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Two years ago, Christa Bottomley's 5-year-old healthy son caught a viral cold like the rest of the family. Everyone has recovered, but in his case, the virus has triggered a neurological disease.
The condition is called acute flaccid myelitis, or AFM. Although rare, he jumped on the national radar. As doctors struggle to explain their third national summit since 2014, families like the Bottomley are trying to give hope to those affected by the sudden illness that resembles polio and to increase the medical awareness of this disease. .
The AFM causes inflammation of the nervous system, especially the gray matter of the spinal cord, which weakens the muscles of one or more arms and legs. It can also affect the face and cause difficulty swallowing or even breathing. Almost all AFM patients are hospitalized for days to months.
It mainly affects children, who sometimes recover over time, often with therapy. Others remain paralyzed and need long-term care and rehabilitation.
Sebastian spent three weeks in the hospital and lost all movement of his arms and legs. He could not sit or turn his head in one direction. He spent 60 days at the Baltimore Kennedy Krieger Pediatric Hospital, but still could not move his right arm or leg.
Since then, he has found a certain mobility thanks to surgical interventions and his rehabilitation. He can walk with a walker and leg splints, even if he always uses a wheelchair outside the house. He must travel from his home in York, Pennsylvania, to Kennedy Krieger for weekly treatment.
"I would have liked people to listen in 2016 when we announced that it was going to happen," says Bottomley. "Nobody wanted to listen. I think it will be the same in 2020 and I hope we will have their attention then. "
Every two years since 2014, the Centers for Disease Control and Prevention have documented an outbreak of MFA cases, almost always in children. The CDC is currently investigating 191 reports of AFM patients, with 72 confirmed cases in 24 states, up from 33 the previous year. In 2016, the CDC confirmed 149 MFA cases and in 2014 there were 120.
Doctors and CDCs differ as to the possible cause of the disease and how to treat it. Many doctors believe that the AFM is largely fueled by a common virus called enterovirus, which for most people causes nothing more than a routine infection of the upper respiratory tract. But the CDC thinks there could be other culprits.
Some experts believe that the disease probably existed before 2014 and think that there could be more cases because there is no national reporting obligation, as is the case for many other diseases including influenza and measles.
"If the declaration were mandatory, it would help with surveillance," says Keith Van Haren, an assistant professor of neurology at Stanford University's School of Medicine. "It does not seem to disappear. We must prepare and anticipate the possibility of a more serious epidemic. "
In October, more than 50 researchers formed a task force to identify the mechanism of the disease and to develop better standards of diagnosis and treatment for health professionals.
In 2014, experts first identified a link between myelitis – inflammation of the spinal cord – and the enterovirus strain D68. This year, doctors have discovered another possible link, the A71 strain of enterovirus.
Sebastian Bottomley travels every day outside his home in York, Pennsylvania, to help him regain the strength he lost after contracting AFM two years ago. He uses a wheelchair when he travels outside his home.
Photo:
Ryan Collerd for the Wall Street Journal
Since the beginning of the year, the Children's Hospital of Colorado has treated a dozen children with MFA. The majority of them were tested positive for enterovirus A71, with only one positive test for strain D68. According to Samuel Dominguez, pediatric physician specializing in infectious diseases at the hospital, most children with enterovirus A71 have already recovered. The one with enterovirus D68 does not have.
The CDC does not focus solely on enterovirus as the main trigger. When samples were taken from the airways, a considerable number of patients were tested positive for the enterovirus virus, but not the majority, Kathleen Dooling, a CDC doctor and responsible for the incidents for their response to the AFM.
Priya Duggal, director of the genetic epidemiology program at the Johns Hopkins Bloomberg School of Public Health, is currently conducting a study to determine whether AFM victims share relevant genes.
His research group collected saliva samples from 60 AFM patients and their family members and extracted their DNA so they could sequence their genome.
Suzanne Rybczynski, medical director of the Kennedy Krieger Pediatric Rehabilitation Hospital, said six AFM hospital patients had been admitted this year throughout the United States, and others were seeking admission. Some children will then undergo a nerve transfer operation during which the nerves that are still working are diverted to help feed another muscle group.
Patients go to Kennedy Krieger when they are medically stable – even if some are still ventilated – and ready to begin their rehabilitation. This includes the use of robotics and electrical stimulation to help the body's muscles remember how to move, as well as assisted therapy by aquatic organisms and animals, says Dr. Rybczynski.
Christa Bottomley helps her son, Sebastian, put splints on his legs. Ms. Bottomley says that thousands of hours of rehab and nerve transfer surgery have allowed her son to walk with a walker and splints.
Photo:
Ryan Collerd for the Wall Street Journal
During her visits in recent months, Ms. Bottomley has met other families with young children living the same experience.
"I tell them that recovery will be slow and slow, but if they do a little physical therapy every day, it will help the most," she says.
Among the people Ms. Bottomley met is Chris Carr, of Roanoke, Va., Whose 4 year old son Camdyn has been ventilated for more than a month.
Camdyn improves and has recently resumed the conversation, but 85% of his body remains paralyzed, including the left side of his face. "He can move his right leg, wiggle his left toes and squeeze with his left hand," says Carr, who had to quit his job as a welder to stay with his son. "He can not sit on his own, he can not go to the bathroom, he can not do anything."
Carr said the doctors told him the AFM was due to the enterovirus, but he did not know which strain. He is already thinking about surgery, but will have to wait at least six months for that. In the meantime, they will do physical therapy and hope for more improvements.
"It's changing our lives," says Carr. "My child may need help to live all his life long after I die and leave."
A little hope for recovery
Nerve transfer surgeries give some patients with ACM a motion that their families thought they would never have.
At the age of 6, Ariel Serrano was part of the first group of ADM patients in the fall of 2014. She regained her mobility naturally except in the right arm, and was accepted for intervention surgical. Doctors take nerves that still work and turn away or help them feed a different muscle group.
Only a few doctors in the country practice such surgeries for AFM patients. Among them, Mitchel Seruya, director of the brachial plexus and peripheral nerve center of the Los Angeles Children's Hospital, removed a muscle from Ariel's thigh and transferred it to his right arm. He then connected the rib nerves to the new muscle of his arm.
Now, Ariel can bend her elbow to pick up items and feed herself, even if she's still working on her strength, says her mother, Ingrid Herrera. She returned to swimming and took first place in a recent judo competition.
When the entire arm is paralyzed, the nerves must be diverted from the ribs and children must learn to activate their arms by coughing or whistling. But eventually, the brain learns to do it automatically.
Some doctors say that nerve transitions in patients with MAF have not been studied systematically, they should not be considered as a cure. "It can help increase efficiency in a muscle group, but in general, there is no dramatic benefit," says Keith Van Haren, an assistant professor of neurology at Stanford University's School of Medicine.
Successful surgeries may depend on the targeted body part. Dan Zlotolow, pediatric surgeon of the upper limbs of the Shriners Children's Hospital in Philadelphia, who performed 17 surgeries on patients with MAF, said that he had been very successful in elbow surgeries but less with the shoulder.
Amy Moore, associate professor of plastic surgery at Washington University in St. Louis, is the only surgeon to have attempted to perform nerve transfer surgery in the legs of AFM patients.
It usually transfers the nerves that move the toes to the nerves that stabilize the hip or knee. As the nerves grow an inch a month, it can take up to a year to see the effects.
"It does not make them normal, but gives them hope and potential that they can one day stand up or even walk," she says.
Write to Sumathi Reddy at [email protected]
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