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Jourdan Loyola, 7, had acute flaccid myelitis two years ago and is still undergoing rehabilitation for his partially paralyzed arm. (Annie Flanagan)
MARRERO, La. – By the time Jourdan Loyola was finally diagnosed with a rare and confusing disease called acute flaccid myelitis Two years ago, the child of 5 years could not move his neck, his right arm or one of his legs. Not knowing how to treat this unusual disease, which had started with cold-like symptoms and had turned into paralysis in a few days, New Orleans doctors rushed to consult colleagues across the country. country before administering steroids and a massive dose of antibodies.
His legs recovered, but his arm and neck remained weak. A nine-hour operation transferring the nerves from his ribs to replace the vital nerves that feed the muscles of his arm reinforced the limb. But now, at 7, he still can not tie his shoes, wash his hair or write with his right hand.
His daily routine includes intensive physical therapy and electrical stimulation. of his muscles that often causes rashes. The doctors told his parents that they did not know if he would regain full use of his right arm.
"They do not have a calendar," said her mother, Chelsi Loyola, who wondered if previous diagnosis and treatment could have helped. "For me, it's hard to hear. I just want him to recover. ''
While MFA cases have leapt ahead this fall – the third increase since 2014 – federal health authorities and clinicians across the United States have run to understand the disease. On Tuesday, officials from the Centers for Disease Control and Prevention announced the creation of a new working group to study the disease and suggest new ways to determine the cause and how to treat it.
In the meantime, parents of sick children are increasingly frustrated. Competitive theories have emerged on what triggers the AFM; without clear guidelines, doctors are trying several types of treatment. Although some children have seen improvement, no treatment has so far resulted in a complete and reliable recovery. Many will need intensive physical therapy for years. Some need a fan to help them breathe.
"It's not often that we are confronted with something we're still learning," said Michelle Melicosta, pediatrician at the Baltimore Kennedy Krieger Institute, specializing in brain, spinal cord and musculoskeletal disorders . "We do not always have the answer we would like to have. This makes it a little more scary for the family.
AFM is caused by inflammation of the spinal cord that causes severe muscle weakness and paralysis. More than 400 confirmed cases, most of them in children, have been reported in the last four years and one child with AFM died last year. Clinicians say the disease is under-diagnosed and under-reported.
Jourdan extends his arms to his mother, Chelsi, as part of his daily physical therapy. (Annie Flanagan)
Although the AFM has been reported on occasion for years, the CDC began to notice peaks of activity in 2014. Since then, cases have increased every two years at the same time. autumn. In 2014, the CDC confirmed 120 cases. In 2016, there were 149.
The CDC announced Tuesday that it would monitor the long-term results of all MFA cases for this year and previous years.
Several experts say that there is a strong correlation between AFM and epidemics of a common respiratory virus called enterovirus D68. Some enteroviruses are known to attack the spinal cord.
However, the CDC is also focusing on another possibility: AFM is not caused by a viral infection, but by the patient's immune system.
"It seems to be more of an autoimmune syndrome than a direct result of a virus," said Nancy Messonnier, director of the CDC's National Center for Immunization and Respiratory Diseases. She compared this disease to that of Guillain-Barré syndrome, a rare condition in which the immune system attacks nerve cells, often after a disease such as a respiratory infection.
Most cases of MFA start in the same way, with fever and cold-like symptoms, such as coughing and lethargy. Sudden weakness or paralysis can occur within hours or days.
"Many children suffer from respiratory diseases and fever, but only a small proportion of them develop the AFM," said Messonnier. "What we do not know is this black box in between. . . . We are trying to open this black box. "
Jourdan cycles specialized with his arms as part of his rehabilitation. (Annie Flanagan)
Last week, the CDC held a teleconference with a panel of experts that deal with the AFM and plans to release updated treatment guidelines for doctors later in the week. In addition, about 50 specialists who diagnosed and cared for patients across the country made the unusual decision to create an informal antimicrobial working group.
But without knowing clearly if the AFM is triggered by a virus or if it's an autoimmune disease, doctors say that it's hard to know how the treat. Some doctors, who treat it as an active viral infection, may offer large doses of antibodies fighting the disease. But if the AFM turns out to be an autoimmune disease, it might be more appropriate to use steroids or a blood filtration technique called Plasmapheresis, which removes harmful antibodies, said Anu Kalaskar, Childhood Infectious Disease Specialist at Children's Minnesota.
On Friday, another potential treatment was shown to be ineffective: a study from the journal Neurology found that the antidepressant fluoxetine, which inhibited enterovirus D68 in laboratory tests, did not improve. the muscle strength of children with AFM.
The only intervention that has benefits for all patients is intensive physical therapy. Apart from that, "we still do not have reliable data on what is most effective," said Kevin Messacar, a specialist in infectious diseases in children at Children's Colorado Hospital in Aurora, who advises the CDC.
Jourdan extends his arms as part of his daily physical therapy. (Annie Flanagan)
Messacar is one of the leading advocates of the enterovirus theory, claiming that AFM cases have increased after outbreaks of enterovirus D68. The CDC has not always found the enterovirus D68 in the case of MFA, but Messacar and others say that doctors need to look more. The virus, which can be removed from the body when muscle weakness appears, can only be diagnosed by special tests on nasal swabs and blood.
"It's just not intuitive to look into someone's nose who's suffering from paralysis," Messacar said.
For 13-year-old Cooper Allen's family of Littleton, Colorado, the last few months have been marked by uncertainty and fear. The eighth grader was diagnosed in August and has a partially paralyzed left arm. His daily routine includes special exercises and electrical stimulation. He can bend his elbow and fully use his fingers, but his shoulder and biceps are not working properly. He can not raise his arm above his head. He can no longer fight, favorite sport since the age of 5 years. When his 5-year-old sister fell from a stool next to him, he could not catch her.
"I tried to reach her, but I could not," he says.
She was not hurt. But as his mother, Amber Allen, reminded him, "It was one of the rare cases where Cooper cried."
Cooper's parents are considering one of the latest proposed interventions for MAF patients: nerve transfer surgery, a long-standing technique that redirects nerves from one part of the body to the injured area. But the timing is critical. Pediatric surgeons say that the ideal window is six to nine months from the date of onset.
Jourdan Loyola fell ill in August 2016, the third day of kindergarten. At least three clinicians saw him while his cough and lethargy turned into a severe neck pain. Clinicians from an emergency care clinic, an emergency room of a hospital and his pediatrician have prescribed antibiotics. He was hospitalized for two months.
"The fact that three doctors saw this child before he was paralyzed defeated the spirit," said his mother, Chelsi, a nurse from the emergency rooms.
The youngster now follows a broad physical therapy program, with hours of daily exercise at home on the outskirts of New Orleans. He and his mother regularly visit Kennedy Krieger's house. They will spend his eighth birthday, which falls on the occasion of Thanksgiving, in the premises of Baltimore.
Jourdan can now bend his right arm at the elbow and lift him about 30 degrees. He is still visibly thinner than his left. "But just to see it grow, oh my God," she said.
During a recent afternoon at home, Jourdan cycled for 30 minutes on a special bike that measures the strength of his right arm (which he nicknamed "Gimpy"). Electrodes covering his arm sent impulses to 12 muscles.
Two minutes from the end, his right shoulder is sagging with fatigue. His mother pushed him back against the chair so that his arm could train properly.
"Push him, push him," she told him.
"Mom!" He cried with pain.
"Come on, there's a minute left," she says.
"Ow!" Shouted it.
"Come on!" She insisted, never letting go. "Make Gimpy do all the work."
At 30 seconds from the end, he pedaled hard and finished with a speed spike.
Stretches and weights followed. Then he and his older brother, Joseph, played baseball in the alley. Carrying a portable muscle stimulator, Jourdan grabbed a bat with both hands and swayed sharply, his left arm guiding the weak right. He hit several balls in a row. One of them almost hit a car parked in the street.
"Good road!" Cried his mother as he turned to her with a smile.
"Tape me in five! Five years with Gimpy," she said.
She did not want to miss any chance to work on her arm.
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