Feb. 9, 2015 — Allen Howe doesn’t need his walker much anymore.
That’s the good news.
The bad news: Doctors don’t know if the 5-year-old will ever fully recover from the paralysis that began last fall, which eventually affected 80% of his young body. He couldn’t walk, lift his arms, or even swallow. A tube fed him.
“It was very frightening. Every day I asked questions at the hospital and the only answer was, ‘We don’t know,’” said Allen’s mother, Teresa Howe, of Coldwater, MI.
“It was so new they didn’t know.”
Doctors traced Allen’s paralysis to enterovirus D68 (EV-D68), a respiratory illness that, according to the CDC, may be linked to 111 children in 34 states suffering from a paralysis called acute flaccid myelitis. Such an outbreak had never been seen before, and scientists are racing to understand the condition and develop a vaccine, even as many worry about another outbreak in 2015.
Making the situation even more frightening for families is the fact that nobody knows if, like with polio, the damage will be permanent.
Only one of the 111 children has fully recovered.
No Rhyme or Reason
A few months ago, Allen was in a hospital bed, writhing from pain neither he nor his doctors fully understood.
“He was just screaming, ‘Help me, Mom,’” Howe says.
It’s going to be OK, she assured her son through her tears.
“No,” he replied. “It’s not.”
A few generations ago, doctors may have suspected polio. That virus left 35,000 people a year, usually children, permanently crippled in the late 1940s and early 1950s. The development of a vaccine allowed public health officials to declare the U.S. polio-free in 1979.
But there are more than 100 strains of non-polio enteroviruses, including enterovirus D68. There have been isolated outbreaks of EV-D68 around the globe and in the U.S. since 2008.
But the outbreak that began in August 2014 eclipsed them all. Health officials have confirmed 1,153 cases in the U.S. through mid-January 2015. Nearly all of them were children, and many of them already had asthma or breathing problems. EV-D68 is primarily a respiratory illness, and its symptoms are similar to the common cold or flu. Health officials say thousands, or even millions, of cases were likely never reported.
Allen had never had breathing problems before. When he began to have pain in his belly and neck stiffness last fall, his mother gave little thought to the minor cold he and his little sister had recently weathered.
Then he couldn’t lift his left arm all the way. Doctors thought he might have a dislocated shoulder. Then he couldn’t move his arm at all. Then his leg wouldn’t respond. Then came the pain.
Exactly how the virus was causing paralysis in these children is a mystery. Equally troubling is that there seemed to be no rhyme or reason as to which kids had paralysis.
“Enterovirus 68 was so widespread in Michigan that it was a pattern where there did not seem to be a common source of exposure for these children who were affected with this paralysis,” says Matthew Davis, MD, Michigan’s chief medical executive.
With similar reports coming in from all over the country, the CDC issued a public health alert and developed a quicker test for EV-D68.
Still, with so little information, doctors had to rely on trial-and-error. It remains unclear which treatments lead to the highest likelihood of recovery, Davis says.
For Allen, nerve medicine began to improve his paralysis within a couple of days, says his mother, though he remained hospitalized for a month. Painful physical therapy slowly returned motion to his numb limbs.
’A Wide Spectrum of Weakness’
At first, doctors at Children’s Hospital Colorado in Aurora were just as mystified as those elsewhere when they started seeing children with paralysis.
“It really was a wide spectrum of weakness. Some of the children had very mild, hardly discernible weakness that only the child could notice,” said Kevin Messacar, MD, an infectious disease researcher. “Others had near-complete paralysis, meaning they couldn’t move their arms or legs at all.”
Five of 12 tested positive for EV-D68, though Messacar said all had recently had a respiratory illness. The pain and paralysis had come on as long as a week after the children had recovered. Tests showed 10 of the children had spinal cord damage.
Doctors tried antiviral drugs, intravenous steroids, immune therapy, and other treatments. But the only thing that seemed to help was time, as the children gradually gained more limb movement with therapy. All have since gone home from the hospital, although effects such as limb weakness and trouble walking linger.
As in other states, the Colorado researchers could find no commonality among the children to help explain why they suffered paralysis when so many others afflicted with EV-D68 did not.
Finding that answer may be key as scientists work toward a vaccine. CDC spokeswoman Sarah Poser says that agency is compiling data on EV-D68-related paralysis from around the country for medical journals. The CDC is also studying spinal tests around the country to look for unreported cases of similar illness. A follow-up study is planned in Colorado of EV-D68 patients who developed paralysis vs. those who did not.
Meanwhile, researchers at Johns Hopkins University are planning a study of children who suffered EV-D68-related paralysis and their siblings who were exposed but did not become paralyzed.
Vaccines can take years to develop, and there is little hope for one being in place if the virus returns with enterovirus season this August. The polio vaccine appears to offer no assistance. Eleven of the 12 children in the Colorado study had been vaccinated for polio.
’You Are Strong’
Back in Michigan, Allen is getting around better, though his leg is unpredictable and sometimes gives out under him. He can raise his left arm halfway up. He is sometimes upset that he isn’t as strong as his younger brother — or even his 1-year-old sister.
“I say, ‘You went through a lot. You are strong,’” said his mother.
What she can’t assure him is that he’ll ever be back to how he was. Nobody knows how long the paralysis associated with EV-D68 will last, or if it is permanent.
Though they have all gone home, all of the children in the Colorado study continue to suffer effects of the paralysis and to go through physical therapy, Messacar says. Nationwide, the CDC reports that two-thirds of patients have recovered somewhat, while the rest have shown no improvement. Only one child has fully recovered.
Says Messacar, “Because it’s a new condition, I don’t think it’s fair to say we know the prognosis. I think it’s something we’re going to watch very closely over time.”
Davis, the Michigan doctor, urges parents to teach their kids how to avoid germs, including hand-washing and staying away from sick people.
“Going forward we’re at the same risk of having an outbreak like we did in 2014,” he said. “What I hope we can improve is our ability to work with parents to recognize symptoms of weakness as soon as possible in order to implement care as soon after the symptoms develop as possible.”