Up to 5.8 million young people have long COVID, according to a recent study — and parents like Amanda Goodhart are looking for answers.
She says her 6-year old son Logan caught COVID multiple times. But even months later, his symptoms didn't get better.
"To see him struggle to stay awake, or crying and saying he doesn't feel good, it's heartbreaking, it's demoralizing, because there's not a lot of treatment options," she told CBS News.
Study author Dr. Rachel Gross of NYU's Grossman School of Medicine says one major challenge in tracking the illness is that symptoms can vary.
"Long COVID can look different in different children, that not everybody has the same symptoms and that it can look different depending on when the symptoms start," she says.
Some common long COVID symptoms in kids include:
- Headache
- Loss of taste and smell
- Brain fog
- Pain
Logan has also been dealing with circulatory and gastrointestinal problems, and he gets tired even from things like standing in line.
Doctors say most children with long COVID recover over several months, but about a third experience symptoms even one year later.
Goodhart says it's been frustrating, adding they've tried multiple treatments with only moderate improvement.
"It's terrible, there's nothing worse than seeing your child go through something you can't fix," she says.
The research also shows long COVID can raise the chances of a child developing type 1 diabetes. And it can even be deadly, leading to multisystem inflammatory syndrome in children. The Centers for Disease Control and Prevention describes the syndrome as a "rare but serious condition associated with COVID-19 in which different body parts become inflamed, including the heart, lungs, kidneys, brain, skin, eyes, or gastrointestinal organs."
"This study was urgently needed because there are so many questions that need to be answered about pediatric long COVID," Gross says.
The Goodharts hope more attention is given to studying long COVID so more effective treatments can be found.
Sara Moniuszko is a health and lifestyle reporter at CBSNews.com. Previously, she wrote for USA Today, where she was selected to help launch the newspaper's wellness vertical. She now covers breaking and trending news for CBS News' HealthWatch.