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AFM: What We Know About This Paralyzing Illness

Acute flaccid myelitis (AFM) is a rare but serious illness that can cause sudden weakness of muscles, loss of reflexes, and paralysis. Three spikes in cases of AFM occurred in the United States—in late summer to early fall of 2014, 2016, and 2018—with over 660 confirmed cases. Most of the AFM cases in these outbreaks were in children around 5 years old. (See "How a Summer Cold Led to a Rare AFM Diagnosis," below.)

While the condition sounds frightening, keep in mind that AFM is very rare. The chances of a child getting it are less than one in a million.

What causes AFM?

Several viruses (for example, West Nile virus) are known to cause AFM. New spikes in AFM cases have been caused by non-polio enteroviruses such as enterovirus D68 (EV-D68). These viruses typically cause respiratory symptoms, including asthma-like illnesses. They are common in late summer and early fall, coinciding with these AFM spikes. In 2014, there was a rise in AFM cases during an EV-D68 outbreak. Since that 2014 outbreak, enteroviruses have been the most commonly identified viruses in lab samples from patients who had AFM. A recent uptick in children with respiratory illnesses due to rhinoviruses and enteroviruses, including EV-D68, was reported by the Centers for Disease Control and Prevention (CDC).

Can AFM be prevented?

We do not know why some children develop this condition after a common viral respiratory infection and others don't. However, parents can remind children to follow these simple steps to help avoid illness:

Immediately seek medical care if your child develops sudden arm or leg weakness, a droopy face, or has difficulty swallowing or speaking.

Parent to ParentHow a Summer Cold Led to Rare AFM Diagnosis

By Rachel Scott

We all have a picture in our minds of how our lives as a family will unfold. But lives can be derailed in a thousand different ways. For us, it was when our perfectly healthy 5-year-old son, Braden, was suddenly paralyzed over the July 4 holiday in 2016.

He'd had a cold the week prior. On the 4th he was lethargic and couldn't keep food down. We were so busy we didn't pause to take his symptoms seriously. We now know that his swallowing muscles were being paralyzed—and that paralysis was gradually spreading through his body. Five days later, the paralysis reached his diaphraghm and he stopped breathing. He was intubated and life-flighted to a major hospital. It was there that we got the diagnosis of acute flaccid myelitis.

We had never heard of acute flaccid myelitis (AFM) before Braden's diagnosis—and none of his doctors had ever treated a child with AFM. We learned that AFM is a rare, polio-like disease that causes limb weakness and paralysis following a cold. We soon sought out parents for advice and began advocating for treatments and therapy. It felt like we were caught in a whirlwind and dropped into a new life—new setting, new language, new everything.

Braden remained in the pediatric intensive care unit (PICU) for nearly two months. He needed a tracheotomy and ventilator to breathe for him, and a feeding tube to feed him. When he was stable, he was transferred to a rehab facility. For nearly six months, Braden worked amazingly hard before he could return home.

Therapy was—and continues to be—the key to Braden's recovery. While in rehab, we learned how to care for his trach and feeding tube and developed a home therapy routine for him. He continued to work hard upon discharge. Home therapy, outpatient therapy, and several return trips to inpatient therapy have provided an intense boost.

Our lives were changed. Home nurses were brought in to care for him while he slept; we learned how to run medical equipment and keep his body safe and healthy. His siblings gained a new appreciation for disability and kids who are different. We know more about acute flaccid myelitis than we could have imagined—especially that limb weakness following a cold is a medical emergency and should be taken seriously. Now, Braden is thriving and living his best life—even if that life doesn't match the picture we once had.

Rachel Scott is founder of the Accute Flaccid Myeltis Association and author of Alfredo's Magic Wand: A Children's Book About Acute Flaccid Myelitis. She's pictured above with her family, including Braden (lower left).

Is there a treatment for AFM?

There is no specific treatment for AFM. However, doctors who specialize in neurologic and infectious diseases will tailor a treatment plan and recommend certain interventions, depending on the case. During the acute phase of the illness, most of the treatment is supportive—helping the child to breathe, for example. Many children with AFM have also benefited from early physical and occupational therapy.

A special AFM Physician Consult and Support Portal was created to connect medical professionals with neurologists specializing in AFM and other rare, complex neuro-immune disorders.

Polio vaccines remain important—they prevent paralysis.

Prior to the polio vaccine, which was introduced in 1955, poliovirus was very common in the United States. It paralyzed and killed thousands every year. Thanks to the vaccine, poliovirus poliomyelitis has become rare in the United States. Recently, a case of poliomyelitis was reported in New York and poliovirus was detected in sewage there. It only takes one person infected with poliovirus to spread the disease if we are not protected by vaccination. That's why routine polio vaccines are still important.

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American Academy of Pediatrics (Copyright © 2022)
The information contained on this Web site should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.
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