It sure seemed similar to symptoms that accompany a cold, so Jennifer and David Ruiz didn’t make much of it when their 6-year-old son, Noah, complained that his arms felt “kind of funny.”
“It just progressed from there,” Jennifer Ruiz said.
In the next three days, at the tail end of August, Noah started to lose function in both of his legs and arms. The Sycamore family immediately headed to Lurie Children’s Hospital in Chicago, where doctors determined Noah is battling a rare polio-like condition called acute flaccid myelitis.
A news release from the Illinois Department of Public Health sent Friday afternoon reported a 10th suspected AFM case in the state — all of them in northern Illinois, all of them in children younger than 18.
The virus affects the nervous system and causes inflammation in the spinal cord, which in turn causes muscles and reflexes in the body to weaken and in some cases become paralyzed, according to the Centers for Disease Control and Prevention; AFM is closely related to polio, and there is no known cure.
Noah has been in the hospital since Sept. 3. His mother said his paralysis spread to both lungs, requiring doctors to intubate him, conduct an MRI and CT scan and perform a spinal tap to check Noah’s spinal fluid in order to narrow down the diagnosis to AFM. As is the case with all the other children, Noah’s diagnosis is preliminary because only the CDC can confirm it.
Two weeks ago, Noah went into cardiac arrest because he wasn’t getting enough oxygen.
“He turned blue, and they lost his pulse,” Jennifer Ruiz said.
Doctors began chest compressions and were able to revive him. When AFM causes muscle inflammation, the body begins to attack the muscles, thinking they’re the center of the virus.
Noah has had a team of doctors in Chicago since birth. He received a heart transplant at 10 weeks old after being diagnosed in utero with dilated cardiomyopathy, which causes the left ventricle of the heart to enlarge and weaken, decreasing its ability to pump blood.
Julia Payne, a 2-year-old from Batavia, also is being treated for AFM at Lurie. Julia’s symptoms also seemed similar to those of a cold, Julia’s mother, Katie Payne, said. Her daughter went in for an X-ray and could not hold up her own head. She has been in the hospital for months.
On Wednesday night, Julia was moved to the rehabilitation center at Lurie, where she will undergo months of extensive physical therapy to regain movement in her arms and neck.
“The transition was as smooth as can be, and (Julia) is still full of sass,” Payne wrote on social media. “We are counting so many blessings tonight as we reflect on this surreal journey.”
The first cases of AFM appeared in the country in 2014, according to the CDC, and have been connected to environmental toxins, genetic disorders and viruses such as West Nile, adenovirus and enterovirus.
Although much still is unknown about AFM and a singular cause cannot be identified, the IDPH lists symptoms that can include sudden onset of limb weakness and loss of muscle tone and reflexes, facial droops and weakness, difficulty moving the eyes, drooping eyelids, difficulty while swallowing and slurred speech.
The IDPH advises anyone exhibiting these symptoms to seek immediate medical care and to make sure children’s vaccinations are up to date.
AFM can be hard to diagnose because it shares many of the same symptoms as other neurological diseases. Although there are no specific treatment options, doctors who specialize in treating brain and spinal cord illnesses might recommend certain interventions on a case-by-case basis, such as physical therapy to counteract muscle weakness once a patient is stable.
Julia’s doctors found a treatment option in plasmapheresis, a type of dialysis which cleans the blood’s plasma.
Noah’s treatment is ongoing.
On Thursday, doctors finally removed the tube from Noah’s throat, allowing him to breath without one for the first time in more than a month. Noah still is connected to a bypass machine, however, which allows him to wear a breathing mask with oxygen being pumped into his healing lungs.
Jennifer Ruiz said Thursday that Noah, who has two brothers, Ian, 9, and David Jr., 7, was sitting up playing Minecraft on his tablet and seemed in high spirits.
“It’s been a really scary experience,” she said. “We keep hope going for him so he doesn’t get scared.”
She said Noah will have to relearn to walk, and still does not have much function in his left arm. Because of his medical history, doctors said Noah might never regain full function in his arm. He also was able to undergo plasmapheresis like Julia and has recevied a blood transfusion.
“It just takes time for your body to rebuild the tissue around the muscle, and to regain strength and movement,” Jennifer Ruiz said.
She and her husband hope to eventually have him continue his therapy in Sycamore.
The Associated Press contributed to this report.