A local family is hoping a barbecue put on this weekend at Save On Foods in north St. Albert will help raise awareness for an obscure disorder that progressed in a matter of weeks in their daughter.
Greg Hebb said his 11-year-old daughter, Eden, suddenly began experiencing Tourette-like symptoms and uncontrollable vocalizations last March, and he said symptoms got “exponentially worse” very quickly.
After seeing a specialist in Edmonton, tests found the strep throat virus in Eden’s system, although she was not displaying symptoms of strep.
This led doctors to diagnose her with PANDAS, which stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcus.
While most children will fully recover from strep throat, sometimes they will develop sudden physical and psychiatric symptoms, including obsessive compulsive behaviors, tics and unusual movements.
This is an indication of PANDAS, the cause of which is still under research. A PANDAS fact sheet from the International OCD Foundation says research indicates the disorder is caused by the body’s immune response to strep, not the infection itself.
“It does set in just zero to 100 in a matter of weeks,” Hebb said. “It will be an ongoing battle, it’s not just a simple take a pill and things get better. It’s a process to get it under control.”
For Eden, her symptoms are involuntary vocalizations and body movements.
Children who experience PANDAS will continue to experience symptoms until the infection is fully treated, and it can be managed if caught early with antibiotic. If they persist, treatment includes standard OCD treatment, such as cognitive behavioral therapy and medication.
Hebb said having PANDAS has had “quite an impact” on Eden, who he describes as a very social and outgoing child.
“It’s fairly big and it plays on anxiety and excitement so if it happens in public, she’s aware of it (but) fairly uncontrollable to stop doing it.”
Travelling throughout British Columbia this summer exposed Hebb and his daughter to many situations where her symptoms would present in public places and people ignorant of the disorder would respond negatively. He said restaurant workers have tried to shush Eden, not realizing about her medical condition.
This is why Hebb wants to raise awareness about the disorder, to create a deeper understanding amongst the public.
“You do a lot of explaining all the time,” Hebb said.
“Be understanding of medical conditions. That’s what I would like to see people come away from this with.”
The grill will be fired up for hot dogs between noon and 3 p.m. on Sunday at Save on Foods, 740 St. Albert Trail. Food is complimentary, but donations will be welcome for PANDAS research.
Save On Foods store manager Chris Coward said Hebb and his family are regular customers and Coward wanted to help spread the word about a disorder that is so little-known.
“I don’t think there’s a lot of people out there that really have a clue about it, so kind of good to get the awareness out there. Especially for this young girl, (be)cause it’s pretty hard on her,” Coward said.
“Talking to Greg, the things that they kind of have to put up with on a daily basis. The more people that know about it, the better.”
