To parents and the press, the “new” disease that is paralyzing kids is a mystery. Media coverage of acute flaccid myelitis (AFM), which causes sudden limb weakness and paralysis in children, has given families the impression that health care providers and public health officials are sitting quietly and helplessly, flummoxed in the face of a disease that threatens children’s health.
That just isn’t so.
Parents have a right to be concerned about this illness. But they should also know that AFM is rare, a one-in-a-million event. It does not spread within families, hospitals, or towns. Although a virus called enterovirus D68, along with other viruses that cause respiratory and diarrheal illness, has been linked to the disease, a single definitive cause hasn’t yet been identified. This isn’t because we aren’t looking: Physicians, scientists, and public health officials are working tirelessly to find answers and the best treatments.
Progress has been made on multiple fronts since 2014, when acute flaccid myelitis first emerged in news headlines and the public consciousness. In the clinical arena, multidisciplinary and multicenter collaborations have been tapping the collective wisdom of experts in infectious disease, neurology, neuroradiology, and rehabilitation, leading to the development of best practices for clinical care. Epidemiologic and research data on the disease are being shared across centers to optimize and standardize the approach to how children afflicted with this condition are cared for at any center across the country.
At Children’s National Health System in Washington, D.C., where we work, specialized programs have long been in place to combat emerging infections and neuroinflammatory disorders. Both of these are relevant to acute flaccid myelitis due to its association with viruses and the nerve inflammation it causes. Thanks to our program and similar programs in place at other pediatric medical centers, evidence-based, standardized clinical pathways now guide the evaluation and treatment of every child suspected to have acute flaccid myelitis.
As with other types of brain and spinal cord injury, the best results often come with early mobilization, so rehabilitation begins early, sometimes even while a child with AFM is in the intensive care unit. Pediatric physical therapists are trained to make children with weak limbs feel like they are champions, whether they are infants, toddlers, or older children.
On the epidemiologic and public health fronts, the Centers for Disease Control and Prevention has standardized and publicized case definitions so children with AFM can be identified. And the CDC recently announced a new task force on acute flaccid myelitis. Its work, which will be coordinated by the Office of the Director, aims to make its first report public in early December.
Multiple medical centers and surveillance networks have begun more intense and broad efforts to look at patterns of specific respiratory and diarrhea virus circulation in communities and have initiated targeted viral surveillance to detect spikes in frequency that might be associated with a subsequent spike in AFM cases.
On the scientific front, investigators have applied advanced molecular techniques, including whole exome genetic sequencing, to better understand enterovirus D68, as well as to exclude other agents that might contribute to AFM.
Investigators have also successfully developed laboratory and animal models of acute flaccid myelitis that closely mimic the human disease. These preclinical models provide a deeper understanding of how AFM injures the spinal cord and have helped identify possible treatment targets. Researchers are also screening off-the-shelf drugs and compounds that might work for these targets, and have already tested and reported on the safety and effectiveness of promising treatments.
Our health system has established a research biobank for blood and spinal fluid samples from children with neuroinflammatory diseases. Studying these specimens could lead to discoveries about AFM and new insights into how it affects individuals. Children’s National is one of the few pediatric hospitals that engineers antiviral treatments tailored to the individual patient that target the exact virus he or she has been infected with. That approach can be potentially lifesaving for the treatment of devastating viral infections that affect patients with defects in their immune system.
The first polio epidemic in the U.S. began in 1894; Franklin Delano Roosevelt got polio in 1921; Dr. Jonas Salk gave his vaccine to his family in 1953; and the vaccine developed by Dr. Albert Sabin was licensed in 1960. That’s a span of 66 years. Sabin’s highly effective and routinely used polio vaccine is often underappreciated for its essential role in safeguarding health and preventing a disease that paralyzed up to 20,000 children a year in the pre-vaccination era.
With modern techniques and multi-center collaborations, we hope that the time frame to solve acute flaccid myelitis will be much shorter than it was for polio. But it won’t occur overnight. Physicians and scientists need public and governmental support to speed progress. To effectively contend with AFM — and the next emerging infectious disease — the nation needs to enhance and intensify existing surveillance networks for viral diseases, expand laboratory investigation models to determine how disease occurs and how to treat it, and help major pediatric hospital networks share data, conduct clinical trials, and optimize care.
Even while all of that is happening, clinicians in our program and similar ones at other pediatric centers across the country apply continually updated information to guide a standardized approach to evaluate and treat children with acute flaccid myelitis and help them achieve the best possible chance of full recovery.
Roberta L. DeBiasi M.D., is chief of the Division of Pediatric Infectious Diseases, Elizabeth M. Wells, M.D., is medical director of the neurosciences unit, and Jessica Carpenter, M.D., is associate professor of pediatrics and neurology, all at Children’s National Health System in Washington, D.C.
Editor’s note: This article was updated to more accurately reflect the Children’s National/NIAID research partnership.