Braden Scott raises his thumbs while he practices the piano in Tomball, Texas on Friday, March 29, 2019. Braden was diagnosed with the mysterious syndrome called Acute Flaccid Myelitis, or AFM, in 2016 and was almost completely paralyzed. But since then, he has regained much of his muscle function. (Photo: David J. Phillip, AP)

NEW YORK (AP) – One morning last fall, Joey Wilcox, aged 4, woke up with the left side of his face sagging.

It was the first sign of a nightmare unfolding.

Three days later, Joey was in a hospital intensive care unit, unable to move his arms or legs or to sit down. Taps and other tests did not find a cause. Doctors feared that he was about to lose the ability to breathe.

"It's devastating," said his father, Jeremy Wilcox, of Herndon, Virginia. "Your healthy child can catch a cold and then become paralyzed."

Joey, who has survived but is still suffering from some effects, was one of 228 confirmed victims of acute flaccid myelitis, or AFM, a rare, mysterious and sometimes fatal disease that seems to be regressing at any time. cycle of the current year and begins to alarm public health officials as it strikes more and more children.

More: What parents should know about the polio-like crippling disease that the CDC warns about

Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, said that he could have similarities with polio, which had been hatching humans for centuries before transforming itself in terrible epidemics in the 19th and 20th centuries.

Fauci, who published a report on Tuesday's illness in the medical journal mBio, said that it was unlikely that the AFM would become as serious as polio, which strikes tens of thousands of people. American children every year before a vaccine is available in the 1950s.

But he warned, "Do not assume it will stay a few hundred times every two years."

While other countries have reported cases, including Canada, France, Great Britain and Norway, epidemics in the United States have been larger and more frequent. More than 550 Americans have been hit this decade. The oldest was 32 years old. More than 90% were children, most around 4, 5 or 6 years old.

Most had a cold-like illness and fever, seemed to recover, before sinking into paralysis. In some cases, it started modestly – for example, a thumb that would not move suddenly. Some have lost their ability to eat or catch their breath.

More: Scientists seek answers to AFM, a disease causing paralysis similar to polio in children

Many families say that their children have found at least some mobility in the affected limbs, but the stories of complete recovery are unusual. Health officials can not say how many were found completely, partially or not at all, or how many died, although disease control and prevention centers say that deaths are rare.

Scientists suspect that the disease is mainly caused by a certain virus identified over 55 years ago that may have mutated to become more dangerous. But they have yet to prove it.

And while doctors have deployed a number of treatments, alone or in combination – steroids, antiviral drugs, antibiotics, blood purification process – the CDC says there is no clear evidence of their effectiveness.

Many parents say that when they brought their child to the ER for the first time, they quickly became horrified to realize that the doctors were also at sea.

"Everyone is desperate for something magical," said Rachel Scott, a woman from Tomball, Texas, whose son, Braden, developed the AFM in 2016 and has recovered somewhat. after an intensive physical therapy, but still can not move his right arm and has trouble swallowing and moving his neck. .

An increasing number of experts agree that physical therapy makes the difference.

"These children can continue to recover very slowly, year after year. "It's motivated by the amount of treatment they receive," said Dr. Benjamin Greenberg of UT Southwestern Medical Center in Dallas, one of the country's leading experts on the disease.

Rachel Scott, left, talks with her son, Braden, in Tomball, Texas on Friday, March 29, 2019. "Everyone desperately needs something magical" to look after the children, Rachel said . Braden developed acute flaccid myelitis, or AFM, in 2016. (Photo: David J. Phillip, AP)

Wilcox, Joey's father, said that his son had made huge improvements in this way. Joey can run and use his arms. Nevertheless, muscle tone is weak in the right leg and right shoulder, and he still has facial paralysis on the left side. "He can not completely smile," said his father.

Other stories are more tragic.

Katie Bustamante's son, Alex, developed AFM in 2016. The mother of the suburb of Sacramento, California, realized that something was wrong when she asked the boy, then at age 5, why he did not eat his yogurt. Alex replied that his thumb had stopped working and that he could not hold his spoon.

This morning was the beginning of 17 months of hospitalization, surgeries, therapies and difficulties with doctors and insurers to find a way to restore his breathing abilities. That ended one morning last May when Alex died of complications.

Government officials must intervene, said Bustamante.

"I want them to seek and find the cause, and that they find a way to prevent it," she said. "It's growing. This should not happen. "

More and more experts believe that the main culprit is an enterovirus called EV-D68, based on how the MFA waves coincided with peaks in respiratory disease caused by EV-D68. Enteroviruses are a large family of viruses, some of which, like polio, can damage the central nervous system, while many others cause only mild symptoms, if any.

In the United States, physicians began reporting EV-D68-related respiratory illnesses in 1987, although there are usually no more than a dozen in a given year.

Then, in what may be one of the earliest signs of AFM waves, a 5-year-old New Hampshire boy died in 2008 after developing neck and fever sensitivity, then weakened arms and legs. dead. The boy had EV-D68 and, in a report published in an obscure medical journal, researchers attributed his death to the virus.

The first real explosion of ADM cases occurred in 2014, when 120 cases were confirmed, with the highest concentrations found in California and Colorado.

This resulted in an even year and an odd year: the number of cases dropped to 22 in 2015, to 149 in 2016 and to 35 in 2017. Last year, they reached 228, a number that can increase because of a large number of diseases are still under study.

In line with the cyclical trend, only four cases have been confirmed this year so far.

CDC officials consider an AFM for disease based on analyzes and other evidence showing some type of damage to the spinal cord. Evidence of an enterovirus infection is not necessary for one case to be counted, mainly because such evidence has been difficult to find. Until now, CDC researchers have been able to find evidence of enteroviruses in the cerebrospinal fluid of only four of the 558 confirmed cases.

Scientists are using more sensitive tests of cerebrospinal fluid in hopes of more firmly establishing the link between AFM and EV-D68. This, in turn, could lead to more focused work on treatments and perhaps even a vaccine.

At the same time, the Fauci agency has called on researchers to solicit federal funding and is currently using a network of pediatric research centers at the University of Alabama to fight the disease.

The CDC is also committed to focusing more. The parents accused the agency of only counting cases and complained that, when they tried to contact the CDC, they only encountered automated telephone services and answers.

CDC officials began organizing meetings and calls with families, setting up a scientific working group and monitoring cases more closely.

Fauci suggested that it would be a mistake to assume that surges will occur every two years forever. The next "maybe in 2019, as far as we know," he said.

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