Anna Berg, a mother of three, sat exhausted on the couch as she described the strange behavior her daughter started to display earlier this year.
“On March 19 she came inside and sat on my lap. Her right side was shaking. I asked her what was wrong and she didn’t respond,” Berg said.
Zelenah Berg was an active and social second-grader in Taber, Alberta, until mysterious symptoms took over her body and personality.
“It’s not the same, she’s not the same sister I used to have… it’s sometimes very hard,” her older sister Delaney told Global News.
Berg said the family’s concern grew as Zelenah’s symptoms got worse.
“On May 6 she passed out 17 times… she starts to bark like a dog after,” Berg said.
After multiple trips to local emergency rooms didn’t provide any answers, the Bergs took Zelenah to Monterrey, Mexico.
There, a team of more than five doctors observed her for two days, finally diagnosing her with PANDAS syndrome; a rare disorder that affects children usually between the age of four and 12.
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PANDAS is an acronym for pediatric autoimmune neuropsychiatric disorder, and is associated with strepticoccial infection.
Dr. Ayla Wilson is one of just a few doctors in Canada that diagnoses and treats PANDAS syndrome.
The Vancouver physician said PANDAS itself is not contagious but the originating bacterial infection — strep throat — is.
“It’s really the child’s immune system’s reaction to the strep, so what’s innately going on inside them and their immune system, that produces that inflammatory response in the brain,” she said.
It’s likely Zelenah will be treated with antibiotics and other medications to reduce the inflammation in her brain.
Dr. Wilson said an estimate on the number of children affected by PANDAS is approximately one in 200, but she thinks that number may be artificially low because of the number of cases that go undiagnosed.
She also says many physicians will treat the symptoms of PANDAS with drugs used to address psychological disorders.
The Berg family hopes to generate more awareness of PANDAS syndrome, so that Zelenah and others can get the help they need.
Family and friends have set up a GoFundMe page to cover costs associated with Zelenah’s treatment and travel costs.
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