Children Are Covid-19 Long-Haulers, Too

Some children infected with Covid-19 experience debilitating symptoms months later. Parents struggle to find out why.

Photo: Geber86/Getty Images

When 12-year-old Samantha got sick back in February 2020, her family believed it was a stomach bug. The healthy Los Angeles student so rarely got ill that her mother, Jamie Coker-Robertson, didn’t think much of her early symptoms. It was clear a virus was spreading through Samantha’s classroom, but most parents shrugged it off as a typical illness any child could expect to pick up at school in the winter months, such as a cold or flu.

Then, students began to “drop like flies,” says Coker-Robertson. “Half of her class was out for a week at a time.”

In previous flu seasons, students would return to school after two to three days. But this time Coker-Robertson noticed that it would take one to two weeks for kids to recover, sometimes longer. “None of them had the same symptoms,” Coker-Robertson says. “Nobody could really figure out what was going on.”

Samantha’s symptoms started with dizziness and lightheadedness. Then she lost her appetite and developed nausea. For almost a week she was bed-ridden. “I just started crying,” Coker-Robertson recalls. “I was like, ‘Is my kid dying?’”

Samantha, who later tested positive for Covid-19, recovered after a couple weeks but continues to have gastrointestinal relapses to this day. Her stomach pain, which includes severe reflux and nausea, hasn’t gone away for 10 months.

One serious condition that seems to affect some children who’ve contracted Covid-19 is multisystem inflammatory syndrome, or MIS-C. Since October, the CDC has reported more than 1,000 confirmed cases of MIS-C, with 20 children having died from it. According to the Mayo Clinic, in children with MIS-C, organs and tissues such as the heart, lungs, digestive system, and brain can become severely inflamed. A study published in JAMA Neurology in July found that out of 27 young patients under the age of 18 who developed MIS-C after Covid-19, 14.8% exhibited new neurological symptoms such as headaches, muscle weakness, and reduced reflexes, among others.

“We have seen many children that have post-infectious multisystem inflammatory syndrome,” says Nick Hysmith, MD, medical director of infection prevention at Le Bonheur Children’s Hospital in Memphis, Tennessee. “These children have symptoms that have ranged from prolonged fever to heart dysfunction, leading to ICU admission. We see MIS-C occur usually several weeks post-infection [from Covid-19].”

According to Hysmith, there are numerous theories as to why MIS-C develops in children after Covid-19, although the pathophysiology isn’t well understood yet. Some potential risk factors are ongoing low-level inflammation or autoimmune conditions. “It is possibly an exaggerated immune response,” he says.

But for kids like Samantha whose symptoms persist 10 months after first contracting the virus, many questions remain unanswered, including whether the cause is in fact MIS-C or if they’re in the same mysterious boat as adult Covid “long-haulers.” Reporting suggests that there are handfuls of children like Samantha who are living in a post-infection “limbo state.” Undark spoke to families of more than 28 children since July who have been ill for months after contracting Covid-19, some since March. They’ve complained of blurry vision, headaches, and strange tastes in their mouths. Former student athletes now struggle to walk around their neighborhoods. Other children, like Samantha, are also dealing with persistent nausea, fatigue, and stomach pain. Most are left without any sort of explanation or timeline for when they can expect to feel completely back to normal.

Greenspan compares the lingering effects of Covid-19 to an electrical grid. When one part of the body is inflamed, it triggers inflammation in other parts of the body.

There are no clear treatments for lingering Covid-19 symptoms in children (or adults, for that matter), but an experimental online boot camp developed by the Pulmonary Wellness Foundation — a New York-based nonprofit organization comprised of doctors who specialize in pulmonary health and complex medical cases — aims to reduce and treat lingering symptoms for young Covid-19 long-haulers like Samantha. The boot camp is the nation’s first virtual Covid-19 rehabilitation and recovery clinic, and it involves 42 days of online breathing, exercise, and other therapy programs. Through pulmonary cardio, flexibility training, walking exercises, and meditation, the free boot camp intends to improve physical and mental health by building stamina and strength. It also includes online seminars and Q&A sessions with the foundation’s pulmonary experts for patients and parents. The therapies are not proven to work, but other organizations like Mount Sinai are experimenting with similar treatments.

The Pulmonary Wellness Foundation’s boot camp founder is Noah Greenspan, DPT, CCS, EMT-B, a clinical specialist in cardiovascular and pulmonary physical therapy. While the program was originally designed for older people with complex medical conditions and chronic illnesses that need specialized care, Greenspan realized the program may have potential for people, including children, managing post-Covid symptoms as well.

“One of the key components in Covid-19 long hauls is that we cannot overdo it,” he explains of symptom management between patient and provider. “Once people overdo it, it’s like flooding the engine of a car.” Greenspan argues that his team’s slow and steady therapy program can help rebalance the autonomic nervous system, which regulates bodily functions. The breathing component of the boot camp, for example, may help lessen respiratory symptoms of Covid-19 by strengthening the lungs, Greenspan says, while also lowering stress and anxiety. Then, light exercise helps rebuild aerobic capacity, which might be helpful for combating lingering weakness. This remains speculative, however, as it’s unclear whether any of the measures will definitely provide relief, and they haven’t been clinically tested. Nearly 1,300 people across the world have enrolled in Greenspan’s boot camp program so far, including children.

Samantha has seen many specialists, many of whom don’t have answers or plans of action, says Coker-Robertson. She has seen primary care doctors, gastroenterologists, eye doctors, and holistic doctors with no luck. She underwent a colonoscopy and endoscopy that came back normal. Her gut looked healthy in imaging and testing, with no tangible explanation for her symptoms. Eventually Coker-Robertson turned to Greenspan for help.

“This is something we’re hearing a lot of,” Greenspan says about young people with conditions similar to Samantha’s. Kids who experience severe reflux after Covid-19 do so because it is an inflammatory-based condition, he believes, and that same reflux also has the power to activate other systems in the body. Greenspan compares the lingering effects of Covid-19 to an electrical grid. When one part of the body is inflamed, it triggers inflammation in other parts of the body.

Symptoms that just won’t go away can be anxiety-provoking for adults, but for kids, it’s even harder. “It’s isolating,” Greenspan explains. “It can also be depressing, especially for so many of the long-haulers who have never been sick before.”

He calls the aftereffects of Covid-19 a “mixed bag,” meaning that what may work for one child won’t necessarily work for the next, which makes it more difficult for parents to find solutions for their kids. But Greenspan is hopeful that time will be the answer for most. “[Recovery] is going to take time,” Greenspan explains. “It’s not going to be instant, but we can’t give up on it.”

Ashley Zlatopolsky is a Detroit-based writer, editor and content strategist. You can follow her on Twitter at @ashley_detroit.

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