"It's a disease from hell."
That's how Marnie Deschenes describes the illness that struck her oldest son just before his 8th birthday.
"He just started to rage like a caged wild animal," said Deschenes as she recalls the day in June, 2013 when — as the family was out running errands — she witnessed a sudden and dramatic shift in the little boy's personality.
In the days that followed, her son's unusual behaviours continued to become more erratic. He started repeatedly pulling up his knees, twirling, slamming toilet seats and tapping washroom faucets.
"This would happen repetitively, excessively. It began to consume his daily life," she said.
It all appeared to come out of nowhere and as time went by her son had violent outbursts, separation anxiety, and there were even times where he would become mute.
"The child is locked inside of themself and they can't get out. And as a parent you can't get in," said Richard Deschenes who fights back tears as he recalls the impact of the debilitating illness on his young son.
The search for answers
The Deschenes went from doctor to doctor in search of a diagnosis but no one could explain the sudden shift in his personality.
A year and a half later, it was a school nurse who suggested the Deschenes' son may have a little known condition called PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections).
The couple eventually ended up taking their son to a clinic in the United States where he was diagnosed and treated.
"That was a long 3.5 years of seeing psychologists, psychiatrists, hoping that there would be somebody there to help us come out of this deep dark hole," said Marnie.
"I never thought I would have to fight this hard for something...And then when I went to the U.S and the doctors said your child has this, my chest pains lifted."
The couple's youngest son went through a similar personality shift two years later and was eventually diagnosed and treated for PANDAS as well.
What is PANDAS?
In PANDAS it's believed a strep infection triggers the child's immune system to mistakenly attack the brain, causing sudden onset of symptoms which can appear to come out of nowhere — such as obsessive complusive behaviours.
PANDAS falls within the umbrella diagnosis of PANS, or Pediatric Acute Onset Neuropsychiatric Syndrome. The link to a strep infection is what distinguishes PANDAS patients.
According to the U.S.- based National Institute of Mental Health (NIMH), PANDAS generally appears between the ages of 3 and 12 with symptoms developing suddenly including obsessive compulsive behaviours, tics, bed wetting, separation anxiety, refusal to eat and difficulty sleeping.
Calgary child psychiatrist, Dr. Nina Gudeon, says the condition is characterized by flares — when symptoms worsen — and the first step in treatment is often a course of antibiotics to eliminate the underlying strep infection.
The change, she says, can be dramatic.
"Most kids will respond and usually within 24 to 72 hours. And that's meaningful because OCD, rage, sleep disturbance shouldn't improve with antibiotics. But in the context of PANS it can," she said.
But PANDAS is not universally understood or accepted among doctors and, according to Gudeon, many families struggle to get help for their children.
"Yes there are clinicians who have heard about it, who are knowledgeable. But there are many more who have not even heard of it or if they have there is misinformation," she said.
Gudeon, who started treating kids for PANDAS in 2018, admits the condition wasn't on her radar until recently either.
"I think in part because it's not part of our education, our training...and because it's so new to medicine," she said.
According to Dr. Marvin Fritzler, professor in the Cumming School of Medicine at the University of Calgary, it's typical for some physicians to be both "early" and "late adopters" when a new diagnosis emerges.
"It's changed a lot over the last five years. But I think there is still a lot of uncertainty in the medical community...about PANS and PANDAS and how you make the diagnosis and how you treat the condition," he said.
Fritzler, who has been involved in scientific research looking for a test that will allow doctors to diagnose the condition earlier and more accurately, says the symptoms of PANS and PANDAS overlap with a dozen or more other neuropsychiatric problems such as autism.
And that — he says — is one of the big problems.
"The whole area of research and the clinical approach to PANS and PANDAS has increased a lot. The information has increased. The ability to make a more accurate diagnosis has improved. But that being said, there still is a bit of gap that we are looking to fill. And that is...finding a reliable diagnostic test," he said.
Another gap, according to Fritzler, is in education and training. He'd like to see medical schools incorporate more information about PANS and PANDAS.
"So that young physicians coming up right from day one are aware of it, know about it and know how the diagnosis is made and know the options for treatment. Right now, for the most part, that's missing," he said.
Alberta Children's Hospital PANDAS pilot
One sign of the pendulum is swinging toward wider acceptance can be found at Alberta Children's Hospital, where a pilot project launched in May 2019 to help children with suspected and confirmed cases of PANDAS.
The PANDAS clinic is open to patients in Calgary and southern Alberta — once a month — and includes doctors and nurse specialists from child psychiatry and pediatric rheumatology.
"The consultation clinic was established to provide interdisciplinary, family centred care to this patient group, similar to how care is provided for pediatric patients with other rare diseases of complex health care needs," an Alberta Health Services (AHS) spokesperson said in a statement emailed to CBC News.
The clinic sees approximately ten children per month and also provides support to caregivers.
Other organizations are working to improve training for physicians who may encounter the condition in their practises. The Canadian Academy of Child and Adolescent Psychiatry has provided presentations on PANDAS at its annual conferences as a way to help its members learn more about it.
Several years on, Marnie and Richard Deschenes have emerged from the darkest time in their lives with a new focus: to help other struggling families.
"There is hope. And we want to let other parents know that it's there," said Richard.
The Deschene's regularly hear from families across the country and spend countless hours trying to connect desperate parents with information and support.
"[I know] in my heart these families need a broader platform to be able to find the proper resources, to find doctors, and to know how to gain the right supports in their communities," said Marnie.
The Deschenes are now working with other Calgary parents to set up a national charity to raise awareness, promote research and provide families with information on where they can find local doctors willing to consider a PANDAS diagnosis.
"They're literally stonewalled. They have nowhere to go. That's an excrutiating situation for families... it creates a vortex of pain," said Richard.
"We know what we experienced for 3.5 years. And nobody should experience that."