[ad_1]
LOS ANGELES -The May Axton watched in horror as her granddaughter Cambria stumbled and toppled as she rushed into the kitchen of their home. The 2-year-old girl tried to get up, but without success.
"Her little legs just fell under her, like a puppet doll," said Axton, who lives in Menifee in Riverside County.
In a few hours, Cambria was unable to move her arms and legs. Her diaphragm stopped working, so she needed machines to breathe. In September 2016, doctors determined that she was suffering from an unexplained illness called acute flaccid myelitis.
In 2014, more than 100 children in the United States are suddenly paralyzed and diagnosed with this disease, which is very similar to polio. In 2016, another epidemic paralyzed even more children. Two years later, the devastating disease is back.
Federal health officials said this week that 62 cases of acute flaccid myelitis, or ADM, have been confirmed in 2018 and that another 65 possible cases are currently under investigation. Experts from US Centers for Disease Control and Prevention say they still do not know what's causing the syndrome.
But some parents and doctors say that the CDC is actually not enough to tackle the disease. Many doctors believe that paralysis is caused by a summer virus and that the CDC's decision to continue to characterize the AFM as a "mysterious" disease falsely fights parents' fears and hampers efforts to develop coping strategies. prevention and treatment.
"It's really hard to see these kids and to know that we saw them the same way four years ago," said Priya Duggal, an epidemiologist at the Johns Hopkins Bloomberg School of Public Health, who studies # 39; AFM. "And it's scary to think that it could be the same in 2020, unless we make changes now."
In 2014, children started arriving in the country's emergency rooms without being able to move an arm or a leg. Standard treatments do not seem to work, leaving doctors puzzled.
"We did not really know what we were looking for in the beginning," said Dr. Emmanuelle Tiongson, a pediatric neurologist at the Los Angeles Children's Hospital, who treated six patients with MAF in 2014. This is the first time that we have been diagnosed with this condition. is not something we have seen since everyone has been polio vaccinated. "
Doctors have coined the name of this condition – "acute flask" for sudden and total paralysis and "myelitis" for the part of the spinal cord involved in muscle movement.
Tests showed that it was not poliovirus. However, many patients have achieved positive laboratory results for enterovirus D-68, a cousin of the poliovirus known to cause only the common cold – although experts have suspected it to have serious consequences. more serious.
Studies have confirmed that an outbreak of enterovirus D-68 in 2014 was consistent with an increase in the number of cases of paralysis. One study found that injecting the virus into mice was responsible for the type of paralysis observed in children.
"I think people like me continue to believe that the majority (…) of these cases are related to enterovirus D-68 infection," said Dr. Kenneth Tyler, a neurologist at the University of Toronto. University of Colorado, who led the study on the mouse. "The CDC has been, I think, extremely cautious."
Federal health officials said this week that although some MAF patients had enteroviruses in their system, many did not. CDC experts say they are considering a wide range of possible causes, including other viruses, autoimmune diseases and environmental toxins.
"It's a mystery so far and we have not solved it yet, so we need to think broadly," Nancy Meissonnier, director of the National Center for Immunization and Respiratory Diseases, told the press. CDC.
She added that the agency was intensifying its efforts to investigate the AFM, but pointed out that the situation remained rare – 386 cases in the United States since 2014.
Dr. Roberta DeBiasi, head of the pediatric infectious diseases division of the National Children's in Washington, DC, said officials still did not know if the AFM was due to enterovirus infection. Scientists would need to find the virus in the cerebrospinal fluid of affected children – evidence that he traveled there and caused motor damage – but they have not done so yet. Some children with AFM have even been tested positive for completely different viruses.
"I do not think it's possible for anyone to say for sure that this is due to the enteroviruses," she said.
Because experts do not know what the cause of the disease is, the CDC has recommended a wide range of safety measures, including washing hands, keeping up-to-date with vaccination, and using an insect repellent to fight bites. mosquitoes.
But many caregivers feel frustrated by the lack of response to such a serious illness. There is essentially no effective medical treatment for these patients.
Two years after Cambria's first illness, one of his arms and one leg are still paralyzed. She is relearning to walk.
"There is nothing nice about the AFM," said his grandmother Axton. "It sounds a lot like polio and lungs of steel, etc., but we are in 2018 and we deserve answers."
Riley Bove's son, Luca, was diagnosed with MFA in 2014, at the age of 4 years.
Four years later, Luca's right shoulder remains paralyzed, so he started writing and eating with his left hand. He wears a neck brace to protect his weakened neck against a dangerous tilting back and a wound in the spine.
"The neck is a constant safety problem, so birthdays are not an inflatable castle, can play football with friends only if they are supervised, or any contact sports," said Bove, a neurologist at l & # 39; university. from California, San Francisco. "He's 8 years old, but he'll probably have safety car seats for a very long time."
The average age of patients is 4 years, although doctors do not know why this age group is particularly vulnerable. Experts also do not understand why epidemics seem to affect every two years.
(EDITORS: START THE OPTIONAL FINISH)
Nevertheless, Dr. Kevin Messacar, pediatric infectious disease specialist at the Colorado Children's Hospital in Aurora, said that "the label of" mysterious disease "is a bit misleading."
In Colorado, Messacar has met patients with acute flaccid myelitis with enterovirus D-68 and others with the same virus, enterovirus A71. He hopes that the CDC will focus on an enterovirus vaccine, given the severe consequences of AFM.
"The vast majority of children with this disease unfortunately have paralysis and long-term disability, how can we prevent that if it comes back, or God keep us, come back in a more important way?" he said.
(END OF OPTIONAL FINISH)
Parents of children with AFM often remember that the entire family had a cold, but only one child developed AFM. Duggal, the Johns Hopkins researcher, is investigating whether the child who has suffered the most severe consequences may have had a genetic mutation that would put him at risk.
Prior to its eradication in the United States in the 1970s, poliovirus also gave thousands of people mild symptoms each year, while only a small fraction developed characteristic paralysis, suggesting a genetic factor at play.
"In a way, the virus does not matter – there is something circulating that makes people sick – but that's what's important that makes people vulnerable to paralysis," Duggal said. .
Maipele, the daughter of Carlene Burns, was diagnosed with MFA in 2016. Last year, she was operated on at the Los Angeles Children's Hospital to try to improve her arm function. right paralyzed.
Maipele is one of 15 children operated by plastic surgeon Dr. Mitchel Seruya. It connects nerves from other parts of the body to paralyzed limbs.
Maipele can now bend her elbow and close and open her fingers slightly, her mother explains.
"It's not going to reverse everything," Seruya said. "But if it's someone with an isolated limb, like an arm or a leg, we can do a really good job with that and bring them back to as many functions as possible."
___
(c) 2018 Los Angeles Times
Visit the Los Angeles Times on www.latimes.com
Distributed by Tribune Content Agency, LLC.
_____
PHOTOS (for help with images, contact 312-222-4194): MED-AFM
Source link
