Doctors struggle to find answers for children with long COVID

Klara Nowacki, 3, lost all her hair after her COVID-19 infection. Evelyn Van Winckel, who turned 8 on Sunday, was in so much pain weeks after contracting the virus that her parents couldn’t hug her. Samantha Petraglia, 14, has been hospitalized about a dozen times and was on a feeding tube for several months.

All three Long Island kids are believed to have "long COVID," the often-debilitating effects of COVID-19 that linger months after initial infection.

Doctors are still struggling to understand what causes long COVID in adults and how to treat some of its symptoms, but experts said long COVID in children is even less understood. Studies estimate that between 10% and 30% of adults who contract the coronavirus develop long-term symptoms, but “in pediatrics the number is clearly unknown,” said Dr. Sharon Nachman, chief of pediatric infectious diseases at Stony Brook Children’s Hospital.

The Centers for Disease Control and Prevention defines long COVID as ongoing health problems four or more weeks after initial infection.

Many kids with long COVID likely were never tested for the coronavirus, said Dr. Alexandra Yonts, director of the Post-COVID Program at Children's National Hospital in Washington, D.C., one of only about a dozen pediatric post-COVID-19 programs nationwide. Another program is in Brooklyn. 

That lack of an initial COVID-19 test is one reason long COVID “probably is not being diagnosed as much as it truly is happening,” Yonts said.

Doctors at Children’s National have seen a spike in kids with common long COVID symptoms such as fatigue, brain fog, concentration problems, abdominal pains and chronic headaches, she said.

“All of those things we are seeing in much, much higher numbers than we would have pre-COVID,” Yonts said.

In some cases, it’s possible COVID-19 sparked conditions that were latent and otherwise may not have emerged until many years later, she said.

'Her life completely changed'

Evelyn Van Winckel, 7, who suffers from long COVID, plays in her jungle gym room in her Fort Salonga home on March 22. Earlier that day, she received acupuncture at Path of Wellness in Kings Park, and occupational therapy at St. Charles Rehabilitation in Commack to address her symptoms. Credit: Randee Daddona

Evelyn is now “85 to 90 percent back to who she was,” said her mother, Concetta Van Winckel, 44, of Fort Salonga.

But that’s only after months of physical therapy, occupational therapy and acupuncture and massage treatment, Van Winckel said.

“I had a normal 7-year-old kid, and she then got COVID and her life completely changed,” Van Winckel said. “It came out of nowhere.”

When Evelyn tested positive for COVID-19 on Oct. 5, she had pain in several parts of her body, along with fatigue, the mother said. The pain, but not the fatigue, went away for about a week. When it returned, it was worse.

Her primary symptom was this bizarre amplified pain that she experienced where she couldn’t be touched at all.

-Concetta Van Winckel, whose 7-year-old daughter suffers from long COVID

“Her primary symptom was this bizarre amplified pain that she experienced where she couldn’t be touched at all,” Van Winckel said. “And when you’re 7 years old, everybody touches you.”

Evelyn recalled that “I would cry and go to the nurse” if anyone touched her or bumped into her in school. Her dog’s tail hitting her would cause intense pain. 

“My daughter is a really tough little girl,” Van Winckel said. “She’s spunky, she’s feisty, she’s fierce. She’s not like a little princess. For her to all of a sudden be crying multiple times a day in school was just not in her character.”

On a recent afternoon, Evelyn was bouncing a plastic ball off a trampoline at St. Charles Rehabilitation in Commack. The ball hitting her hands no longer hurts.

“Need a break?” Lecuit asked Evelyn, who after saying “no” ran back and forth in an exercise area playing several games, effortlessly climbing over plastic obstacles.

A few months ago, Evelyn had to rest for a minute after each run of the obstacle course.

“Now we went through the whole obstacle course five times” without resting, Lecuit said.

Later on, Lecuit massaged Evelyn’s arms with lotion. During each of Evelyn’s visits, she has pressed a little more firmly. “At first we weren’t even able to gently touch Evelyn’s arms,” Lecuit said.

Evelyn said she no longer feels tired all the time, and Van Winckel said even though Evelyn still sometimes experiences pain, it’s not as frequent or as intense.

Still, Van Winckel is nervous that if Evelyn contracts the virus again, a new infection “could cause the amplified symptoms to recur.” The many kids in Evelyn’s school and on the bus who no longer wear masks heighten her anxiousness.

Evelyn was diagnosed with long COVID in December. But because so much about long COVID is uncertain and unclear, including the criteria to define the condition, some doctors are reluctant to diagnose children with long COVID and attribute symptoms to the effects of the virus, said Dr. Jill Cioffi, medical director of ambulatory primary care pediatrics at Stony Brook Children's.

“How do you say this is long-haul COVID when you really don’t know what long-haul COVID is?” she said.

Many symptoms common in long COVID, such as fatigue or brain fog, often don’t show up on tests, said Dr. James Schneider, chief of pediatric critical care at Cohen Children’s Medical Center in New Hyde Park.

“There are no definitive blood tests or definitive bio markers,” Schneider said. “But we know it exists.”

The long-lasting effects of COVID-19 in some kids reinforce the importance of getting eligible children vaccinated and boosted, to reduce their chances of contracting the virus, he said.

Hospitalized about a dozen times

Samantha, of Commack, had fever, cough, rashes, and pain and itches in her toes in March 2020, around the same time her mother, Amy Petraglia, tested positive for COVID-19.

The symptoms went away, but several months later, Samantha, known as "Sammi," started feeling dizzy, experienced migraine headaches and heart palpitations, and developed rashes on her skin worse than the initial ones, Amy Petraglia said.

She had pain all over her body.

-Amy Petraglia, whose daughter suffers from long COVID

“She had pain all over her body,” Petraglia said.

Over the next few months, Sammi was diagnosed with several illnesses, including a blood circulation disorder known as postural orthostatic tachycardia syndrome, and gastroparesis, which made it difficult for her to digest food.

She was hospitalized about a dozen times and required the use of a feeding tube for several months, Petraglia said. Doctors told Petraglia they suspected COVID-19 caused the conditions, but they have been unable to say for sure.

Medicine, supplements, infusions of iron, physical activity, a high-salt diet and lots of water have helped keep symptoms under control, she said.

Yonts said that, after they first get infected with the coronavirus, most kids who have COVID-19 symptoms initially start to feel better, until the long-term symptoms appear typically two to five weeks later.

At Stony Brook, doctors noticed that at least three out of four kids hospitalized with multisystem inflammatory syndrome — a condition that strikes a small number of kids, emerges a few weeks after COVID-19 infection and can inflame multiple parts of the body — ended up with myocarditis, an inflammation of the heart muscle, Cioffi said.

But fewer than 10% of other children with COVID-19 later developed long-term symptoms, she said.

Cioffi said one barrier in diagnosing kids, especially younger children, is that they have a harder time articulating what’s wrong. She’s noticed how, even though lack of taste and smell is a common COVID-19 symptom, she’s never seen it in children under 10.

“You really wonder if that’s because they just don’t know how to report it, or if they don’t notice it like an adult does,” she said.

The same is true for long COVID symptoms, she said. And parents may not connect their kids’ symptoms with the effects of the virus, she said. They may think, “ ‘Oh, maybe they didn’t sleep well last night’ or ‘they had that birthday party two days ago,’ ” Cioffi said. “It’s not necessarily, ‘Oh, that’s because they had a COVID infection.’ So I think you have underreporting based upon that.”

'Hoping someone can give me an answer'

Klara, the 3-year-old girl from Ronkonkoma who is now bald, underwent a battery of tests to try to find a reason why her fine, blond hair fell out over a period of a few weeks last fall, said her mother, Sylwia Nowacki.

One test was for antibodies to COVID-19, and she tested positive, meaning she had been infected with the coronavirus, Nowacki said.

"Her antibodies were still high," she said. "That's how they knew it was recent."

Doctors told her the hair loss may have been because of the effects of COVID-19, but they’re not positive, she said.

Even her eyebrows and eyelashes are gone.

- Sylwia Nowacki, whose 3-year-old daughter suffers with long COVID

Physicians “gave me some steroid creams, but nothing is coming back,” Nowacki said. “Even her eyebrows and eyelashes are gone.”

Klara’s prognosis is uncertain, Nowacki said.

“Some doctors said her hair could come back in nine months,” she said. “I’m hoping someone can give me an answer.”