September 2, 2020 by Megan E. Doherty
When 7-year-old Jake Mahler began showing symptoms of Covid-19 in mid-April, his mother, Cindy Mahler, stayed calm. An aerospace engineer in Clear Lake, Texas, Mahler is used to putting puzzle pieces together and taking a calm, cool-headed approach to problems. “Kids seemed to fare better,” she said. “So I wasn’t necessarily too scared.”
Jake’s symptoms stretched into early May. When he finally went four days without a fever by the middle of the month, Mahler thought it was over. But then his temperature came back. On her phone, Mahler has logged Jake’s fever regularly since April 14, when it first reached 101.5:
April 15: 101.6 | April 16: 101.9 | April 17: 100.5
April 20: 101.2 | April 25: 100.6 | April 26: 101.1
July 3: 100.8 | July 20: 100.2 | July 23: 100.6
July 28: 100.5 | July 29: 100.3 | July 30: 100.5
Now, four and a half months since he first got sick, Mahler says that Jake is still experiencing Covid-19 symptoms: exhaustion, intermittent low-grade fevers, sore throat, coughing, enlarged lymph nodes, painful limbs, insomnia, and mysterious splotchy skin that comes and goes.
“Never in a million years could I imagine that four months later our bodies are still trying to recover,” said Mahler, whose own Covid-19 symptoms began about five days before her son’s, and have persisted since. “We weren’t hearing about any of these stories right at the time. It was April. It was, ‘You have it for two weeks and you’re better.’”
At first, Mahler said, Jake's pediatrician believed them. Mahler’s own test came back negative, but her doctor said it was probably a false negative, and the pediatrician confirmed Jake had something viral that was highly likely to be Covid-19, too. Every two or three days, the pediatrician called to check-in. Concerned, she even sent them dinner one night.
But as their recovery dragged on, Mahler said, the symptoms continued and the support stopped. “She said, ‘Just stop taking his temperature. Jake, there’s nothing wrong with you and there’s nothing wrong with your mommy,’” Mahler recounted.
Mahler is not the only parent to report lingering symptoms from a suspected or confirmed Covid-19 infection. In recent months, news media and researchers have begun to focus on the phenomenon of self-described Covid-19 long-haulers — people whose symptoms last for months after they are infected. Sometimes dismissed or doubted by their doctors, people identifying themselves as long-haulers have formed support groups online, and they have become the subject of some research, including monitoring at Mount Sinai Hospital in New York City.
While most attention to long-haulers has focused on the experience of adults — who, in general, tend to experience worse effects from Covid-19 than children — the support groups have also attracted a stream of parents who say their kids aren’t getting better, either. Since July, Undark has been in touch with 28 families who report that their children, while not seriously ill, are stuck in a kind of limbo state. Those kids range in age from 17 years down to just 9 months old.
Many parents report that pediatricians, initially convinced the symptoms are caused by Covid-19, grow more skeptical as the weeks progress. Instead, suspecting anything from anxiety to diet to constipation, they view each ongoing symptom as unrelated to all the others.
But some researchers and physicians, while acknowledging the scientific uncertainty that still surrounds Covid-19, are concerned. Sean O’Leary, a pediatric infectious disease specialist and vice chair of the Committee on Infectious Diseases at the American Academy of Pediatrics (AAP), has been hearing reports trickle in of kids who haven’t recovered. “It does seem to be a real phenomenon that it may be happening in kids,” he said.
While there are some studies underway looking at children who have been hospitalized with severe inflammatory responses, O’Leary said he is not aware of anyone researching long-haul kids who have stayed at home with less severe symptoms. “It would be great,” he said, “if someone would be able to systematically look at it.”
Children typically experience a more mild version of Covid-19 than adults, and severe complications, hospitalizations, and deaths seem to be extremely rare. In light of those milder effects, some government officials — including Education Secretary Betsy DeVos and President Donald J. Trump — have sought to downplay the potential for serious risks to children, amid roiling debates over school reopening.
Still, experts say, there is evidence that children aged 10 and older are able to transmit SARS-CoV-2, the virus that causes Covid-19, at rates similar to adults, and a recent study found that children can carry high levels of the virus in their noses and throats. In extremely rare cases, children have experienced Kawasaki disease — an illness that causes inflammation in the blood vessels — or multisystem inflammatory syndrome in children (MIS-C), a serious condition that, according to the Centers for Disease Control and Prevention (CDC), has been associated with pediatric Covid-19. And according to data compiled by the AAP from this summer, cases, hospitalizations, and deaths from coronavirus are increasing at a faster rate in children than in the general public.
Research on long-lasting Covid-19 symptoms is in the early stages and has focused on adults, said Janelle Menard, a medical anthropologist and epidemiologist at the Women’s Institute for Independent Social Enquiry, a progressive think-tank based in Maryland. Menard helps run the Covkid Project, an initiative to track infection rates among children in the U.S.
For all of Undark's coverage of the global Covid-19 pandemic, please visit our extensive coronavirus archive.
“When [Covid-19] began,” she said, “this reel was playing in my head like, well, we don’t really know yet what the long-term consequences are going to be for a child whose organs are still developing.” Menard argues that statements suggesting the virus is not very risky to children are premature. “For pediatric Covid-19, we don’t even know yet what we don’t know,” she wrote in a follow-up email message.
“We need to have better data, because it’s like trying to be a pilot flying at night with no instrumentation,” Menard said. “If you don’t have solid surveillance data, how can you make good decisions?”
Indeed, while the CDC recently reported that as many as 20 percent of those aged 18 to 34 who have Covid-19 experience lasting symptoms, there’s no similar data available on children and younger teens. That absence has left parents like Jennifer Kubicza struggling to find answers. This spring, Kubicza says her entire Cheshire, Connecticut, family began experiencing Covid-19 symptoms. (After their two cats grew mysteriously ill, Kubicza said, the vet concluded they probably had Covid-19, too; one died.) Her husband received a positive Covid-19 test, and she and their two sons were presumed positive. Kubicza herself tested positive for antibodies in June. Their 12-year-old recovered after three weeks, but Kubicza says their son Cole, who is 10, has been sick for four and a half months.
Cole has Angelman Syndrome, a rare genetic condition that causes developmental and physical disability, and he is unable to speak. They didn’t know for sure he was sick until he started throwing up. Since then, he’s had several bouts of vomiting and diarrhea lasting 36 hours straight, along with shortness of breath and rapid breathing episodes. Cole also had such severe muscle spasms, Kubicza says, that he couldn’t walk for 45 days.
Fran Simpson, one of the founders of LongCovidSOS, a U.K.-based campaign for recognition of Covid-19 long-haulers, has two children who, she says, have been sick since mid-March, near the peak of the pandemic in Europe. Magnus, 6, has had recurring episodes of blurry vision, severe pain at the base of his skull, and a funny taste in his mouth. “Every morning he’s like, ‘My breath tastes of metal,’ and that’s gone on since he was ill,” said Simpson, a psychology lecturer at Coventry University. Although he has a history of epilepsy, these symptoms are new. Simpson said Magnus has had bouts of insomnia, intermittent fevers, coughing, shortness of breath, nausea, fatigue, diarrhea, testicle pain, and a bloated stomach.
Simpson said her daughter Saskia, 9, became ill a week after her brother. Her throat hurt, her head pounded, and she had an earache. She was so dizzy and short of breath that, Simpson recalled, she nearly collapsed trying to come downstairs one day. Saskia spent the better part of six weeks shifting from bed to sofa and back again. She was pale, covered in rashes, nauseous, and stopped eating.
At first, Simpson couldn’t get her family tested. By the time she and Saskia got tests they could self-administer, 10 weeks had passed since their illness began. The tests came back negative, but according to Simpson, her general practitioner said she must have had Covid-19. The pediatrician, Simpson said, had ruled out Kawasaki syndrome and agreed the children had been infected with the novel coronavirus, too. Simpson, who completely lost her sense of smell, says her children still can’t go out on their scooters for longer than 10-minute spurts. If symptoms wane and they try to play, they get worse. “We could have a catastrophic level of chronic illness among our children that may impact them forever,” she said.
Like Mahler, Simpson has felt dismissed by her children’s doctor — something adult long-haulers also report experiencing. As their illness dragged on, she said, she was told the coronavirus couldn’t possibly still be causing symptoms weeks later. “He just didn’t want to hear about Covid,” Simpson recalled of her children’s pediatrician. “He said, ‘It’s probably nothing’” and that “‘everyone thinks they’ve got Covid right now.’” But, Simpson said, “I knew for myself and for them, this is just the same thing, and every day we wake up in this same nightmare.”
These parents’ fears are unfolding in the midst of enormous uncertainty about the effects of Covid-19 on children — and about the virus’ long-term effects on people of all ages. Basic questions about long-term Covid-19 symptoms remain unanswered, such as whether the virus lingers in people’s bodies, or whether lasting symptoms could be a result of an overactive immune response, organ damage, problems with gut bacteria, or even previously latent viruses reactivating.
Much of the concern now focuses on how long people remain contagious, and whether the virus itself lingers in the body. “In my analysis of this data, I don’t think this is the result of the persistence of the pathogen, because you clearly see the viral load go down, and that their body’s immune system is not behaving as though there’s a pathogen present,” said Amesh Adalja, an infectious disease and biosecurity expert at the Johns Hopkins Center for Health Security who has seen some long-haul patients. He notes that, in patients experiencing continuous Covid-related symptoms, markers that would indicate the immune system is still engaged in a battle with a pathogen are all normal. “I would think with a virus like this, it’s unlikely that there’s persistence of viral material that’s causing this, because you would then see a reaction of the immune system to this that’s measurable, and we don’t see that.”
Other experts caution that people with long-running symptoms could still be infectious. “The notion that people aren't infectious after a certain time period is grounded in very small sample sizes,” said Daniel Griffin, a specialist in infectious diseases at Columbia University Medical Center. “Now we’re taking an observation of a few dozen individuals and applying it to billions of people, he added. “If we’re wrong, it’s a huge problem.”
But, Griffin said, his “educated guess” is that people with long-lasting symptoms are exhibiting an “immune response, rather than the virus.”
The dynamic sounds familiar to some clinicians and researchers who have spent years studying other complex chronic conditions.
Amy Proal, a microbiologist at the PolyBio Research Foundation, a private-donor-funded nonprofit organization focused on complex inflammatory diseases, draws parallels to conditions like Lyme disease — a tick-borne bacterial illness that can leave some patients with chronic symptoms. For years, researchers have debated whether those symptoms are the result of bacteria lingering in the body, an overactive immune response, or something else. Proal argues that researchers and doctors should take the threat of pathogen persistence seriously — and that, in the past, many have been too quick to dismiss that possibility. In these Covid cases, she said, “you don’t want to repeat this historical pattern.”
Proal points out that chronic conditions are associated with many pathogens. Parents should be aware, she said, that all well-studied bacterial or viral pathogens that she knows of have related chronic syndromes, including Zika, Ebola, measles, and polio.
While she cautions that researchers simply cannot know whether the long-haulers will become life-longers, “it's very unlikely,” she says, that SARS-CoV-2 would be the one virus that doesn't have an associated chronic condition.
O’Leary, the pediatric disease specialist, who himself has had intermittent, on-going Covid symptoms since March, has heard researchers conjecture about what could be driving long-haul symptoms. “But we don’t know, it’s all speculation at this point,” he cautions. O’Leary says that it will be difficult to determine if long-term symptoms after SARS-CoV-2 are more common than with other viral infections — some of which can result in persistent symptoms in some kids. With SARS-CoV-2, he noted in a follow-up email, “we still need to understand if children with persistent symptoms have immune system abnormalities that can be measured with currently available tests — most children with ongoing symptoms from other viruses do not — or if somehow the virus is persisting within the body.”
Without more data, both doctors and patients are left with few resources in the middle of a fast-moving pandemic. “We’re going to need to develop a training manual to help professionals deal with this crisis,” said Leonard Jason, director of the DePaul Center for Community Research. After being contacted for this article, he began creating a survey to study pediatric long-term Covid symptoms. “It’s not that you can’t do anything. It’s just that most physicians have no idea how to treat things like this.”
In the absence of clearer medical information, parents have gathered online — and been left to speculate about their children’s continued symptoms. “Everything that I’m feeling and seeing is really showing that this is an active virus infection,” said Alicia Gaffney, a registered nurse who lives in Sausalito, California, and who has been sick since late February along with her daughter, Brooke, aged 9 months. “There’s no extensive research on this. We can’t say for sure that’s what it is. But what I’m feeling and what I’m seeing is that it’s still in my body and still in my baby’s body.”
Gaffney couldn’t get her hands on a test until she’d already been feeling sick for a month. The first test was inconclusive, and the second was negative. She’s had both positive and negative antibody tests. Her primary care doctor said she was presumed positive, as have most of the specialists she’s seen — and she’s “seen every specialist under the sun,” she added.
Gaffney said that Brooke’s symptoms have largely mirrored her own: bloody mucus coming out of her nose, severe diarrhea, coughing, and wheezing. Her daughter also has dark veins, something she had noticed on herself. “I’ve posted on the support group that I’m on. I asked the other moms if that’s happening to their kids, and they’re posting photos of their little two-year-olds and three-year-olds getting these dark veins on their bodies,” Gaffney said. “I don’t know what that means, but it’s scary to me.”
Denise Kaplan described the experience of Covid-19 moving through her family as “a rollercoaster.” This spring, she watched both of her sons get sick while her husband of 17 years, Scott, died of Covid-19 after 40 days in the hospital. “Everybody is trying to think of, ‘How do I get back to the life that I knew before?’” Kaplan said.
“But for us, obviously our life is going to be completely different because we’ve lost a member of our family,” she added. “But I don’t think people are thinking long-term. Even our medical community is not looking at it that way. It’s, ‘Let’s fix you enough so that you can get out of here and everybody can just move on.’”
A week after the Centennial, Colorado, family dropped Scott off at the emergency department doors on March 25, Kaplan says her 11-year-old son Ethan collapsed to the floor with such excruciating chest pain that he could barely breathe. He had been only mildly symptomatic in the preceding days. The sudden turn brought him to the children’s hospital right next door to where his father was on life support. Despite a positive Covid-19 test and low blood pressure, Kaplan says the hospital staff sent him home a few hours later, saying his oxygenation levels were stable.
Six weeks later, on May 12, Kaplan says Ethan tested negative for Covid-19. But even today, Kaplan says, the former competitive athlete who regularly participated in basketball, baseball, karate, and golf can now barely walk around the neighborhood.
Prior to the pandemic, his older brother, Patrick, 14, had previously experienced frequent migraine and nausea, and had been diagnosed with autism and postural orthostatic tachycardia syndrome (POTS) — an autonomic dysfunction that can cause lightheadedness, fainting, and rapid heartbeat. Since Covid-19, Kaplan reports that he’s had sore, painful hands and feet, fevers, fatigue, chest pain, a runny nose, and a month-solid of non-stop vomiting and diarrhea in 12-hour cycles. “He was in so much pain he didn’t even want to sit and play video games or toss the ball,” Kaplan said. “And that’s kind of the go-to activities for him.” All three of his Covid-19 tests came back negative, though he tested positive for antibodies toward the end of May.
“We have no idea what to expect. And I know that they’re not the only kids out there that are sick,” said Kaplan, urging researchers to track and study children who aren’t recovering.
“So what do we do?” she added. “That is the part that nobody knows.”
Megan E. Doherty is a writer and photographer based in Chicago, Illinois.