Most youngsters are able to escape the worst of COVID, recovering easily after infection. But there are new questions about Post COVID Syndrome, especially now as doctors and parents are making decisions about vaccinating and protecting younger children from all aspects of the virus.
Miriam Varys is still trying to understand what happened to her son.
"You are seeing your son suffering and nobody knows why and nobody can help him," she said.
Ian Varys got sick a little more than a year ago. Initially his symptoms were unexplainable: headaches, stomach aches and dizziness. He was eventually diagnosed with COVID, and his illness was further complicated by pneumonia and then encephalitis, a kind of brain inflammation, his parents said.
"One doctor finally did say it is Post COVID," said Jeff Varys, Ian's father.
But that diagnosis brought little comfort.
"You don't know if it's going to stop or if it's going to get worse. It's your worst nightmare," Miriam Varys said.
The family said their once-active 12-year-old now struggles with nonstop headaches, fatigue and pain. His long-term prognosis is unknown.
"A lot of the stuff I like to do I can't do anymore," said Ian, "At school my headache gets worse sometimes but and it affects me kind of but not all the time."
They've been to specialists, but gotten no definitive answers or treatments.
The long COVID phenomenon in children is not well understood, as research proceeds in real time.
The intensity and duration of symptoms vary. Symptoms include debilitating fatigue, brain fog, headache, stomach issues, joint pain and sleep problems.
Dr. Mark Butterly, the vice chair of pediatrics at Advocate Children's Hospital, said the long COVID symptoms in children are fairly consistent with what they are seeing in adults, but in very different ratios.
"We're not sure at this point how significant this is going to be for kids, nor do we know for how long for these patients, adults or children. We're still going through the process," Butterly said.
There is no clear data on how often it's happening, but a recent review of 14 international studies published in the Pediatric Infectious Disease Journal suggests children and adolescents initially infected with COVID rarely have symptoms lasting more than 12 weeks.
Dr. Lisa Messinger, a pediatrician with Northwestern Medicine in Crystal Lake, is also observing that in her practice.
"The majority of my patients have recovered from the long COVID symptoms I would say in two to three months," she said.
Determining the exact risk of these more long-term lingering outcomes from COVID infections is crucial to help inform decisions about the importance and timing of vaccinating younger children.
"I do suspect there are a lot more kids out there that are struggling with, with something after their COVID infections," said Dr. Alexandra Yonts, a pediatric infectious diseases specialist at Children's National Hospital in Washington, D.C.
Children's National has partnered with the National Institutes of Health to run one of the largest studies of its kind on long COVID in kids and adolescents.
The $40 million joint project will examine physical and social impacts of long COVID. They're also investigating Multi-System Inflammatory Syndrome, or MIS-C, a poorly understood but serious rare condition.
"The number one thing when it comes to these prolonged COVID symptoms, or Long COVID as many refer to it, is not to be dismissive, to hear what patients are saying to you," said Yonts.
In in Chicago, researchers at Lurie Children's hospital will try to answer new questions about Post COVID Syndrome by revisiting old testing on mononucleosis and chronic fatigue syndrome.
Dr. Ben Z. Katz is partnering with colleagues at Northwestern University and DePaul University to study the parallels between the long term illnesses.
"By looking at people who had the same trigger and they have had different outcomes. That's probably the best way to figure out exactly what's going on," he said.
While science works to unlock answers, treatments that have helped with other lingering viral illnesses are being considered and prescribed. Those include gradual exercise, cognitive behavioral therapies, even caffeine. Katz said children are resilient and past experience with CFS and mono show people can get better over time.
"Even though there is no cure for this there are therapies that can be used to try to hasten recovery which is what I always try to tell people," Katz said.
Another unexplained phenomenon is why some children with mild to no initial symptoms of COVID can also develop these lingering conditions. Researchers are also working to better understand why long COVID disproportionately impacts Black and LatinX children
The Varys said they wanted to share their story so other families didn't feel alone. They're hoping for more research funding into Post COVID Syndrome, and they want others to know the financial and mental strain of Long COVID can be as significant as the illness.
"Some doctors didn't believe him," explained Miriam. "That's the point. You ask why we are doing this, because there are people that don't believe that this is happening. They didn't believe that Ian was having this so this is his way to say yes it happened to me. It is happening to more people."
Putting Kids First hearing before Congress focuses on COVID spread in children
On the National Mall in Washington DC, 630,000 white flags mark the American lives lost so far in the COVID pandemic. At a hearing before Congress Wednesday, members investigated the spread of COVID in kids.
"Vaccines are the key to dramatically decreasing the spread of the virus and allowing children to return fully to doing all the things they love to do, and that help them thrive," said Dr. Lee Beers, president of the American Academy of Pediatrics.
Among the concerns are the speed of spread, rising COVID cases, and the vaccine hesitancy of parents, propped up by false claims on the internet."
"The level of misinformation and disinformation about COVID vaccines that's been circulating online has been astounding, and this has proven much more difficult to address," Beers said.
More than 250,000 children have been infected with COVID in Illinois, the third highest in the nation behind California and Florida. Rep. Jan Schakowsky said even pediatricians have been targeted and attacked by people peddling deception.
"I have legislation, the Online Consumer Protection Act, which could hold these online purveyors of misinformation for what they do," she said.
Nationwide, there have been 5.5 million children infected so far during the pandemic, 1 million in the past month alone.