Billy Sticklen is putting his life back together one step at a time.

For a young man who went from a wheelchair to walking in six months, he's taken a lot of steps both physically and emotionally.

"It's all real and it's all him,'' said his mother, Dawn Sticklen, of Joplin. "It's all in increments. He will do something today that he could not do yesterday. You build on that. But it's slow and it's hard. It's only been a few months, but it seems like a lifetime.''

Billy has two floaties under his arms to hold him up as he swims in the heated pool at the Joplin Family Y South. He kicks his legs and pushes out with his arms. He struggles to make his left arm work. His effort pushes him a few inches forward in the swimming lane. But inches add up. By the end of his one-hour session with his trainer, Fred Snavely, he has completed two laps.

When she sees how much effort it takes for him to move in the pool, Dawn Sticklen is reminded of how active her son was before he became ill with a virus that causes summer colds. It is still not clear whether his paralysis was caused by the virus. The research, so far, has been inconclusive.

"He was on the swim team for a year. He was a naturally gifted swimmer,'' she said. "But he did two laps today. That's the first time for that. When he came in today for his therapy, he used the men's locker room for the first time. That's what I mean about increments.''

When asked about Sticklen's progress, Snavely's eyes signal that he is astonished by what Sticklen has managed to achieve through endless rounds of physical therapy.

"He gets discouraged sometimes,'' said Snavely. "But he's an exceptional case.''

Said Billy: "He does push me hard, but in a good way. I just want to get back to my prior state.''

'What the heck is going on?'

Last summer was a typical one for Billy, who is now 14. He played golf and went to the movies with friends. Over the Labor Day weekend, he and his two siblings caught colds.

"I took them to the doctor. He gave them all antibiotics,'' Dawn Sticklen said. "Billy also had an ear infection. He got a stronger prescription. About a week and a half later, Billy started complaining about a headache. I told him to take some Ibuprofen and go to bed. He also had a low-grade fever.''

The next day Billy is taken to their pediatrician. His neck is sore, but there is nothing out of the ordinary. She is told he has a viral infection and that he should be checked the next day to see if his neck felt better. On Tuesday, Sept. 23, his neck is really sore. They visit a general practitioner.

"On Wednesday, Sept. 24, everything is better, but he can't raise his arms above his chest,'' she said.

Thinking he had a pinched nerve, he is taken to a local emergency room. The physician on duty performs a spinal tap. Billy is diagnosed with a viral inflammation. He is transported by ambulance to Children's Mercy Hospital in Kansas City.

"When your nervous systems is affected, it can impact your respiratory system. With it starting in his arms, they were concerned about how fast it was moving and whether his respiratory system would be compromised,'' she said. "By 8:30 p.m. that Wednesday, he's in the ICU at Children's Mercy. When I turn the corner in the ICU, I see this room with all of these medical people in hazmat protective gear. They were wearing the hat, the mask and gloves, and the gowns. Then I see Billy. I think — what the heck is going on?''

Dawn Sticklen would soon learn that her son was not alone and that Children's Mercy had become the treatment epicenter for a regional outbreak of Enterovirus 68, also known as EV-D68. The hospital was seeing hundreds of children with respiratory problems, including a couple that showed signs of paralysis. The virus, one of many viral strains that cause the common cold, was first identified in California in 1962. It belongs to the same genus as poliovirus, an infectious, nerve-damaging pathogen that can cause paralysis.

Epidemiologists suspected EV-D68 in last fall’s outbreak, but tests of spinal fluid showed no signs of the virus, so the cause of the paralysis remained a mystery.

Seeing her son surrounded by people in hazmat suits was scary, but she was reassured by the fact that the medical staff at Children's Mercy was on top of the situation and was ready to handle a case like Billy's.

"These folks were looking for this. They already had two other patients younger than he was who were much less affected. They were on their toes,'' she said. "They had their team on him so fast and they had a protocol in place. They were ready. They treated him as aggressively as they could. That impacted Billy's recovery tenfold.

"We are so thankful for the care we got in Joplin and in Kansas City. We credit them with everything.''

An MRI showed that his entire spinal cord was inflamed when he arrived in Kansas City. His blood was cleansed through a process called plasmapheresis. He was given steroids.

"He grew weaker in his legs. For three days, he was completely out,'' said Dawn Sticklen.

A followup MRI days later showed that his spinal cord was completely clear of inflammation.

Across the country, outbreaks of the virus were occurring in pockets in Colorado and California, and elsewhere. By the end of last summer, the federal Centers for Disease Control and Prevention had identified at least 115 children in 34 states who had developed some kind of unexplained paralysis — now called acute flaccid myelitis. But tests found no evidence of EV-D68 in Billy Sticklen. It was clear to Dr. Mary Anne Jackson, chief of infectious diseases at Children’s Mercy Hospital, that more research was needed and quickly, and that Children's Mercy would be part of it.

New research

A new study, published in Lancet Infectious Diseases, makes a strong link between the virus and the cases of paralysis in children, but it is not the smoking gun.

"The data is limited,'' said Jackson, who has 30 years of experience as an infectious disease epidemiologist. "It presented no data whatsoever that established causality. There is a biologic plausibility, but no data at all that effectively shows causality.''

In the study, scientists at the University of California in San Francisco examined the blood, spinal fluid, stool and respiratory secretions of 48 pediatric patients. Genetic tests were used to look for all potential sources of the disease, ranging from viruses to bacteria to fungi.

Only one viral strain — EV-D68 — showed up consistently in nasal swabs. They also found EV-D68 in one child’s blood, which could indicate that blood is the gateway for the virus to infiltrate the nervous system and cause paralysis, which is the same way the poliovirus works. The research also found that the virus had mutated, and that all of the patients had been exposed to a strain that emerged in 2010.

According to the study, it would be two years before those mutations would surface when some children with baffling cases of paralysis also tested positive for EV-D68. At the time, there were so few cases that doctors could not connect the enterovirus to the cases of paralysis. Before 2012, EV-D68 had never been linked to anything other than respiratory illness.

Jackson said the evidence for a mutated virus is not that strong. She said a study by Children's Mercy of 500 blood samples from the Kansas City area showed that 100 percent of the individuals had antibodies to the virus.

"This is clearly not a new virus,'' she said. "Last year's outbreak was the largest ever reported. It started in July and ended in October. Millions of children were exposed to EV-D68. Hundreds were hospitalized, many of them with underlying conditions such as asthma. And we have 100 or so cases with myelitis (paralysis). It's a suspect, but certainly not proof.''

It is possible that EV-D68 has been causing rare cases of paralysis all along, but the scope of the outbreak in 2014 brought attention to the cases of myelitis that developed.

Studies are under way at medical centers across the country, including Children's Mercy, to examine thousands of old MRIs of children with an eye toward determining the background rate for the disease, and whether something might have been overlooked in the past.

"We're looking at every MRI of the spine in the last decade,'' she said. "We will eliminate tumors and trauma to see if we have seen this before.''

Another study is looking at spinal fluids and how they might be used to establish causality. Another is looking for the genetic markers for children who might be at risk.

"We have lots of lines of inquiry now, but we still don't know the role of EV-D68,'' she said. "It's still a mystery.''

The research is in full swing because there is a strong possibility EV-D68 could return this summer. It is not clear whether exposure to the virus last summer will offer a measure of immunity to children this summer.

"Will this cause children to be sick again? Yes,'' said Jackson. "We don't have a vaccine or anti-virals to treat it.''

No roadmap for recovery

The Sticklens, with the help of Snavely and physical therapists with Freeman Health System, are breaking new ground. There is no guide for them to follow to help Billy recover from his illness. His recovery could become an example for others to follow.

In fact, the CDC is putting together a long-term study to track the 115 or so children it has identified so far with the condition — how their paralysis progresses, whether they improve over time, which treatments work.

"This is similar to therapy for a stroke injury,'' said Dawn Sticklen. "Aqua therapy provides an anti-gravity environment and that has helped his recovery in that his muscles are working. But this is uncharted territory. We just hope that with his young age this will work.''

About three weeks ago, Billy felt soreness for the first time.

Said Snavely: "It means his muscles are growing. It means his nerves are regrowing. It means it's working.''

But how far he can go remains to be seen. The progress suggests more is possible. He was in a wheelchair at Christmas. He transitioned from a walker to a cane at the end of January. To be closer to him while he went through two months of rehabilitation in Kansas City, Billy's parents, Charles and Dawn Sticklen, rented an apartment there. He came home on Feb. 1.

"He is a normal kid. He has his good days and his bad days, but he has a good frame of mind about everything,'' said Dawn Sticklen. "They treated him well in Kansas City. They caught onto his personality.''

Jackson said, "He was a wonderful patient. He kept his sense of humor.''

When last year's Ebola cases in the United States were making headlines and the kids with a polio-like paralysis were not, he quipped: "Ebola stole all of our thunder.''

"What impressed me is his attitude,'' said his mother. "His willingness to be honest with me. There is an innate trait he possesses that has helped him cope with all of this.''

He plans to return to school in a couple of months. He's nervous about that. He's regained 15 of the 40 pounds he has lost. He went through a growth spurt of three inches in the hospital and that exaggerated his weight loss. To regain his weight, he has been loading up on carbs and ice cream. But he can only eat so much because his stomach has shrunk.

"It will be awkward, but I'm ready. I've got a best friend I've been hanging out with,'' he said. "We walked 1.7 miles to the Starbucks and back. It was a challenge. My legs are getting stronger and stronger, but my arms are not. I'm sure my arms would be stronger if I could only use them to walk.''

What are the symptoms of EV-D68 infection?

EV-D68 can cause mild to severe respiratory illness. Mild symptoms may include runny nose, sneezing, cough and body and muscle aches. Severe symptoms may include wheezing and difficulty breathing. People with respiratory illness should contact their doctor if they are having difficulty breathing or if their symptoms are getting worse.

How does the virus spread?

Since EV-D68 causes respiratory illness, the virus can be found in an infected person’s respiratory secretions, such as saliva, nasal mucus or sputum. EV-D68 likely spreads from person to person when an infected person coughs, sneezes or touches a surface that is then touched by others.

What time of the year are people most likely to get infected?

In the United States, people are more likely to get infected with enteroviruses in the summer and fall.

How common is EV-D68 in the United States?

A mix of enteroviruses circulates every year, and different types of enteroviruses can be common in different years. Small numbers of EV-D68 have been reported regularly to the CDC since 1987. However, during 2014 the number of people reported with confirmed EV-D68 infection was much greater than that reported in previous years. It can’t be predicted whether EV-D68 will be a common type of enterovirus detected in future seasons.

What happened with EV-D68 in 2014?

In 2014, the United States experienced a nationwide outbreak of EV-D68 associated with severe respiratory illness. From mid-August 2014 to Jan. 15, 2015, CDC or state public health laboratories confirmed a total of 1,153 people in 49 states and the District of Columbia with respiratory illness caused by EV-D68. Almost all of the confirmed cases were among children, many whom had asthma or a history of wheezing. Additionally, there were likely millions of mild EV-D68 infections for which people did not seek medical treatment and/or get tested.

CDC received about 2,600 specimens for enterovirus lab testing during 2014, which is substantially more than usual. About 36 percent of those tested positive for EV-D68. About 33 percent tested positive for an enterovirus or rhinovirus other than EV-D68.

EV-D68 was detected in specimens from 14 patients who died and had samples submitted for testing.

Who is at risk?

In general, infants, children and teenagers are most likely to get infected with enteroviruses and become ill. That's because they do not yet have immunity (protection) from previous exposures to these viruses. It is believed this is also true for EV-D68. Adults can get infected with enteroviruses, but they are more likely to have no symptoms or mild symptoms.

What are the treatments?

There is no specific treatment for people with respiratory illness caused by EV-D68. There are no antiviral medications currently available for people who become infected with EV-D68.

Source: CDC

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