Friday April 19, 2019

“Everyone is Desperate For Some Magical Thing,” Paralyzing Illness in Kids On High Rise

The CDC is pledging a greater focus, too. Parents have accused the agency of doing little more than counting cases and have complained that when they tried to contact CDC, they encountered only automated phone trees and form responses.

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Braden Scott gives a thumbs up as he pauses while practicing on the piano in Tomball, Texas, March 29, 2019. Braden was diagnosed with the syndrome called acute flaccid myelitis, or AFM, in 2016 and was paralyzed almost completely. VOA

One morning last fall, 4-year-old Joey Wilcox woke up with the left side of his face drooping.

It was the first sign of an unfolding nightmare.

Three days later, Joey was in a hospital intensive care unit, unable to move his arms or legs or sit up. Spinal taps and other tests failed to find a cause. Doctors worried he was about to lose the ability to breathe.

“It’s devastating,” said his father, Jeremy Wilcox, of Herndon, Virginia. “Your healthy child can catch a cold — and then become paralyzed.”

Joey, who survived but still suffers some of the effects, was one of 228 confirmed victims in the U.S. last year of acute flaccid myelitis, or AFM, a rare, mysterious and sometimes deadly paralyzing illness that seems to ebb and flow on an every-other-year cycle and is beginning to alarm public health officials because it is striking more and more children.

Dr. Anthony Fauci, head of the National Institute of Allergy and Infectious Diseases, said it may bear similarities to polio, which smoldered among humans for centuries before it exploded into fearsome epidemics in the 19th and 20th centuries.

Fauci, who published a report about the disease Tuesday in the journal mBio, said it is unlikely AFM will become as bad as polio, which struck tens of thousands of U.S. children annually before a vaccine became available in the 1950s.

Rachel Scott, right, helps suction the mouth of her son, Braden, in Tomball, Texas, March 29, 2019.
Rachel Scott, right, helps suction the mouth of her son, Braden, in Tomball, Texas, March 29, 2019. VOA

But he warned: “Don’t assume that it’s going to stay at a couple of hundred cases every other year.”

While other countries have reported cases, including Canada, France, Britain and Norway, the size and pattern of the U.S. outbreaks have been more pronounced. More than 550 Americans have been struck this decade. The oldest was 32. More than 90% were children, most around 4, 5 or 6 years old.

Most had a cold-like illness and fever, seemed to get over it, then descended into paralysis. In some cases, it started in small ways — for example, a thumb that suddenly wouldn’t move. Some went on to lose the ability to eat or draw breath.

Many families say their children have regained at least some movement in affected limbs, but stories of complete recovery are unusual. Health officials cannot say how many recovered completely, partly or not at all, or how many have died, though the Centers for Disease Control and Prevention says deaths are rare.

Scientists suspect the illness is being caused chiefly by a certain virus that was identified more than 55 years ago and may have mutated to become more dangerous. But they have yet to prove that.

Treatments, physical therapy

And while doctors have deployed a number of treatments singly or in combination — steroids, antiviral medications, antibiotics, a blood-cleansing process — the CDC says there is no clear evidence they work.

Many parents say that when they first brought their child to the emergency room, they quickly realized to their horror that the doctors were at sea, too.

“Everyone is desperate for some magical thing,” said Rachel Scott, a Tomball, Texas, woman whose son Braden developed AFM in 2016 and has recovered somewhat after intensive physical therapy but still cannot move his right arm and has trouble swallowing and moving his neck.

A growing number of experts agree that physical therapy makes a difference.

“These kids can continue to recover very slowly, year over year. … It’s driven by how much therapy they do,” said Dr. Benjamin Greenberg of UT Southwestern Medical Center in Dallas, one of the nation’s foremost experts on the condition.

Wilcox, Joey’s father, said his son made huge improvements that way. Joey can run and use his arms. Still, muscle tone is weak in his right leg and shoulder, and he still has left-side facial paralysis. “He can’t completely smile,” his dad said.

Other stories are more tragic.

Katie Bustamante’s son Alex developed AFM in 2016. The suburban Sacramento, California, mother realized something was wrong when she asked the boy, then 5, why he wasn’t eating his yogurt. Alex replied that his thumb had stopped working and he couldn’t hold his spoon.

That morning was the start of 17 months of hospital stays, surgeries, therapy, and struggles with doctors and insurers to find a way to restore his ability to breathe. It ended one morning last May, when Alex died of complications.

Government officials need to step up, Bustamante said.

“I want them to research it and find the cause, and I want them to find a way to prevent it,” she said. “This is growing. This shouldn’t be happening.”

Suspected cause

More and more experts feel certain the main culprit is an enterovirus called EV-D68, based on the way waves of AFM have coincided with spikes of respiratory illnesses caused by EV-D68. Enteroviruses are a large family of viruses, some of which, such as polio, can damage the central nervous system, while many others cause mild symptoms or none at all.

In the U.S., doctors began reporting respiratory illnesses tied to EV-D68 in 1987, though usually no more than a dozen in any given year.

Then, in what may have been one of the first signs of the AFM waves to come, a 5-year-old boy in New Hampshire died in 2008 after developing neck tenderness and fever, then weakened arms and deadened legs. The boy had EV-D68, and in a report published in an obscure medical journal, researchers attributed his death to the virus.

Braden Scott uses a device to support his left arm as he practices on the piano in Tomball, Texas, March 29, 2019.
Braden Scott uses a device to support his left arm as he practices on the piano in Tomball, Texas, March 29, 2019. VOA

The first real burst of AFM cases hit in 2014, when 120 were confirmed, with the largest concentrations in California and Colorado.

What ensued was an even-year, odd-year pattern: Cases dropped to 22 in 2015, jumped to 149 in 2016, and fell again, to 35 in 2017. Last year they reached 228, a number that may grow because scores of illnesses are still being investigated.

In keeping with the cyclical pattern, just four cases have been confirmed this year so far.

CDC officials consider an illness AFM based on scans and other evidence showing a certain kind of damage to the spinal cord. Proof of an enterovirus infection is not required for a case to be counted, mainly because such evidence has been hard to come by. So far, CDC investigators have been able to find evidence of enteroviruses in the spinal fluid of only four of 558 confirmed cases.

Scientists are using more sensitive spinal-fluid tests in hopes of establishing the connection between AFM and EV-D68 more firmly. That, in turn, could spur more focused work on treatments and maybe even a vaccine.

Meanwhile, Fauci’s agency has put out a call for researchers to apply for federal funds, and is tapping a University of Alabama-anchored network of pediatric research centers to work on the illness.

Also Read: New Antibody Approach to Tackle Ebola, Research To Make Successful Treatments For The Deadly Viral Infection

The CDC is pledging a greater focus, too. Parents have accused the agency of doing little more than counting cases and have complained that when they tried to contact CDC, they encountered only automated phone trees and form responses.

CDC officials have begun holding meetings and calls with families, set up a scientific task force and working to monitor cases more closely.

Fauci suggested it would be a mistake to assume that surges will take place every other year forever. The next one “may be in 2019, for all we know,” he said. (VOA)

Next Story

U.S. To Expands Indefinite Detention for Asylum-Seekers

The decision will have no impact on unaccompanied migrant children, who are exempt from expedited removal. Most families are also paroled because of a lack of facilities to hold parents and children together.

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Attorney General William Barr appears before a House Appropriations subcommittee to make his Justice Department budget request, April 9, 2019, in Washington. VOA

The U.S. Attorney General on Tuesday struck down a decision that had allowed some asylum-seekers to ask for bond in front of an immigration judge, in a ruling that expands indefinite detention for some migrants who must wait months or years for their cases to be heard.

The first immigration court ruling from President Donald Trump’s newly appointed Attorney General William Barr is in keeping with the administration’s moves to clamp down on the asylum process as tens of thousands of mostly Central Americans cross into the United States asking for refuge. U.S. immigration courts are overseen by the Justice Department and the Attorney General can rule in cases to set legal precedent.

Barr’s ruling is the latest instance of the Trump administration taking a hard line on immigration. This year the administration implemented a policy to return some asylum-seekers to Mexico while their cases work their way through backlogged courts, a policy that has been challenged with a lawsuit.

Several top officials at the Department of Homeland Security were forced out this month over Trump’s frustrations with an influx of migrants seeking refuge at the U.S. southern border.

U.S. Border Patrol agents apprehend undocumented migrants after they illegally crossed the U.S.-Mexico border in Mission, Texas, April 9, 2019.
U.S. Border Patrol agents apprehend undocumented migrants after they illegally crossed the U.S.-Mexico border in Mission, Texas, April 9, 2019. VOA

Migrants crossing illegally

Barr’s decision applies to migrants who crossed illegally into the United States.

Typically, those migrants are placed in “expedited removal” proceedings, a faster form of deportation reserved for people who illegally entered the country within the last two weeks and are detained within 100 miles (160 km) of a land border.

Migrants who present themselves at ports of entry and ask for asylum are not eligible for bond.

But before Barr’s ruling, those who had crossed the border between official entry points and asked for asylum were eligible for bond, once they had proved to asylum officers they had a credible fear of persecution.

“I conclude that such aliens remain ineligible for bond, whether they are arriving at the border or are apprehended in the United States,” Barr wrote.

Barr said such people can be held in immigration detention until their cases conclude, or if the Department of Homeland Security (DHS) decides to release them by granting them “parole.” DHS has the discretion to parole people who are not eligible for bond and frequently does so because of insufficient detention space or other humanitarian reasons.

Effective date delayed

Barr said he was delaying the effective date by 90 days “so that DHS may conduct the necessary operational planning for additional detention and parole decisions.”

The decision’s full impact is not yet clear, because it will in large part depend on DHS’ ability to expand detention, said Steve Vladeck, a law professor at the University of Texas.

“The number of asylum-seekers who will remain in potentially indefinite detention pending disposition of their cases will be almost entirely a question of DHS’ detention capacity, and not whether the individual circumstances of individual cases warrant release or detention,” Vladeck said.

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The decision will have no impact on unaccompanied migrant children, who are exempt from expedited removal. Most families are also paroled because of a lack of facilities to hold parents and children together. Pixabay

DHS officials did not immediately respond to a request for comment on the decision. The agency had written in a brief in the case arguing that eliminating bond hearings for the asylum seekers would have “an immediate and significant impact on … detention operations.”

Record detentions

In early March, Immigration and Customs Enforcement (ICE), the DHS agency responsible for detaining and deporting immigrants in the country illegally, said the average daily population of immigrants in detention topped 46,000 for the 2019 fiscal year, the highest level since the agency was created in 2003. Last year, Reuters reported that ICE had modified a tool officers have been using since 2013 when deciding whether an immigrant should be detained or released on bond, making the process more restrictive.

The decision will have no impact on unaccompanied migrant children, who are exempt from expedited removal. Most families are also paroled because of a lack of facilities to hold parents and children together.

Also Read: U.S. President Donald Trump Vetoes Measure to End U..S Involvement in Yemen War

Michael Tan, from the American Civil Liberties Union, said the rights group intended to sue the Trump administration over the decision, and immigrant advocates decried the decision.

Barr’s decision came after former Attorney General Jeff Sessions decided to review the case in October. Sessions resigned from his position in November, leaving the case to Barr to decide. (VOA)