(Brunswick, N.J.) — While children were initially thought to be spared from the worst of SARS-CoV-2, more than two years later, long COVID clinics are full of pediatric patients, with parents looking for guidance on a range of symptoms affecting their kids’ daily lives.

The emergent nature of long COVID makes it especially difficult to define, diagnose, and treat, particularly for children, according to Dr. Lawrence Kleinman of the Institute for Health, Health Care Policy and Aging Research at Rutgers University in New Brunswick, New Jersey.

“If you look at some of the early information that came out — you can go find headlines on the web … that said children are spared — we started this pandemic thinking kids weren’t a part of it, and it’s impacted the policy ever since,” Kleinman told MedPage Today. “And we know that’s just not true. It’s a myth.”

As part of the steering committee for the RECOVER Initiative, a National Institutes of Health-sponsored collaboration of more than 100 researchers, Kleinman has been focused on research in pediatric long COVID cases.

He noted that the pediatric side of the initiative is moving slowly, as they are still working on enrollment for the first phase of a large-scale, multi-clinic, observational cohort study.

In addition to RECOVER, other groups have been studying long COVID in children, including the CLoCK Consortium in England and the PreVAIL kids team. The American Academy of Physical Medicine and Rehabilitation is also planning to publish consensus guidance on diagnosing and treating long COVID in kids as part of their post-acute sequelae of SARS-CoV-2 (PASC) series.

Dr. Amanda Morrow, of Kennedy Krieger Institute and Johns Hopkins School of Medicine in Baltimore, a co-author of the PASC guidance, noted the many challenges that kids with long COVID face.

“Sometimes these kids are written off, or they’re not believed,” she said. “We’re really trying to [educate clinicians and parents], so the children are believed, they are supported, so that they can really focus on their recovery.”

At the Kennedy Krieger Institute, which treats children and young adults ages two to 21 years, Morrow works with a multidisciplinary team that includes a neurologist, a physical therapist, a behavioral psychologist, and a social worker, with a neuro-psychology team and education specialists available to work with kids who are struggling in school. Currently, the clinic has a monthlong waitlist for new patients.

Patients at the clinic were previously healthy, with very few experiencing medical issues until their COVID-19 infections, which were mostly mild in nature, Morrow noted.

Now, they are all suffering from lingering symptoms, such as fatigue, cognitive difficulties, dizziness, lightheadedness, headaches, and difficulty with physical activity. Some are dealing with mood-related symptoms, though she cautioned that these symptoms could be related to the patient’s circumstances rather than the infection directly.

“Many of our kids are complaining of difficulty with school,” Morrow said. “So some of the cognitive difficulties that you hear about in an adult, for children that’s manifesting as difficulty with schoolwork, dropping grades, having trouble paying attention in class, [the ability] to participate in a full school day, because of their symptoms.”

She has also worked with kids who are struggling with orthostatic intolerance, gastrointestinal symptoms, and pain issues.

“I think, as far as the treatment, it’s kind of a rehabilitation approach. We’re really focusing on patient functioning and improving their quality of life, despite whatever symptoms that they’re experiencing because right now we do not have a cure for long COVID,” Morrow explained. “So, we are supporting them. We are using our medical knowledge, and we are borrowing from other diseases and illnesses with overlapping symptoms. We’re borrowing management strategies from those to help these kids feel better.”

Kleinman noted that the concerns around long COVID in children extend beyond school performance and daily life.

“We also don’t know — and this is particularly salient for kids who are going to live a long time — what is beneath the surface,” he said. “When you think about the iceberg, the prototypical iceberg, the symptoms are above the surface, maybe the laboratory tests that you can look at are at the surface or just immediately below the surface. And then there’s stuff that’s going to portend for the future that is deeper below the surface.”

While research efforts are underway, it will take time to understand long COVID in children, he added. In the meantime, it is important for the medical community to know that COVID-19 and long COVID are very real concerns for children, he urged.

“Folks should not be comfortable in the idea that children aren’t an important part of this pandemic, because they clearly are, have been, and continue to be,” he said.

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