Parents of children with AFM being treated in Baltimore warn about rare, scary polio-like condition

It started with a sinus infection. Then 4-year-old Camdyn Carr couldn’t move the right side of his face or lift his arm to scratch his nose.

His parents decided to take him a couple of hours away to see doctors who might be able to figure out what had afflicted their young boy. But as they drove from their Roanoke, Va., home to the University of Virginia, Carr’s whole body seized up and he was suddenly paralyzed.

Many tests later, Carr was diagnosed with the rare polio-like condition acute flaccid myelitis, or AFM. He is now a patient at Kennedy Krieger Institute, where his father, Christopher Carr, brought him for physical therapy and other treatment to try to get his son moving again.

AFM affects the gray matter in the spinal cord and can lead to paralysis, but is so rare that fewer than 1 in 1 million people, mostly children, contract it.

But a recent uptick in cases in the United States has put public health officials on alert and freaked out parents because of the severe symptoms that sometimes accompany it. Doctors don’t know exactly what is causing the mystery illness and there is no official treatment for it, raising the fear factor for some.

“So much of this doesn’t make sense to me,” said Christopher Carr, who is staying with Camdyn at Kennedy Krieger while the rest of the family remains at home. “I am hoping the physical therapy can help improve my son’s condition.”

The Centers for Disease Control held a teleconference Tuesday expressing concern about the disease, which has sickened 62 children this year and killed one. The CDC is investigating an additional 65 cases, including five children with the symptoms reported in Maryland.

Public health officials have not identified a common link among cases, but there seems to be a surge every couple of years.

The International Center for Spinal Cord Injury at Kennedy Krieger Institute has treated many cases from around the country, including six patients who are there now.

“Until we figure out if this is an infection or if this is an autoimmmune process, until we figure out how to prevent it, then the effort to bring awareness to it and develop timely interventions is appropriate even if it is 1 in a million,” said Dr. Cristina Sadowsky, the center’s clinical director.

Local doctors said that while there is reason to be diligent and pay attention to troublesome symptoms, they urged parents not to panic.

“We certainly don’t want to be sounding an alarm bell and having every single child with a runny nose running to the emergency room, but we want parents to be aware,” said Dr. Stephen Thompson, an associate professor in the department of pediatrics and neurology at the University of Maryland School of Medicine.

The CDC has not traced the illness to a specific virus, but the agency believes it can be triggered by poliovirus, nonpolio enteroviruses, adenoviruses and West Nile virus. Environmental toxins and genetic disorders also might play a role, the CDC said.

In many cases, doctors believe AFM to be caused by an enterovirus which belongs to the same family as polio. AFM has some similarities to polio, including the potential for muscle weakness and even paralysis, which is why the two are often compared.

Usually the virus enters an individual’s gastrointestinal tract or respiratory track and causes such symptoms as vomiting and diarrhea, or cough, congestion and a runny nose, said Dr. Ashanti Woods, attending pediatrician at Mercy Medical Center in Baltimore. In some very rare cases, the virus gets through the gastrointestinal system and invades the nervous system, potentially causing inflammation of the spinal cord, which causes AFM symptoms.

Symptoms can include droopy eyes and face, difficulty swallowing or breathing. Some patients develop weakness in their arms and legs and, in extreme cases, paralysis.

In these cases, patients might not be able to move their limbs, but still might feel sensation, say if someone pinches them, said Dr. Rebecca Martin, who leads rehabilitation therapies at the Kennedy Krieger center for spinal cord injuries. She described the paralysis as floppy in nature because the patients don’t have reflexes or muscle tone.

The symptoms can vary vastly from patient to patient, and some patients might never regain full movement, Martin said.

No official treatment exists for AFM. Doctors have tried immunoglobulin, corticosteroids, plasma exchange and antiviral therapy, but there is noconsistent evidence that any of these treatments help with recovery.

At Kennedy Krieger, children undergoing rehabilitation are treated with robotic devices and electrical stimulation to help move their limbs. The therapy is very intense because that has been found to encourage change to the nervous system. Many of the cases involve years of care. The return of movement usually starts in the toes and rises up the body, finishing with the shoulders.

“It is unfortunate that it affects really little kids, but in many ways they have an advantage over adults,” Martin said. “An adult nervous system is rigid and a child’s system may have a greater capacity for change, repatterning and growth.”

Doctors have been fielding questions from parents in recent days concerned about the disease.

Dr. William Dash, a pediatrician at Medstar Harbor Hospital, said he’d calmed down at least two parents as of Wednesday afternoon.

“Even though it is rare, you don’t want to be the parent whose kid gets it,” he said.

The CDC said the best way to protect against the disease is to make sure children are protected from viruses in general by having up-to-date vaccinations and protecting against mosquito bites. Rigorous hand washing also can help to prevent the spread of germs.

Otherwise, vigilance is recommended.

“If Kyle has a fever-like illness that won’t go away and he can’t move his arm or move his leg, come seek treatment as soon as possible because there are ways to make it better,” said Dr. Scott Krugman, vice chair of pediatrics at the Herman & Walter Samuelson Children’s Hospital at Sinai Hospital in Baltimore.

AFM has caught some families by surprise.

It started off as a cold for Elijah Yanike. Then the 5-year-old got weaker by the day. His head fell over when his mother placed him in the tub. He couldn’t move one of his arms. His legs were so weak he didn’t want to walk.

That’s when his parents knew their son suffered from more than a common cold or a case of mono, as doctors initially diagnosed. Instead, the Taneytown boy who recently started kindergarten was determined to have AFM.

“He was my rough-and-tumble kid and he was not rough anymore,” said his mother, Lauren Yanike.

Lauren and her husband, Anders, panicked when they first used Google to research the disease, which they had never heard about, and pictures of children on respirators popped up.

But their son’s case turned out to be more moderate than some of the others around the country. He started to get feeling back in his arm after a few days. He was treated with immunoglobulin at the Sinai’s children’s hospital and was then moved to Kennedy Krieger for rehabilitation. His parents are hopeful his condition will continue to improve.

“It was scary when we first learned about it,” Lauren Yanike said. “We broke down a few days ago. But we are feeling more confident now that he has seemed to have gotten over that hump.”

Carr said it is hard to watch his son Camdyn suffer. He is still mostly paralyzed and can’t speak, although he is trying. Some days he seems sad and depressed. But doctors will soon start working on his rehabilitation, including nerve transplants to help with mobility. The young boy has some movement in his right leg, left hand, eyebrows and left side of his face.

His dad looks forward to the day when Camdyn is back to his old self — a playful kid who liked to pull pranks.

In the meantime, his dad said he wants more parents to be aware of the disease.

“If more people speak out,” he said, “maybe this will kick somebody in the rear to find a treatment for this.”

amcdaniels@baltsun.com

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