July 22, 2022 – Emma Sherman, a 13-year-old girl in Ascot, UK, woke up to a dizzying aura of blind spots and flashing lights in her field of vision. It was May 2020 and she also had crippling nausea and headaches. By August, her dizziness was so overwhelming that she could no longer hold her head up, lying on her mother’s lap for hours, too tired to go to school.
The former competitive gymnast, who had hoped to make the cheerleading squad, now used a wheelchair and was a shadow of her former self. She had been diagnosed with COVID-induced postural orthostatic tachycardia syndrome, a condition often caused by an infection that causes rapid heartbeat, extreme nausea, dizziness and fatigue.
“I was so into sports before I got long COVIDand then I could barely walk,” Emma says.
Even minor movements sent his heart rate skyrocketing. Her long brown hair turned gray and fell out in clumps. At the hospital, she was pricked and pushed, her blood was tested for numerous conditions.
“They took every scan known to man and took an MRI of her brain,” says Emma’s mother, Marie Sherman. “Everything was clear.”
Emma’s pediatrician determined the teenager had long COVID after having a mild case of the virus in March, about 2 months before her puzzling symptoms began. But beyond a positive antibody test, doctors found little evidence of what was causing Emma’s symptoms.
For Emma and others who have had COVID for a long time, there is no drug that directly targets the disease. Instead, caregivers target their symptoms, which include nausea, dizziness, fatigue, headaches and a racing heart, says Laura MaloneMD, co-director of the Johns Hopkins Kennedy Krieger Post-COVID-19 Pediatric Rehabilitation Clinic in Baltimore.
“Right now it’s a rehabilitation-based approach focused on improving symptoms and functioning so children can return to their usual activities as much as possible,” she says.
The Depression and anxiety are common, though doctors are struggling to determine if COVID is altering the brain or if mental health symptoms are a result of all the disruptions in life. There is little research to show how children can suffer from depression because of headache. Malone says about half of his patients at the Kennedy Krieger Institute’s long-running COVID clinic also deal with mental health issues.
Patients with headaches, dizziness and nausea receive medication for pain and nausea and recommendations for a Balanced diet with added fruits and vegetablesmonounsaturated fats, low sodium, unprocessed foods and whole grains. Children with irregular or accelerated heartbeats are referred to cardiologists and potentially prescribed beta-blockers to treat their cardiac arrhythmias, while children with breathing problems can be referred to pulmonologists and those with depression to a psychiatrist.
Yet many patients like Emma come to their doctors with phantom symptoms that don’t show up on scans or blood tests.
“We see no evidence of structural damage to the brain, for example,” says Malone. “When we do MRIs, they often come out normal.”
The virus may persist in some patients, says Rajeev Fernando, MD, an infectious disease specialist and fellow at Harvard Medical School in Cambridge, MA. Children’s strong immune systems often fend off problems that can be noticed. But inside, dead fragments of the virus linger, floating in hidden parts of the body and activating the immune system long after the threat has passed.
The virus can be found in the gut and in the brain, which may help explain why symptoms like brain fog and nausea may persist in children.
“The immune system does not recognize whether fragments of the virus are dead or alive. He continues to think he is fighting active COVID,” Fernando says.
There is little data on how long symptoms last, Fernando says, as well as how many children get them and why some are more vulnerable than others. Some research has revealed that approximately 5% to 15% of children with COVID can get long COVID, but stats vary globally.
“Children with long-term COVID have been largely ignored. And while we talk about it now, we have work to do,” says Fernando.
As for Emma, she recovered in January 2021, returning to school and friends, despite her cardiologist advising her to skip gym class.
“For the first time in months, I felt like myself again,” she says.
But the coronavirus found the way to Emma. Although she was fully vaccinated in the fall of 2021, when the Omicron variant swept the world at the end of that year, she was infected again.
“When the Omicron wave came down, Emma was like a sitting duck,” her mother says.
She was bedridden with a high fever and cough. The cold symptoms eventually went away, but the problems in his gut remained. Since then, Emma has had extreme nausea, losing most of the weight she had regained.
For her part, Maria found solace in a group called Long COVID Kids, a non-profit organization in Europe and the United States. The group raises awareness of the condition of children to increase funding, improve understanding, and improve treatment and outcomes.
“There’s nothing worse than seeing your child suffer and not being able to do anything about it,” she says. “I tell Emma all the time, if I could just crawl into your body and take it, I’d do it in a second.”
Emma is hoping for a fresh start with her family moving in the coming weeks to Sotogrande in southern Spain.
“I miss the simpler things, like going for a run, going to the fair with my friends and feeling good,” she says. “I have a long list of things I will do once this is all done.”