PORTLAND — One girl is in a Portland hospital paralyzed from the neck down and another, who’s been discharged, is hobbling around with a brace. They don’t have polio, which would cause similar symptoms. But doctors have no idea what’s wrong.
There is no cure, at least not yet, but their syndrome has a name: acute flaccid myelitis.
“It’s a living nightmare,” said Mikell Sheehan, mother to Bailey, who was discharged in December.
The Sheehans, who live in Welches, have become close with an Albany family, whose 7-year-old daughter, McKenzie Andersen, is in Randall Children’s Hospital, with feeling only in some fingers and toes.
Bailey, the first Oregon case, became paralyzed in her right leg and arm at the end of October.
“Nothing has changed in her paralysis,” Sheehan said. “What has changed is that her therapist has taught her how to walk using a brace and a walker. If she has her brace on, she can get around fairly well.”
A total of 107 children in 34 states have the same mysterious syndrome, said Dr. Richard Leman, public health physician at Oregon Public Health Division. About a third of the cases tested positive for enterovirus D68, which swept across the country last year, killing five children. Sheehan said Bailey, now 8, tested positive for the virus.
Leman said results for enterovirus D68 are pending on Oregon’s second case. Two-thirds of the patients nationwide have improved, but only one child is cured, according to the Centers for Disease Control and Prevention.
In September, Colorado health authorities first notified the CDC of nine children in a Denver hospital who had suddenly developed an unexplained neurologic illness with limb weakness. That month, the CDC put out an advisory, asking neurologists to be on the lookout for patients. They’re defined as children 21 or younger, with an acute limb weakness who became ill after Aug. 1 and who have lesions in the central part of their spinal cord.
Both children in Oregon fit the case definition, Leman said.
“It is kind of scary,” he said. “One case of this is too many, clearly.”
Treatment is supportive, just like polio, which was eradicated in the U.S. in 1979 thanks to nationwide vaccination program. But there is no treatment for acute flaccid myelitis. Doctors don’t even know what’s causing it.
It started in the Sheehan household in Welches with flu-like symptoms at the end of October. Everyone was sick, including Sheehan’s 4-month-old baby and her son, who’s 5 years old.
But Bailey was hit the worst. She had a headache — it felt like an apple pressing against her eye, she said — along with back and neck pain. Six days later she lost feeling in her right leg and arm.
Back and forth to the hospital, Bailey was admitted to Randall Children’s Hospital in November.
Sheehan said the hospital ran a battery of tests – for West Nile virus, Guillain-Barre syndrome and autoimmune diseases. Those were all negative, Sheehan said.
Bailey has to take medication three times a day and has frequent appointments with various practitioners to dull the pain, paid for by a GoFundMe account, Sheehan said.
Her daughter is learning to cope, but once an easygoing, cheerful child, Bailey is now easily angered. Sheehan is trying to gather information, in part by participating in a Facebook group for victims and their families. So far, there are 30 members from Oregon to New Hampshire. They comfort each other online and on the phone and share news.
Sheehan is also working on a fundraiser for McKenzie Andersen. It will be held 2 to 6 p.m. on Feb. 22 at Pizza King, 231 Lyon St. S.E., Albany. The Andersens also have a GoFundMe site to help pay for medical expenses.
McKenzie is expected to be in the hospital for months, Sheehan said.
