‘In an instant our beautiful son was gone’
Controversial auto-immune disorder called PANDAS has abrupt onset and devastating symptoms
Melissa Tadeson put her bright, active and healthy eight-year-old son on the school bus at 8:15 a.m. Sept. 6.
Two hours later the school called the Smithville mom to say something was very wrong with Lane.
Her husband Carl went to pick up their only child and found instead a completely different person.
“In an instant our beautiful son was gone,” said Tadeson. “He was unrecognizable. It was terrifying. He has never been the same since that moment.”
Her son was suddenly suffering from multiple severe mental illnesses, his behaviour resembled a toddler, he had motor and vocal tics, his emotions fluctuated from weeping to uncontrolled rage and he was talking about harming himself.
“It felt like our son died,” said Tadeson, who is a Hamilton teacher.
“I can’t move past what happened on Sept. 6,” she says. “It takes my breath away when I think of it. We put a fully functioning, well-adjusted eight-year-old on the school bus.”
In the span of a French class, Lane
developed a crippling auto-immune disorder that attacks the brain and is known for its abrupt onset.
Pediatric auto-immune neuropsychiatric disorders associated with streptococcal infections — or PANDAS — is caused by a particular strain of strep that tricks the immune system into fighting the basal ganglia, which is primarily responsible for emotions and fine motor control.
Almost as bad as the disorder are the obstacles the Tadeson family faced in getting proper treatment for Lane.
“We’re completely traumatized by what happened to our son,” said his mom. “Then you march down the treatment path and you are roadblocked, denied, turned away, frustrated and stymied … It’s a path of misery stretched out in front of you.”
They estimate they’ve consulted more than 25 doctors. They’ve turned to two Ontario children’s hospitals for help, faced waiting lists as long as two years, endured a multitude of tests and dutifully given Lane medications that just made him worse.
They claim Lane’s Ontario doctors refused to follow PANDAS treatment guidelines published by an expert panel at the National Institute of Mental Health in the United States despite having no Canadian equivalent.
It took four months to find Lane appropriate care in Edmonton. They fly there once a month at a cost of $2,000 once accommodation is included. Ontario is paying for the actual medical treatment, but that again was a fight.
“A lot of my colleagues are very adamant that this doesn’t exist and I’m not sure why,” said Dr. Wendy Edwards, a consultant pediatrician in Chatham. “It’s very controversial.”
Edwards is possibly the only doctor in Ontario with a specific focus on treating PANDAS. The demand has been so overwhelming that she can no longer take new patients like
Lane.
“We have a wait list that is at least two years long,” she said. “We’ve actually closed the wait list now because I don’t know if we’re ever going to catch up.”
The catch 22 is that early treatment is easy, but there is so much resistance and lack of awareness that few kids get the antibiotics they need immediately to fight PANDAS, said Edwards.
“If you can catch these kids literally right after this happens and get treatment for them, they seem to do pretty well,” she said. “But I’m usually hearing about these kids sometimes years after this has happened to them. That may be a problem. We don’t know. The long-term studies aren’t out on whether or not there is any permanent damage to these kids if they haven’t been treated acutely.”
Lane has been treated for seven months and is improving, but the now nine-year-old is still a long way from the boy he used to be.
“Lane was extraordinarily bright, very articulate, kind, compassionate and funny,” describes Tadeson. “He was an active and engaged little boy. He played soccer, hockey and took swimming lessons. He got As and Bs on his report card.”
He was an adventurer who loved school and didn’t have a shy bone in his body. Now he can barely leave his home, missed most of Grade 4 and has stopped reading and writing.
“He’s scared of literally everything,” said his mom. “He stopped sleeping. He would cry and roll around on the floor. He was hallucinating. He would have uncontrollable rages … He was violent. He would hide under the furniture and we would drag him out and he would kick and scratch … He would say people are coming for him.”
At the same time, his behaviour regressed to resemble a toddler.
“He was calling us mommy and daddy and he hadn’t done that since he was four years old,” she said. “He would sit on our lap and stroke our faces in front of his friends … We are wiping his bum, bathing him, feeding him, cleaning up his vomit, dressing him, sleeping with him at night. All of these things that we hadn’t done with our son for years and now we have to do again.”
His Type 1 diabetes, which had always been well maintained, was out of control. And what frightened them most was his talk of self harm.
“This is my son who didn’t know what suicide even meant on Sept. 6,” she said. “He has talked about hurting himself, suicide or bad thoughts probably weekly since his diagnosis.”
She says Lane has described to her the moment that everything changed.
“He was sitting in French class and he said, ‘One minute everything was fine and the next minute I wanted to throw myself out the window.’ He felt scared and overwhelmed with terrible thoughts in his head.”
The family sought medical help from the very first day. They were told over and over their son had mental health issues.
“Someone doesn’t become mentally ill between putting him on the school bus and picking him up at 10:15,” said Tadeson. “I Googled all his terrifying symptoms and PANDAS keeps coming up.”
He was diagnosed Oct. 19 but it took until Jan. 15 for him to get what his parents consider proper treatment from a doctor they found themselves in Edmonton.
“I refused to accept that this is the way my child would be,” said Tadeson. “He’s a shell of himself.”
The trauma faced by families like the Tadesons might finally be what convinces the medical profession.
“It’s the family stories that really tug at your heart strings,” says Edwards. “It’s unbelievable what these people are going through ... The research is happening and it’s in legitimate journals ... It’s the acceptance of it that has to happen.”
jfrketich@thespec.com 905-526-3349 | @Jfrketich
“A lot of my colleagues are very adamant that this doesn’t exist and I’m not sure why.” DR. WENDY EDWARDS