“The second clue,” he said, “is that the time of year is right.”
Historically, September has been the biggest month for AFM cases.
Anyone who has ever had the sniffles has probably had an enterovirus; they are so common. Most of the time, viruses cause mild symptoms, such as a runny nose, cough, headache, and general feelings of “meh.”
The D68 enterovirus strain began to cause more serious problems in 2014, when the United States saw, for the first time, a spike in pediatric AFM. That year, 120 children were diagnosed.
There is no specific cure or treatment for paralysis. Even with years of intensive physical therapy, many are left with life-altering disabilities.
A viral mystery
Although a few dozen cases have been reported every year since then, larger waves of AFM followed a pattern each yearspiking again in 2016 (with 153 cases) and in 2018 (with 238 cases).
The pattern stopped in 2020 when the nation went into lockdown due to the Covid pandemic, drastically reducing the viral spread. That year, only 32 cases were registered. The spread of D68 resumed in 2022 when the blocks were lifted.
Interestingly, an increase in AFM cases did not follow.
“We’ve seen the virus previously driving the AFM cases, but we haven’t seen the AFM cases associated with it,” said Dr. Kevin Messacar, an infectious disease specialist at Children’s Hospital Colorado, who has treated some of the first AFM cases. in 2014.
It is a mystery that every virologist will appreciate. While experts try to predict how viruses will behave, bugs are always working to stay a few steps ahead.
It could be that the virus itself has changed, or that more people in the United States have been exposed and now have a level of immunity to D68. “We’re still trying to figure it out,” Messacar said.
Until 2024, 13 AFM cases have been confirmed, according to the Centers for Disease Control and Prevention. Since 2014, 758 cases have been registered.
The implication is that hundreds of families and their children have been left with lasting, life-changing paralysis due to a virus.
Some recovery after years of physical therapy
The Kagolanu family in Los Altos, California, was playing Monopoly on a Friday night in November 2014 when 7-year-old Vishnu’s head inexplicably began to tilt to one side. Vishnu admits that even though he lost the game, this was not careful behavior.
“My dad was like, ‘Hey, what are you doing?’ Move your head back straight,” said Vishnu, now 17. “I just thought, I can’t do that.”
Within an hour, Vishnu lost all ability to move his arms and legs. “I couldn’t leave the floor,” he said.
Vishnu was one of the first to be diagnosed with AFM in 2014. At the time, no one had connected the dots between D68 and the “mystery disease.”
“We didn’t understand what was going on. Even the doctors couldn’t figure out what was going on,” said Saila Kagolanu, Vishnu’s mother. “It was the worst experience of my life.”
Doctors warned Vishnu’s family that he might never regain the function of his arms and legs. Bad prognosis crashed Vishnu. He had always thrived as “king of the playground” when it came to sports and other physical activities.
“Seeing my legs get progressively smaller every day” was devastating, she said. “I couldn’t move.”
Vishnu spent years undergoing physical therapy to regain the ability to walk. That was successful. Otherwise, there are not many doctors who can do it. His right shoulder remains limp.
Try a possible treatment
“We all get really frustrated whenever we get to this point, and we don’t have antiviral drugs that are readily available,” said Dr. Buddy Creech, a pediatric infectious disease physician at Vanderbilt University Medical Center in Nashville. “We don’t have much to offer these kids.”
Creech and his colleagues are working toward a solution. They have begun safety studies of a monoclonal antibody that would ideally stop D68 in its tracks.
“In the mouse studies, it prevented the infection that would lead to AFM,” Creech said. The study is expected to take years before the treatment is considered safe and effective.
Meanwhile, young people like Vishnu Kagolanu are trying to pass and even inspire others with AFM. In recent years, he started a nonprofit called Neurofortwhich works to raise funds for and raise awareness of children with neurological conditions.
“Growing up with AFM is difficult,” Kagolanu said. “But at the same time, there are ways around some of those obstacles. There are ways to find joy.”