CNN – The Centers for Disease Control and Prevention's medical advisers criticize the Federal Health Authority for its slow response to a polio-like illness that has affected hundreds of children over the past six years.
"Frustrated and disappointed" I think that's exactly what most of us feel, "said Dr. Keith Van Haren, one of the CDC consultants for AFM and associate professor of neurology at the Stanford University School of Medicine  Van Haren and other doctors who look after these children say that the agency is slow to collect data and is accompanying pediatricians and emergency physicians in the diagnosis and treatment of children suffering from the disease, the acute flaccid myelitis. [1
At a press conference this month, a CDC doctor said the agency was working hard to find the cause to find for the breakouts.
"We will continue to investigate to better understand the clinical picture of AFM cases, risk factors, and possible causes for the increase in cases," Dr. Nancy Messonnier, Head of the National Center for Immunization and Respiratory Diseases of the CDC.
She said the agency could do a better job of understanding the signs of the AFM. 19659002] "Obviously we're not doing a good job because it does not get where we want it to be, so we have to work harder," she told CNN in an interview.
According to CDC since 2014, there were 396 co-confirmed cases of acute limp myelitis, 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.
"You Need to Deal"
Doctors are not the only ones who are critical of the CDC's handling of the devastating disease.
On Saturday, five families whose children have AFM gathered in the McKenzie Andersen's home in Albany, Ore., To celebrate an early Halloween on the actual holiday, on which McKenzie will have surgery that is associated with a complication of the disease.
McKenzie was a happy, healthy, hip-hop – Dancing first grader when she developed pneumonia in 2014. Within four days she was paralyzed under the throat.
Today she can only move her left hand and her feet and toes, spending almost all her time in bed, a respirator breathes for them.
When the families at McKenzie chewed on Halloween treats at home, they talked about their disappointment at the CDC, and the mothers say the Federal Agency is doing better work should 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, who shared the concerns of the mothers and had some other concerns from them
Doctors want cases of AFM to the CDC must be reported, as it is required for many other diseases.
"To get to the root of the problem, we need to start with a simple calculation 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 the 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 consultants 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 developed paralysis.
If CDC focused on enteroviruses, it could quickly lead to treatment or vaccine according to interviewed CNN medical advisors.
"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 so, as any discriminating scientist would, we try to broaden our thinking and make sure we do not miss anything."  But according to CDC, the detection of polioviruses in the cerebrospinal fluid of patients is "unusual." The doctors interviewed by CNN believe the enterovirus could follow the same pattern.
The CDC consultants also said they wish the agency would do more to coordinate 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. "That frustrates and disappoints and makes so many sad."