The New York Times article on Acute Flaccid Myelitis (AFM) is frightening to both doctors and parents.
Although AFM is rare, pediatric missed diagnosis of potentially serious disease is not rare. This is because of the needle in a haystack problem in pediatrics. See The Pediatric Needle In A Haystack Problem – Links To And Excerpts From Articles On Abnormal Pediatric Vital Signs In The ED
Posted on February 18, 2020 by Tom Wade MD:
The big thing I tell all my parents when I discharge their child is, “If you think something might be going on that needs to be rechecked, don’t wait. It is not your job to prove your child is sick. It is our job to prove she’s not.”
See also Parents: Trust Your Instincts – Help From The University Of Iowa Stead Family Children’s Hospital – Mother Suspects Hirschsprung Disease
Posted on December 28, 2018 by Tom Wade MD.
In this post I link to and excerpt from the excellent New York Times article, Experts Warn A Rare Pediatric Condition May Re-emerge This Fall. By Emma Morris, Sept 23, 2020.
There’s no cure for acute flaccid myelitis*, or A.F.M., but early detection is key for better outcomes
For physicians, the following two resources are good quick reviews:
*Acute Flaccid Myelitis: A Clinical Review from Medscape [Olwen C. Murphy, MBBCh, MRCPI; Carlos A. Pardo, MD DISCLOSURES Semin Neurol. 2020;40(2):211-218]
*5 Things to Know About Acute Flaccid Myelitis
Janell A. Routh, MD, MHS DISCLOSURESOctober 15, 2019
Here are excerpts from the NYT article:
In the fall of 2018, all three of Mallory Bradley’s kids became sick. Her sons, aged 8 and 2, ran low fevers for a couple of days, but were soon back to normal, running around their new house in Norfolk, Virginia. Then Ryleigh, Bradley’s 3-year-old daughter, spiked a high fever, and oddly, seemed floppy and unsteady. A kid that usually ran with confidence was suddenly listing and weaving across the playroom — Bradley knew something was wrong.
Since they had just moved, the family didn’t yet have a primary care physician. Bradley’s husband was deployed overseas with the Navy, so on a hot Thursday in September, she loaded all three kids into the van and went to a local children’s emergency room. Doctors there told her not to worry. “The virus just needs to run its course,” she remembers them telling her. They gave Ryleigh some IV fluids and sent her home.
The next morning, Ryleigh still had a fever, but that wasn’t all. “Her eyes were crossed, and she was walking like she was completely drunk,” Bradley said. “She was all over the place swerving.”
The family went back to the E.R. but, she was told not to worry. The balance issues were chalked up to the fever. “My oldest was 8,” Bradley said. “I know I only had eight years of being a mom under my belt, but I had never seen anything like this. I was pretty upset and I told them I was upset, that they weren’t giving me any answers.” Bradley went to a different E.R. that Friday evening, but was again sent home
This time, Bradley wasn’t told to let the virus run its course.
Eventually, Ryleigh was diagnosed with acute flaccid myelitis, or A.F.M., a rare neurological disease that follows an infection with a common virus from the enterovirus family. Most kids get sick with enteroviruses at some point; a tiny fraction go on to develop A.F.M. “Everybody else recovers, but the A.F.M. kid has this horrible catastrophe that affects the rest of their life,” said Emily Erbelding, director of the Division of Microbiology and Infectious Diseases at the National Institutes of Health.
The condition affects the cells of the spinal cord, causing paralysis. Some recovery is possible — at her most affected, Ryleigh could only move her eyes, and today she can walk with assistance, speak and move both arms — but few kids see a full recovery.
See the rest of the article for further discussion of Acute Flaccid Myelitis.