It’s been five years since the world shut down because of COVID-19. Some consider the pandemic to be a thing of the past and have moved on with their daily lives, ditching masks and returning to events and activities that would have been decried as superspreaders during the height of the pandemic.
For many people, though, the pandemic is still raging on — and for some, life has never been the same since they contracted COVID-19. Following the rise of the disease came the emergence of long COVID, a chronic illness that can develop after contracting COVID-19 even once, and its effects can last for as little as three months and as long as several years. Because it’s a relatively recent phenomenon, there is no uniform definition for the disease, but common symptoms include chronic fatigue, memory and cognition issues often referred to as “brain fog,” a loss of taste and smell and respiratory issues.
And it’s not only the immunocompromised or elderly who can develop long COVID. The condition has started to appear in children as well, and treatment options can be fairly limited. But hospitals and health organizations across the country have started programs to educate healthcare professionals about the disease, with one such program being led by the Kennedy Krieger Institute.
The More We Know
The Pediatric Long COVID ECHO is an educational program taking place over a 10-week semester that trains primary care providers in best practices for children who have contracted long COVID. Kennedy Krieger’s long COVID clinic first opened in the summer of 2020, but as reports and studies about the condition continued to emerge in the coming months, the need for proper education on long COVID became especially important as doctors and patients alike struggled to navigate it.
“We have a longstanding history of treating kids with complex conditions using a sort of multidisciplinary approach, and we felt that we could serve the need [to treat long COVID] if it came about,” says Dr. Laura Malone, a pediatric neurologist and the director of the Pediatric Post-COVID-19 Rehabilitation Clinic at Kennedy Krieger. “The goal of [The Pediatric Long COVID ECHO] is to learn how to recognize it and initiate treatment, so we can make care more accessible for children who need it.”
Are My Kids at Risk?
The ECHO program launched about a year ago and has since trained nearly 100 healthcare professionals and educators in subjects like headaches and dizziness, POTS/dysautonomia, fatigue and mental health considerations relating to the condition.
Malone notes that studies have determined that around 1% to 5% of children in the United States have long COVID symptoms, though she believes that some of those studies are conservative in their estimates.
“I think that in some cases, the prevalence rates that are out there are actually underdiagnosing,” she explains. “A lot of long COVID symptoms are difficult for children to recognize, and they might not be attributed to long COVID at first, but to other health issues.”
One recent study, “Long COVID in Young Children, School-Aged Children, and Teens,” published in Journal of the American Medical Association’s JAMA Pediatrics in May, determined a much higher prevalence for children with a history of COVID-19: 10% to 20%.
That’s almost 6 million children in the U.S., which is higher than the number of children with asthma — the most common chronic health problem in children — according to the study.
While people with pre-existing health conditions are more prone to long COVID, people with no disabilities or health issues can also develop this condition. It can affect children who had little to no symptoms when they had COVID, according to the study published in JAMA Pediatrics.
“Because children tend to be pretty healthy, most kids don’t have any pre-existing conditions, but can still get long COVID,” Malone says. “There’s a slightly increased risk for people with pre-existing conditions like diabetes, obesity and cardiac conditions, but it’s not only people with those conditions that can develop long COVID.”
A Need for Treatment
Despite the increased need for care and treatment for people with long COVID, fewer than 20 dedicated long COVID clinics are currently operating in the United States. Families seeking treatment for the condition often have to travel long distances to receive it. The ECHO program is held virtually, with participants across the country, which helps make long COVID treatment methods more accessible and mitigates the need for travel.
Kennedy Krieger’s Pediatric Post-COVID-19 Rehabilitation Clinic primarily uses individualized care, as long COVID symptoms can vary from person to person. The hospital helps long COVID patients to make slow, gradual progress in dealing with physical and cognitive fatigue, as well as working with schools to ensure that children with long COVID can receive an education in a way that accounts for these new symptoms.
Because COVID is a complex illness, it can take a while to treat and may require multidisciplinary care. The ECHO program aims to make those methods more accessible to other doctors and educators. Currently, Kennedy Krieger runs the program twice a year, and the team behind the program is looking into asynchronous options so participants can complete the curriculum on their own time.
Since an immediate cure for COVID is lacking, Malone notes that the best long COVID care is preventative.
“There have been studies, both in adults and children, that have shown that the COVID 19 vaccine has actually been able to show a decreased risk of developing long COVID, and so that’s one of the things that we continue to recommend for individuals,” she says. “COVID awareness has dipped, but unfortunately, COVID is here to stay. It’s really important that we as a community and healthcare organization are working to try and treat kids that are having these more indolent, difficult-to-describe symptoms, because it can really impact their day-to-day functioning.”
Progress Towards New Treatments
Our understanding of long COVID continues to develop as more scientists study the disease. The study in JAMA Pediatrics notes that symptoms of long COVID vary depending on the age of the affected child. Symptoms like having trouble focusing and back pain do not arise until the afflicted patient is school-age or older, while symptoms such as trouble sleeping, a dry cough or a stuffy nose can be apparent even in infants. Adolescents are more likely to see the reemergence of classic COVID symptoms like loss in taste or smell and have more fatigue-related symptoms and trouble with memory.
The important thing for parents to keep in mind is that for some children, symptoms are consistent, while for other children, they come and go – or new symptoms develop, according to the study. Long COVID symptoms can last for months or years.
In some cases, children and adults with long COVID were reported to have postexertional malaise (PEM), in which symptoms flare up or new symptoms arise after minimal physical or mental exertion or sensory overload, often 24 hours after a triggering event.
But treatments for long COVID may not be that far away. A study conducted in Japan in early March, which was published in peer-reviewed open access journal Scientific Reports, found that a method that has been practiced in Japanese medicine since the 1960s could be effective against the disease. Epipharyngeal abrasive therapy (EAT), regular swabbing of the nostrils with a zinc chloride solution, was found to be effective in reducing long COVID symptoms. The study hypothesizes that viral RNA from COVID can build up in the nasal cavity, causing persistent long COVID symptoms, and that regularly clearing away this residual RNA could reduce symptoms.
