Father wants to improve CDC reporting of diseases with "polio" like symptoms in children as MFA cases grow

Jeremy Wilcox has been fighting for two months to get a diagnosis of acute flaccid myelitis, or AFM, for his son.

"I've seen the pros and cons of the health system," said Herndon's father, in Virginia, at ABC News.

During the second week of September, Joey Wilcox, 4, caught a cold. He had a fever and had breathing problems.

On September 25, he woke up with paralysis on the left side of his face. The next day, while Joey's fever persisted, his parents took him to the hospital. Joey was unable to walk, so Wilcox's wife took him to the emergency room. After examining Joey, the doctors informed the couple that their son might be infected with the virus, and then they fired him.

With permission from Mikell Sheehan

Less than 48 hours later, Wilcox told ABC News that his son was paralyzed from neck to foot. They took her to the Fairfax Inova Children's Hospital in Virginia. After the doctors ordered a CT scan and spinal tap, they discovered Joey's spinal cord swelling from the brainstem.

Joey, who had lost all physical control, was in the hospital for 36 days. Doctors have continued to aggressively search for viruses, but the results have been negative.

In October, doctors diagnosed Joey's multifocal encephalomyelitis because of lesions in the gray matter of the spinal cord. After his transfer to the Kennedy Krieger Institute in Baltimore, he was sent for an AFM treatment at the request of a neurologist.

Despite his symptoms reflecting those of the mysterious symptoms, Joey has not yet been officially diagnosed with AFM, said his father.

Over the years, ABC News has published articles on hundreds of children left paralyzed by the AFM, a disease that appears to peak every two years in the United States.

Courtesy of Jeremy Wilcox

AFM is a disease that has polio-like symptoms, such as partial paralysis. The virus mainly affects children and young adults. The Centers for Disease Control and Prevention said they did not know why the disease affected these people, but many believe that it is caused by viruses.

As of Monday, according to the CDC, 106 confirmed cases of AFM have been confirmed this year and another 167 are under investigation in 29 states. The organization is always trying to find a definitive cause.

Dr. Nancy Messonnier, director of the CDC's National Center for Immunization and Respiratory Illness, told reporters at a briefing on November 13 that there had been had "no deaths among MMA patients reported to the CDC in 2018".

However, this statement has aroused strong criticism from Wilcox and other parents of children with AFD, who feel that the CDC is not doing enough to properly report cases and deaths due to any of these polio-like symptoms.

Wilcox said he contacted Dr. Anne Schuchat, deputy director of the CDC, who then organized a meeting between herself, National Institutes of Health officials, and relatives in Washington, DC. He stated that 18 parents were present at the meeting. including parents who reported that their two children had died of AFM this year.

Courtesy of Jeremy Wilcox

Wilcox said he and other parents had come to the meeting to ask the deputy director to make the MFA a nationally notifiable disease and report all mandatory MFA cases.

Currently, each state's health department has its own list of patients reported to the AFM, but many health professionals do not immediately report suspected cases, Wilcox said.

Parents also called for more transparency, better communication, effective protocols and an update of the potential causes of MFA. They highlighted the latest CDC report, which still uses 2014/2016 data.

"The challenge facing the CDC and the issue of misdiagnosis of children is the complexity of the symptoms," said Wilcox.

Many parents who have met with Schuchat and the NIH are continuing their work in Washington, meeting with other health officials and talking to their future legislators.

"We have become parents' advocates for the AFM and we want to make things easier for others. Parents really want to know why our kids are sensitive to this, "said Wilcox.

On Monday, the CDC announced the creation of an AFM working group to facilitate ongoing research to determine the cause of the disease and improve treatment. Schuchat also informed parents that the working group would develop a comprehensive research program and would call on additional neurologists to review the MRI.

"I enjoyed the opportunity to listen to families and share information about the CDC's efforts to respond to AFM," Schuchat told ABC News after the meeting with parents.

Wilcox called the task force "positive development".

Courtesy of Jeremy Wilcox

"I am encouraged to learn that additional resources are being allocated to the CDC and that experts will collaborate with the CDC to discuss better ways to diagnose and treat patients," Wilcox told ABC News on Tuesday.

Currently, the CDC says there is no effective treatment for children with AFM, but Wilcox said his son is making significant progress with intravenous immunoglobulin (IVIg) therapy, a therapy that can help people with immune systems. is weakened.

Along with a steroid diet and constant therapy, Joey still has a long way to go before he can potentially achieve full mobility.

"I learned that you had to defend your child's interests," said Wilcox, who is now considering working with other parents to create a non-profit organization to further the interests of families.