The parents of a West Quebec boy who spent two years in a medical "nightmare" are urging Canadian doctors to follow the U.S. lead by taking a closer look at a psychiatric disorder in children that's caused by a bacterial infection.
Suzy Wiggins Fournel and Martin Fournel told CBC News their son Caleb, now 8, was diagnosed in the spring with pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections, called PANDAS for short.
He was prescribed antibiotics for one year, and today, Caleb is back climbing trees again at his home in La Pêche, north of Ottawa. He's a far cry from the boy he was prior to his diagnosis, when he could barely leave the house.
At that time he suffered severe anxiety, symptoms of obsessive compulsive disorder (OCD), vertigo, pain in his throat and ears, hallucinations and concentration problems.
His parents said the problems seemed to happen overnight.
'We just couldn't believe what was happening to him ... he was a different boy.' - Suzy Wiggins Fournel, Caleb's mother
"We just couldn't believe what was happening to him," said Wiggins Fournel.
She said just a few days after a throat infection, he became "a different boy." He walked off the school bus, fell to his knees crying and said he felt sick.
Hospital staff dismissed symptoms
They took him to a hospital in Gatineau, Que., but his parents said medical staff dismissed his symptoms and suggested he was trying to avoid school.
Things got steadily worse.
An independent and outgoing child suddenly didn't want to go outside, became hypersensitive in clothing and complained of pain in his head. Teachers told his mother he began hiding in the bathroom and in his locker. Each doctor they consulted had a different diagnosis; some prescribed anti-psychotic drugs to deal with some of the psychiatric symptoms, such as OCD.
Wiggins Fournel still gets emotional when she remembers Caleb asking her to kill him.
"'I can't live like this,'" she said he would tell her. He was 5½ years old.
The parents sought help from the Children's Hospital of Eastern Ontario in Ottawa, Sainte-Justine Hospital in Montreal and the Montreal Children's Hospital.
But earlier this year, Caleb's parents saw a report on television describing a form of sudden onset psychiatric disorder in children triggered by group A strep infection.
"My wife was watching the report on television and started crying," said Fournel. "All the symptoms described in the program matched what was happening to our son."
They sought help from Dr. Wendy Edwards in Chatham, Ont., one of the few doctors in Canada who recognizes and treats the condition. After a test for strep infection, Edwards prescribed penicillin, and within just a few days, there was a dramatic change in Caleb. According to his parents, most of his symptoms disappeared.
He was diagnosed as having pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections.
The U.S. National Institute of Mental Health has published the criteria for diagnosis. The theory is that streptococcus, common in many schoolchildren, triggers for some a neurological reaction with sometimes severe psychiatric symptoms, including OCD.
There is still some debate about the diagnosis, but it is becoming more recognized, with clinical trials for treatment ongoing in the U.S. The Canadian Paediatric Society (CPS) does not make any recommendations for doctors about how to treat PANDAS.
'No one in Canada is tracking it." - Kelly O'Donnell, PANDAS Canada
That's a problem, according to Kelly O'Donnell, who founded the advocacy group PANDAS Canada. She said she gets emails each week from families having difficulty finding resources in the Canadian medical community.
"No one in Canada is tracking it and when no one is willing to diagnose it, it's even harder to track," O'Donnell said.
The Stittsville, Ont., mother's own daughter became suddenly ill in 2013 with strange tics and severe OCD-like behaviour, but in this case, an emergency-room doctor at the Children's Hospital of Eastern Ontario had heard of PANDAS and did a throat swab to test for strep antibodies.
Families seek more medical understanding
O'Donnell and her husband didn't understand how there could possibly be a connection to strep, but they were willing to try anything, she said.
When the test came back positive, doctors prescribed her daughter with antibiotics "and 24 hours later, 90 per cent of the symptoms were gone," she said.
There are more than 150 families who have joined an Ontario chapter of the PANDAS support group, she said, and they're asking the CPS to bring the issue out of the closet so frontline clinicians can consider the need for a throat swab test for strep when confronted with the symptoms described by the National Institute of Mental Health.
The Fournels are telling their story hoping for the same goal — they don't want families to suffer or put their children on psychiatric drugs if it's not necessary.