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One morning last fall, Joey Wilcox, aged 4, woke up with the left side of his face falling down. This was the first sign of a nightmare that was unfolding. Three days later, Joey was in an intensive care unit, unable to move his arm or legs or sitting down. Taps and other tests did not find a cause. Doctors feared losing 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 of the effects of the disease, was one of 228 confirmed victims of acute flaccid myelitis, or AFM, in the United States last year. Paralyzing disease, rare, mysterious and sometimes fatal, seems to follow a cycle every two years and begins to alarm public health officials as it strikes more and more children.Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, said that the AFM could present similarities with polio, which had been hatching humans for centuries before turning into epidemics formidable in the 19th and 20th centuries. Fauci, who published a report on the disease In the journal mBio, on Tuesday, it is unlikely that the AFM will become as serious as polio, which strikes tens of thousands of American children every year before A vaccine was not available in the 1950s. But he warned, "Do not assume that the vaccine will remain in a few hundred cases every two years. While other countries, including Canada, France, Great Britain and Norway, have reported cases, the scale and pattern of outbreaks in the United States has been more pronounced. More than 550 Americans have been hit this decade. The oldest was 32 years old. More than 90% of those infected were children, most around 4, 5 or 6 years old. Most had a cold and fever, seemed to recover and then sank 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. Many families say their children have found at least some movement in the affected limbs, but full recovery stories are unusual. Health officials can not tell how many infected children have recovered completely, partially or not at all, and how many have died, although according to the Centers for Disease Prevention and Control, the deaths due to the MAF are rare. Scientists suspect this disease to be primarily caused by a certain virus that was identified over 55 years ago and may have mutated to become more dangerous. And while doctors have deployed a number of treatments, including steroids, antiviral drugs, antibiotics and a blood-purifying process, the CDC says there is no clear evidence of the effectiveness of treatments Many parents say that they first took their child to the ER and quickly became horrified that the doctors were also at sea. "Everyone desperately needs something magical," Rachel said. Scott, a woman whose son, Braden, developed AFM. in 2016 and is somewhat restored after intensive physical therapy, but still can not move his right arm and has trouble swallowing and moving his neck.A growing number of experts agree that physical therapy makes a difference. "These children can continue to recover very slowly over the year. It's motivated by the amount of therapy they follow, "said Dr. Benjamin Greenberg of UT Southwestern Medical Center in Dallas, one of the country's leading experts in this field. Wilcox, Joey's father, said his son had made huge improvements. Joey can run and use his arms. But the muscular tone of his leg and his right shoulder is weak and he still has paralysis on the left side of the face. "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 suburbs of Sacramento, California, She realized that something was wrong when she asked the boy, then at age 5, why he was not eating his yoghurt. Alex said his thumb stopped working and he could not hold his spoon anymore. This morning was the beginning of 17 months of hospitalization, surgeries, treatments and difficulties with doctors and insurers trying to restore his ability to breathe. It ended one morning last May, when Alex died as a result of an AFM complication. Government officials must intervene, Bustamante said. "I want them to research and find the cause and find a way to prevent it," said Bustamante. she says. "It's growing. This should not happen. More and more experts are convinced 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. A 5-year-old boy from New Hampshire died in 2008 after developing neck pain and neck pain. fever, then weakened arms and dead legs. The boy was carrying the EV-D68 virus and, in a report published in an obscure medical journal, researchers attributed his death to the virus. The first wave of MFA cases was recorded in 2014, when 120 cases were confirmed, with the highest concentrations recorded in California and Colorado. The result was 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 were 228, a number that could increase because Diseases are still under investigation.According to the cyclical trend, only four cases have been confirmed so far this year.The CDC officials diagnose the AFM basing themselves on on scanners 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 the AFM and the EV-D68. This could lead to more focused work on treatments and possibly even a vaccine. At the same time, the Fauci agency has called on researchers to solicit federal funding and is currently operating a network of pediatric research centers. anchored at the University of Alabama. working on the disease. The CDC is also committed to focusing more. The parents accused the agency of only counting the cases and complained that, when they tried to contact the CDC, they only encountered autoresponders and automatic replies. CDC officials began organizing meetings and calls with families. He has also set up a scientific working group and employs him to monitor cases more closely. Fauci suggested that it would be a mistake to assume that surges will occur every two years. The next "maybe in 2019, as far as we know," he said.
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 survived but is still suffering from some of the effects of the disease, was one of 228 confirmed victims in the United States last year of acute flaccid myelitis, or AFM. Paralyzing disease, rare, mysterious and sometimes fatal, seems to follow a cycle every two years and begins to alarm public health officials as it strikes more and more children.
Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, said that the AFM had 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 the disease Tuesday in the journal mBio, said that it was unlikely that the AFM would become as serious as polio, which strikes tens of thousands of children Americans 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, including Canada, France, Great Britain and Norway, have reported cases, the extent and distribution of outbreaks in the United States has been more pronounced. More than 550 Americans have been hit this decade. The oldest was 32 years old. More than 90% of those infected were children, most around 4, 5 or 6 years old.
Most had a cold-like illness and fever, seemed to recover and then sank 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.
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 are not able to say how many infected children have recovered completely, partially or not at all, or how many have died, although the Centers for Disease Control and Prevention say that deaths due to at the MAF 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, including steroids, antiviral drugs, antibiotics and a blood-purifying process, the CDC says there is no clear evidence of the effectiveness of the treatments.
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 therapy they follow, "said Dr. Benjamin Greenberg of UT Southwestern Medical Center in Dallas, one of the country's leading experts in this field.
Wilcox, Joey's father, said that his son had made huge improvements in this way. Joey can run and use his arms. But the muscular tone is weak in the right leg and right shoulder, and he still has paralysis on the left side of the face.
"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 who were trying to find a way to restore his breathing capacity. That ended one morning last May, when Alex died of a complication of the AFM.
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 mild or no symptoms.
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 have been one of the first signs of the upcoming AFM waves, a 5-year-old boy from New Hampshire died in 2008 after developing a neck sensitivity and a fever, then weakened arms and dead legs. 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 MFA cases occurred in 2014, the year in which 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 so far this year.
CDC officials diagnose AFM on the basis of analyzes and other evidence showing some type of spinal cord damage. 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 calling on a network of pediatric research centers at the University of Alabama to work on the disease.
The CDC is also committed to focusing more. The parents accused the agency of only counting the 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. He has also set up a scientific working group and employs him to monitor 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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