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LOS ANGELES – LaMay Axton watched in horror as his granddaughter Cambria stumbled over the roof of the kitchen of their house. The 2-year-old tried to stand back up, but could not.
"Her little legacy just fell like a marionette doll," said Axton, who lives in Menifee, Calif.
Within hours, Cambria was unable to move her arms or her legs. Her diaphragm stopped working, so she needed machines to breathe. In September 2016, doctors determined that they had an unexplained condition called acute flaccid myelitis.
In 2014, more than 100 children in the US suddenly became paralyzed and the condition, which closely resembled polio. In 2016, another outbreak paralyzed even more children. Two years later, the devastating illness is back.
New Hampshire health officials said this week that they are investigating a suspected case of the disease in Rockingham County. The health department in Cheshire County in 2016.
Some 62 cases of acute flaccid myelitis, or AFM, have been confirmed in 2018, and 65 more possible cases are being investigated. Experts at the U.S. Centers for Disease Control and Prevention say they still do not know what causes the syndrome.
But some parents and doctors say the CDC is not doing enough to address the malady. Many doctors believe that paralysis is caused by the CDC's decision to continue to call AFM to "mystery" illness is wrongly stoking fears among parents and also stalling efforts to develop prevention strategies and treatments.
"Said Priya Duggal, an epidemiologist at the Johns Hopkins Bloomberg School of Public Health who AFM studies," It's really hard to see these kids and the same way. "And it's scary to think that it might be the same in 2020, unless we make some changes now."
In 2014, children can not move an arm or a leg. Standard treatments did not seem to work, leaving doctors puzzled.
"We were not really sure what we were looking at at first," said Dr. Emmanuelle Tiongson, a pediatric neurologist at Los Angeles Children's Hospital who treated six AFM patients in 2014. "It's not something we had seen vaccinated against polio."
Doctors coined a name for the condition – "acute flaccid" for the sudden and total paralysis and "myelitis" for the part of the spinal cord involved in muscle movement.
It was not poliovirus, tests showed. But many patients' lab tests have come back positive for enterovirus D-68, a cousin of poliovirus that was known to cause only a cold – though expert suspected it could have more severe consequences.
Studies confirmed that an enterovirus D-68 outbreak in 2014 lined up with the surge in paralysis cases. One study found that injecting mice with the virus caused the type of paralysis seen in children.
"I think people like me continue to believe that the majority of these infections are linked to enterovirus D-68 infection," said Dr. Kenneth Tyler, a neurologist at the University of Colorado who led the mouse study. "The CDC has been, I think, exceedingly cautious."
AFM patients had had enteroviruses in their systems, many did not. CDC experts say they are considering a wide range of possible causes, including other viruses, autoimmune conditions and environmental toxins.
"Dr. Nancy Meissonnier, director of the CDC 's National Center for Immunization and Respiratory Diseases, told reporters this week," This is a mystery so far and we have not solved it yet, so we are thinking broadly.
AFM, but emphasized the condition remains rare -386 cases in the United States since 2014.
Dr. Roberta DeBiasi, Chief of the Division of Pediatric Infectious Disease for Children's National in Washington, D.C., said officials do not yet know if AFM is due to an enterovirus infection. Scientists would need to find the virus in the spinal fluid of affected children – but they have not yet. Some children with AFM have tested positive for completely different viruses.
"I do not think it would be possible for anyone to say with certainty that it's due to the enterovirus," she said.
Because experts are unsure what causes the disease, the CDC recommends a wide range of precautions, including hand washing, staying up to date on vaccinations and using insect repellent to ward off mosquito bites.
But many caregivers feel frustrated by a lack of answers in such a serious illness. There are essentially no medical treatments that work for these patients.
Two years after Cambria first got sick, one of her arms and one of her legs is still paralyzed. She is just now relearning how to walk.
"There is nothing pretty about AFM," said Axton, her grandmother. "It's much like polio and the iron lungs and all of that, but it's 2018 and we just deserve answers."
Riley Bove's, Luca, was diagnosed with AFM in 2014 when he was 4 years old.
Four years later, Luca's right shoulder remains paralyzed, so he has switched to writing and eating with his hand. He wears a neck brace to protect his weakened neck from dangerously flopping backward and causing a spinal injury.
"The neck is a constant safety issue, so birthday parties – no bouncy castle, can not play soccer with their friends unless they're supervised," said Bove, who is a neurologist at the University of California, San Francisco. "He's 8, but he's going to have a long, long time."
The average patient age is 4, though doctors do not know why that age group is particularly vulnerable. Experts also do not understand why the outbreaks seem to hit every other year.
Still, Dr. Kevin Messacar, a pediatric infectious disease specialist at Children's Hospital Colorado in Aurora, said the "label of 'mystery illness' is a little misleading."
In Colorado, Messacar has seen acute flaccid myelitis patients with enterovirus D-68 and others with a related virus, enterovirus A71. He hopes the CDC will focus on an enterovirus vaccine, given the serious consequences of AFM.
"The vast majority of children who have this, unfortunately, long-term paralysis and disability. How do we prevent this if it does come back? God forbid, come back in a bigger way? "He said.
Parents of children with AFM often remembered that the whole family had caught a cold, but only one child went on to develop AFM. Duggal, the Johns Hopkins researcher, is investigating whether the child has the most severe consequences.
Before it was published in the United States in the 1970s, poliovirus also gave rise to symptoms of each year, while a small fraction developed characteristic paralysis, suggesting a genetic factor at play.
"In some ways, it does not matter which virus it is – something is circulating that makes people sick – but what makes people susceptible to paralysis is what's important," Duggal said.
Carlene Burns' 4-year-old daughter, Maipele, was diagnosed with AFM in 2016. Last year, she underwent surgery at Children's Hospital Los Angeles to try to improve function in her paralyzed right arm.
Maipele is one of 15 children who have been operated on by surgeon Dr. Mitchel Seruya. He connects nerves from other parts of the body to the paralyzed limbs.
Now, mother can bend her elbow and her mother says.
"It's not going to reverse everything," Seruya said. "But if it's somebody with an isolated limb, like just an arm or just a leg, we can do some good with that and bring it back as much as possible."
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