After testing positive for the coronavirus, Ami Korn, 13, holed up in his Tarzana bedroom with his dog, Barley, week after week, waiting for the nagging headache and earaches to go away.
Ami, aged 14, recalled, "I just assumed I was going to be fine." "The majority of the youngsters were fine."
Instead, the adolescent became sicker. He experienced nausea and dizziness, as well as headaches, lung irritation, muscle aches, and exhaustion. He found it difficult to walk a block without becoming exhausted. His parents took him to doctor after doctor in search of assistance.
Korn missed a lot of eighth grade due to his extended COVID – a condition in which symptoms last for weeks, months, or even years following a coronavirus infection.
Ami has restored his physical strength and is back to playing baseball, regaining his endurance on the field, more than a year later. His work in cardiac rehab, as well as acupuncture, medicine, vitamins, and other therapies, are credited by him and his parents. However, he is still suffering from brain fog and is having trouble with his memory in school.
He used to be proud of his memory, but now he can't recollect anything that happened in class just a few days ago. He said, "I could recall going to math class on Monday." "However, I couldn't recall anything I had studied."
Children and teenagers have been less likely than adults to develop severe COVID-19 illness, but health professionals have warned that lengthy COVID can induce a variety of unpleasant and sometimes debilitating symptoms in young people.
Scientists are still trying to figure out why certain individuals experience lengthy COVID and how common it is. Estimates vary depending on how scientists describe the disease, with some researchers placing the number of people infected with COVID-19 at approximately 10% and others putting it at up to 50%. One research in Long Beach by the Centers for Disease Control and Prevention indicated that one out of every three adult COVID-19 survivors had at least one persistent symptom after two months.
"We don't know what exactly causes it biologically. We have no idea how to stop it. And we have no idea how to deal with it "At a recent presentation on extended COVID, Dr. Michael Peluso, an assistant professor of medicine at UC San Francisco, said.
Trying to provide any guidance on the phenomenon has been "like fixing the engine while the plane is in the air," according to Dr. Lawrence C. Kleinman, professor and vice chair of the pediatrics department at Rutgers Robert Wood Johnson Medical School, who is one of the researchers looking into long COVID in children through a National Institutes of Health-funded initiative.
The body of research on children and extended COVID has been thinner than that on adults. "We just don't know yet" for many of the questions that parents have, according to Kleinman, including whether any specific variables can put children at danger. He wants to know if lengthy COVID has any other effects on their development other the identified symptoms.
Several experts bemoaned in the Pediatric Infectious Disease Journal in December that many existing research on extended COVID in children and adolescents lacked a control group, making it difficult to identify whether symptoms were caused by COVID-19 or pandemic stress.
In the United Kingdom, a recent study compared the reported symptoms of thousands of children aged 11 to 17 who had tested positive for COVID-19 months before to thousands of children who had not. According to the study published in the Lancet, children in both groups experienced weariness, headaches, and other symptoms, but those who had received COVID-19 three months prior were more likely to have three or more symptoms.
Even when analyzing individuals who were never hospitalized, brain imaging studies in the United Kingdom revealed substantial abnormalities in the brains of adults who had been infected with COVID-19. It's yet unclear what this means for younger people, whose brains are expected to alter dramatically as they grow older, according to Elaine F. Walker, director of Emory University's Mental Health and Development Program.
Viruses have long been recognized to produce inflammation in the brain, which can lead to neurological problems, according to Walker. At the same time, whether or not they contracted COVID-19, adolescents have been dealing with the pandemic's disruptions and concerns, which are compounded by adolescent stress hormones.
"It's quite difficult to separate that in the case of a single patient," Walker explained. "However, we can examine their performance on cognitive tests — or even the results of an MRI — before and after illness."
Parental advocates have lobbied for more attention to be paid to the problem. "We're caught with sad and unhelpful conversations about prevalence in children, when we should be focusing on how to support them," Helen Goss, a senior lead representative for the advocacy group Long COVID Kids, said.
Dr. Vanessa Wu, a physician with the UCI Health COVID Recovery Service, said her adolescent COVID patients have had ongoing symptoms such as brain fog, exhaustion, gastrointestinal disorders, and respiratory issues. The variety of symptoms can be so wide that "long COVID" is probably an overly broad word.
Some people also have increasing anxiety or mood swings, which raises a "chicken and egg" conundrum, according to Wu. "Are folks nervous and depressed as a result of their various symptoms and how they're affecting their daily lives — or is it a result of their long COVID?"
In January 2021, Ami Korn became afflicted for the first time. When it became evident that he was not going to recover, his parents, Ze'ev and Linda, began searching the internet for answers and contacting doctors via email.
"We basically started doing a lot of research because no one knew anything at the time," Ze'ev Korn stated.
The Korns stayed up late the night before, learning about "COVID long haulers" whose symptoms had not subsided. They discovered Facebook groups for people suffering from the illness. They made appointments for Ami with one doctor after another. Within seven months, Ze'ev calculated that the teen had more than 50 doctor's appointments.
Ami was sleeping 12 to 16 hours a day at one time, he said. His heart rate soared even as he padded the few steps from his bedroom to the kitchen. Baseball seemed impossible. He didn't get out with his friends as much as he used to.
He now feels as if he has lost eight months of his life, he said. He was shocked and grateful to be able to walk a block around five months into his sickness, even if it fatigued him. He walked two the following week. He began cardiopulmonary therapy with patients in their 70s and 80s, using a treadmill and stationary cycle while having his heart rate and oxygen levels monitored.
Getting vaccinated against COVID-19 appeared to assist him as well, according to his father. Ami felt considerably better physically by the fall and was looking forward to returning to private school in Los Angeles.
Ami, on the other hand, began to have panic episodes before falling asleep at home each night. His family feels it was a combination of stress from what he had been through and continuous fear about others disobeying COVID-19 safety instructions and going to school without a mask. His father claims that a few kids coughed on him on purpose.
The family moved to Atlanta to attend a school where they felt more secure regarding safety standards, which helped to alleviate their fears. When Ami returned to school, he discovered, "I'm not completely well."
Here's how the adolescent puts it: On Monday, he can sit carefully in English class and learn about independent clauses, but by Wednesday, when he returns to the same class to learn about complex clauses, he has forgotten what an independent clause is. He can learn how to solve a math issue one day and then fail to recall it the next.
He said, "What am I meant to do on tests?"
Ami, who had a packed schedule of honors classes, is now planning to retake ninth grade. He and his parents made the decision to reduce his schoolwork to just two classes.
The family has been pursuing neuropsychological and psycho-educational evaluations to help them figure out what his educational future would entail. For a long time, the adolescent had fought the idea.
"I despised the concept of accommodations," he explained. "It was another way of me acknowledging to myself, 'OK, I need something I didn't need before,'" she explained.
The epidemic has been dubbed a "mass debilitating event" by disability groups. Long COVID has been classified as a handicap by the federal government under the Americans With Disabilities Act if it interferes with any "major life activities" — a broad category that includes walking, thinking, sleeping, and bodily functions. However, activists stress that greater awareness is needed to guarantee that disabled people have access to accommodations and services.
"That is not something we have historically done well as a country," said Rebecca Cokley, a Ford Foundation program officer for disability rights in the United States. "We need to see an unprecedented amount of investment in our current social safety net across the board," especially in the school system, to fulfill the increasing need.
Long COVID, according to Cokley, resembles the symptoms of myalgic encephalomyelitis, often known as chronic fatigue syndrome, for many individuals. "Historically, those individuals have been informed that their symptoms are all in their heads," she said.
In many ways, the Korns have been lucky. Ze'ev Korn, a psychotherapist at UCLA Health, was able to seek assistance from other members of the health system. Linda was able to take a month off from her job as an audiobook producer in order to assist with Ami's care coordination. Ami said that his doctors did not dismiss his symptoms, which are a typical complaint among long-haul truckers.
They, on the other hand, find it difficult to communicate what is going on to other children and families. "It's not visible like a broken arm or a broken foot," Linda Korn explained. "It's difficult for people to comprehend."
According to Ze'ev Korn, a doctor recently informed them it would go away with time. That is what the Korns hope for. However, because so little is known about Ami's sickness, Ze'ev believes they must figure out how to effectively help her right now.
Ami has been attending to Flying Change Equine Therapy in the Atlanta region to help him increase his mood and organize his schedule. He grooms and feeds the horses, as well as working with Mercedes, a young mare who has been sick for about a year with pneumonia.
The adolescent expressed gratitude for each day he wakes up, noting that several children had died from COVID-19. He's relieved to be able to run once more.
"And, even though I want it to be better," he continued, "I'm grateful that my brain is as good as it is."
This article first appeared in the Los Angeles Times.