When Orville Young ran up to his mother, Elaine Young, to give her the mail, she noticed he was using his non-dominant hand.
Although a seemingly insignificant detail, it made the Minnesota mom stop and think — her then-3-year-old son had developed a cough and a runny nose over the Fourth of July holiday, but she and Orville’s then-6-year-old sister were sick, too, so she assumed that Orville had simply caught their cold. It was not until nearly two weeks later — when everyone else was on the mend and Orville had come down with a fever — that she started to worry.
Young said she was planning to take her son to the doctor the morning of July 12 when she noticed that her right-handed toddler was using his left hand. His right arm, she said, was hanging at his side.
“I said, ‘Hey Buddy, can you lift your other arm?’” Young remembered asking him. She said her son seemed confused. “He said, ‘I can’t.’”
“I was panicked,” she said during a phone interview Monday with The Washington Post. She said she called out to a neighbor, shouting that her son was paralyzed and that she needed someone to watch her daughter while she rushed him to the emergency room.
Then she called her husband, frantic, and told him what happened.
Young said she had a suspicion: acute flaccid myelitis (AFM), an extremely rare but serious condition that has been compared with polio because it, too, can lead to paralysis and, in some cases, death, according to the Centers for Disease Control and Prevention. Young said she had been reading about the condition since it started making headlines in 2014. In July, her son became one of the first children diagnosed in the recent cluster in Minnesota.
Since the CDC began tracking AFM in 2014, 362 cases have been reported in the United States, 38 of which have been reported across 16 states this year. It prompted the Minnesota Department of Health to put out an alert last week, stating that over the past several weeks, six cases have been reported in children across the state.
MDH disease investigators are working aggressively with health care providers to gather information about the cases. The department is also in contact with the Centers for Disease Control and Prevention (CDC) to share information.
For reasons not fully understood, AFM affects mainly children. All recent Minnesota cases have been in children under 10 years old and all were hospitalized. Cases have been reported from the Twin Cities, central Minnesota and northeastern Minnesota.
There was a national uptick in AFM cases in 2014. Disease investigators believe this was linked to an outbreak of a respiratory illness in children that was caused by a virus known as enterovirus D 68 (EVD68). Minnesota saw three AFM cases that year. Since then, we have typically seen less than one case a year.
The CDC states that AFM targets the spinal cord, which can lead to weakness in the muscles. Symptoms can include facial-muscle weakness, seen as droopiness; issues moving the eyes or droopy eyelids; issues swallowing; or slurred speech.
In rare cases, the CDC stated, it can cause numbness, tingling and pain in the extremities, problems urinating, paralysis, respiratory failure, and death.
Marc Patterson, a pediatric neurologist at the Mayo Clinic, told The Post that, like polio, AFM is caused by enteroviruses — a collection of viruses that typically cause mild symptoms, such as stomach problems, or no symptoms at all.
In some patients — possibly those with genetic predispositions — these viruses can invade the nervous system, leading to conditions such as AFM.
Patterson said that there is no vaccine to guard against enteroviruses (except for polioviruses) and that treatment for AFM is simply supportive treatment. After a diagnosis, he said, doctors may prescribe physical therapy to help with recovery and, in some cases, surgery to help repair nerves.
Asked why it seems that AFM cases have been climbing across the United States in recent years, Patterson said that “there may be a number of factors.” He said it could be that the viruses are mutating to be better able to invade their hosts, or it could be that doctors are now better able to recognize the signs.
Young, from Minneapolis, said she had heard about AFM during a 2014 cluster in California, where she and her family lived at the time.
In July, Young said, doctors in the emergency room in Minneapolis told her that her son was probably suffering inflammation from a virus and tried to send them home. But then, she said, the doctors decided to admit the toddler and do an MRI exam. She said the spinal images confirmed her fears: AFM. Her son was given steroids for several days and then released from the hospital, she said.
At its worst, Young said, her son could not move his right shoulder, elbow or lower arm; he would wiggle his fingers, but they were weak.
He also lost muscle control in his torso, leaning to one side because he was unable to hold himself upright, Young said. And because his right leg also had become weak, his parents had to hold him up as he tried to walk.
Since August, Orville, now 4, has been undergoing occupational and physical therapy at Gillette Children’s Specialty Healthcare in St. Paul, and depending on how he recovers, he may need surgery later this year to rewire some nerves so he may regain some muscle function, his mother said. Young said her son is still struggling to use his right arm — but he wants to so badly that he holds items in his right hand and then uses his left arm to move it.
Looking back on it all, Young said that it was “isolating and scary.”
Young said Orville is thought to be the first child diagnosed with AFM in the recent cluster in Minnesota, so she and her husband had no one who could relate to what they were going through.
After the ordeal, she said, she started reaching out to other parents in the state to let them know that the Young family understood.
“We want them to know that they’re not alone,” Young said.