Saskatoon mom shares story after son gets rare disorder often misdiagnosed as mental health issue

Parents and health officials are gathering at the University of Saskatchewan to raise awareness about a rare disorder that drastically changes behaviours, overall nature of one in every 200 children.

PANS disorder often misdiagnosed, rarely treated

Rachelle Adams said her son was a completely different person following a strep throat infection that triggered a rare disorder known as Pediatric Acute-Onset Neuropsychiatric Syndrome. Affecting one in 200 children, the disorder can cause drastic changes in behaviour and is often misdiagnosed. (Rosalie Woloski/CBC News)

Rachelle Adams's son went to school a happy, outgoing and energetic kid, but when he got home, she says her son was a completely different person.

"It was like someone flipped a switch or changed-out our kid completely," Adams said in an interview with CBC Radio's Saskatoon Morning.

Described as a dance enthusiast, a math whiz and a sociable youngster, the strange behaviour — which included issues with sleep, eating and anxiety — started shortly after he caught a case of strep throat in June 2018, which Adams noted was "running rampant" at the boy's school. 

ER doctor quick to recognize disorder

It was only when Adams recounted these symptoms to a doctor during a visit to a Saskatoon emergency room that she heard of Pediatric Acute-Onset Neuropsychiatric Syndrome, or PANS, which can be caused by infections like strep.

A disorder that essentially turns the body's immune system against the brain, the condition affects roughly one in 200 children and is often misdiagnosed and rarely treated.

James Purnell, a family physician in Saskatoon, will be at the Prairie PANS conference taking place at the University of Saskatchewan on May 30-31, 2019. He says it's important for families to be aware of Pediatric Acute-Onset Neuropsychiatric Syndrome, or PANS, as it can cause permanent behaviour changes in children if left untreated. (Rosalie Woloski/CBC News)

Saskatoon physician James Purnell was introduced to the Adams family after the family's emergency room visit. He said the fact the disorder was recognized so early was critical, as the disorder can become permanent.

He said it's common for PANS to be diagnosed as a mental health issue, which can result in patients seeing several different doctors and receiving numerous treatments without success. 

He said often, parents won't recall to their doctor about a previous infection, like strep, which he noted "can be a challenge for a physician."

PANS conference at U of S

In an attempt to raise awareness about PANS, Purnell will be at the University of Saskatchewan attending the Prairie PANS conference running May 30 and 31.

The conference's website says the conference aims to ensure all children with PANS are getting the proper treatment through "awareness, education, and professional training."

Aimed at health officials and parents, the event will feature a number of guest speakers, including chief of the National Institutes of Mental Health's pediatrics and developmental pediatrics neuroscience branch, Dr. Susan Swedo. 

Adams will also be attending the conference and said she's sharing her story to ensure other parents are aware of the disorder and the effects it can have on a child. 

"I want parents to know their is hope," she said, noting her son is back to normal and thriving. "He is the exact same kid."

With files from CBC Radio's Saskatoon Morning


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