AFM – PART II
COMPILATION AND COMMENTARY
BY LUCY WARNER
NOVEMBER 13, 2018

I’VE BEEN TRACKING THE NEWLY IDENTIFIED ILLNESS AFM SINCE I FIRST SAW AN ARTICLE ABOUT IT IN OCTOBER OF THIS YEAR. IT ISN’T A TOTALLY NEW DISEASE, THOUGH, SO ANY OF YOU WHO WANT TO DO SOME PERSONAL RESEARCH ABOUT IT, SHOULD LOOK AS FAR BACK AS 2014 ALSO.

FOR MORE DETAIL ON SYMPTOMS, TREATMENTS, AND POSSIBLE CAUSES, SEE ALSO THIS OCTOBER ARTICLE. https://www.cbsnews.com/news/symptoms-of-mysterious-polio-like-illness-accute-flaccid-myelitis-parents-should-watch-out-for/. UNFORTUNATELY, THERE MAY BE A BIT OF A NATIONWIDE PANIC BEGINNING: https://wgntv.com/2018/11/13/parents-accuse-cdc-of-not-reporting-childrens-deaths-from-polio-like-afm/. CONCERN IS GOOD BUT PANIC NEVER IS. IF A REPUBLICAN EFFORT TO DIMINISH THE SIZE OF THE CDC FOR POLITICAL PURPOSES IS INVOLVED IN THIS PUBLIC HEALTH SCARE, I WILL FOCUS ON THAT, TOO. IF IT IS SHOWN TO BE TRUE, IT MAY SHOW UP IN THE NEWS OF THE NEXT SEVERAL DAYS OR WEEKS. ASSUMING THAT THOSE MONEY-MINDED REPUBLICANS HAVE NOT BEEN SO INSANE AS TO TAMPER WITH OUR ABILITY TO HANDLE PUBLIC HEALTH, I WILL MOVE ON TO TODAY'S STORIES.

https://www.cbsnews.com/news/afm-accute-flaccid-myelitis-cdc-confirms-more-cases-of-rare-paralyzing-illness-in-kids/
By ASHLEY WELCH CBS NEWS November 13, 2018, 2:55 PM
CDC confirms more cases of rare, paralyzing illness AFM in kids

VIDEO – CBS NEWS “FIRST STEPS” 3:40
VIDEO – IMPACT OF AFM 2:08

A total of 90 people in 27 states have come down with the rare, polio-like neurological condition acute flaccid myelitis, also known as AFM, so far this year, the Centers for Disease Control and Prevention reported Tuesday. That's up from 72 cases reported last week. The CDC is investigating an additional 162 cases for potential AFM.

Almost all of the patients are children under the age of 18. Officials still do not know what causes the illness and what is behind the recent spike in cases.

AFM is an illness that affects the nervous system, specifically the area of spinal cord called gray matter. It causes the muscles and reflexes in the body to become weak or even paralyzed. Cases of AFM are characterized by a sudden onset of arm or leg weakness and loss of muscle tone and reflexes. In extreme cases, patients may need a ventilator to breathe.

Its symptoms are likened to those caused by polio, which was eradicated in the U.S. thanks to the polio vaccine. However, the CDC has stressed that none of the children who developed these symptoms had the polio virus.

Symptoms of mysterious polio-like illness parents should watch out for

Health officials saw the first wave of AFM cases in 2014, when 120 cases were confirmed in the United States. Another 149 were reported in 2016. Case counts were far lower in 2015 and 2017, and experts don't know why it seems to follow an every-other-year pattern. In years where more cases have been reported, peaks are seen in the late summer and fall.

The CDC knows of one death in a child who had AFM in 2017. No deaths from the illness have been reported in 2018.

Questions also remain over what causes the illness itself. In 2014, the first wave of the mystery disease coincided with an outbreak of a specific type of virus, an enterovirus called EV-D68, leading the CDC to study a possible connection between the two.

However, this year officials have tested for EV-D68 in about three-quarters of the confirmed AFM cases and detected it in the spinal fluid of just one patient. Another type of enterovirus called EV-A71 was found in another patient.

Dr. Nancy Messonnier, director of the National Center for Immunization and Respiratory Diseases at the CDC, told reporters during a press briefing Tuesday that the CDC has created a task force of specialists to better understand AFM. She said the CDC is "broadening our hypotheses" for what may cause AFM.

For example, if the illness is caused by a virus, Messonnier said, it is possible that the currently available tests are unable to pick it up, or perhaps the germ has already cleared the spinal fluid by the time the testing was conducted, or that it is hidden elsewhere in the body.

Another theory is that there's something in certain individuals that predisposes their immune system to react so severely that it triggers paralysis.

All things considered, AFM is extremely rare, with the CDC estimating that less than one in a million people in the United States will get AFM every year.

"As a mom myself I can certainly understand why parents are worried," Messonnier said. "But it's important for parents to realize it still is a relatively rare condition."

She says parents who are concerned about AFM or think their child has symptoms of the illness should speak to their pediatrician.

© 2018 CBS Interactive Inc. All Rights Reserved.


https://wgntv.com/2018/10/13/10-kids-diagnosed-with-rare-polio-like-illness-in-illinois/?utm_source=related_1
10 kids diagnosed with rare polio-like illness in Illinois
POSTED 12:22 PM, OCTOBER 13, 2018, BY WGN WEB DESK AND ASSOCIATED PRESS, UPDATED AT 12:27PM, OCTOBER 13, 2018

Ten children in Illinois have now been diagnosed with acute flaccid myelitis (AFM), a rare polio-like condition, in Illinois.

Health officials said all the cases have come up in northern Illinois, and at least two of the children have been treated at Lurie Children’s Hospital. A 2-year-old from Batavia spent several weeks at the hospital and is now in a rehab facility.

The condition attacks the nervous system and can lead to arm or leg weakness and loss of muscle reflexes. It has received increased attention in recent weeks after health officials in Minnesota and Colorado saw spikes in reported cases, Illinois Public Health Department spokeswoman Melaney Arnold said.

The reported Illinois cases are preliminary diagnoses and only the U.S. Centers for Disease Control can confirm the diagnosis, according to Arnold. Until then, doctors are treating the cases as if they are AFM.

“The CDC has indicated there might be some increases in cases, and in mid-September we advised health care providers to be vigilant and report to the health department so that we can pass on the information to the CDC,” Arnold said.

Between August 2014 and August 2018, the CDC received information on a total of 362 confirmed cases of AFM nationwide. According to the CDC, the largest number of cases, about 50, were reported in September 2014 before dropping to single digits in following months. The number again spiked to about 45 in September 2016. There were about 15 cases reported in August 2018.

The agency said it hasn’t confirmed the cause for the majority of the cases, which primarily occur in children. However, it recommends practicing disease prevention measures, including staying up-to-date on vaccines and protecting yourself from mosquito bites.

Dr. Tina Tan, who specializes in infectious diseases and has attended to one of the children being treated for the illness, said the best advice for parents is to be vigilant and take note of concerning symptoms.

“If their child gets an enteroviral infection, they need to look for symptoms such as sudden onset of arm and leg weakness, difficulty swallowing. Sometimes slurring of the speech,” Tan said.

RELATED STORIES
2-year-old being treated for rare polio-like disease in Chicago6 children diagnosed with ‘Polio-like’ paralyzing illness in Minnesota


https://wgntv.com/2018/11/13/parents-accuse-cdc-of-not-reporting-childrens-deaths-from-polio-like-afm/.
Parents accuse CDC of not reporting children’s deaths from polio-like AFM
POSTED 10:02 AM, NOVEMBER 13, 2018, BY CNN WIRE

VIDEO -- Parents fear polio-like deaths underreported CNN

A rare polio-like illness, which paralyzes mostly children, has been confirmed in 26 states. CNN's Elizabeth Cohen reports parents are accusing the Centers for Disease Control and Prevention of hiding the deaths of afflicted children.
Published at: 5:41 PM, Mon Nov 12 2018

Parents of children who had a horrifying polio-like illness are accusing the Centers for Disease Control of hiding the deaths of two children who suffered from the condition.

The parents say by not publicly acknowledging the two deaths, the agency is intentionally downplaying the severity of acute flaccid myelitis (AFM), a disease that paralyzes healthy children in a matter of hours.

“I feel like they’re just sugar-coating this,” said Katie Bustamante, whose son Alex, age 6, died in May. “It eliminates my trust in the CDC.”

Their accusations come amid a wave of criticism from parents of children with AFM and from some of the CDC’s own medical advisers. In a recent on-camera interview with CNN, a group of parents gave the agency an “F” for its handling of the outbreak.

A CDC official said while she couldn’t comment directly on the boys’ cases, there may be a “lag” in AFM reporting from physicians to health departments to the CDC.

“I think we want to catch up with the backlog,” said Dr. Anne Schuchat, principal deputy director of the CDC, a 30-year veteran of the CDC and a retired rear admiral in the US Public Health Service. “Even the past week we’ve expanded the number of disease detectives on the program.”

Schuchat, who twice served as acting director of the agency and helped lead the fight against pandemic flu, SARS and anthrax, said she was sorry to hear that the parents think the CDC is hiding something.

“I certainly want to make sure the information that we have is shared as quickly as possible,” Schuchat said. “We wish we understood all that we need to about this disease and how to best diagnose it, how to treat it and how to give families enough information about what to expect. I think it’s very challenging when your child has been through something quite traumatic to not even know what the prognosis is.”

She added that there’s no simple lab test for AFM, so CDC disease detectives have to carefully review medical records.

RELATED STORY
Dr. Streicher returns to answer questions about polio-like disease, women’s health

Twenty-six states have confirmed cases of AFM, and 11 additional states have possible cases, according to a survey last week by CNN of state health departments. This year there have been 80 confirmed cases of the illness, and 219 cases are currently under investigation, according to the most recent CDC data.

On its AFM surveillance webpage, the CDC doesn’t mention any deaths from AFM. At a press briefing last month, Dr. Nancy Messonnier, director of the CDC’s National Center for Immunization and Respiratory Diseases, mentioned that the agency knew of one death in 2017, but did not mention any deaths this year, even when asked about it by a reporter.

Chris and Robin Roberts lost their 5-year old son, Carter, in September after a 2-year battle with AFM. CNN has seen portions of Carter’s and Alex’s medical records, which show their doctors had diagnosed them with AFM. In Carter’s case, doctors at three medical centers — Virginia Commonwealth University, Johns Hopkins and Boston Children’s Hospital — diagnosed him with the disease.

The CDC has set up a system where physicians report cases of AFM to their state health departments, which in turn report the cases to the CDC.

RELATED STORY
2-year-old being treated for rare polio-like disease in Chicago

Two pediatric neurologists who serve as medical advisers to the CDC on AFM say they think the agency could be faster in reviewing and reporting cases and deaths.

“It shouldn’t be taking this long to confirm these cases,” said Dr. Keith Van Haren, assistant professor of neurology at the Stanford University School of Medicine and one of the CDC advisers. That kind of a turn around time for mortality reviews is a symptom of a disconnect at the CDC.”

Carter’s parents agree.

“They’re doing a s*** job of measuring this, excuse my French,” said his mother, Robin, a healthcare IT specialist.

‘Mommy, mommy, help me’
On July 29, 2016, Carter vomited after dinner. The next day he had a fever of 99 degrees but was feeling well enough to eat and drink.

It’s just a virus, thought his parents, who have two older children. It was nothing alarming.

The next morning, Robin went into her son’s room and found him on the floor.

“Mommy, mommy, help me,” his mother remembers him saying.

Robin remembers trying to help Carter stand up. His head flopped back. He couldn’t use his right arm. She scooped up her son and took him to the emergency room.

Within a few days, Carter couldn’t move anything below his neck. He was put on a ventilator and never came off.

For the next two years, his family and nurses did everything for him. They fed him. They scratched his nose when he had an itch. All day and all night they turned him every 90 minutes so he wouldn’t get bedsores.

Carter was undeterred by his illness. He could read books by the time he was four. He instructed his father on how to construct characters out of Legos and medieval swords out of aluminum foil.

Carter went to pre-school, and in August of this year started kindergarten. He came home from his first day beaming about circle time and a pretty little girl in his class who wore a rainbow dress.

A few weeks later, on September 22, he was having trouble breathing. Robin was home alone with him and called an ambulance. His last words to her were: “Mommy, I’m fine.”

Today, Carter’s ashes sit in an urn in his family’s living room.

A doctor wants answers

Both Carter’s parents and Alex’s parents say they’re not sure if the CDC ever accepted their sons as official AFM cases back when they got sick in 2016.

Alex’s mother says his doctor told her he reported his death to the California Department of Public Health, but she doesn’t know what happened after that.

In Carter’s case, his neurologist Dr. Sanjai Rao, told CNN he filled out paperwork on the CDC’s website and following the CDC’s instructions, sent the paperwork, lab specimens and MRI findings to the Virginia Department of Health.

An epidemiologist there confirmed Carter’s information was sent along to the CDC, according to Rao, assistant professor of pediatric neurology at Children’s Hospital of Richmond at Virginia Commonwealth University.

Doctors and parents say part of their frustration is that when they’ve asked the CDC about cases and deaths, they haven’t received responses.

Rao says he reached out to a scientist on the CDC’s AFM team, but never heard back.

“I would like answers,” said Rao, an assistant professor of pediatric neurology at Children’s Hospital of Richmond at Virginia Commonwealth University.

His voice chokes with emotion as he talks about Carter, whom he cared for for more than two years. “I want to know that the process benefits future cases of children with AFM,” he said.

Other experts agree with Rao. “We want accurate numbers,” said Dr. Kenneth Tyler, professor and chair of the department of neurology at the University of Colorado School of Medicine, and an adviser to the CDC on AFM.

An accurate count could help answer questions, he said. Where are the cases? How old are the patients? Are they male or female? “That helps us understand causation,” he said.

“The CDC is in the place of trying to understand the long-term [consequences], and a death is really important,” added Van Haren, the pediatric neurologist at Stanford and adviser to the CDC.

Schuchat said the CDC is working hard on AFM. “We are working 24-7 on this and really take this seriously,” she said.

She said the agency has established a case definition for AFM, done laboratory testing on samples sent to them by state health departments, and worked with outside experts to publish information in medical journals.

A CDC spokeswoman said in the past two weeks, the agency has added 14 officers from the Epidemiologic Intelligence Services — known as “disease detectives” — to help review AFM reports filed by state health departments.

An enterprising parent
On June 10, 2017, about ten months after Carter got sick, Robin reached out to the CDC.

She was angry.

“I know it may seem menial, a request from a clinically educated mother, but you are doing these children and family a disservice to not further educate physicians or demand surveillance similar to that of Zika,” she wrote to an email address she found on the CDC’s website.

“Please do what is right by public health standards and gather more data,” she continued. “Or, god forbid if you know more than what you say in a limited fashion online please share it with the public and these patients. My son was immunized on schedule we observed very good hygiene precautions and still became a vent dependent quadriplegic overnight.”

She received a response two days later.

“We are sorry to hear about your son,” it said. “Your comments have been forwarded to the appropriate CDC program for their information. They will contact you directly if they have any questions.”

She never heard from the CDC again.

CNN relayed Robin’s story to the CDC.

“I’m so sorry to hear that. That’s very concerning,” Schuchat told CNN. “We are trying to better connect with families, and it’s so important that we listen to them.”

Several other parents told CNN their emails to the CDC have also gone unanswered. Some of those emails offered help to the CDC from the families’ Facebook group, which has gathered medical information on hundreds of AFM patients.

Messonnier, the CDC doctor, told CNN last month that she’d never heard of the Facebook group.

Last week another enterprising parent got a response from the federal agency. Four-year-old Joey Wilcox of Herndon, Virginia, was diagnosed with AFM in September. His father, Jeremy, works with government agencies as part of his job at a high-tech consulting firm. Wilcox knows how to seek out — and find — officials.

He aimed high. Online he found Schuchat’s email address, and asked her to meet with him and other parents. He says she responded within 15 minutes.

He thinks one of the reasons for the quick response is the “F” that parents gave the CDC.

That was a pivotal moment,” he said of the CNN story.

More than a dozen families are scheduled to meet with Schuchat Tuesday in Washington.

Carter Roberts’ and Alex Bustamante’s parents will be among them.

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