Federal health officials are asking parents and health care workers to be on the lookout for symptoms of a mysterious paralyzing illness among children ahead of an anticipated seasonal outbreak over the next several months.
The polio-like illness is called acute flaccid myelitis, or AFM, and tends to peak every other year in the U.S. The last surge in cases was in 2018 when a record 238 cases were reported in 42 states, according to the Centers for Disease Control and Prevention.
In that year, 35% of patients weren’t hospitalized until two or more days after showing signs of limb weakness, hindering the chances of early detection and of children making a full recovery, the CDC said.
“AFM can progress rapidly over the course of hours or days, leading to permanent paralysis and/or the life-threatening complication of respiratory failure in previously healthy patients, so delays in care can be serious,” the CDC said in an advisory released Tuesday.
“Parents and doctors should suspect AFM in patients with sudden limb weakness, especially during August through November,” the CDC added. “Recent respiratory illness or fever and the presence of neck or back pain or any neurologic symptom should heighten their concern.”
There is no proven treatment, test or prevention method for AFM, which had its first known peak of 120 cases in the U.S. only in 2014.
Most patients have had a fever and/or respiratory illness approximately six days before showing signs of limb weakness. Nearly all patients, or 98%, were hospitalized, and just over half were admitted to an intensive care unit. Of those hospitalized, a quarter required a ventilator, the CDC said.
“Recognition and early diagnosis are critical,” said CDC Director Robert Redfield in a statement. “CDC and public health partners have strengthened early disease detection systems, a vital step toward rapid treatment and rehabilitation for children with AFM.”
Enteroviruses, which enter through the intestine, are suspected as being responsible for the increase in cases every other year. The most common virus identified among patients is EV-D68, but other viruses can cause the condition. Though AFM’s symptoms resemble polio, all specimens taken from patients have tested negative for that virus, the CDC said.
Researchers have said that more information is needed, particularly in determining whether the condition is related to a virus directly attacking the central nervous system or whether an immune response plays a role.
“Additional studies are needed to assess risk factors, establish causality and develop a more comprehensive understanding of the mechanisms that lead to AFM,” researchers said in a study published last fall.
The CDC’s guidelines to prevent an enterovirus infection include washing hands with soap and water for at least 20 seconds; avoiding touching eyes, noses and mouth with unwashed hands; avoiding close contact with people who are sick; covering coughs and sneezes with a tissue or shirt sleeve; cleaning and disinfecting frequently touched surfaces; and staying home when sick.
Health officials have expressed uncertainty as to whether the current COVID-19 pandemic will complicate early detection among patients or whether social distancing efforts and improved hand-washing will reduce the risk of occurrence.
“These practices may result in a decreased circulation of other viruses, including enteroviruses, and therefore either decrease or delay AFM this year,” Dr. Janell Routh, a CDC medical officer and AFM team lead, said at a presentation last month.
Rachel Scott — whose son, Braden, was 5 when diagnosed in 2016 with AFM — formed the nonprofit advocacy group Acute Flaccid Myelitis Association in early 2019. She recently spoke out about his diagnosis and ongoing recovery to inform other parents and medical professionals about the condition and the importance of early detection.
“I truly believe that awareness about AFM will save children in the coming months. Even in our current pandemic, parents must know that any form of limb weakness following a cold must be taken seriously,” she said at the CDC’s AFM presentation last month.
Her son is one of the earliest known examples of the condition. He became almost entirely paralyzed after contracting what appeared to be a common cold ― something that Rachel Scott said her other children contracted and recovered from.
“I attributed everything to what I believed was a sore throat. In my mind, he was weak because he wasn’t eating, and he wasn’t eating because his throat hurt. We never once entertained the possibility that perhaps his swallowing muscles were paralyzed, and paralysis was slowly spreading through his body,” she said.
Because of uncertainty about his condition, Braden wasn’t immediately hospitalized, and he wasn’t properly diagnosed by doctors. Rachel Scott said she wonders how different his life would be today if she had known what to look for at the time.
Today, after years of daily physical therapy and undergoing a nerve transfer and decompression, Braden is able to walk short distances independently and has regained some ability to swallow on his own, she said.
“Our battle is unending,” Rachel Scott said. “We are so desperate for more awareness and more research so kids can be quickly and effectively treated.”
CORRECTION: A previous version of this story incorrectly misquoted Dr. Janell Routh saying that COVID-19 practices could potentially increase or delay AFM cases. She said they could decrease or delay AFM cases.
This article originally appeared on HuffPost and has been updated.