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Texas boy and family confront paralyzing illness

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Monday, September 14, 2015

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DALLAS - From the cool shade of the dugout, Marcus Robinson watched his son Kingston come to bat for the Horned Frogs.
Kingston, 4, aimed his bat at the T–ball and connected, powering a hit to midfield. The parents and siblings who filled the bleachers cheered.

"I'm still amazed he's out here doing anything," said Marcus, shaking his head.

One year ago, Kingston lost his ability to walk, stand and raise his right arm after coming down with a sore throat and fever. He spent 20 days in the hospital. At one point, he told his parents he thought he'd never walk again and his father, too, began to lose hope.

Kingston is one of more than 115 children in 34 states who became paralyzed last year after developing what seemed like an ordinary cold. Experts at the U.S. Centers for Disease Control and Prevention are still unsure of what caused the illnesses, which peaked last September before falling off.

The cases coincided with the largest-ever outbreak of enterovirus D68, a virus that is related to polio but typically causes only flu-like symptoms. The agency is tracking cases like Kings-ton's and bracing for the possibility of a new spike in paralysis cases this summer and fall, when enterovirus D68 usually makes its rounds.

A FRIGHTENING CHANGE
On June 27, 2014, Kingston's mother, Courtney, took him to the doctor for a fever and achy throat. His pediatrician diagnosed strep throat and bronchiolitis, an inflammation of the airways leading to the lungs, and put him on antibiotics.
A few days later, his fever came down, but he still felt unwell. He seemed unsteady on his feet, tripping and falling.
On July 1, Marcus was in Kingston's room changing him into pajamas. When he tried to pull off Kingston's shirt, his son couldn't raise his right arm.

Aftercare clinic doctors said he probably had a muscle tear, and placed his arm in a sling. Courtney took him to his regular doctor the next day, where his symptoms grew worse. Kingston, who had been standing, lost his balance and fell. The doctor told Courtney to take Kingston to the emergency room at Children's Medical Center Plano. Initial X-rays and blood tests came back negative, so the Plano team transferred him to Children's Medical Center Dallas.

In Dallas, Kingston could walk, though he was weak. Doctors said they were trying to rule out childhood stroke. It would be 24 more hours before they would have a better picture.

A 'POLIO-LIKE ILLNESS'
As early as 2013, doctors at Children's Medical Center Dallas had noticed unusual symptoms in the patients they were seeing.
Dr. Benjamin Greenberg, a neurologist at Children's Health and at UT Southwestern Medical Center, is an expert on rare forms of paralysis. Patients with muscle weakness fly from across North America to see him.

He noticed that a small but growing group of patients were coming in with limbs that were floppy—not stiff as in many cases of paralysis—and MRI scans of their spines showed a pattern.

Greenberg specializes in transverse myelitis, a type of spinal cord inflammation, and runs one of only two clinics in the country dedicated to the condition. Transverse myelitis is exceedingly rare, affecting between 1 and 8 people out of a million. Officially, it is an "orphan disease," one with so few patients that drumming up research funding and attracting scientists to the field is a challenge.

Transverse myelitis— myelitis means inflammation of the spinal cord—has traditionally been thought to damage only the cord's white matter, which insulates the nerves traveling down the spinal cord from the brain. Doctors believe it sets in when a person's immune system mistakenly attacks a patient's body, possibly in response to an infection.

But the newer group of patients Greenberg had started noticing had damage to a different part of their cord: the gray matter, which carries signals from the spinal cord to the muscles.

Physicians in other states were noticing a similar phenomenon. And unlike patients with transverse myelitis, few of these newer patients improved with treatment.

A GRAY MATTER DIAGNOSIS
On July 3, 2014, doctors performed an MRI scan on Kingston and took a sample of his spinal fluid and found that gray matter in his spinal cord was inflamed, disrupting signals to his muscles.

Following the protocol for transverse myelitis, the condition most closely related to Kingston's that physicians knew how to treat, doctors started Kingston on a five-day course of steroids to ease the inflammation. He would need physical therapy, too.
After five days of steroids, Greenberg came to Kingston's hospital room. The therapy had failed, but Greenberg remained optimistic about Kingston's prospects.

The group decided on a new course of treatment known as IVIG, or intravenous immunoglobulin. It floods the patient with "good" antibodies from donors. The healthy antibodies are thought to block the action of "bad" antibodies, rogue agents of the immune system that attack a patient's own body.

Soon, Kingston turned a corner.

WATCHING FOR WEAKNESS
In September 2014, the CDC issued a bulletin warning physicians about a spike in limb weakness among children. While it's typical for a handful of patients per year to develop unexplained limb weakness, doctors were seeing far more cases.

The CDC initially called the new disorder acute flaccid paralysis, then changed it to acute flaccid myelitis and asked doctors to report any new cases to the agency. By April, the CDC had counted 118 cases across the U.S.

In a statement to The Dallas Morning News, the CDC said the cause of AFM remains unknown but there is a strong correlation between AFM and the outbreak of enterovirus D68, which sickened more than 1,100 children in 49 states last year.

A study published in June in the journal Lancet Infectious Diseases found that 12 out of 25 patients diagnosed with AFM in California and Colorado between January 2012 and November 2014 had D68 in their nasal passages.

For now, the CDC believes the outbreak of acute flaccid myelitis is over.

"Our current data suggest that cases of childhood AFM have returned to 'expected' rates," the CDC said. "We are maintaining vigilance for another possible 'spike' in cases in the summer/fall of 2015, however, in order to maintain the highest level of public health preparedness for this devastating illness."

CHASING NORMAL
Back home last August, the recovery continued. After a leave from work, Courtney changed positions so she could better balance work with taking Kingston to appointments. His sister, Savannah, came home after living with her aunt.

His parents say he is still a little slower than before, and his right arm is thinner than his left, but muscles are coming back.

Kingston says he feels as good as new.

Author: ANNA KUCHMENT
Source: The Dallas Morning News
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