Life has been full of victories and setbacks since Kerry Henrikson’s three children developed a difficult-to-diagnose and little understood autoimmune disorder known as PANDAS/PANS.
This month, thanks to the help of Sarnia-Lambton MPP Bob Bailey, Henrikson is celebrating a big victory.
Bailey introduced legislation that officially designates Oct. 9 as an annual awareness day in Ontario for the disorder with the intimidating name of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus/Pediatric Acute-onset Neuropsychiatric Syndrome (PANDAS/PANS).
Henrikson and a few members of the support group she founded were on hand at Queen’s Park to watch the reading of Bill 43 for a second and third time, then passed unanimously by MPPs in the Ontario Legislative Assembly.
“It was really validating to hear people supporting this bill,” she said. “It means they’re recognizing all the struggles our families face.”
Henrikson’s 10-year-old daughter, Lena, was also at the vote.
Lena, brother Jonah, 9, and sister, Marin, 6, each suffer from PANDAS/PANS and are on long-term antibiotics and anti-inflammatory meds to manage the symptoms.
Just a few years ago, Kerry and her husband Chris couldn’t explain a sudden onset of problems that plagued Jonah.
Literally overnight, Jonah changed from a well-adjusted and happy four-year-old to a deeply anxious boy with vocal tics, bizarre fears and hyperactivity.
The family sought help from local pediatricians and went to specialists in London and Hamilton. They spoke to a psychiatrist, then a behavioral therapist and an occupational therapist.
Jonah was misdiagnosed and prescribed Prozac. It didn’t help.
Finally, while desperately searching on the Internet, a blogger suggested to Kerry it could be something she’d never heard of called PANDAS.
It’s believed PANDAS develops in susceptible children who have a common strep infection. In some cases, the body mistakenly attacks the basil ganglia, the part of the brain that controls emotion and body movement.
The Henrikson’s felt Jonah’s symptoms fit PANDAS perfectly, but they couldn’t find a doctor who knew anything about it.
“Doctors tend to treat based on what they learn in medical school and they are still not learning about this,” Kerry said.
An annual PANDAS/PANS awareness day may help convince some physicians to become familiar with the disorder, she said.
The next step is to get the Ontario Ministry of Health to educate doctors about evidence-based research to put PANDAS/PANS on their radar.
Once a patient is properly diagnosed, a specific antibiotic is available that clears up PANDAS/PANS symptoms, sometimes within days.
“It’s a simple fix. These are well-researched and affordable treatments. We just need to get general practitioners on board,” said Kerry.
In Jonah’s case, his parents eventually found Dr. Wendy Edwards in Chatham-Kent, one of the few in Canada that treats PANDAS/PANS.
In fact, since Kerry started PANDAS/PANS Ontario, 300 families have joined, all taking care of a child with the symptoms. About 100 of those families are under Dr. Edwards’ care.
In Sarnia, 15 to 20 families have contacted Kerry in the past two years after suspecting their children had the disorder. They are almost always right, she said.
“Of the 300 families that are members, only one or two have found out it isn’t PANDAS,” said Kerry. “The symptoms are so specific that a parent with the right information can often identify it. The sooner it’s caught, the better.
“That’s one of the reasons we have to get the word out.”
For more information, contact PANDAS/PANS Ontario on Facebook at ppontario or call 519-381-7120.
Doctors can access the most up-to- date diagnostic and treatment guidelines at the Pandas Physicians Network at www.pandasppn.org.