Saskatchewan family encounters gaps in Lyme disease care, seeks help from elsewhere

On the morning of March 31, three-year-old Brinkley Koski woke up with a surprising new personality.

Her mother, Kerri Archibald, said Brinkley developed sensory issues, mood lability and verbal and motor tics overnight.

“It was scary,” Archibald told Global News.

“Prior to that, she was just a happy, healthy, active three-year-old.”

After several visits with the pediatrician and a neurologist, the family discovered the problem: Pediatric Acute-onset Neuropsychiatric Syndrome (PANS).

The rare, infection-induced autoimmune disorder is caused by inflammation of the brain, according to Anxiety Canada.

PANS triggered by Lyme Disease

The infection that triggered PANS in Brinkley is likely Lyme disease, Archibald said.

But getting that diagnosis wasn’t easy.

The family struggled to find PANS specialists in the prairies who were readily available, so they paid out of pocket for care from naturopathic doctors at High Five Family Health in Vancouver.

“Unfortunately, lots of people from our area have had to go there to seek treatment just because of the lack of specialists,” she said.

“Immediate treatment (provides) the best outcome for these kids and we just weren’t willing to wait that long.”

The doctors in B.C. recommended tests for Lyme, which came back inconclusive. When the family sent a blood sample to Germany, it came back positive.

Canada needs to improve its Lyme testing, said Janet Sperling, a University of Alberta researcher who studies the bacteria associated with ticks.

Getting a diagnosis requires two positive blood tests, but those tests don’t consider all of the different types of Lyme disease, Sperling said.

“Unless they want to … increase and broaden the number of borrelia (the bacteria that causes Lyme disease) that they’re looking at, we are missing people,” she said.

A spokesperson for Saskatchewan’s health ministry said the province uses the best available testing for Lyme disease, which are the standard two tests across Canada.

Treatment also a problem

The family plans to continue to seek care out of province, Archibald said, due to the lack of specialists able to help her daughter.

An online fundraiser for Brinkley has raised about $30,000 to help cover the costs.

Sperling said there needs to be a clinic in Canada geared toward treating Lyme disease.

“If you’re going to have to send people to multiple different specialists, you have to make sure that you do that fairly quickly, especially with a child,” she said.

Brinkley is currently taking antibiotics to treat both ailments.

“We’re definitely seeing our daughter return to us,” Archibald said.

“We know that we have a long fight on our hands to remove the Lyme and to get her brain … back to normal.”