NEW YORK (AP) – One morning last fall, 4-year-old Joey Wilcox woke up on the left side of his face, drooping.
This is the first sign of an unfolding nightmare. Joey was later in a hospital for intensive care, unable to move his arms or legs or sit. Spinal cranes and other tests failed to find a reason. Doctors worried that he would lose his ability to breathe.
"This is devastating," said his father Jeremy Wilcox of Herndon, Virginia. "Your healthy child may get cold – and then become paralyzed."
Joey, who survives but still suffers from some of the consequences, is one of the 228 confirmed victims in the United States last year of acute loosened myelitis or ASM, a rare, mysterious, sometimes fatal, paralyzing disease that looks like a tide cycle every year and start worrying civil servants as it kills more and more children.
Dr. Anthony Faucci, head of the National Institute of Allergy and Infectious Diseases, said he could bring similarities to polio that has fired among humans for centuries before exploding into a terrible epidemic in the 1
Faucci, who published a report on the disease on Tuesday in the mBio magazine, said AFM was unlikely to become as bad as polio that hit tens of thousands of American children a year before the vaccine was available in the 1950s.
But he warned: Suppose this would remain in a few hundred cases every other year. "
Other countries report cases, including Canada, France, the United Kingdom and Norway. But the size and pattern of epidemics in the US are more pronounced. More than 550 Americans have been affected in this decade. More than 90% were children, mostly about 4, 5 or 6 years old.
Most have had a cold-like illness and fever as if overcome and then paralyzed. In some cases, it began in a small way-for example, a thumb that would not move suddenly. Some have lost their ability to eat or take a breath.
Many families say that their children have regained at least some movement in the affected limbs, but the stories of full recovery are unusual. Health officials can not tell how much they have fully recovered, in part or in total, or how many have died, although Centers for Disease Control and Prevention say that death is rare. Scientists suspect that the disease is mainly caused by a particular virus, identified more than 55 years ago and may have mutated to become more dangerous. But they have not yet proved that.
While doctors have been using a number of treatments alone or in combination – steroids, antiviral medications, antibiotics, blood cleansing – the CDC says there is no clear evidence that they are working. Many parents say that when they first brought their child to the emergency room they quickly realized that the doctors were at sea.
"Everyone is desperate for some magical thing," said Rachel Scott. A woman whose son Braden develops the AFM in 2016 and has recovered after intense physical therapy, but still can not move his right hand and has trouble swallowing and moving his neck.
An increasing number of experts agree that physical therapy makes them "These children can continue to recover very slowly during the year. … This is due to how much therapy they are doing, "said Dr. Benjamin Greenberg of the Southwest Medical Center in Dallas, one of the country's largest experts on this condition.
Wilcox, Joey's father, said his son made enormous improvements. thus. Joey can run and use his hands. However, muscle tone is weak in his right leg and shoulder, and he still has facial paralysis. "He can not completely smile," his father said.
Other stories are more tragic.
Kate Bustamante Alex's son Alex developed the AFM in 2016. Sacramento, Calif., Suburban Sacramento, found out that something was wrong when the boy asked, then five, why not eat her yogurt. Alex replied that his thumb had stopped working and could not keep his spoon.
This morning was the beginning of a 17-month stay in the hospital, cabinets, therapy, and the fight with doctors and insurers to find a way to rebuild their abilities. to breathe. That ended one morning last May when Bustamante woke up to discover that Alex had died.
Government officials have to step up, said Bustamante.
"I want them to study it and find the cause, and I want them. to find a way to prevent it, "she said. – That's growing. This should not happen. "
An increasing number of experts believe that the main culprit is the enterovirus called EV-D68 based on how the AFM waves coincide with the spinal cord injury caused by the EVD-68. Enterooviruses are a large family of viruses, some of which, like poliomyelitis, can damage the central nervous system, while many others cause mild symptoms or none.
In the United States, doctors began to report respiratory diseases associated with the EV-D68 in 1987, though typically no more than a dozen in a given year.
Then, in one of the first signs of AFM waves, a 5-year-old boy in New Hampshire dies in 2008 after developing sensitivity to the neck and fever, then weakened hands and dead feet. The boy had EVD-68, and in a report published in a vague medical diary, the researchers attributed his death to the virus. California and Colorado.
Several years, odd years went by: the cases dropped to 22 in 2015, jumped to 149 in 2016, and again fell to 35 in 2017
According to the cyclical model, only four cases were confirmed this year so far.
CDC officials consider AFM disease based on scanned and other evidence showing a certain type of spinal cord injury. Evidence of enterovirus infection is not necessary in order for the case to be counted, mainly because it is difficult to prove the existence of such evidence. Until now, CDC researchers have only been able to detect evidence of enteroviruses in the spinal cord brain in just four of the 558 confirmed cases.
Scientists use more sensitive spinal fluid tests in hopes of establishing the relationship between AFM and EV-D68. firmly. This, in turn, can stimulate more focused work on treatment and perhaps even a vaccine.
Meanwhile, Fauci's agency invites researchers to apply for federal funds and uses a network of pediatric universities in Alabama. research centers for work on the disease.
The CDC is also committed to more attention. Parents have accused the agency of doing more than counting the cases and complaining that when they tried to contact the CDC, they encountered only automated phone trees and responses.
CDC officials began meeting and talking with families, a scientific working group and working to monitor cases more closely.
Fauci suggested it was a mistake to assume that surges would happen every other year forever. The next "may be in 2019 for everything we know," he said. AP is solely responsible for all content.