LEVITTOWN, NY — Terri Woodruff knew something wasn’t right when her 15-year-old son, Alec, developed a strange, hollow-sounding cough. It was Oct. 4, 2018, a day she still vividly remembers.
“It actually sounded hollow, like if you coughed into an empty pitcher,” she told Patch on Wednesday.
It sounded so strange that she kept him home from school the following day and brought him to the pediatrician that evening. Despite her gut feeling, doctors listened to the boy’s cough and cleared him to return home. They told her there was nothing wrong.
But Woodruff, a 52-year-old single mother, couldn’t shake a nagging feeling that this was no common cold or cough. And while neither she nor doctors knew it then, Woodruff was right. Something far more sinister had infected her child. He had contracted a rhinovirus — a cold — and it settled in his spinal cord. Once it gets to the spinal cord, its goal is to kill the host.
The cold developed into an extraordinarily rare disease known as acute flaccid myelitis, or AFM, which affects the nervous system, specifically the area of the spinal cord known as gray matter. The body’s muscles and reflexes become weak. Most people have a sudden onset of arm or leg weakness and loss of muscle tone and reflexes. In some cases, more severe symptoms can include respiratory failure and serious neurological complications that could lead to death.
Last year, there were just 236 confirmed cases of AFM in the United States, including seven in New York. Overall, there have been 596 confirmed cases since the federal Centers for Disease Control and Prevention began tracking the disease in August 2014. More than 90 percent of the cases involved children. Most of the patients — over 90 percent — had a mild breathing illness or fever consistent with a virus before they developed the disease.
“Viral infections such as from enteroviruses are common, especially in children, and most people recover,” the CDC wrote on its website. “We don’t know why a small number of people develop AFM, while most others recover.”
Alec, like most kids, developed a slight fever after the initial cough. Despite taking acetaminophen and ibuprofen medications, the fever and cough lingered. The following Wednesday, Oct. 10, Alec took a turn for the worse. Terri found him on the couch around 4:30 a.m. with his hands wrapped around his neck.
“He goes, ‘I’ve been waiting for you, Mama. I think if I move my hands, my head is going to fall off,'” Woodruff said.
She rushed her son to the pediatrician, thinking he might have meningitis. The two were then redirected to an emergency room at NYU Winthrop. Doctors there ruled out meningitis and initially diagnosed him with acute disseminated encephalomyelitis, or ADEM, which is similar to AFM. Both show polio-like symptoms, except AFM goes to the brain.
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While hospitalized, Alec’s larynx began to close, and doctors hooked him up to breathing machines. Initially, breathing tubes were placed into his nose, but when those didn’t help, doctors hooked him up to a breathing mask that covered his mouth and nostrils. Alec was also given steroids.
“I’m flipping out, because I swear I’m watching my kid die right there before me,” Woodruff said.
After four days of intravenous steroids, Alec’s condition never improved. Feeling helpless and desperate, Terri Woodruff made the difficult decision to move her son. She scoured the internet looking for the best hospitals when it comes to treating ADEM. NYU Langone in Manhattan popped up, so she picked up the phone and dialed.
“NYU said he won’t make the ride,” she said, holding back tears. “That he was dying.”
Doctors intubated Alec so he could survive the ride to New York City. Once there, doctors placed him into a medically induced coma, where he remained for about eight days. After two weeks in a medically induced coma, patients can suffer brain damage.
At one point, doctors learned Alec was partially paralyzed on his left side.
“His eye, his nasal passage, his ear, the left side of his mouth, everything all the way down to his foot and everything in between,” Woodruff said.
After 27 days at NYU Langone, doctors told her she needed to find a rehab facility so her son could begin physical therapy. The steroids he’d initially received prevented the disease from destroying his body. He was moved to Blythedale Children’s Hospital.
“It’s an incredible, unbelievable place,” she said. “They have their own little school. Their own hospital. It’s like a village.”
After a couple weeks, he began using a harness and wheelchair. He started taking classes, too. But even as he appeared to recover, Woodruff was told not to get too optimistic. She had to get used to the idea his condition wouldn’t improve much, and her home would have to be upgraded in order for him to come home.
Woodruff upgraded her home’s electricity to support a breathing machine. Handicap bars and a bench were installed in her shower. She had to become CPR certified.
In early December, things were looking up. He had regained feeling on his left side. Terri was able to get him up and out of bed without using a hoist.
On Dec. 13, a therapist told Woodruff to get her phone. Alec had a surprise to show her.
“I thought he made me something for Christmas,” she said.
She took out her phone and walked out to her son. She watched as two therapists helped him stand — and walk.
“It was the happiest day in my whole entire life,” Woodruff said, unable to hold back tears. “And we’ve never looked back.”
Months after being told not to expect much of a recovery, Alec, now 16, is thriving.
He’s enrolled at Division Avenue High School and attends 11th grade classes with a walker. His friends help him tie his shoes or put on his jacket. An aide carries his belongings. He uses an iPad or scribe to do schoolwork.
Before he fell ill, Alec was days away from obtaining his second-degree black belt in karate. School and karate came first, even before friends and girls. In fact, Kempo Martial Arts of Levittown had offered him a job.
While it may seem like a long shot now, Alec’s dream is still to earn that belt. And if history means anything, it’s a good bet he’ll make it happen.
“That’s his motivation in all this,” Woodruff said. “He vowed that one day he’ll get back into karate. That was his passion.”
As her son continues his journey, Woodruff hopes her son’s story will serve as a warning to other parents to trust their instincts. When Alec had a “weird” cough, she wouldn’t let it go, even when medical professionals told her he was fine.
Furthermore, she wants other parents going through similar situations to never lose hope.
“It’s no longer about Alec and me,” she said. “It’s about every kid that gets diagnosed after him. We need to show them that it’s possible to get better.”