Two years ago, Noah Castellani was a calm, well-adjusted seven year-old boy. His life in Surrey, British Columbia was much like any other kid his age – attending school and playing hockey on the weekends.
But one winter’s day, all of that changed. Noah’s mother, Leslie, distinctly recollects the moment she realized something was wrong with her son. It happened while Noah was playing hockey at a local rink.
“I started to see him hopping on the ice, hopping like a bunny rabbit. He had a two minute shift and he would hop 30 times,” she said.
Leslie had never seen Noah do anything like this. When she asked him why he was acting this way he answered that his body “told” him to do it.
Within a week, Noah started acquiring strange new behaviours – vocal tics which evolved to grunting, and motor tics like eye rolling. Soon he began having frequent angry outbursts and worst of all – smashing his head against hard objects like tables and walls.
It was as if he’d become a different child.
“It was really tough watching our previously happy go lucky son, fun loving son, funny son, become something that you didn’t even know,” Leslie told W5.
When Leslie consulted with doctors, she was advised that he might have Tourette syndrome – an often inherited tic disorder. But Tourette syndrome didn’t run in the family and doctors said they needed to observe a year of sustained tics to make a diagnosis. With a follow-up appointment scheduled four months later, Leslie looked for more information online.
PANDAS
That’s where she learned about a little known medical disorder affecting children called PANDAS – an acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The testimonials Leslie read on the internet matched Noah’s behaviours, including the sudden and dramatic onset of his symptoms.
Researchers from the U.S National Institute of Mental Health (NIMH), who proposed PANDAS in 1998, defined several diagnostic criteria but the most important characteristic of the disorder was that Obsessive Compulsive Disorder (OCD) and tic disorders like Tourette syndrome are triggered by Group A strep infection. The hypothesis that a bacterial infection like strep throat – a common bug that affects many school aged children – could be linked to mental or neurological symptoms was ground breaking and controversial.
The NIMH researchers suggested that in some cases of strep infection, a child’s immune system goes awry. Instead of attacking the strep, a child’s antibodies mistakenly attack a part of the brain – the basal ganglia - believed to be responsible for movement and behaviour.
But almost twenty years after PANDAS was proposed, many Canadian doctors still remain unaware of it. And a scientific debate amongst neurologists, psychiatrists, pediatricians and infectious disease specialists about the evidence linking strep infection to OCD and tics has led some doctors to question whether PANDAS even exists.
For Leslie Castellani, even getting a doctor to test her son, Noah, for strep with a throat swab or a blood test to measure antibodies was no easy feat.
When Leslie took Noah to a medical clinic and asked for him to be tested the doctor resisted. Noah didn’t seem to exhibit symptoms of strep throat. However, some children can have strep without exhibiting classical signs of the infection.
Only after Leslie broke down in desperation, did the doctor relent and agree to test Noah for strep. And days later, the test came back positive. The doctor prescribed a seven day dose of antibiotics and amazingly, Noah’s symptoms subsided almost immediately.
“Two days into the antibiotics the tics went down by 90%,” said Leslie.
Controversy over the strep connection
Leslie and Noah were relieved – but when the antibiotics ran out Noah’s tics came back with intensity. PANDAS symptoms are sometimes characterized by a waxing and waning pattern – depending on the persistence or recurrence of infection.
But controversy around PANDAS and the strep connection have impacted the way doctors treat children who exhibit symptoms of OCD or tics.
“Controversy exists around PANDAS, there’s no question about it. And I think the main reason for that is we just don’t understand the condition well,” said Dr. Ran Goldman, a pediatrician at BC Children’s Hospital in Vancouver.
While antibiotics are almost universally prescribed for strep infection, most doctors are generally reluctant to prescribe antibiotics long-term – fearful of dangerous bacteria that build resistance to those drugs or of destroying gut flora essential to overall health.
Doctors reluctant to prescribe long-term antibiotics – as well as those who are skeptical or unaware of PANDAS often primarily treat symptoms with therapy and psychiatric medications like Zoloft or Prozac for OCD.
As a result, children who suddenly present with OCD and tics, and their parents, are often caught in the middle of the controversy around PANDAS and the discrepancies in treatment.
Many families of children with PANDAS symptoms go from doctor to doctor, looking for answers and direction.
“I wanted someone to help lead me through this. Nobody wants to watch their child deteriorate so quickly and feel like they can’t get anywhere in the medical system to get the help that the child needs,” said Leslie Castellani.
After being frustrated by a series of pediatricians and specialists, Leslie and Noah finally turned to a naturopathic doctor, Ayla Wilson. In British Columbia, naturopathic doctors are allowed to prescribe antibiotics. After initially treating Noah with antibiotics and other medications, Wilson added natural supplements to boost his immunity and recommended dietary restrictions.
And now, two years after his symptoms first appeared, Noah’s tics and rages are all but gone. Still, Leslie Castellani believes that his behaviours could resurface.
“I am well aware that I have several years more of this. But I know we’re heading in the right direction and that’s pretty exciting. I have my son again.”
