Long COVID in Kids

By Linda Rath | Dec. 13, 2023

In the four years since the start of the COVID-19 pandemic, scientists have learned a lot about the virus that caused it. Yet they still know almost nothing about long COVID – the sometimes-debilitating physical and cognitive symptoms that persist months or years after the initial infection. Even less is known about long COVID in children, including how many have it, who gets it and, especially, how to manage or treat it. Roberta DeBiasi, M.D, M.S, chief of pediatric infectious diseases at Children’s National Hospital in Washington, D.C., and Suchitra Rao, MD, associate professor of pediatric infectious diseases at Children’s Hospital Colorado in Aurora, have drawn on recent studies and their own experience to try to answer some questions for long-haul kids and their parents. At the American College of Rheumatology’s annual conference in November 2023, they discussed long COVID in children.

How many children have long COVID?

Prevalence estimates are all over the map, ranging from 30%  (a 2023 Thai study) to 17% (World Health Organization) to 1.3% (The Centers for Disease Control and Prevention, 2022).  Clinicians who are in the trenches, like Dr. Debiase, say it may be closer to 5% to 10% of the 16 million children with confirmed COVID-19. That’s likely an undercount because many kids never see a doctor or get a correct diagnosis. It’s also estimated that as many as 90% of initial COVID-19 infections in children were missed.

Who gets it?

Research suggests that girls, older children and teens and Hispanic youth are more likely to develop long COVID. Black children are underrepresented in long COVID clinics, but it’s not clear if they’re less likely to have symptoms or simply lack access to care. Excess weight, pre-omicron infection, hospitalization and previous allergies or other chronic illnesses are also risk factors. Yet, as Dr. Debiase pointed out, “Many kids had mild or nonexistent COVID symptoms initially and were completely healthy before their diagnosis.”

What are the symptoms in kids?

Long COVID can affect many different organ systems in the body, from the brain and nervous system to the intestinal tract, kidneys, lungs, heart and joints. Dr. Debiase said she has seen children with up to 25 symptoms. The most common are an inability to exercise (called exercise intolerance), decreased appetite, headache, brain fog or memory loss, and myositis – chronic muscle inflammation. Kids seem to have fewer respiratory symptoms and more gastrointestinal (GI) symptoms than adults do. Recent research has found they have the same problems metabolizing glucose in the brain (hypometabolism) as adults, which may explain problems with thinking and memory. Another possible reason for cognitive problems in adult long-haulers: Microstructural changes in parts of the brain associated with fatigue, impaired thinking and sense of smell. It’s not known if children and teens have these changes.

Long COVID symptoms overlap with many other chronic disorders, especially viral-onset disorders like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome (POTS). People with POTS – up to 1 million in the U.S. – have a pronounced increase in heartrate on standing, leading to many symptoms identical to long COVID, such as brain fog, exercise intolerance, headache and fatigue. ME/CFS and POTS can also develop after a COVID infection.

There is a marked increase in autoimmune and inflammatory disorders after COVID-19, including type 1 and type 2 diabetes, the lung disease sarcoidosis, Crohn’s disease, psoriasis and rheumatoid arthritis (RA). This isn’t surprising because many studies have found autoantibodies and unusually high numbers of immune cells in long COVID patients. Recently, researchers have discovered low levels of cortisol, which may contribute to fatigue.

What causes it?

Long COVID is associated with at least 200 symptoms, so it probably has more than one cause. Scientists have winnowed down a large field to the most likely suspects:

·      Direct damage to organs from the COVID-19 virus

·      A reservoir of the virus that remains in certain tissues, especially the intestinal tract

·      The damaging effects of the virus on the gut microbiome

·      An autoimmune response, in which the immune system attacks the body’s own cells, similar to what happens in RA and other autoimmune diseases

·      Prolonged inflammation, potentially caused by changes in how genes are turned on or off

·      Microclots in blood vessels

·      Abnormal signals in the brain stem or vagus nerve, which controls involuntary functions like blood pressure, digestion, and breathing

How is long COVID treated?                                                                                                          

There are no effective treatments for long COVID. Research is starting to pick up steam after a painfully slow start. But given the broad array of symptoms and potential causes, it’s unlikely that a single therapy, if found, would work for everyone. One inexpensive and potentially promising treatment is a probiotic and fiber supplement called SIM01. It contains strains of Bifidobacteria that in a randomized controlled trial of adult long COVID patients altered the gut microbiome and relieved symptoms such as fatigue, GI upset and memory loss. As yet, no trials have involved kids.

For now, children should receive a thorough clinical evaluation and diagnosis and a multidisciplinary team that addresses both their psychosocial well-being and physical health, according to Dr. Rao. “We need to think about a return to functioning, not just medical needs,” she said. Ideally, the multidisciplinary team should include psychologists, physical therapists and speech and language therapists, school supports and long-COVID support groups as well as medical specialists.

Dr. Rao said sleep, nutrition and a gradual return to exercise are all critical. “Minimize the use of nonsteroidal anti-inflammatories and consider complementary pain therapies, such as transcranial electrical nerve stimulation (TENS), myofascial release, acupuncture and breathing techniques,” she advised. “Certain lifestyle modifications can help children get out of the pattern of exhaustion and gradually return to school and physical activity.”

Perhaps most important for both parents and providers is to take children’s symptoms seriously. Dr. Rao quoted Amy Edwards, M.D., a physician at University Hospitals Rainbow Babies and Children’s Hospital in Cleveland: “‘The number one thing is to listen to them and believe them and validate their illness,’” she said. “‘These kids are hearing that it’s just anxiety or all in their head, which is neither helpful nor true. Validation can go a long way toward helping children deal with a chronic illness.’”