Family of Salem girl with rare illness: 'It's scary to know they really don't know'
Doctors say a 10-year-old girl from Salem may have a rare condition called acute flaccid myelitis, an illness that causes paralysis and weakness.
Breea Shelton of Salem has been in the hospital for five days and is now receiving treatments at Dorenbecher Children’s Hospital in Portland.
Doernbecher Pediatric Neurologist Colin Roberts said Breea had symptoms of the unusual complication that they believe is brought on by a viral infection.
“That’s not the case with all children with this condition. In some kids we may suspect something else, and in other children we may never find a cause at all,” Roberts said.
Two weeks ago the Centers for Disease Control and Prevention said there were eight children in Washington who had AFM. Oregon health officials confirmed there had been three cases in Oregon this year. All of those people had been released from the hospital.
The rare disease affects the nervous system and causes sudden weakness in a person’s arms and legs, along with loss of muscle tone and reflexes.
According to Breea’s great uncle, Max Marshall, the symptoms started showing up early Friday morning. He said Breea started losing feeling in her left side, going limp, and her neck was acting funny.
“It’s especially challenging because Breea is non-verbal autistic,” said Marshall. “She can’t tell you ‘my pain is worse’ or ‘my pain is better.’ She can’t verbalize anything. So it is really a guessing game for her grandma, her mom, and her dad. The doctors are asking them if she’s feeling better … because you can’t ask her.”
The exact cause is unknown but many viruses and germs are linked to AFM. Doctors say it is not contagious.
Roberts tells KATU News that in rare cases, which is a possibility for Brea, it can affect the higher parts of the nervous system like the face or ability to swallow.
“She’s having trouble swallowing, so she can’t really eat much. She can’t drink anything so they’re giving her the IV,” said Marshall. “It’s challenging to give her medication. You can’t give her a pill because she wants to spit it out.”
“We see many kids with weakness either during or following infections that otherwise look like common viral infections – cough, cold, sneeze, what have you,” said Roberts.
As of now, there’s no known treatment for AFM.
“Unfortunately for this condition, we don’t have a good treatment yet. But we’ve offered (Breea) a number of other treatments to rule out other conditions, and we’re trying to keep her safe as best we can,” Roberts said.
For now, Marshall said the family is holding out hope that Breea will be turning the corner to recovery soon.
“She’s an amazing girl. Super smart, very active, and very playful. We just hope she gets back to where she was,” Marshall said.
“They’re doing everything they can but there’s just not much known about this,” he continued. “It’s scary to know they really don’t know what’s going to help and what’s not.”
Oregon Public Health Division spokesman Jonathan Modie says to help prevent the illness people should practice good hygiene.
“Encourage your kids to wash their hands, cover your cough,” he said.
“If a child or adult is experiencing any kind of weakness at all, they should see their health care provider immediately,” Modie told KATU last week.
Roberts is hopeful that another approach can help. He explained that an "IVIg", or intravenous immuno-globulin, is essentially giving Breea plasma that fights infection.
"A lot of the therapies we have to offer don’t necessarily reverse the symptoms, but they halt the progression of the condition. So when we introduce a therapy we like to see that at the very least someone is not getting worse. And I’m encouraged that by what’s she showing right now that that’s the case."
The Shelton family is from Salem, staying in Portland as long as they can. There is a go-fund me set up as 'Fund Breea' if you would like to help with their expenses.