Braden Scott, who was diagnosed with ASM, uses a device that supports his left hand. hand while practicing the piano in Tomball, Texas.
One morning last autumn, 4-year-old Joey Wilcox woke up with his left side on his face, drooping.
Three days later, Joey was 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. Louisiana, 5, left partially hulled after hair got GO-KART MOTOR, family said
"It's devastating," said his father, Jeremy Wilcox, from Herndon, Virginia. "Your healthy child may get cold ̵
1; and then become paralyzed."
Joey, who survived but still suffers from some of the consequences, was 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 looked like tides and has faded into every annual cycle and began to worry civil servants as it struck 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 melted among people for centuries before exploding into a terrible epidemic in the 19th and 20th centuries.
Faucci, who published a disease report Tuesday in the mBio magazine, said AFM was unlikely to become as bad as polio, which 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. "
While other countries report cases, including Canada, France, the United Kingdom and Norway, the size and pattern of American outbreaks 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, then fell into paralysis. In some cases, it began in a small way – for example, a thumb that suddenly did not move. Some of them lost their ability to eat or take a breath
Many families say 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 disease control and prevention centers say death is a rare occurrence.
Scientists suspect that the disease is primarily 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 taken a number of treatments alone or in combination – steroids, antivirals, antibiotics, a blood cleansing process, the CDC says there is no clear evidence that they are working. 19659005] Many parents say that when they first brought their child to the emergency room, they quickly realized the horror that doctors were at sea.
"Everyone is desperate for some magical thing," said Rachel Scott, a woman whose son Braden developed the AFM in 2016 and recovered somewhat after intense physical therapy, but still can not move his right hand and has problems with swallowing and moving your neck.
An increasing number of experts agree that physical therapy makes them "These children can continue to recover very slowly a year earlier … This is due to how much therapy they are doing," said Dr Benjamin Greenberg of the Southwest Medical Center in Dallas, one of the nations for the United States
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Wilcox, Joey's father , said his son made huge improvements that way. 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's son Alex developed the AFM in 2016. Suburban Sacramento, California, 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 struggle with physicians 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. This should not happen. "
An increasing number of experts feel confident that the main culprit is the enteroviral called EV-D68, based on how the AFM waves coincide with spikes of respiratory diseases caused by EVD – 68. Enteroviruses 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 EV-D68 respiratory diseases through 1987, though usually no more than e 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 an EVD-68, and in a report published in a vague medical journal, the researchers attributed his death to the virus, California and Colorado
Several years, odd years, 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 have been confirmed this year so far.
CDC officials consider AFM disease based on scanning 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.
Solid. 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.
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The CDC is also committed to a greater focus. Parents have accused the agency of doing a little more than counting cases and have complained that when they tried to contact the CDC they met only automated phone trees and formed responses. a scientific working group working on closer monitoring of cases.
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.