Two children in Chicago have been diagnosed with a rare polio-like illness that is seeing a sudden uptick, mainly in kids, across the US.
Among them is two-year-old Julia Payne, whose symptoms started off resembling those of a common cold.
She is now one of 38 children to develop partial paralysis from acute flaccid myelitis (AFM) in 16 US states so far this year.
The disease most closely resembles polio, but doctors don’t know what causes its terrifying symptoms – or how to treat them besides waiting them out.
Two children in Chicago have been diagnosed with a rare polio-like illness including two-year-old Julia Payne (pictured), whose symptoms started off resembling those of a common cold
THE ILLINOIS CASES
‘[She was] your typical two-year-old before this,’ Julia’s mother, Katie, told the Associated Press.
‘She went in for an X-ray and she couldn’t hold her head up by herself anymore, which was very strange.’
In September, after undergoing a battery of tests, she was finally diagnosed with AFM.
The Centers for Disease Control and Prevention (CDC) doesn’t track AFM in terms of its prevalence, but rather in outbreaks.
Less than a million people are diagnosed in the US annually.
This suggests the pattern of an infectious disease, but much remains unknown about the condition.
Because it only comes on once in a while, its symptoms are often mistaken for something else.
Patients start off having flu-like symptom including sneezing and coughing. This slowly turns into muscle weakness, difficulty moving the eyes and then polio-like symptoms including facial drooping and difficulty swallowing.
Julia has been in the pediatric intensive care unit at Lurie Children’s Hospital for weeks now where she is on a respirator and using a feeding tube because she is unable to swallow.
In September, Julia (left and right) was diagnosed with acute flaccid myelitis (AFM) in 16 US states so far this year. She began having trouble holding her head up after a cold struck her
Julia has been in the pediatric intensive care unit at Lurie Children’s Hospital for weeks now where she is on a respirator and using a feeding tube because she is unable to swallow
Staff at the hospital say she will be discharged Wednesday and transferred to Shirley Ryan AbilityLab, a rehabilitation center where she will face several weeks of physical therapy to regain strength and movement
Staff at the hospital say she will be discharged Wednesday and transferred to Shirley Ryan AbilityLab, a rehabilitation center where she will face several weeks of physical therapy to regain strength and movement.
An unidentified eight-year-old girl from Chesterton, Indiana is also being treated at Lurie’s for AFM.
Her father says she is experiencing some paralysis and has a partially-collapsed lung.
A GoFundMe page has been set up to help the Payne family cover the cost of Julia’s medical bills.
So far, more than $15,300 has been raised out of an initial $10,000 goal.
THE MINNESOTA CASES
Six children in Minnesota are facing paralysis after being diagnosed with the same, rare, polio-like disease in the last month.
They all have acute flaccid myelitis (AFM), a condition that attacks the nervous system and can cause the limbs to go numb and even lose mobility entirely.
It is extremely rare, and its cause is unknown, but a cluster of cases appeared in Colorado children in 2014. Doctors there linked those cases to a virus.
In Minnesota, a new cluster has cropped up astonishingly quickly, with the six kids – all aged under 10 – all diagnosed since September 20, prompting the health department to issue a health alert about the condition.
Quintin was among the first of six Minnesota children last to be diagnosed last month with acute flaccid myelitis, a rare neurological disorder that at least temporarily paralyzed his legs
All of the diagnoses in the state so far have been among kids under 10.
Orville Young is four, and was likely the earliest confirmed case in Minnesota, the Star Tribune reports.
His mother, Elaine, told the outlet that the boy developed a cold in July, but soon he couldn’t move his legs or the upper part of his right arm.
At the hospital, doctors at first thought that the boy might be having a stroke, but fairly soon they hypothesized that Orville had AFM.
Orville’s symptoms had progressed so fast that he even had a hard time breathing. Paralysis of respiratory muscles can turn AFM fatal.
In general, prognoses for AFM vary. Orville has been in physical therapy for the last month. His mobility and gait aren’t perfect, but his legs are mostly functional now. His arm, thus far, remains more or less paralyzed.
‘It definitely affected me and his father much more, emotionally, at least, because we can see into his future,’ his mother told the Star Tribune.
‘When you’re 4 … every time you wake up it’s a big new change. So losing the use of your arm? He said: “I can’t give really good hugs anymore, but I’m doing all of my exercises!”‘
The parents of the other children were far more alarmed than Orville, too.
Two of them – Sophia Ayouche, four, and Quinton Hill, of an undisclosed age – developed stiff necks and arms.
‘[It’s] super scary for us,’ Quentin’s father, James, told the Star Tribune.
‘We had never heard of it. No one had ever heard it.’
The CDC’s graph seems to show increases in AFM cases every other year. So far, the agency has confirmed 38 cases in 2018, and if the Minnesota ones are confirmed, there will be 42
Doctors in Minnesota had heard of AFM, so they could provide rehab (treatment varies and mainly consists of brain and body exercises) and some reassurance to the kids and their families.
But there remain more unknowns than knowns.
A virus may be the primary suspect, but the six Minnesota children live in various cities in the state, so it is unclear if viral spread could be the route of their symptoms.
‘We’re looking into any kind of commonality, but at this point … we don’t have anything to wrap up in a bow,’ Dr Kris Ehresmann, directer of the Minnesota Health Department’s infectious diseases group.
THE TEXAS CASES
Fortunately many make a full or nearly full recovery of their movement as did five-year-old Elizabeth Storrie of Will, Park, Texas.
Her mother Heather told Daily Mail Online that, earlier this year, the active little girl suddenly became stiff and weak.
She’d had what seemed like a mild cold and a lingering cough. Otherwise, she seemed fine.
Elizabeth’s younger brother, Charlie, had a check-up scheduled for a Friday in June, so Heather brought her sick daughter along too.
‘When she walked into my door it was big slap in the face,’ said the family’s pediatrician Dr Diane Arnaout.
But she’d never seen AFM in person, only read about the occasional case in her medical journals. Dr Arnaout thought Elizabeth just had a nasty virus.
Elizabeth Storrie, five, developed the rare neurological condition acute flaccid myelitis. Its symptoms are similar to polio – but doctors don’t know its cause. Elizabeth spent 28 days unable to sit up or stand in a Texas hospital before finally
As she was recovering, Elizabeth smiled crookedly with her pediatrician Dr Diane Arnaout (right) because her condition made one side of her face droop
By Monday, it was clear that something much more serious was happening to Elizabeth.
‘She was unable to sit up or stand, she could hardly move her right arm,’ Heather told Daily Mail Online.
‘We had to lay her on the floorboard of the car on the way to the emergency room, and when we got there she couldn’t bear her own weight to be weighed.’
Perhaps on a hunch, the doctor there ordered an MRI and immediately saw that Elizabeth’s spine was inflamed. If the physician had gotten a CT scan instead this wouldn’t have been clear.
Elizabeth was quickly diagnosed with AFM and transferred to an intensive care unit at Cook Children’s hospital.
AFM almost always begins with one arm or leg suddenly going numb or somewhat limp.
Temporary paralysis to her neck meant Elizabeth relied on a feeding tube while at the hospital here her father, Carl, stayed with her
Sometimes a person’s face may droop or they may lose strength or muscle control in their face as well including slurred speech.
In that sense, Elizabeth’s case was typical of an AFM patient.
Her right arm was mostly immobilized, her neck was stiff and painful and one side of her face drooped.
AFM doesn’t exclusively strike children, but especially as the number of annual cases has increased in recent years, it does seem to afflict them more often.
The larger upswing began with clusters in California and Colorado in 2014.
In those states, officials found that the disease seemed to be shadowing the trajectory of the spread of the EV-D68 virus.
It is classified as a non-polio enterovirus by the CDC, yet it has become the most likely suspect for causing the eerily polio-like symptoms of AFM.
For 28 days, the whole Storrie family – Heather, her husband Carl and their two younger children, Charlie, three, one-and-a-half-year-old Amelia – lived at the hospital, while Elizabeth was supported by IV fluids and a feeding tube with a ventilator nearby in case her condition worsened and she was unable to breath on her own.
Dr Arnaout went to see Elizabeth there.
‘I was terrified. I thought for sure she’d be on a ventilator and wasn’t sure that she’d ever walk through my door again,’ the pediatrician said.
‘But to see how [the disease] froze and didn’t get worse two or three days later was cool, to see she wasn’t getting any worse.’
Slowly but surely, Elizabeth’s condition improved.
‘But it was challenging, for her and us as a family. She was frustrated that she couldn’t do a lot of things she normally could because she’d always been perfectly healthy before this,’ Elizabeth’s mother said.
‘So we just focused on every small improvement she would make, reminding her that these were such baby steps, but that there was such growth going on.’
Elizabeth was in a wheelchair for several months while physical – and pet – therapy helped her regain the strength to walk
Heather (left) goes to swim therapy with Elizabeth twice a week
Carl and Heather looked on proudly seeing their daughter back on her feet (left) and swimming running and biking (right) in the Cook Children’s triathlon last weekend
Elizabeth celebrated her fifth birthday at the hospital, but got to go home two days later. She was in a wheel chair for several weeks, but before long Elizabeth was back up and running again – in the Cook Children’s Hospital triathlon.
‘Now, she’s a thriving kindergartner, enjoying being in school with her friends,’ Heather says.
Speech therapy has gotten rid of Elizabeth’s slur, and she’s continuing to do swim therapy to improve her gait and her her arm, which is still partially immobilized.
It is unclear whether the other three children struck by the disease in Texas this year were so lucky.
‘Elizabeth’s case is not typical,’ her mother says.
‘There’s a wide scope of effects that we’ve seen from AFM – from kids on ventilators to being in wheelchairs to very mild ones, and w’ere just thankful that hers seems to be mild.