Eleven-year-old Noah Symons, 16-year-old Lane Perkins, 14-year-old Anastasia Athienites, and 16-year-old Kitty McFarland are four examples of children that have been suffering from long-COVID symptoms. Weeks after contracting a mild case of COVID-19, they began experiencing symptoms, including severe nerve and abdominal pain, debilitating fatigue and headaches, problems focusing and remembering, rapid heartbeat, and “COVID toes.” Their symptoms have persisted for a range of three months to just under two years. 

There is no official definition of long COVID in children. But like adults, it is generally regarded as symptoms that persist or reappear three months after initial COVID-19 infection.

How Common Is Long COVID in Children?

Dr. Amanda Morrow, co-director of the Pediatric Post-COVID-19 Clinic at the Kennedy Krieger Institute in Maryland, says they’re “definitely seeing long COVID in children, and it is impacting day-to-day lives significantly.”

That said, exact prevalence in children isn’t yet known. Estimates vary considerably, from 0.8%-66%. Experts are just now beginning to understand long COVID in kids and “don’t really know a whole lot,” said pediatric disease specialist Dr. Sindhu Mohandas of Children’s Hospital Los Angeles. 

Growing evidence, mainly from pre-Omicron and pre-vaccine cases, reveals that about 10% of children with COVID-19 go on to develop long COVID. While foreign estimates have been greater, Morrow believes the average number will settle at around 10%. “We do not know at this point what risk factors predispose children to developing long COVID. It could be a possible outcome for anyone. We just don’t know.”

Kitty’s mother, Sammie McFarland, who co-founded the first global charity for children with long COVID called Long COVID Kids, estimates the number may be anywhere between 12% and 20%.

Omicron Aftermath

Right now, there are about ten long-COVID clinics in the U.S. that are focused on children, and doctors expect an influx of new pediatric cases in the wake of Omicron. They’ll need to learn how the vaccines affect pediatric long COVID and whether symptoms may change.

Dr. Moshe Ashkenazi, who directs a new long-COVID clinic for kids in Israel, says the number of people infected from Omicron is so great that even 1% of kids getting long COVID from it will be more than from the Delta variant.

Over 981,000 new pediatric COVID-19 cases were reported in the U.S. by the American Academy of Pediatrics for the week ending January 13—a 69% increase over the previous week.

Patterns Emerging

Besides long-COVID prevalence, other disease patterns are beginning to appear in kids.

Older children seem at higher risk for long COVID than younger children and infants. 

The age range with the highest frequency seems to be 11-17 years in some doctors’ experience. However, they note that younger children may not be able to communicate their symptoms as effectively. “I don’t think [older children] are more at risk. I think they are more able to voice symptoms,” said Mohandas. It’s also easier to track older children’s school and athletic performance, she said.

• Girls seem to be more at risk for long COVID than boys.
• Most children with long COVID were healthy pre-COVID, had mild infections, and many were asymptomatic.
• All of the kids seen at Children’s National Hospital in Washington D.C. have been high achievers with fatigue as their main symptom.
• Up to 200 various long-COVID symptoms have been reported by children, with some individuals reporting 40 or 50 by themselves.
• Long COVID appears to impact virtually all the organs and systems in children’s bodies, though more research is needed to distinguish damage from the virus and damage caused by an overactive immune response. 

Common Long-COVID Symptoms in Kids

Some of the most common symptoms of long COVID in children include:

• Fatigue or decreased physical performance
• Difficulty thinking or concentrating and memory loss (“brain fog”)
• Headaches
• Dizziness
• Trouble breathing
• Loss of taste and smell
• Sleep disturbance
• Chest tightness or pain
• Abdominal pain
• Fever
• Mood changes
• Muscle and joint pain

Mohandas says new symptoms arise weekly, and physicians need to keep an open mind.

Diagnosis and Recovery

Information on long COVID in kids is coming out quickly. But diagnosis is still a difficult and emotional process because of long COVID’s variable nature and the fact that many families’ concerns are simply dismissed by doctors unfamiliar with the condition. 

The McFarlands were even accused of making up their illness, even after both Sammie and her daughter were bedridden with post-COVID symptoms for eight months.

Only when kids’ symptoms are acknowledged and confirmed can patients begin to heal and recover through a multidisciplinary approach to coping with physical and mental impact, explains Mohandas. It’s not yet known how long it will take for children to recover. 

Morrow, Mohandas, and other clinicians are seeing most of their pediatric patients recover with a high level of care. Most children recover in about six months, but some kids, like Anatasia and Kitty, can have symptoms that persist for much longer.

Frustrated Families

The families of Noah Symons, Lane Perkins, Anastasia Athienites, and Kitty McFarland all describe their exhausting long-COVID experiences of new doctors, more tests, new treatments, and frequent lack of answers. “The disappointment every time is horrible,” said Noah’s mom, Sheila Symons.

For Kitty McFarland’s nearly two-year ordeal, the endless disappointment has drained her desire to see any more doctors, while her lack of energy and focus has taken an immense toll on her mental health. 

Indeed, long COVID has led to a lot of anxiety and depression, says Morrow, though it’s unclear whether this is a long-COVID symptom or secondary to other symptoms such as chronic pain and fatigue.

The Symons have now switched to pain management for Noah since treatments to remove the pain haven’t worked. “He’s taught himself how to scream on the inside,” said Noah’s father, Aaron. The experience has become his new normal.

The Perkins have found solace on social media, where they’ve gotten the most support, treatment ideas, and resources. Meanwhile, Lane has a new symptom that feels like she’s being choked as she tries to swallow, on top of her cognitive issues, swelling, and intermittent loss of taste. Yet, her tests show nothing wrong.

Anastasia’s mother, Jennifer Athienites, recommends parents seek multiple opinions from multiple institutions if possible. 

“I want people to know this is real,” said Lane’s mom, Angi Wilson-Perkins.

“Don’t be fooled into thinking kids—your kids—are not going to be the ones affected. It could happen to anyone,” warned Sheila Symons.

*Harden, K.D. (2022, January 22). The kids are not alright: Data suggests 10% of children with COVID-19 become “long-haulers.” Salon. https://www.salon.com/2022/01/22/the-kids-are-not-alright-data-suggests-10-of-children-with-19-become-long-haulers/?fbclid=IwAR1oqqWEhdCA8uSsAvtuGt_B_Uwp15KRc_Hsc0GXcE01ucfR2v5xi8VTAvg