In mid-March, Amy Thompson’s daughter, Amber, called her from a shift at Starbucks and told her mom she felt a tickle in her throat she couldn’t get rid of. Within hours, the college freshman had a fever and a nonstop cough. After some struggle to find a site that would take her, Amber tested positive for COVID-19.
Amy took care of her daughter as best she could, sometimes putting earplugs in at night so she could get some rest while her eldest child coughed and coughed. She waited for Amber to get better.
Six months later, that still hasn’t happened, Amy, a 44-year-old mom of three told HuffPost.
“We’ve seen I can’t tell you how many different doctors. She’s been hospitalized five times at four different hospitals because I just keep searching for people who can help us,” she said. “She’s seen a cardiologist, she’s seen an infectious disease doctor, we just saw a rheumatologist. They do acknowledge this is some sort of post-viral thing that is happening.”
But none of them, so far, has been able to help.
As the COVID-19 pandemic plows ahead, “long-haulers” have gained greater attention, shattering the narrative that in all but the most severe cases, the virus generally runs its course in two or three weeks. In “long COVID” support groups and a growing number of articles and personal essays, long-haulers describe an illness that has saddled them with a range of physical and mental symptoms for months on end.
But what is it? Why are some people affected by symptoms they attribute to the coronavirus for weeks and months, while others aren’t? How common is this experience? And what about children, who have been largely spared by the most severe outcomes of COVID-19, but whose lives can be upended by these possible long-term effects? What does “long COVID” look like for them — and how can parents struggling to help their children get answers?
“I’d say we know very little at this point,” said Dr. Sam Dominguez, a pediatric infectious diseases expert and medical director of the microbiology lab at Children’s Hospital Colorado. “What we do know is that most kids get better after their initial illness and do just fine … but we don’t have a good handle on this idea of: ‘Do some kids have long, persistent symptoms?’”
“It clearly is a thing,” echoed Dr. Yvonne Maldonado, a professor of pediatric infectious diseases with Stanford University Medical Center and chair of the American Academy of Pediatrics’ committee on infectious disease.
But it’s unclear what’s causing that “thing.”
Coronaviruses are not believed to be latent viruses, which incorporate themselves into a person’s DNA and stay with them, like the chickenpox virus, Maldonado said. Most people will “clear” the virus from their bodies, but the timeline on that can vary. Some people may take months, she said, for reasons that are unclear.
“The other possibility is that it’s reinfection, which is probably not as likely, or it’s an immune, long-term systemic response to whatever the virus triggers,” Maldonado said. “I think that’s going to be the most likely reason why we’re seeing these ‘long-haulers,’ but it remains to be seen.”
“[My daughter] has been sick on and off for nearly 150 days and we have no real guidance from medical professionals who have firsthand experience with this disease.”
– Kate, mom to a 12-year-old “long-hauler”
The relative newness of COVID-19 — and of the experience of long-haulers — makes finding appropriate care deeply frustrating, if not impossible, as parents and children bounce from one type of doctor to the next. And it’s important to understand the full range of possible outcomes for children infected with the virus, even if longer-term, post-viral complications are relatively rare.
“[My daughter] has been sick on and off for nearly 150 days and we have no real guidance from medical professionals who have first-hand experience with this disease,” said Kate, a 35-year-old from Massachusetts who preferred to use only her first name.
Her 12-year-old’s primary care physician is “wonderful” but has no idea how to treat the child’s symptoms, which include sudden, four-day bouts of fevers, nausea, shortness of breath and tachycardia, causing her heart rate to jump.
“As we speak, she has a 100.6 fever and woke up in tears [with] severe neck pain,” Kate said.
Of course, the stories from pediatric long-haulers run counter to what is generally true of children and COVID-19, which is that the more serious outcomes — namely, hospitalization and death — are uncommon. According to the most recent data from the American Academy of Pediatrics, which is really the sole organization tracking national pediatric COVID-19 data, there have been more than 500,000 cases in children in the U.S., or just under 10% of all COVID cases in this country. The vast majority of those did not require hospitalization.
Multisystem Inflammatory Syndrome In Children or MIS-C is a rare syndrome that experts generally believe is an overly strong immune system response to the novel coronavirus in some children that can cause life-threatening complications, but it is separate from these long-haul reports. That, too, is rare.
“Kids don’t get sick very often, and they tend not to get very sick when they do get infected,” Maldonado emphasized.
Long-haul parents like Amy do not want to spark panic among other parents. She has seen, in her own home — among her own children — the dramatically different paths COVID-19 can follow. When Amber got sick, the family was advised to behave as though they, too, were infected (they were unable to get tested). Indeed, Amy, her husband, and their two other children also developed symptoms but after a few weeks, everyone was pretty much fine. Except for Amber.
Amber now spends much of her time in a wheelchair, having developed extreme pain in her hands and feet. She is having seizures. She has dropped out of college this semester and is no longer working.
Her parents are still looking for answers. No one has been able to tell Amy what is happening to her daughter or why. No one has been able to tell her how it might be tied to her daughter’s initial infection with the virus — or what can be done to help her get better.
“While I know what has happened to my daughter is rare, it can happen,” Amy said. “She went from being a very active and healthy 18-year-old girl to spending the last six months in bed.”