‘We have our work cut out for us’: Raising awareness of pediatric long COVID
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Key takeaways:
- Physicians said the medical field must overcome a misconception that long COVID cannot happen in children.
- One parent reports a doctor not believing her child’s symptoms.
The medical world has to overcome the perception that children are not susceptible to long COVID, physicians said during a U.S. News and World Report webinar on the topic.
Approximately one in eight patients with COVID-19 experiences long COVID, according to data published last year. Among pediatric patients, adolescents are overrepresented.
“The CDC actually uses symptom duration of 4 weeks of symptoms after acute COVID infection in order to define long COVID,” said Laura Malone, MDPhD, codirector of the pediatric post-COVID-19 rehabilitation clinic at the Kennedy Krieger Institute. “There's lots of ongoing questions that are sort of on everybody's mind, and more research is needed.”
New study
One international study published this week in JAMA Network Open examined long COVID in a group of 382 SARS-CoV-2-positive individuals aged 12 to 25 years and compared them with a control cohort of 85 SARS-CoV-2-negative patients.
Ultimately, the prevalence of WHO-defined post-COVID-19 condition at 6 months in the study group was around 49% compared with 47% in the control group, which the researchers said raised questions about WHO’s case definition of long COVID — a broad definition that “encompasses any symptom occurring in the aftermath of acute COVID-19, does not require symptom persistence since the infectious event, and does not stipulate significant disability,” they wrote.
“Symptom severity at baseline was the main risk factor, and correlated with personality traits. Low physical activity and loneliness were also associated with the outcome,” they wrote.
“These results suggest that factors often labeled as psychosocial should be considered risk factors for persistent symptoms. This does not imply that [long COVID] is ‘all in the mind,’ or that the condition has a homogeneous, psychological etiology. Rather, there might be heterogeneous biological, psychological, and social factors engaged in triggering and maintaining the symptoms of the individual,” the authors wrote.
‘We have our work cut out for us’
In the webinar, Amy Edwards, MD, director of the pediatric COVID-19 recovery clinic and associate medical director for infection control at University Hospitals Rainbow Babies and Children’s Hospital in Cleveland, said the misconception that children cannot get long COVID was common.
“I have seen pediatricians, rheumatologists, immunologists all say that long COVID is really associated with severe COVID-19 in adults and adults who have prolonged ICU stays. [They say], ‘This is not a thing in children, this is depression, or this is anxiety,’” Edwards explained.
“I've done grand rounds here in my own hospital and then some of the surrounding hospitals, I've done news presentations, anything just to try to get the word out that long COVID is real,” Edwards said. “It is a thing that kids experience, and we have to help these kids because otherwise there are serious concerns about what the long-term outcomes for these kids might be if they don't get help.”
“We have our work cut out for us to kind of create awareness that this is the real deal,” said Uzma Hasan, MD, medical director of the pediatric post-COVID care program and chief of pediatric infectious diseases at Cooperman Barnabas Medical Center in Livingston, New Jersey. “These children are really struggling, and if we don't offer them the support in this right time ... it's going to be tougher for them to get back to normalcy.”
Edwards described treatments used in the rehabilitation clinic she runs, such as diet modifications to alter salt intake, acupuncture and massage therapy — because “typical painkillers” often do not work for patients — and stimulants for brain fog, among other things.
“It's kind of a mishmash of lifestyle modifications and some medications and different things to really try to control the symptoms,” Edwards said. “Our hope is that if we control their symptoms really well, then maybe the fact that these kids are young and healthy [means] their bodies can bounce back and heal themselves. And I will say that that does seem to hold true for about 50% to 60% of our kids after 6 months or 9 months of wraparound support.”
‘We need help’
U.S. News and World Report played a prerecorded interview with a mother of a 12-year-old daughter who she said has been grappling with long COVID since 2020.
She described how her usually athletic daughter’s physical well-being began deteriorating after seemingly recovering from an early, uneventful case of COVID-19, with symptoms such as uncontrollable shaking, rashes across her body, blurry vision and dizzy feelings that left the daughter unable to play soccer. In addition, she said, her daughter experienced brain fog, unable to remember simple equations.
The daughter “was in so much pain that she couldn't get out of bed [and] started actually missing 3 days a week from school,” the mother said. “Every morning she'd wake up with a pain level of seven out of 10, and it would pretty much just go up from there.”
She recalled an appointment where a new doctor did not believe the daughter’s symptoms were due to long COVID, and closed the interview by imploring physicians to believe their patients.
“We are coming to you for a reason,” she said. “Just because the labs are pointing that there's nothing going on doesn't mean that it's all in our heads. We need help, and you know we have trust that you will find a way to help us out.”