The 10-year-olds symptoms passed but then worse ones set in. Her case shows how little we know about long COVID in kids – San Francisco Chronicle

Shyne Staples leaps up and executes a flawless forward roll across a gym mat. She flips into a cartwheel, stands on her hands, then climbs a rope before spinning around a high bar in her San Mateo gymnastics class.

Like many 10-year-old girls, Shyne likes flying around the gym, Simone Biles-style. But unlike most of them, Shyne begins class already in pain, and the exertion puts her to sleep 90 minutes after its over.

Shyne has long COVID.

Lingering, debilitating effects of the coronavirus were identified early in the pandemic, and new studies suggest that at least 1 in 5 adults has ongoing symptoms. But few studies have focused on children who, like Shyne, find their childhood disrupted by COVID months after recovering.

Theres pain. And sometimes children have headaches. But fatigue is characteristically the most common persistent symptom, said Dr. Roshni Mathew, a pediatric infectious disease expert at Stanford Childrens Health who doesnt treat Shyne but sees other children with long COVID in her practice.

Shyne Staples, 10, exercises on a rope at Peninsula Gymnastics in San Mateo.

The World Health Organization defines long COVID as symptoms lasting at least two months after probable or confirmed coronavirus infection that cannot be explained by an alternative diagnosis. The National Institutes of Health is spending $1.15 billion to spur research into the phenomenon that can cause a wide range of symptoms, including brain fog, loss of smell, racing heart and chronic fatigue. In April, President Biden unveiled the National Research Action Plan on long COVID to accelerate the research effort.

Studies indicate that millions of people around the world are plagued by long COVID. Vaccination before infection appears to reduce but not eliminate the risk. A new study from the Centers for Disease Control and Prevention estimates that 20% of adults under 65 who had tested positive for the coronavirus developed persistent symptoms, as did 25% of those over 65. A large national survey from 23andMe released in May roughly echoed the findings.

But how many children are affected by long COVID and for how long remains elusive. In the U.S. alone, children represent 19% of all COVID cases more than 13 million kids.

A pediatric study of long COVID published in February in the journal Lancet Child & Adolescent Health compared more than 3,000 British 11- to 17-year-olds who tested positive against a similar group that did not. Neither group reported feeling entirely healthy three months after testing. But researchers found that nearly 30% of the adolescents who had tested positive for the coronavirus experienced multiple symptoms, including fatigue, headaches and shortness of breath, compared with 19% for those who had not.

Shyne Staples, 10, takes a class at Peninsula Gymnastics in San Mateo.

Long COVID Kids, a support group in the U.K., features photos of 50 children from around the world on its website holding placards identifying their ongoing symptoms. The youngest is 5, and the oldest 16.

The sign held by one 12-year-old American girl lists memory loss, heart damage and passing out among her symptoms all devastating for a person of any age. A U.K. 10-year-old peeks out from behind a lineup of 17 symptoms, including nausea and chest pain, under the heading Day 293.

Shyne is not on the page. But she could be.

She tested positive for COVID-19 on Jan. 9, a few days after her adult brother. Her fraternal twin sister, Samantha, stayed healthy, as did her parents. But after Shynes COVID infection faded, along with her sore throat and stuffy nose, other, worse symptoms set in.

Deseree Solano of San Mateo is the mother of fraternal twins Samantha and Shyne Staples. Shyne, 10, got COVID-19 in January and continues to experience symptoms.

I started getting pain in my arms, my neck and my shoulders and legs, she said, as she practiced backbends on the living room rug of the familys home in San Mateo. Before that, the pain was, like, here, she said, pointing to a spot on her forehead just above her gold-rimmed glasses.

The first pains appeared on Jan. 16. For a while, her mother, Deseree Solano, kept a symptom diary. Feb. 16: Neck and shoulder pain. Feels like she has bruises everywhere. Feb. 19: Face started throbbing ... very winded. Blank staring. March 10: Ear pain, armpit pain, legs. Shoulders, hair loss and now depression. April 20: Leg and back pain. Last week lips started bleeding again. Very tired. Still has hair loss.

Shynes thick brown hair continues to fall out. We thought it was the shampoo, said Samantha, her twin. But it wasnt, because my hair was fine.

Its all since COVID, Solano said. Before then, Shyne would be the first person up and ready for school. Now I have to wake her up numerous times, and Samantha is up before her and ready. Shyne is not a kid to be lazy or get up late.

She stayed home from school for two months before feeling ready to return, despite the pain and other symptoms that persist even now, more than four months later.

Sometimes its, like, burning and pain at once. Its always there, Shyne said of the discomfort in her arms, shoulders and calves. I cant eat a lot. Like I want to throw up.

Solano said her daughter sometimes has difficulty breathing but tries to hide it because she dreads going back to the doctor.

At many medical centers, including Kaiser, where doctors diagnosed Shyne with the post-viral syndrome, patients are not treated specifically for long COVID but are sent to specialists for the individual ailments they complain about.

Krista Prasadi, 10, chats over FaceTime with her best friend, Shyne Staples. Krista often provides a shoulder for her friend to lean on when Shyne is having painful symptoms of long COVID.

A kid with persistent headaches may land in the neurology clinic, said Mathew, the pediatric infectious disease expert at Stanford, who said she often sends children back to their pediatrician after ensuring that no active disease is causing their symptoms.

Its a common experience of long COVID sufferers of all ages that their medical tests come back normal, suggesting nothing is wrong. Shyne, for example, feels like she has bruises but there are none to be seen.

Researchers, including those at UCSFs Long-term Impact of Infection with Novel Coronavirus, or LIINC, study, point to three likely causes for long COVIDs odd symptoms: persistent inflammation caused by the coronavirus, hidden bits of the virus that remain in the body and autoimmunity when the bodys own immune system turns on itself.

In February, researchers at the State University of New York reported the case of an 11-year-old girl with persistent abdominal pain and nausea in the Journal of Pediatric Gastroenterology and Nutrition. After an endoscopy, colonoscopy and other therapies found nothing wrong, doctors wondered if the coronavirus infection she had had three months earlier could still be causing trouble. They looked for evidence and found it.

Twins Samantha (left) and Shyne Staples, 10, at their San Mateo home. Shyne got COVID-19 in January and continues to experience symptoms.

They discovered nucleocapsid proteins, which are associated with the coronavirus, in the lining of her gastrointestinal tract. Her prolonged symptoms, with evidence of chronic inflammation, strongly suggests a direct consequence of COVID, they wrote.

University of Southern California researchers also found evidence of a COVID connection in three children with brain inflammation autoimmune mediated encephalitis and published their study in January in the Journal of Child Neurology. All three improved after receiving high-dose intravenous corticosteroids, which reduce inflammation, the study said.

Yet clear, clinical evidence of a connection between the coronavirus and ongoing symptoms is often lacking or hard to find, leading some doctors to be skeptical about whether children actually experience long COVID.

Dr. Geraldina Lionetti, a pediatric rheumatologist at UCSF Benioff Childrens Hospitals, said she wasnt comfortable saying whether long COVID in children was real because there may be other potential causes for their symptoms including physical and psychological aftereffects of the pandemic itself.

Twins Samantha and Shyne Staples as babies.

Its very difficult to distinguish between symptoms of long COVID and being on lockdown, Lionetti said.

Megan Carmilani, who founded a support group called Long COVID Families, used to find such skepticism infuriating but has made peace with it. To me, all the doctor is saying is, I dont have the knowledge or skills to help, she said.

Carmilani, 43, never had long COVID, but she strongly relates to children who do, because she has had post-viral symptoms since getting mononucleosis at age 14. It wasnt until 2017 that doctors made the connection between her ongoing symptoms and her adolescent illness.

I dont want another child to wait decades for proper medical care, Carmilani said from her home near Pittsburgh.

She points to research showing that ongoing illnesses prompted by initial viral infections are not uncommon. They include long COVID, chronic fatigue syndrome (myalgic encephalomyelitis) and Epstein-Barr, which can cause mononucleosis, among others. Yet the mysterious aftereffects have been ignored and underfunded, she said, especially in pediatrics.

Carmilani founded Long COVID Families to give children the support she lacked, she said. I needed an adult to say: Your symptoms are real. There is a community to support you, and we are going to work together to get you the care you need.

Today, the group has about 2,000 participants and easily 500 children with long COVID, Carmilani said.

Shynes mother has appreciated the community. Its been helpful mentally to have a group of other people that understand what I am going through, she said.

As for Shyne, understanding comes from Krista Prasadi, 10, who is as caring a friend as a kid could hope for.

She tells me how much pain shes in, said Krista. I ask her if shes OK.

And I hope, like, she can feel better.

Nanette Asimov is a San Francisco Chronicle staff writer. Email: nasimov@sfchronicle.com Twitter: @NanetteAsimov

Go here to see the original:

The 10-year-olds symptoms passed but then worse ones set in. Her case shows how little we know about long COVID in kids - San Francisco Chronicle