A Canadian mother is sharing her family’s year-and-a-half long search for answers after her son was diagnosed with a rare and controversial neuropsychiatric disorder after battling strep throat.
Corie Entrop says that in 2017, her son Connor came home from school and began pulling out his hair. Concerned for her child’s well-being, the Alberta mother says she begged and pleaded for her then 10-year-old son to tell her why he was harming himself.
“I don’t know,” the boy responded. “I need to pull out my hair.”
Opening up to CTV News, the Spruce Grove, Alta. mother says her son’s hair-pulling became such an obsession, he began developing bald spots, forcing the family to keep his hair closely shaved. At one point, Entrop says her son even tried to pull at the family dog’s fur.
Things took a turn when Connor began having panic attacks and acting out at school. Initially, the family thought his behaviour was linked to his previous ADHD diagnosis, and took him to see a psychiatrist. Entrop says the doctor said her son was suffering from anxiety, and wrote a prescription for an antispychotic.
For the next year, Entrop says her son’s behaviour “waxed and waned” until this past Christmas when he was taken to hospital. Doctors gave Connor a round of antibiotics and he became well enough to return to school.
“That’s kind of when things fell apart,” she told CTV news.
Soon, the family was receiving daily phone calls that the pre-teen was acting out of character. Connor would hide in lockers, turn over desks and run around the classroom – at one point, he would stab himself with a pencil when the teacher refused to answer his questions.
“He would try to jump out of moving vehicles when I was driving. He was threatening suicide a lot. He would barricade himself into his room and string stuff around his neck trying to choke himself out,” Entrop said.
It wasn’t until Connor was admitted to a specialized program at the Glenrose Rehabilitation Hospital in Edmonton that a psychiatrist offered the family a possible explanation for his sudden change in behaviour: PANDAS.
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) is an extremely rare medical condition that occurs when exposure to Group A strep, bacteria responsible for strep throat, causes a “misdirected” immune response in children leading to inflammation around the brain. Instead of fighting off the infection, antibodies begin to attack the basal ganglia, the part of the brain responsible for emotion, behaviour and motor function.
According to the National Institute of Mental Health (NIMH), the inflammation triggers a variety symptoms including Obsessive Compulsive Disorder (OCD), anxiety, physical or vocal tics, changes in personality, sensory sensitivities, restrictive eating and negatively impacts school performance.
PANDAS is a relatively new condition, introduced to the American Journal of Psychiatry in 1998 by Dr. Susan Swedo, a researcher at the U.S NIMH.
Research into the disorder is still in it’s infancy, and without a diagnostic test or blood test to determine PANDAS, with many doctors refusing to acknowledge it as a disorder at all.
“I would say the majority of people still don’t accept that this is a real thing. It’s not in the text books yet. Medicine is very slow about getting stuff into text books,” Dr. Wendy Edwards, a Chatham, Ont. based pediatrician who is one of the few doctors in Canada to treat PANDAS, told CTV. “There are a lot of great websites for physicians, there are wonderful research articles out there, it’s been published in legitimate medical journals, and yet, physicians are very slow to change their minds about things.”
The Canadian Paediatric Society (CPS) refused to take a stance when contacted by CTV, instead saying there are “many factors” that contribute to the organization taking a position, including “availability of evidence.”
Many doctors, like Dr. Daniel Flanders who owns and operates Kindercare Pediatrics in Toronto, are unwilling to say for sure whether PANDAS exists.
“It’s sort of one of those things – and there are lots of these things in medicine – where the jury’s still out,” Flanders said. “A lot of kids have psychiatric symptoms and a lot of kids get strep. It’s very, very plausible that both of those things are happening at the same time coincidentally and you can understand how a parent would connect those and assume that one is causing the other, but it’s not necessarily the case.”
Treatment for PANDAS, according to Edwards, involves antibiotics and psychological support for the condition’s side effects like behavioural therapy to help separation anxiety and depression. Only in extreme cases would patients be prescribed psychiatric medications like antipsychotics.
There are also more invasive forms of treatments for severe cases that would involve intravenous immunoglobulin therapy (IVIG) to give patients antibodies to help fight the infection. Other doctors have also prescribed plasmapheresis, where harmful antibodies from blood plasma are removed outside the body, and returned after treatment.
Despite the controversy surrounding the disorder, many people are speaking out in hopes of spreading word and legitimacy of PANDAS within the medical community.
Kerry Henrikson founded PANDAS/PANS Ontario, a non-profit organization after all three of her children were diagnosed and treated for the disorder by Edwards.
“It took me a year of seeing doctors across Ontario trying to find somebody who would even just test him [her son] for strep or try antibiotics,” she said. Out of frustration, she founded PANDAS/PANS Ontario in 2014 to help other families facing similar struggles.
The group helped establish Oct. 9 as PANDAS/PANS Awareness Day by contacting Henrikson’s MPP Bob Bailey who passed the day into law in 2015. PANDAS/PANS Awareness Day is also observed in Saskatchewan, Alberta, British Columbia and more than 30 U.S. states.
The group also created an online petition urging the Canadian Paediatric Society to educate the more than 3,000 physicians that belong to the organization on the condition and it’s treatment. So far, the petition is just 2,000 signatures short of it’s 5,000 signature goal.
As for Connor, since being diagnosed with PANDAS, he has underwent a three-week course of antibiotics in June, which Entrop says has produced immediate results; his hair pulling stopped and he was noticeably less stressed.
“It’s like I have my old kid back,” she said. “He’s still Connor. He still has ADHD. He can still be a pain in the butt, but he’s healthy again.”
Although things have improved Entrop admits she’s still fearful of the future for her son, now 12-years-old.
“I’m terrified,” she said. “We have to be really cautious about not getting him exposed to strep and that’s scary because it’s hard to control that. A strep virus for him can result in a psychiatric illness and an episode for him.”