While doctors say the symptoms for children with “long COVID” seem similar to adults, the degree of brain fog, fatigue, difficulty sleeping and headaches can vary widely from child to child.
Diagnosing long COVID- 19, or post-acute sequelae of SARS-CoV-2 infection, in children too young to fully verbalize what they are experiencing can be challenging, and even older kids may have a hard time pinpointing why they can no longer concentrate at school or perform as well at sports and other activities after an infection.
Kapiolani Medical Center for Women & Children is participating in a federally funded study in an effort to understand whether the effects of long COVID are the same in adults as in children, and whether there are ways to prevent it.
Kapiolani is one of a select group of hospitals across the U.S. participating in the National Institutes of Health’s Researching COVID to Enhance Recovery — or RECOVER initiative — for children. The University of Hawaii John A. Burns School of Medicine is also participating in RECOVER, but focusing on long COVID in adults.
Although the pandemic has stretched on for two-plus years, long COVID still remains largely a mystery, according to Dr. Jessica Kosut, Kapiolani’s division director for pediatric hospitalists, who is leading the study.
There are far fewer studies on pediatric long COVID than for adults, and estimates of how many children and adolescents infected with the coronavirus get long COVID vary widely at anywhere between 5% to 10% to 25% or more.
The variability is due to having no standardized definition on long COVID and studies using different criteria, according to Dr. Monica Singer, a Kapiolani pediatrician with certification in pediatric infectious diseases.
Researchers hope the RECOVER study can help answer why some children get long COVID while others do not, what particular symptoms they get and whether vaccination status has an impact.
The answers can help in the development of treatment, which is currently limited to addressing symptoms through a multidisciplinary approach.
Kosut said it also is very important for Hawaii’s diverse ethnic population to be represented in the national study.
“We want to make sure that our Pacific islanders and mixed-race population, of which we have the highest in the country, get to be part of these research studies, so when it’s published it’s not just the mainland,” she said. “It’s making sure we’re part of the data.”
A range of symptoms
While the prevailing public perception is that COVID- 19 has little affect on kids, doctors confirm there have been pediatric patients in Hawaii who developed post-COVID-19 conditions and long COVID symptoms.
This includes pediatric patients who have developed a rare inflammatory syndrome where different parts of the body, including the heart, lungs, kidneys, brain, skin, stomach and intestines, can become inflamed.
Health experts do not yet know what causes the condition but have found many children with it had been infected with the coronavirus or been around someone with COVID-19, according to the U.S. Centers for Disease Control and Prevention.
While the syndrome can be serious and even deadly, the CDC said, most children diagnosed with the condition get better with medical care.
CDC defines long COVID as having a wide range of new, returning or ongoing health problems four weeks or longer after first contracting the coronavirus, which can last weeks, months or years.
Symptoms range from shortness of breath to cough, chest pain, fatigue, brain fog, insomnia and high heart rate. Patients often experience a combination of these symptoms but there is no test, the CDC said, to diagnose post-COVID-19 conditions.
Also, routine blood tests and X-rays may come back normal despite these chronic symptoms.
Some symptoms for parents to look for in children that indicate the possibility of long COVID include a persistent cough or shortness of breath following an infection, particularly if they can no longer keep up with their peers or their physical education classes, Kosut said.
Parents know their children best and should contact their pediatrician if concerned.
A recent international study in the Journal of the American Medical Association in July found nearly 6% of children who visited emergency departments with the coronavirus reported post-COVID-19 conditions 90 days afterward.
Those who were hospitalized 48 hours or longer, had four or more symptoms, or were ages 14 or older were more likely to have post-COVID-19 conditions.
Singer said in pediatric patients she has seen, symptoms have ranged broadly, from older children complaining of chest pain and difficulty breathing weeks or months after an acute COVID-19 infection to those with gastrointestinal symptoms such as abdominal pain and diarrhea that come and go weeks after the infection.
Anecdotally, she is seeing fewer patients suffering from long COVID symptoms with current omicron subvariants than with earlier variants.
“Overall it’s not as common in children as it is in adults, but I also think it’s underrepresented or understudied in children,” Singer said. “So we don’t necessarily know.”
Parents of younger children may say their former energetic child is now more quiet. Teens may be frustrated that they are not performing at the same level as before they got sick.
It is similar, in a way, to kids recovering from an Epstein-Barr virus infection or mononucleosis who expect to bounce back and be the same student or athlete that they were previously. However, recovery with these illnesses, as with COVID-19, can take time and recovery will not be instantaneous.
“I think the RECOVER studies, as we look ahead at what’s happening at the physiological level in these post-viral illnesses and hopefully figuring out what the appropriate treatments for those are going to be, are going to be helpful across a wide array of post-viral syndromes,” Singer said.
Parents who think their child may be suffering from long COVID should keep a log of symptoms and speak with their pediatrician about a plan for treatment, which could include referrals for physical therapy or neurology or pulmonology consultations.
There are also long COVID forums with support groups where parents can connect with one another for honest, open discussions about what did or did not work for them.
Participants needed
Kosut is still looking for new participants to enroll in the pediatric RECOVER study, which is seeking parent-and-child pairs. The Hawaii study is looking for children ages 7 to 25, including those that have tested positive for COVID-19 as well as those who have not, for a control group.
“What’s great about the study is you can have had COVID, you didn’t have to have COVID, or you can be unsure whether you had COVID,” she said, “and everybody, literally anybody, can be in this study.”
So far, the study has about 18 parent-child pairs enrolled.
In order to explain the process to families firsthand, Kosut is participating in the study along with her sons, 15-year-old twins who had mild cases of COVID-19.
“The more patients we can enroll, the more information we will get,” she said.
Participants will submit an initial saliva sample for genetic and antibody testing, along with blood samples from a kit mailed to their home. They will also have to fill out regular surveys that go through symptom checklists over a period of two to four years.
Kosut said the study also may help determine how many kids may not have known they were infected with COVID-19 or who are dealing with subtle symptoms of long COVID without knowing it.
If participants have been found to have persistent symptoms consistent with long COVID, then they may be tested for lung function or undergo X-rays or other imaging tests for further analysis.
The study does not involve treatment or medicine for COVID-19.
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Seeking participants
Interested in participating in the RECOVER study? Kapiolani is looking for parent-child pairs for children ages 7 to 25. Participants do not need to have a COVID-19 positive test.
Visit studies.recovercovid.org and under “Find RECOVER Study Sites Across the Country,” select “Babies, children and teens” and enter a Hawaii ZIP code in the search box. Search should yield Kapiolani Medical Center. Click the “Ask to join” button.
