The rare condition, which affects the spinal cord and can cause rapid-onset paralysis, has historically followed a pattern of a spike in cases every other year since the medical community started tracking it in 2014. In 2018, the Centers for Disease Control and Prevention (CDC) reported 223 cases—the highest amount on record. Given that 2020 is an even year, cases of AFM are already expected to be high, but in the midst of a pandemic and the upcoming flu and cold season, medical experts are warning parents to be extra cautious and alert during the fall months.
“The symptoms of AFM are not subtle,” Yvonne Maldonado, MD, division chief of pediatric infectious diseases at Stanford’s Lucile Packard Children’s Hospital, tells Verywell. “It can cause a sudden onset of paralysis. If your child complains of their arm or leg being weak, then that is a tip-off and you should call the doctor.”
The CDC reports that the peak months for AFM are August through November, which correlate with the annual flu and cold season. Symptoms might include:
Recent respiratory or viral illnessFeverNeck and back painSudden limb weaknessTrouble swallowing
What Is AFM?
AFM is a very rare but serious neurological condition that intrudes the gray matter of the spinal cord, which triggers the muscles and reflexes in the body to become weak. The condition primarily affects children between the ages of 3 and 6 who have recently experienced a viral respiratory illness. According to the CDC, many children diagnosed with AFM also have a history of asthma.
The exact cause of AFM has been a mystery to the medical community since first cases were reported six years ago. Researchers were able to link the enterovirus EV-D68 to several AFM cases, but have not been able to pinpoint the exact cause.
“AFM appears to be caused by a viral infection,” says Maldonado, who is also a member of the CDC AFM Task Force. “There are a number of enteroviruses, but it has been difficult to isolate the exact cause.”
LaMay Ann Schlichting Axton, whose granddaughter Cami was diagnosed with AFM in 2016 at 2 years old, said it took her longer than normal to recover from symptoms of the common cold. She was diagnosed with bronchitis.
“One day she was running around and jumping on the couch, and something told me to sit down and watch Cami—it was pressing on my heart—then her little legs fell from under her,” Axton tells Verywell. Axton immediately took Cami to the local emergency room, where her paralysis symptoms quickly moved to her diaphragm. As a result, Cami was transferred to a nearby children’s hospital, intubated, and put on a ventilator. She remained in a medically-induced coma for three weeks, fighting for her life.
The most critical aspect of treating AFM is stabilizing the initial phase of the condition, Rachel Scott, board member of the Acute Flaccid Myelitis Foundation, tells Verywell. Scott is also mother to Braden, who was diagnosed with AFM when he was 5 years old. She says that her son received intravenous immunoglobulin (IVIG) and steroids to stabilize him after arriving at the emergency room with the initial stages of a paralyzed diaphragm. He was also placed on a ventilator to help him breathe and a gastrointestinal tube (G-Tube) to supply him with nutrients.
How AFM Is Diagnosed
Medical experts and researchers have established several tools that help diagnose AFM. According to the CDC, the following exams are completed to help identify the condition:
“Washing your hands and avoiding close contact with others can help prevent AFM,” Maldonado says, indicating that may be the case in 2020. “So far, a spike hasn’t happened this year and we are not sure why.”
Clinical criteria exam: This includes a physical exam, nervous system exam, and a complete medical history report. Magnetic resonance imaging (MRI): Imaging examines the brain and spinal cord. Laboratory tests: These include a stool sample and a spinal fluid sample to screen for evidence of a virus. Nerve conduction: Impulses are sent along a nerve fiber to test for weakness.
Road to Recovery
Recovery from AFM can be a long process depending on the severity of the case and the body parts affected. After discharge from the hospital, many patients rely on an interdisciplinary team of doctors and specialists, which might include a neurologist, gastroenterologist, physical therapist, and occupational therapist to help with recovery.
“Many children recover, but a subset will have long-term paralysis or other symptoms,” Maldonado says.
It has been a long road for Cami and Braden, who both have had extreme cases of AFM. According to Axton, after spending three months in the pediatric intensive care unit (PICU), Cami was discharged and remained dependent on a ventilator for a year. AFM has left her with asymmetrical paralysis in her left arm and incomplete quadriplegia. She depends on a KAFO brace to walk.
Cami also suffers from gastroparesis, and was dependent on a G-tube for nutrition early in her recovery because she was unable to swallow. “This disease process is like no other,” Axton says. “Her condition is likely to last a lifetime, but I never give up hope.”
Braden has also had a slow but steady recovery process. Scott says he is able to walk on his own, but also relies on the assistance of a power chair. Both Cami and Braden attend school in the regular classroom, and AFM has not affected their ability to learn. Both students have a full-time nurse that is with them during school hours to assist with safety and any medical emergencies that might arise.
