Head neck and nervous system

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 have 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 have been in children around 5 years old.

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, but experts agree that these new spikes in AFM cases have been caused by non-polio enteroviruses such as enterovirus D68 (EV-D68). These viruses typically cause just a mild cold. They are common in late summer and early fall, coinciding with these latest 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.

How to protect your children?

Since we don’t know why some children develop this condition after a common viral respiratory infection and others don’t, right now there are no specific actions to prevent AFM. The best thing you can do to protect your children from getting sick from any virus is to keep up with the basics:

  • Frequent handwashing
  • Staying up to date on routine childhood and adult immunizations
  • Keeping household surfaces clean by sanitizing and disinfecting
  • Keeping your children home from child care or school when they are sick
  • Wearing insect repellent when mosquitos are near

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. Toddlers learning to walk. Pictures on the porch on the first day of school. 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 4th of July 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 with the festivities that we didn’t pause to take his symptoms very 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 diaphragm 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 and tends to peak in the summer of even years. We quickly became experts in all things AFM—seeking out parents who had walked this path before and 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 almost two months. He needed a tracheotomy and ventilator to breathe for him, and a feeding tube to feed him. When he was stable, we were able to transfer him to a rehab facility that specializes in acute inpatient therapy for kids with trachs. Braden worked amazingly hard for almost six months before returning 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 worked so hard in rehab and continued that hard work upon discharge. We’ve spent the past five years doing home therapy, outpatient therapy, and have made several return trips to inpatient therapy for an intense boost.Our lives are entirely different now. We have home nurses caring for him while he sleeps, we’ve learned how to run medical equipment and keep his body safe and healthy. His siblings have a new appreciation for disability and kids who are different. We know more about acute flaccid myelitis than we could have imagined—we know that limb weakness following a cold is a medical emergency and should be taken seriously. Today, 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 Myelytis 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 breath, 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.

Recent U.S. AFM cases were not caused by poliovirus

While AFM is often called a “polio-like illness,” we know that the cases seen in the United States have not been caused by the poliovirus. The last time the poliovirus was found in the United States was in 1993.

Prior to the polio vaccine, which was introduced in 1955, poliovirus leading to paralytic poliomyelitis was very common in the United States. It paralyzed and killed thousands of people every year. Thanks to the vaccine, poliovirus poliiomyelitis has been eliminated in the United States. But it still occurs in other parts of the world, and it would only take one person infected with poliovirus coming from another country to bring the disease back here if we were not protected by vaccination. That’s why routine polio vaccines are still important.

Leave a Reply

Your email address will not be published. Required fields are marked *