(CNN) – Centers for Disease Control and Prevention's own medical advisers criticize the Federal Health Office for responding slowly to a polio-like disease that has hit hundreds of children in the past six years  "Frustrated and disappointed – I think that's exactly how most of us feel," Dr. Keith Van Haren, one of AFC's CDC consultants and Deputy Professor of Neurology at the Faculty of Medicine, Stanford University.
Van Haren and other doctors who look after these children say the agency has been slow to collect data and to guide paediatricians and emergency physicians on how to treat the children suffering from the disease, acute flaccid myelitis are.
"That's the CDC's job, they should do well, and it's a source of frustration for many of us that they do not seem to do these things," Dr. Kenneth Tyler, Professor and Chair of the Department of Neurology at the University of Colorado School of Medicine and another CDC consultant
At a press conference this month, a CDC doctor said the English: to further understand the clinical picture of AFM cases, risk factors and possible causes for the increase in cases, "said Dr. Nancy Messonnier, director of CDC's National Center for Immunization and Respiratory Diseases
The agency could do better to get the message about the signs of AFM.
"We obviously do not do a good job, because there is not any place we want it, so we have to work harder," she told CNN in an interview.
According to the CDC, there have been 396 confirmed cases of acute limp myelitis since 2014, which resembles polio and causes paralysis in children
This year there were 72 confirmed cases of AFM and another 119 possible cases are being investigated, according to the agency.
& # 39; you need to deal & # 39;
The Doctors are not the only ones who see the CDC's handling of the devastating disease as critical. On Saturday, five families whose children have AFM gathered at the home of 10-year-old McKenzie Andersen in Albany, Oregon to celebrate an early Halloween.
On the actual holiday, McKenzie will have an operation related to a complication of the disease.
McKenzie was a happy, healthy, hip hop-dancing, first year student when she developed pneumonia in 2014. Within four days she was paralyzed under the neck.
Today she can only move her left hand and her feet and toes. She spends almost all her time in bed, a respirator breathing for her.
When the families at McKenzie chewed on Halloween treats at home, they talked about their disappointment at the CDC. The mothers say that the Federal Agency should do better work to inform emergency departments about the signs of AFM.
The women helping to run a Facebook group for hundreds of parents whose children have the disease say that even today, six years after the first case series, the emergency rooms frequently send children home when they show signs of AFM and attributing the paralysis to a pinched nerve or other cause.
LeMay Axton said it happened to her granddaughter Cambria Tate She was 2 years old. Now, 4, she gets around in a wheelchair or slips on the floor.
She said that she would always wonder if Cambria would have more mobility if her AFM had been caught earlier. She wonders why this was not the case since Cambria fell ill in 2016, four years after the first cluster of cases of AFM.
"Looking back, I think, why did not they know? ? Why did not they notice? Why did not they get that? "" She said.
She said the CDC should reach hospitals with specific instructions about the signs of AFM, such as weak limbs and a drooping face, and what to do
"Come on, it's 2018. You need to deal with it," she said.
Although the CDC did not address hospitals directly through AFM, it turned to state health departments
In 2014 and again this year, the CDC provided a sample letter to state health departments they were able to send the symptoms of AFM to the care providers.
The federal agency has also submitted information to AFM for more than 6,000 professionals in local, state and federal agencies. Government officials were given instructions on how to send laboratory samples to the CDC for testing.
The parents of the Facebook group also criticized that the CDC was not in contact with them and other families affected by AFM.
Parents say they collected data on hundreds of children with the disease and offered to share it with the CDC, but when they contact the agency, they receive a form letter thanking them for their interest ,
Messonnier, The CDC doctor said the parents' votes were "really important".
"For other diseases I work on, we work directly with stakeholders," she said. "I suspect I did not know about this particular Facebook group."
CNN interviewed four physicians who serve as medical advisors to the CDC on AFM, which shared concerns among mothers and
Doctors want cases reported by AFM to the CDC need to be, as it is required for many other diseases.
"To get to the root of causality" "We have to start with a simple accounting of how many cases there are," Dr. Benjamin Greenberg, associate professor of neurology at UT Southwestern Medical Center, Dallas. "We do not know how many cases are out there, and that's just wrong."
Messonnier said that such required reports would be considered, but that the State Council and Territorial Epidemiologists make this decision, not the CDC  Twice, once in 2015 and once in 2017, this group decided that AFM does not have to be reported nationwide. The CDC agreed.
The CDC consultants interviewed by CNN say the agency has slowly narrowed down to enterovirus as the most likely culprit for AFM and instead has seriously considered other causes.
"It's a mystery So far we have not solved it, so we have to think broadly," Messonnier said at the press conference this month.
But the four medical advisers said it was reasonable to focus on enteroviruses. First, the clusters of cases occurred during the enterovirus season, which is late summer and fall. Second, many of the children had symptoms of enterovirus infection. Third, many patients have tested positive for an enterovirus, and these counselors think that more patients had the virus but were not tested for it, or the test was performed too late to record it. Fourth, when scientists infect mice with a particular enterovirus, the animals develop paralysis.
If the CDC focused on enteroviruses, it could quickly lead to a treatment or vaccine, according to CNN medical consultants.
"The CDC does not seem to agree with the conclusions most scientists come to, and we feel we are not heard," said Van Haren, the Stanford researcher. "We do not understand how the CDC arrived at the place where they are."
Messonnier said that although enteroviruses can cause AFM, it is not clear that they are conclusively the main culprit. Undoubtedly, the virus was not found in the cerebrospinal fluid of the patients.
"AFM is a destructive disease of the neurological system, and if this virus did this damage, we would expect to be able to find the virus in the cerebrospinal fluid of most of these patients, and we are not." she told CNN. "We can not explain these three pinnacles of the disease in [2014, 2016 and 2018] by enterovirus, and just as the sort of discriminating scientist would do it, we try to broaden our thinking and make sure we do not miss anything."  But according to CDC, the detection of polioviruses in the spinal fluid of patients is "unusual." The doctors interviewed by CNN believe that Enterovirus could follow the same pattern.
The CDC consultants also said they wanted the agency to coordinate more efforts across the country to find the best treatment for children with AFM. While some hospitals share their treatment outcomes, there is no systematic, national method for doing so.
"We're trying to systematically collect our data so we can get smarter over time," said Greenberg, the Dallas Children's Neurologist. "We are looking for public health officials to help us here."
The CDC plans to discuss with medical experts next week to discuss treatment issues, Messonnier said.
The agency's medical advisors say they're hoping for the meeting
The four consulting physicians said they hope the CDC will soon make changes, including encouraging mandatory reporting, recognizing that enterovirus is the likely cause of it AFM and better data collection is.
"Doctors are on The frontline, and what we see is really heartbreaking: children are one day healthy and in some cases really deeply disabled," Van Haren said. "This frustrates and disappointes and saddens so many of us."
By Elizabeth Cohen, Senior Medical Correspondent at CNN
The CNN Wire
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