Why the healthcare system is failing Canadian children with PANDAS disease

Marnie Deschenes remembers the exact day when her life changed. It was June 15, 2013. Overnight, her son went from a healthy child to someone she barely recognized.

“He was like a caged animal. For a solid two months, he was gone from me. He became mute and he could not dress himself. He was stuck; he would go into public places and he would just stand there, completely stiff,” Deschenes recalls.

Nadya Sandy shares a similar story. Last April, a sudden onset of bizarre symptoms overtook her seven-year-old daughter, including the need to urinate every five minutes.

“She was distraught about it… she also started having symptoms of OCD where she felt like she always had to shower after every time she used the washroom. My daughter’s symptoms kept getting worse and she kept telling us, ‘I can’t handle feeling like this. I want to die,’” Sandy recalls.

“I believe that if what happened to my daughter happened 200 years ago, I would be calling a priest for an exorcism.”

Nadya Sandy’s daughter is one of the few children who received a fairly quick PANDAS diagnosis. Sandy believes that getting the word out to doctors, parents, and teachers is crucial in ensuring children do not get misdiagnosed. Photo courtesy of Nadya Sandy

After various medical visits, Sandy realized that getting an official diagnosis for her daughter was not easy. The turning point came at an after-hours clinic in Calgary.

“The doctor said to me, ‘She hasn’t had a strep infection recently, has she?’ I said, ‘No.’ And the doctor said, ‘Well, there is this thing called PANDAS disease but I don’t think that’s what it is because she hasn’t had a strep infection.’”

As soon as she got home, Sandy googled PANDAS disease. For the first time, her daughter’s symptoms made sense.

What is PANDAS?

Sandy discovered that PANDAS, or pediatric autoimmune neuropsychiatric disorders associated with strep infection, hijacks a child’s immune system. The disease occurs when antibodies attack a child’s brain cells, thinking it’s strep bacteria.

Sandy immediately took her daughter to the emergency room at Alberta Children’s Hospital and demanded she get tested for strep.

The test came back positive.

“Before I got that positive test result back, [the doctors] were very reluctant to consider the possibility of PANDAS. The psychiatrist said, ‘You know, I’ve never seen a case of it, I don’t think that is what this is.’”

For Deschenes, it was her son’s school nurse who first mentioned the possibility of PANDAS disease.

Over three and a half years, she saw eight medical professionals before getting an official PANDAS diagnosis.

Dr. Marvin Fritzler recognizes the severe lack of knowledge many healthcare professionals have about the disease.

“If you say ‘PANDAS’ to a group of doctors, they either think you are from outer space or they think you have a disease yourself, just because of the lack of awareness,” says Fritzler.

“PANDAS, unfortunately, is in an emerging area [of medicine] and because of that, a lot of doctors and healthcare providers don’t know what to do or say if you bring it up.”

Marnie Deschenes, pictured with her two sons who have PANDAS, believes all parents need to go with their gut when seeking a diagnosis. Photo courtesy of Marnie Deschenes

A flawed system

While PANDAS has been recognized since the 1990s, it’s still called the, ‘invisible disease’. Treatments include antibiotics, anti-inflammatory medication, and IVIG treatment, yet they vary depending on each child’s condition.

In Sandy’s case, her daughter was hospitalized for two weeks, followed by four months of intense recovery at home. She implores medical professionals to develop an open mind when it comes to making a diagnosis.

“A lot of children with PANDAS have severe symptoms of obsessive-compulsive disorder. That has traditionally been treated as a mental health issue. And now, doctors have to think, ‘Could this have an infectious cause?’”

According to the National Institute of Mental Health, PANDAS symptoms are usually dramatic, happen “overnight and out of the blue,” and can include motor and/or vocal tics, obsessions, and/or compulsions. In addition to these symptoms, children may also become moody or irritable, experience anxiety attacks, or show concerns about separating from parents or loved ones. Photo courtesy of: Stolen Childhood Film

The silver lining

The pervasive lack of awareness inspired Christina Magnoli, a Canadian director, to produce Stolen Childhood, a film documenting Canadian families’ experiences with PANDAS disease.

“It’s tragic what children go through. The pain and suffering that you can’t really see both for the child and the parent; I just wanted to tell their stories,” says Magnoli, whose documentary screened in Calgary on March 16.

“Parents know their child so well. It made me realize that you have to listen to the parent. They see their child almost 24/7, so when they bring them to a doctor, the doctor is not going to see what the parent is seeing. It’s an invisible disease,” Magnoli explains.

The crew behind the film, Stolen Childhood, believe now is the time for awareness, acceptance, research, and progress in the areas of PANDAS. Through their film, they hope to eliminate fear, end the suffering, and continue to make a difference. Photo courtesy of: Stolen Childhood Film

Sandy and Deschenes organized the local screening and invited Dr. Fritzler to speak in a panel discussion.

Fritzler, a professor of medicine at the University of Calgary, is working on a diagnostic testing system that will better inform doctors when diagnosing a patient.

“We’ve done a number of studies using the blood from patients with PANDAS to see if we can identify a unique problem in their blood that can be used then in a diagnostic test,” Frizler explains.

“We can do a test on a single finger-prick of blood and get up to 50-60 results at one time. If a patient has a certain symptom or problem, then we offer tests that will help the doctor come to an early and accurate diagnosis.”

The bigger picture

Other signs of progress include a motion passed in March 2018, calling for the Ontario government to form a PANDAS Advisory Council. Also, in January 2018, the Canadian Medical Association released an article highlighting the growing body of evidence showing a link between strep and OCD.

Sandy and Deschenes view such developments as encouraging.

The women believe increased awareness, coupled with parents’ unwavering advocacy, should result in long-term solutions.

“You know your child best,” says Sandy. “Always keep researching, asking questions, and searching for the doctor that is going to understand.”

Editor: Brian Cortez | mcortez@cjournal.ca