COVID, though it’s more likely between 2% and 10%. Older children with existing chronic diseases or who had a more severe COVID-19 infection have an increased risk.

As COVID cases rise again and new variants emerge, coupled with school starting up again, previous waves indicate that long COVID cases could spike along with hospitalizations and deaths. Though kids generally have milder infections, they aren’t always spared from the worst outcomes of infection.

However, evidence suggests long COVID is underestimated in adults, and the same is likely true for children. Plus, some providers still don’t know much about long COVID, which may delay diagnoses, said Dr. Alexandra Yonts, a pediatric infectious disease physician at the Pediatric Post-COVID program at Children’s National Hospital.

“I’ve heard from a lot of our families that they had to go to multiple different doctors to even find someone that believed what their child was experiencing was true,” Yonts told Salon in a phone interview.

As testing and research funding dwindle, there is less data to uncover some of the unknowns surrounding long COVID. It’s not clear what causes long COVID, nor what its long-term consequences are, though some of the effects it has been shown to produce in the brain alarmingly mirror those caused by neurodegenerative diseases. What we do know is that the inflammatory response triggered by a COVID-19 infection extends to the cardiovascular system as well as the neurological system, said Sonia Villapol, Ph.D., a neuroscientist at the Houston Methodist Research Institute.

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“Frequently, the infection can prompt the reawakening of other viruses, induce tissue damage and even lead to disruptions in the microbiome balance,” Villapol told Salon in an email. “This intricate interplay of factors has the potential to disturb the immune system, heightening the vulnerability to other ailments and perpetuating lingering COVID symptoms that resist fading away.”

Charlie McCone, a long COVID patient and advocate said the spread of the condition could shape up to be “the greatest mass-disabling event in human history.”

There is currently no cure or drug approved to treat long COVID. Instead, a few more than a dozen clinics across the country staffed with multidisciplinary teams of neurologists, pulmonologists, infectious disease specialists and others work to manage long COVID symptoms in children. But those facilities don’t have the capacity to handle the number of cases flooding in, while other children in remote areas have to travel hours or even fly in to make appointments.

“Where I practice in Northern California, we don’t have anything available,” said Dr. Dean Blumberg, chief of pediatric infectious diseases and associate professor in the Department of Pediatrics at the University of California, Davis.

“The closest center is in Southern California, so that makes it just not feasible for patients,” he added.

Like adult “long-haulers,” many families at earlier stages of the pandemic resorted to Facebook and patient advocacy groups to get care for their children. This patient advocacy movement is a large part to thank for the research and resources being put toward the study of the disease, Yonts said.

“When we first started on this journey, I was looking for information, and there wasn’t a lot out there,” Coviello said. “I found a mom COVID support group, and that’s where I get a lot of information.”

It took one month after Jack’s diagnosis to get an appointment at the Boston Children’s Hospital’s long COVID clinic, and another seven months until he could meet with a neurologist. Coviello said her family was lucky to live an hour’s drive away from this Boston clinic, but even those trips initially wore Jack out so much that he would sleep for two days after.

“He’s not just tired,” she said. “It is flat out, we can’t wake him up.”

Long COVID symptoms include severe fatigue, malaise, headaches and other neurological symptoms like brain fog, as well as nausea, decreased appetite, weight loss, joint pain and loss of smell and taste. Symptoms emerge in the three months after infection and last anywhere from a couple of months to years.

“Anything can pop up at any given time, and his symptoms change a lot,” Coviello said. “It’s like Whac-a-Mole. You’ll say, ‘Okay, we got rid of that symptom.’ Then something new pops up or that old symptom comes back again.”

The condition ranges in severity but can be debilitating, with about 80% of patients in Yonts’ clinic experiencing extreme fatigue, she said. Long COVID can also impact children’s mental health and development, especially after many were already facing academic delays due to virtual learning in the earlier stages of the pandemic.

“We had one young man that was set to go to college on a track and field scholarship — but because of this infection, that totally disappeared,” Yonts said. “He had to reevaluate his plan for post-secondary education and what his life is going to look like because the critical timing was when all this happened to him — that all fell apart.”

For Jack, long COVID impacted more than his physical health. He was a straight A student who played in the band and the basketball team. Although he’s managed to stay at grade level, at one point he struggled to do simple math additions due to his brain fog. 

With the help of a home tutor throughout seventh grade, he slowly built up his stamina from being able to focus on tasks for 20 minutes to two hours. He went through periods of depression and suffered from anxiety and panic attacks. Over time, his muscles atrophied from disuse and he also needed physical therapy. 

“It’s middle school, so everybody’s kind of figuring out their pecking order, and now you’re the guy that is no longer around,” Coviello said. “Your friends are asking you to go places and you missed the call because you were asleep.”

Many children with long COVID do improve slowly over time, and the number of new children diagnosed with the condition is decreasing as the population builds immunity to COVID-19.

For Jack, it has been a long journey of understanding his new limitations and giving himself enough time to rest so he doesn’t hit a wall and crash, his mother said. But he has been resilient. A year and a half after his diagnosis in June 2023, Jack started to see meaningful improvements. Now age 13, he has worked up to being able to play basketball for about 20 minutes at a time on good days. He even made it out to a Celtic’s game with his father, with their seats intentionally selected close to the entrance so he didn’t have to walk too far.

Still, Coviello worries if or when he’ll be able to return to the basketball team and his pre-COVID activities, as well as what the longer-term effects of his illness will be.

“We just look at the next day, the next week,” Coviello said. “We try really hard to stay in the moment.”