Emma Sherman, a 13-year-old girl from 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 severe nausea and headaches. By August, her dizziness had become so bad that she couldn’t hold her head up, lying in her mother’s lap for hours, too tired to go to school.
The former competitive gymnast who had hoped to try out for the cheerleading team now used a wheelchair and was a shadow of her former self. She was diagnosed with postural orthostatic tachycardia syndrome caused by COVID, a condition often caused by infection that leads to an increased heart rate, severe nausea, dizziness and fatigue.
“I was so into sports before I got COVID and I could barely walk after that,” says Emma.
Even slight movements made her heart beat to the skies. Her long brown hair turned gray and fell out in clumps. At the hospital, she was stabbed and poked, her blood tested for numerous conditions.
“They ran every scan known to man and did an MRI of her brain,” says Emma’s mother, Marie Sherman. “Everything was clear.”
Emma’s pediatrician determined the teen had long-term COVID after she had a mild case of the virus in March, about 2 months before she started having cryptic symptoms. But other than a positive antibody test, doctors found no evidence of what caused Emma’s symptoms.
For Emma and other patients with long-term COVID, there are no drugs that can directly affect this condition. Instead, caregivers are targeting their symptoms, which include nausea, dizziness, fatigue, headaches and heart palpitations, says Laura Malone, MD, co-director of the Johns Hopkins Kennedy Krieger Children’s Rehabilitation Clinic following COVID-19 in Baltimore.
“Now it’s a rehab approach focused on improving symptoms and functioning so that children can return to their normal activities as much as possible,” she says.
Depression and anxiety are common, although doctors are struggling to figure out if COVID is changing the brain or if mental health symptoms are the result of all life disruptions. There is little research to show how children can be depressed due to prolonged COVID. Malone says about half of her patients at the Kennedy Krieger Institute’s longstanding COVID clinic also have mental health issues.
Patients with headaches, dizziness, and nausea are given medications for pain and nausea, as well as healthy eating recommendations for fruits and vegetables, monounsaturated fats, reduced sodium, raw foods, and whole grains. Children with irregular or fast heart rhythms are referred to cardiologists and potentially given beta-blockers to treat cardiac arrhythmias, while children with breathing problems may be referred to a pulmonologist and children with depression to a psychiatrist.
However, many patients, like Emma, come to doctors with phantom symptoms that don’t show up on scans or blood tests.
“For example, we don’t see any signs of structural damage to the brain,” says Malone. “When we do an MRI, they often come out normal.”
It is possible that the virus persists in some patients, says Rajeev Fernando, MD, an infectious disease specialist and research fellow at Harvard Medical School in Cambridge, Massachusetts. The strong immune systems of children often cope with problems that can be noticed. But dead fragments of the virus remain inside, floating in hidden parts of the body and activating the immune system long after the threat has passed.
The virus may be in the gut and in the brain, which may help explain why symptoms such as brain fog and nausea may persist in children.
“The immune system does not recognize whether virus fragments are dead or alive. She continues to think she is fighting active COVID,” says Fernando.
There is little data on how long symptoms last, how many children get them, and why some are more vulnerable than others, Fernando said. Some studies have shown that 5% to 15% of children with COVID-19 may develop long-term COVID-19, but statistics vary worldwide.
“Kids with long-term COVID have been largely neglected. And although we are talking about it now, we have something to work on, ”says Fernando.
As for Emma, she recovered in January 2021, returning to school and her friends, although her cardiologist advised her to skip the gym.
“For the first time in months, I felt like myself again,” she says.
But the coronavirus got to Emma again. Although she was fully vaccinated in the fall of 2021, when the Omicron variant swept the world at the end of that year, she became 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 symptoms of a cold eventually disappeared, but the problems with the intestines remained. Since then, Emma has had severe nausea and has lost most of the weight she has gained.
For her part, Maria has found solace in the Long COVID Kids group, a non-profit organization in Europe and the United States. The group is raising awareness of children’s conditions to increase funding, improve understanding, and improve treatment and outcomes.
“There is nothing worse than watching your child suffer and not being able to do anything about it,” she says. “I tell Emma all the time, if I could just get into your body and take it, I would do it in a second.”
Emma hopes her family’s move will start with a clean slate in Sotogrande, southern Spain, in the coming weeks.
“I miss the simple things like running, going to the fair with friends and just feeling good,” she says. “I have a long list of things that I will do when all this is done.”
Emma Sherman, long-term COVID patient, Ascot, UK.
Marie Sherman, Emma’s mother.
Laura Malone, MD, co-director of the Johns Hopkins Kennedy Krieger Children’s Rehabilitation Clinic after COVID-19, Baltimore.
Rajiv Fernando, MD, infectious disease specialist and research fellow at Harvard Medical School, Cambridge, Massachusetts.