Two Ephrata students battling rare illness

By on March 20, 2019

Nathan Barnica, 13, back in class after aggressive, ongoing treatment for AFM

A polio-like illness has come out of nowhere in the past few years, with no known cause and no cure, attacking children indiscriminately and leaving anguish in its wake.
The first few cases of acute flaccid myelitis were seen in 2012, and by 2014, the disease had been recognized by the media.

The disease, which attacks the spinal cord, affects children differently, depending on what part of the spine it infects, but it also has another disturbing characteristic; AFM spikes every other calendar year and the next year for an up-tick in cases will be 2020.

Heather and Jay Barnica of Ephrata have become experts in AFM since their son Nathan, 13, was diagnosed late last year. Nathan, an eighth grade student at Ephrata Middle School, was in a bowling tournament on Oct. 21 when he began having pain in his hip and lower back.

Later that same evening, he became feverish and had a low-grade fever for a week, his mother said. By mid-week, he developed a facial droop on his right side. The family doctor ordered blood tests, but nothing showed up to give the doctor any concerns, said Heather Barnica, a nurse anesthetist at Wellspan Ephrata Community Hospital.

“On Friday, he got out of bed and said his leg felt like Jell-O … and he had been sleeping a lot, so we thought perhaps that was why,” Heather said. “By Saturday, his leg would buckle and he couldn’t put weight on it, so we went to the ER.”

Walking in the G-EO, robotic gait-trainer, at Kennedy Krieger Institute.

Within 24 hours, Nathan’s right leg stopped working completely and he started having weakness in his right arm.

The emergency department doctors immediately sent Nathan to Hershey Medical Center for an inpatient ICU admission. Nathan stayed there for 17 days.
A comprehensive MRI of the brain and spine took three and a half hours and did show signs of acute flaccid myelitis. AFM affects the gray matter that covers the entire length of the spine and

Nathan’s MRI showed an inflammation of the gray matter. A spinal tap followed, then high-dose intravenous steroids were tried, hoping that would minimize the inflammation and improve movement.

“By then, his symptoms were worsening and instead of weakness in his leg, it had progressed to paralysis,” Heather said.

A procedure called plasma phoresis was started. This technique exchanges the plasma portion of the blood with albumin to remove any antibodies that could be causing the weakness and paralysis, Barnica explained.

“There is no known treatment out there; everything is trial and error,” Heather said. “So they pretty much threw the book at him to see what would help.”
The aggressive treatment of five exchanges of plasma phoresis every other day didn’t seem to be working, she said.

“His symptoms were getting worse, I can’t say they were getting any better,” Heather said.

Next came an infusion of a blood protein, called IV/IG. The blood product takes antibodies from donors and helps patients to recover from spinal injury. “The CDC says they don’t have enough statistics to say if this works or not; it was just another thing to try,” Heather said.

By Nov. 13, Nathan was transferred to the Kennedy-Kreiger Institute in Baltimore, an affiliate of Johns Hopkins Hospital.

A specialized center for spinal cord injury, KKI has had the most experience with children affected with AFM, Heather said. While AFM does primarily affect children, a few adults have been diagnosed with the disease, she said.

“Nate was in the 2018 cluster; it mimics how polio used to show up every other year and its very similar in pattern,” Heather said. “There’s a very strong suspicion that it’s from a strain of entero virus that has mutated in some way.”

Polio is also caused by a virus.

What is known so far is that most children start with a seven-day history of an upper respiratory infection or an upset stomach or fever before the disease progresses. An entire household could be infected by the virus, with one child actually getting AFM, Heather said.

Nathan was at Kennedy-Kreiger for another month.

“When we first got there, Nathan was using a walker, but now he walks with forearm crutches,” Heather said. “At KKI, that’s when I had a sobering realization of how lucky we were. Many of the children were intubated because they couldn’t breathe on their own, or had PEG tubes and were paralyzed from the neck down.”

The severity of the disease depends on where the infection is located; the higher up the spine, the more damage is done.

“The average age for ACM is four; one of the girls at KKI was 18 months old,” Heather said. “Some regain some movement; one boy could wiggle his toes.

“These are all children who were completely healthy and their lives have completely changed.” One theory for children affected like Nathan is that physical therapy can help.

Nathan had aggressive physical therapy five hours a day, Monday through Friday, and three hours on Saturday.

Nathan still goes to Baltimore three days a week for physical therapy. He has returned to school two days a week.

“His teachers have been wonderful,” Heather said. “He’s staying current using his laptop.” While the entero virus is contagious, she wants folks to know that Nathan is not contagious and cannot give anyone AFM.

“It’s difficult; he’s always been my happy-go-lucky kid,” Heather said. “He has been stoic and I think he’s handling it as well as he can. He used to play basketball and was an avid bowler.” Nathan, who has a 15-year-old brother, Andrew, is trying his hand at bowling again, taking it slowly and using a lighter ball, she said.

“The hard part is that I can’t give him answers because there are no answers,” Heather said.
Complicating the matter of this strange disease is that the CDC is not requiring mandatory reporting of incidences at this time. Without mandatory reporting, there won’t be increased funding for research.

“The CDC reports that the incidence is one in a million, but I know of three in the area and I feel it’s being under-reported,” Heather said.
One boy has been diagnosed in York, while a girl who attends Nathan’s school (see related story) has also been diagnosed.

“They were the first two kids to have been diagnosed that attend the same school at the same time; both were diagnosed in October,” Heather said.

After being contacted about this story, Ephrata Area School District Media and Community Relations Director Sarah McBee said the district would not be issuing a statement on the matter.
Heather offered more thoughts on the situation.

“Case numbers are important and mandatory reporting needs to be instituted,” she said. “Research for a vaccine requires funding; and numbers are needed to show there’s a need for the research.”

Heather and her husband have been in contact with the Pennsylvania Department of Health.

“A vaccine won’t help us,” she said. “But it could change everything for the next kid.”

 

Olivia Banks and her journey with AFM

Monday, Oct. 15, 2018 was the same as any school day for 11-year-old Olivia Banks, a sixth-grader at Ephrata Intermediate School.

But two days later, Olivia would have a machine doing her breathing, after going into respiratory failure.

Olivia was in Children’s Hospital of Philadelphia (CHOP) at the time, following a harrowing cascade of frightening symptoms that terrified her entire family.

Incredibly, Olivia’s situation was about to get worse.

Even after being placed on the ventilator, her complications continued to mount, said her mother, Brandie Banks. Her diaphragm stopped working, a lung collapsed, and she was unable to move her arms or legs.

This is a picture of acute flaccid myelitis, a mysterious polio-like disease that is affecting children across the United States. The cause is unknown, preventive measures are unknown, and a definitive cure does not exist at this time.

That October morning when Olivia went off to school, she wasn’t sick, her mother said, although she had complained of a headache for a few days. At 11 a.m. the school nurse called her parents, and told Olivia’s dad that she had come to her office complaining of neck and shoulder pain.

Derek Banks went to bring Olivia home. They walked out of the school, and Derek got in the car, but Olivia stayed standing on the sidewalk.

Olivia told him she couldn’t move her hands to open the car door. That precipitated a doctor’s office visit. Their family physician considered the neurological disease Guillain-Barre and advised a trip to an emergency department to do more testing.

Blood tests and a CT scan were done, but came with no answers and they were advised to go home. At that point, Olivia’s legs were so weak, her dad had to carry her to the car.

By the next morning, she couldn’t use her legs at all.

Physicians at Lancaster General Hospital advised taking Olivia to CHOP. There, an MRI, more blood work, and a spinal tap found the answer: acute flaccid myelitis. Doctors decided to administer a blood protein intravenously. But her symptoms worsened and it was that night the 11-year-old went into respiratory failure.

 

This was the day Olivia came home

She couldn’t move and was on a ventilator for two weeks, Brandie said.

“Derek and I never left her side, continuing to pray to God that He would heal our girl,” Brandie said. “By the grace of God, Olivia slowly started coming back. Every day we would pray specific prayers and it seemed the next day, they were answered.”

After a few weeks, Olivia was able to move her right arm and hand enough that she could write on a message board.

The physicians advised physical therapy as a method that seems to work with AFM patients. But Olivia wasn’t tolerating movement well with the ventilator tube down her throat. She would gag and throw up, her mom said.

“It was so hard on her,” Brandie said.

The next step, her parents were told, would be a tracheotomy. Derek and Brandie met with the staff who would be performing the procedure. But they felt it wasn’t the right course of action and one doctor agreed with them. Olivia had a trial extubation to see if she could breathe on her own.

“It wasn’t only successful, it was flawless,” Brandie said.

Olivia was then placed on BiPAP to assist with her breathing. She had some food restrictions and also worked with speech therapists. Six weeks after the nightmare began, Olivia was able to come home. She still takes occupational therapy, her mother said, because of weakness in her wrists and hands.

“We’ll continue seeing a neurologist, orthopedic surgeons, and she’ll continue OT, but Olivia is getting stronger every day,” Brandie said.

And even more good news &tstr; just this past week, she confirmed that Olivia will be returning to school April 1.

Marylouise Sholly is a correspondent for The Ephrata Review. 

One Comment

  1. Krystal Schware

    March 23, 2019 at 1:29 pm

    It may be worth checking if they had flu shots or vaccines at a recent time before contracting this condition/disease. A friend of mine in Canada had this EXACT same thing. Hers was found to come from a flu shit she had had before the symptoms started. She can never have a flu shot again. Not that she would choose to.

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