“I was super sick,” Ava said. “I hurt it. “
She couldn’t breathe. She had stomach problems and other infections, including mononucleosis, which eventually sent her to the emergency room.
In total, it took six weeks before the award-winning College of Charleston rider was allowed to ride again, but she has yet to compete.
“She tells me she feels like she has a concussion,” her mother said. “It’s like brain fog and almost constant fatigue and headaches. ”
The Bruggers are optimistic, but doctors still don’t know much about the long Covid-19 in young people. It’s such a new condition that it doesn’t even have a single name, and is also referred to as post-Covid or long distance.
There are interim guidelines from the United States Centers for Disease Control and Prevention. It is believed to have a disproportionate impact on black and Hispanic children. Symptoms can include difficulty breathing, fatigue, headache, joint pain, trouble sleeping, mood swings, and more, four weeks or more after an initial infection, but most research on Covid have focused on adults.
“If you ask me about chickenpox, there are a lot of details about chickenpox. It’s been studied for 70 years, but Covid has only been around for about a year, ”said Dr Ben Katz, who has treated children with Covid for a long time in pediatrics. infectious disease specialist at Ann & Robert H. Lurie Children’s Hospital in Chicago.
Doctors know how to treat the symptoms, Katz said, but many mysteries remain.
Then, The Children’s National Hospital in Washington, DC, in partnership with the National Institute of Allergy and Infectious Diseases, announced on Tuesday that it will begin a $ 40 million study into the long Covid and multisystem inflammatory syndrome in children, or MIS -VS. This will be one of the many efforts of the NIH.
Dr Bill Kapogiannis, program director in the Maternal and Pediatric Infectious Diseases branch of the NIH, said they are trying to understand MIS-C as well as the short, medium and long term effects of Covid-19 in children. and adults since last spring. .
“We don’t even have a good definition for that in adults, and for kids, we don’t even know what the definition should be of what we’re looking for,” Kapogiannis said.
Once scientists agree on a definition, they can look at treatment and prevention goals.
“You need a very focused, large-scale effort that really has a standardized approach to finding the answers,” he said.
Up to 2,000 young people will be enrolled in the multi-year study announced Tuesday. At least half will have recovered from asymptomatic or symptomatic Covid-19 or MIS-C, a rare complication that can sometimes result from infection.
Scientists hope the study will help them better understand the long-term impacts on physical and mental health after acute illness. The study will also attempt to determine how often children experience long-term problems due to Covid-19, what the risk factors are and how the disease might impact a child’s quality of life.
Little is known about why some children have long-term effects of the disease and others do not. Many in long-term Covid treatment were asymptomatic or had a mild case. At present, it appears that severe disease from Covid-19 is rare in children.
More than 4 million children and adolescents have tested positive for Covid-19 since the start of the pandemic, according to the American Academy of Pediatrics. It is believed that between 2% and 10% have a long Covid, but the potential number of children who have a long Covid can be much greater than the number that hospitals treat.
“I guess that’s just the tip of the iceberg,” said Dr Alexandra Yonts, infectious disease specialist and director of the long-running Covid clinic which opened in May at the National Children’s Hospital.
Since symptoms vary, it can be difficult for parents or pediatricians to notice when a child has this condition.
“It’s hard to say you know it’s definitely this thing with these five symptoms, confirmed by that one lab result alone, because it’s not it,” Yonts said.
For now, hospitals across the country are tailoring treatment to each child. Help cannot come soon enough.
“A lot of them come out there feeling like they’re lost and like they don’t know what’s wrong and they’ve lost everything that was normal in their life,” Yonts said.
At the Yonts clinic, to better understand which symptoms doctors must treat, all patients are screened, undergo laboratory work, then a multidisciplinary team is responsible for treating their various symptoms. There is physical medicine, psychological help and rehabilitation.
One symptom they all seem to share, to varying degrees, is persistent fatigue. Some have “a little brain fog”. For others, it is much worse.
“We had a few patients who, like literally during the first three months after having Covid, couldn’t stay awake for more than half an hour at a time,” Yonts said.
Hospitals have experience in treating children with post-infection syndrome, so there is at least a framework for clinics to follow.
Doctors work with the child to set small goals, much like when treating children with concussions, to help them return to physical and mental activity. They can start by reading for fun, or walking five minutes, and building from there.
“I think that’s honestly a big part of it – you just need to set goals, give some hope and have a plan,” Yonts said.
Treatment helps, but Ava, who just turned 20 last week, is still struggling.
“It’s really frustrating, and I just like wanting to feel normal, happy and energetic again,” she said.
But she feels that she will be better off with the help of others.
“I was very lucky that everyone around me was very supportive and understanding when I was not feeling well, it helped me a lot,” she said.