As cases of paralyzing illness mount in kids, families struggle to find answers

The recent spike in cases of acute flaccid myelitis or AFM has public health officials perplexed. AFM is a polio-like illness that affects about one in a million people in the United States, but the cause remains a mystery. There has been a rising number of cases over the past few years, leaving doctors and researchers baffled and parents worried.

Myelitis means inflammation of the spinal cord, the cable-like structure that transport nerves from the brain to the rest of the body. AFM mainly affects the cord’s gray matter, the part of the spinal cord that carries nerves to the muscles.

More than 90 percent of AFM cases occur in children younger than 18 years. Kids typically have six to 12 viral illnesses per year, and AFM can turn these common infections into a nightmare. For most AFM sufferers, their illness starts with a minor respiratory infection or fever. Then, the muscles in one or more of their limbs become weak and feel like Jell-O. Some of the victims become paralyzed and a few lose the ability to breathe on their own. Two children have died in 2018.

The first AFM cases were reported in California in 2012. Since then, cases have occurred nationwide, mostly clustered in the late summer and fall in 2014, 2016 and 2018. This year has been the worst on record: As of mid-December, 165 confirmed cases from 36 states have been reported to the Centers for Disease Control and Prevention. That compares to 35 cases in 2017 and 149 in 2016. In California, five cases have been confirmed so far this year and 14 more are under investigation.

Part of what makes these outbreaks so worrying is that we still don’t know which germ causes the disease. The CDC has asked doctors to send the agency information about patients with suspected AFM to help them investigate the cause. Several different viruses have been recovered from AFM patients, including enterovirus, coxsackie and West Nile virus, but for most victims no germ has been identified. And no polioviruses have been isolated from patients with this polio-like illness.

Some families of victims think that CDC has not done enough. They think the federal government should provide more resources to study AFM. The families are also calling on the CDC to do more to educate doctors about the disease. Because AFM is rare, few clinicians are familiar with it, so patients are often misdiagnosed with other neurologic diseases. This may expose them to unnecessary therapies, as well as delay the correct diagnosis.

That was exactly what happened for Erin Olivera’s 11-month-old son, Lucian. He was one of the first AFM cases identified in 2012. Olivera, a nurse in Los Angeles, knew something was wrong when Lucian couldn’t use his legs after an ear infection. None of the doctors knew what Lucian had. Eventually, he was diagnosed with AFM by Dr. Keith Van Haren, the neurologist at Stanford University who reported some of the early cases.

“Lucian is good,” Olivera recently told me. “He has a flaccid left leg, but 80 percent of function in his right leg has returned.” He now uses a walker and is a happy, active second grader. Olivera reported she’s grateful that Lucian can do whatever he wants, including the typical mischief of little boys.

Olivera remains concerned that other families like hers aren’t finding the help they need. Frustrated by the lack of awareness among medical providers, she started a Facebook group, called Parents of Children with Polio-like Syndrome/Acute Flaccid Myelitis. The group of more than 500 members supports families dealing with AFM and shares current scientific articles.

Some doctors and researchers have also been critical of the CDC’s response. In a recent issue of JAMA Pediatrics, researchers discussed the challenges in identifying AFM and called on the CDC to increase their efforts. The CDC has an AFM website for doctors and the public outlining the agency’s activities. 

U.S. Sen. Kirstin Gillibrand from New York is among those who think not enough is being done. She has requested $1 billion for AFM research, comparing the need to Ebola and influenza outbreaks.

Without an identified cause, developing new treatments and preventive strategies for AFM has been difficult. About one in five survivors fully recover, but others have persistent problems varying from limb weakness to complete paralysis.

At Children’s Hospital Los Angeles (CHLA), Dr. Mitchel Seruya, a plastic surgeon and director of the Brachial Plexus and Peripheral Nerve Center, developed a technique that allows him to transfer healthy nerves to muscles that have nerves damaged by AFM. He has been performing this surgery since 2016.

“I have operated on 16 kids and one adult,” said Seruya. “So far, everyone has had some improvement in muscle function.” The earlier the surgery is performed after nerve injury, the more likely patients will regain muscle function. 

However, Seruya said people don’t know about nerve surgery so many patients often come much later. He sees the role of media and social media in educating the public as invaluable. Many of his referrals come from Olivera’s Facebook group. “There’s no Plan B to help [damaged nerves],” said Seruya. “So, I’m excited to see kids access the option of nerve transfer.”

Olivera and others from the parent group are slated to testify before the U.S. Senate in February 2019. They hope with telling the stories of their children, more funding will be allocated to investigate AFM and to help the victims.

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Related: What can be done?

The reasons why some individuals are susceptible to AFM are unknown. But there are steps that parents can take to help keep their families healthy. Diligent handwashing is always the mainstay for preventing infections. Keeping everyone up-to-date on recommended vaccinations, including influenza vaccine, helps decrease risk of infections. Children and adults should stay home from school or work when they are ill, especially if they have a fever, to help decrease the spread of germs. If a loved one is ill and not recovering as expected or develops limb weakness, seek prompt medical care.

Health care providers need to stay informed about the evolving approach to diagnose AFM. They should also stay aware of infectious diseases circulating in their communities. In addition, they should notify public health officials about any unusual illnesses among their patients.

Journalists play a critical role in informing the public about emerging diseases. They should stay current on public health issues such as unusual illnesses, including any upticks in the frequency of an illness and emerging pandemics. But such reporting should not exaggerate the potential threat of a disease.