Doctor Shares the Moment She Knew This Girl Had the Terrifying Polio-Like Disease

Elizabeth Storrie
Facebook/Cook Children's (Pediatrics - Willow Park)

When Dr. Diane Arnaout got an emergency visit from 5-year-old Elizabeth Storrie, she never imagined that the girl would be one of the growing number of children diagnosed with a rare polio-like disease called acute flaccid myelitis (AFM). The Centers  for Disease Control and Prevention (CDC) has been investigating the recent uptick in children diagnosed with the serious condition, but luckily for Elizabeth, her doctor is now sharing the miraculous story of her recent recovery.

  • Arnaout shared on Facebook the exact moment that she knew something was very wrong with the little girl in order to help raise awareness.

    In a now viral post from October 8, Arnaout wrote that when Carl Storrie brought his daughter into her office in June, she could immediately see that the child was very, very sick. 

    "She looked stiff. She looked like she was in pain. Her face was grimaced. What in the world? Why was this very healthy 4-year-old being carried in? My stomach sank," she wrote.

    Carl told the doctor that his daughter had been running a fever and "seemed under the weather," but as far as Arnaout could tell, the little girl's vitals looked fine. 

    “I think this is something viral. Why don’t you let her rest this weekend and let me know how she’s doing next week?” she recalled telling them. But only three days later, the Storries would be bringing Elizabeth back into their office "like a limp, broken doll." 

    "She screamed in pain whenever her head was turned. Her neck was stiff, rigid. She hadn’t been eating much and wouldn’t drink. She was having a hard time talking," Arnaout wrote. "I was really worried she had meningitis. She was in so much pain she had to lay on the floor of her parent’s car to get to the office."

    Elizabeth's parents told the doctor that they had taken Elizabeth to the emergency room earlier in the weekend, where they were told it was pneumonia so they tried antibiotics. But the treatment didn't work as planned, and the neck pain that Elizabeth was suffering from only got worse. 

    Both Arnaout and the ER doctor she spoke with on the phone agreed that most likely Elizabeth was suffering from meningitis, but she sent Elizabeth over to Cook Children’s Emergency Room anyway. 

    "Barely one hour later, the ER doctor called me -- 'It’s acute flaccid myelitis,'" Arnaout wrote. 

    "This was almost a myth. A pediatric rarity. 'The rare polio-like illness that's affecting kids across the country.' A disease that affected less than one child in a million," she added. "I’d only read about this in medical journals."

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  • Doctors noticed that Elizabeth was suffering from severe dizziness, her right arm wasn't working very well, and her "face was drooping on one side."

    Elizabeth's mom, Heather Storrie, told Arnaout that doctors in the ER warned her that Elizabeth may never walk again. They told her that Elizabeth "may need a breathing machine for the rest of her life. She may not live. They were absolutely terrified," the doctor wrote. 

    The CDC describes acute flaccid myelitis as a "rare condition [that] affects a person’s nervous system, specifically the spinal cord." The medical organization reported that 38 cases of the disease in 16 states have been found in 2018 so far and notes that there is no known reason why children contract the disease.

    Arnaout says that the disease is called a “polio-type illness [....] because this disease looks exactly like polio" (a contagious viral illness that in its most severe form causes nerve injury leading to paralysis, difficulty breathing and sometimes death, according to the Mayo Clinic).

    "Except, it’s not polio. It’s a brother of polio -- not a cousin, or a distant relative -- a brother. And it is a terrifying reminder of what polio used to be (and hopefully will never be again)," she added. 

    Elizabeth's vitals were being monitored round the clock and a breathing tube was placed down her nose to help her get food and nutrients. "They had a ventilator ready in case she started having difficulty breathing. They propped her very weak, very flimsy right arm up on a pillow. Everyone watched her. The intensivists, the neurologists, the infectious disease doctors and I all wondered what the next one to two days held," Arnaout explained.

    "There is no treatment for acute flaccid myelitis. None. Doctors have tried steroids, anti-inflammatories, immune system medications, antivirals, antibiotics -- and nothing changes its course," she added. So instead the doctors observed Elizabeth and waited, hoping that they could find an answer while they supported her through her illness.

  • But then a miracle happened. Elizabeth's symptoms started to peak and then they plateaued.

    In a follow-up post, Arnaout said that Elizabeth hasn't made a full recovery just yet, but after her symptoms began to plateau she was able to do simple things again such as watch TV, move around more, and was even more talkative. "Her neck was still very painful ... but it was more tolerable," Arnaout added. 

    Doctors transferred Elizabeth to the rehabilitation center at Cook Children's and worked with a team of specialists to help her restore her physical abilities. Heather tells CafeMom that her daughter was discharged from the hospital on June 30 and now she "goes to outpatient rehabilitation/ therapy twice a week."

  • Over the weekend, Elizabeth participated in the "Tri My Best" Triathlon -- something her doctor could have never imagined her doing only months ago.

    The triathlon was created by the Cook Children's rehabilitation team and it was truly a victory for both Elizabeth and the community of people who had watched her through the worst of her illness.

    "I got to watch her shine as she biked, ran, and -- her favorite -- swam alongside other children who have been fighting their own battles," Arnaout described. "I watched this little warrior with tears in my eyes."

    And the doctor warns that she didn't share the story to scare parents. "The truth is, less than one in a million kids get this disease. And no matter what the headlines say or what social media says, it's very rare and unpredictable."

    Heather tells us that she hopes other parents can learn something from her daughter's struggle. "Prayer is powerful -- her story is a testimony to that," she says. "Rely on your community of family and friends. They brought us meals and lifted us up throughout the entire process."  

    And she echoes the doctor's message about the rare probability that this disease will affect your family. "This is extremely rare so very unlikely to strike your family," she says, "but trust your mom gut when you know your child is very ill."

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