Explosion of polio-like cases in children Medical Alarms
Explosion of polio-like cases in children Medical Alarms
Two years ago, Christa Bottomley's healthy 5-year-old son caught a viral cold like the rest of the family. All the others recovered, but in his case the virus went off. a neurological condition.
The condition is called acute flaccid myelitis or AFM. Although it's weird, has jumped to the national radar. While doctors struggle to explain their third national peak since 2014, families like Bottomleys try to give hope to other people affected by the sudden polio-like illness and boost greater awareness in the medical community.
AFM causes inflammation of the nervous system, particularly the gray matter of the spinal cord, which causes the weakening of the muscles in generally one or more arms and legs. It can also affect the face and cause difficulty swallowing or even breathing. Almost all patients with AFM are hospitalized for several days or even months.
It mainly affects children, who sometimes recover over time, often with therapy. Others remain paralyzed and need long-term care and rehabilitation.
Sebastian was in a hospital in Hershey, Pennsylvania, for three weeks and lost movement in both arms and legs. I could not sit down or turn my head in one direction. He spent another 60 days at the Kennedy Krieger pediatric hospital in Baltimore, but he still could not move his right arm or any of his legs.
Since then he has recovered some mobility through surgeries and rehabilitation. You can walk with a walker and leg braces, although you still predominantly use a wheelchair outside the house. You must travel from your home in York, Pa., To Kennedy Krieger for a weekly therapy.
"I wish people had heard in 2016 when we said that this was coming," says Mrs. Bottomley. "Nobody wanted to listen. I think it will be the same in 2020, and I hope that we will have your attention then. "
Every two years since 2014, the Centers for Disease Control and Prevention have documented an increase in AFM, almost always in children. The CDC is investigating 219 reports of patients with AFM so far this year, with 80 cases in 25 confirmed states, from the 33 of the previous year. In 2016, the CDC confirmed 149 cases of AFM and in 2014 there were 120 cases.
Doctors and CDC differ about the possible cause of the condition and how to treat it. Many doctors speculate that AFM feeds heavily on a common virus called enterovirus, which for most people causes no more than a routine infection of the upper respiratory tract. But the CDC believes that there could be other culprits.
Some experts believe that the condition probably existed before 2014 and think that there could be more cases, since there is no national requirement to report, since there are many other conditions, including influenza and measles.
"If there were mandatory reports, it would help with surveillance," says Keith Van Haren, an assistant professor of neurology at the Stanford University School of Medicine. "This does not seem to be disappearing, we have to be preparing and anticipating the possibility of a more serious outbreak."
More than 50 researchers formed a working group in October to identify the mechanism of the disease and develop better diagnostic and treatment standards for medical professionals.
In 2014, experts noticed for the first time a link between myelitis (inflammation of the spinal cord) and enterovirus strain D68. This year, doctors discovered another possible link to the A71 strain of enterovirus.
Sebastian Bottomley walks out of his home every day in York, Pennsylvania, to help him regain the strength he lost after hiring AFM two years ago. Use a wheelchair when traveling outside your home.
Photo:
Ryan Collerd for The Wall Street Journal
So far this year, Children's Hospital of Colorado has treated a dozen children with AMF. Most of them have tested positive for enterovirus A71, with only one positive result for strain D68. The good news, says Samuel Domínguez, a pediatric infectious disease doctor at the hospital, is that most children with enterovirus A71 have already recovered. Whoever has enterovirus D68 has not done so.
The CDC is not focusing only on enterovirus as the main trigger. When samples are taken from the respiratory tract, a significant portion of patients tested positive for enterovirus, but not the majority, says Kathleen Dooling, CDC medical officer and incident manager for her response from AFM.
Priya Duggal, director of the genetic epidemiology program at the Bloomberg School of Public Health at Johns Hopkins University, is conducting a study to see if victims of AFM share any relevant gene.
His research group collected saliva samples from 60 AFM patients and their relatives and extracted their DNA so they could sequence their genome.
Suzanne Rybczynski, medical director of the pediatric rehabilitation hospital at Kennedy Krieger Hospital, says that they have had six patients hospitalized with AFM this year from all of the USA. UU., And that more seek to be admitted. Some children will undergo nerve-transfer surgery, in which the nerves that still work are diverted to help strengthen another muscle group.
Patients go to Kennedy Krieger when they are medically stable, although some are still in ventilation, and are ready to begin rehabilitation. That includes the use of robotics and electrical stimulation to help the muscles of the body remember how to move, as well as animal and animal-assisted therapy, says Dr. Rybczynski.
Christa Bottomley helps her son, Sebastian, put on orthotics. Ms. Bottomley says that thousands of rehabilitation hours and nerve-transfer surgeries have allowed her son to walk with a walker and braces.
Photo:
Ryan Collerd for The Wall Street Journal
In her visits to the past few months, Mrs. Bottomley has met with other families with young children who are going through the same experience.
"I tell them that the recovery will be long and slow, but if they do a little physical therapy every day, that's what helps the most," he says.
Among those that Mrs. Bottomley has met is Chris Carr, of Roanoke, Virginia, whose 4-year-old son, Camdyn, has been on a ventilator for more than a month.
Camdyn is improving and recently started talking again, but 85% of her body remains paralyzed, including the left side of her face. "He can move his right leg, he can move his left toes and he can 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 alone, he can not use the bathroom, he can not do anything."
Mr. Carr says the doctors told him that the AFM was caused by the enterovirus, but he's not sure what the strain is. He's already thinking about surgery, but he'll have to wait at least six months for that. Meanwhile, they will do physical therapy and wait for further improvements.
"Life is changing," says Carr. "My son may need help to live the rest of his life, well beyond my death."
Some hope for recovery
The nerve transfer surgeries are giving some patients with AFM a movement that their families thought they would never have again.
At the age of 6 years, Ariel Serrano was among the first group of patients with AFM in the fall of 2014. He regained mobility naturally, except in his right arm, and was accepted for surgery, in which doctors take nerves that still work and deviate or relocate. To help empower a different muscle group.
Only a few doctors in the country perform surgeries of this type for patients with AFM. Among them is Mitchel Seruya, director of the brachial plexus and peripheral nerves center at the Children's Hospital of Los Angeles, who extracted a muscle from Ariel's inner thigh and transferred it to his right arm. Then he connected the nerves of the ribs to the new muscle in his arm.
Now, Ariel can bend her elbow to pick up things and feed herself, although she is still working on her strength, says her mother, Ingrid Herrera. She has returned to swim and won the first place in a recent judo competition.
When the entire arm is paralyzed, the nerves should deviate from the ribs and children should learn how to activate their arm when they cough or whistle. But eventually the brain learns to do it automatically.
Some doctors say that because nerve transfers in patients with AFM have not been systematically studied, they should not be considered a cure. "It can help to gain function in a muscle group, but there's usually no dramatic benefit," says Keith Van Haren, an assistant professor of neurology at the Stanford University School of Medicine.
The success of surgeries may depend on which part of the body is directed. Dan Zlotolow, a pediatric upper limb surgeon at Shriners Hospital for Children in Philadelphia who performed 17 surgeries on patients with AFM, says he has had a lot of success with elbow surgeries, but less with the shoulder.
The only surgeon who has tried to perform nerve transfer surgeries on the legs of patients with AFM is Amy Moore, associate professor of plastic surgery at the University of Washington in St. Louis.
It usually transfers the nerves that move the toes to the nerves that stabilize the hip or move the knee. Because the nerves grow an inch per month, it can take up to a year to see the effects.
"It's not making them normal, but it's giving them the hope and the potential that someday they'll be able to stand or even walk," he says.
Write to Sumathi Reddy in sumathi.reddy@wsj.com
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