Studies have shown about 1 in 4 adults who have gotten sick with COVID-19 — no matter how mild or severe their case was — will have long COVID symptoms lasting for four weeks or more.
Since the Delta variant has spread, millions of children have gotten sick, letting experts learn a little more about long-haul COVID in kids, but the questions still far outnumber the answers.
Ian Varys, a 12-year-old living in Crystal Lake, Illinois, practices taekwondo, which he says requires "a lot of patience and durability" — which, for him, have been exhausted for more than a year.
He's fighting debilitating headaches, stomachaches and dizzy spells.
"All the kicking and doing all the pushups and everything, it just, basically everything makes it worse," Ian said.
Post-acute COVID Syndrome, long COVID, post-acute sequelae of COVID, or PASC — it's all the same in the medical world.
In Ian's world, terms don't matter. Long COVID is a disappointing life change.
"I get reminded sometimes, and I just feel kind of hopeless sometimes how my parents are trying to ... help, and I can't do anything about it," Ian said.
On Oct. 5, 2020, a neurologist diagnosed Ian with post-COVID encephalitis after three months of his parents searching for a doctor who would believe them.
"He can't go do things with his friends, can't jump on the trampoline, can't do the simple things," Jeff Varys, Ian's dad, said.
"You can see in his eyes the pain is there, and the stomach also hurts too much," Miriam Varys, Ian's mom, said.
The problem with long-haul COVID in children is there's still so much unknown. The latest data shows a little more than 4% of children have long COVID, but experts think that's drastically under-reported.
Dr. Sindhu Mohandas is a pediatric infectious disease physician at Children's Hospital Los Angeles.
"There are populations who do not have access to COVID testing, so they never knew that they had COVID, but they could still now be having symptoms which are related to long COVID," Mohandas said.
She says long COVID is trickier in kids than adults, especially in younger children.
DR. SINDHU MOHANDAS: One of the things is difficulty concentrating, right, like brain fog. So how do you define brain fog in a 1-year-old?
NEWSY'S LINDSEY THEIS: What's the longest case that you've seen so far in your clinic?
MOHANDAS: Maybe a year. It's a long time. And again,what we see is highly biased because we are really referred the more serious cases, right? So I would not want that to scare anybody that that's how long it occurs. In most situations, it's a few weeks.
There's also the mental health aspect of long COVID. One study showed a third of long-haul adults had neurological or psychiatric conditions, with anxiety and depression topping the list, but there is no data on kids.
"I just lock my feelings inside a box and never open it," Ian said.
Science is moving to find answers for families like the Varys family.
The National Institutes of Health has spent nearly $470 million on 30 U.S. research teams to study long-haul COVID, in an effort called the Recover Trial. Hospitals like Children's LA will be including children in that trial and hope to enroll patients soon.
As for Ian Varys, he and his family are holding together, taking things day by day.
"We used to say that we are waiting for the miracle, but the miracle is every day. It's a miracle the way that he fights, the way that he approaches what is happening to him and the way that he wants to continue with his life."
Doctors say the best thing parents can do to protect their children from getting long COVID is to get them vaccinated. The FDA has emergency authorized, and the CDC has recommended, Pfizer’s lower-dose COVID vaccine for all children ages 5 and up.