A Chatham mother and teacher has made it her mission to raise awareness about her son's little-understood condition.
Amelia Vilaranda, who is a teacher at Ursuline College in Chatham, says her son Julian was a perfectly healthy, normal child before the Easter weekend of 2015 when he developed a sudden onset of debilitating obsessive compulsive disorder.
Julian Vilaranda. (Photo provided by Amelia Vilaranda).
"We were getting upset at him not understanding what was going on. He then proceeded to hit his head constantly saying 'Something is wrong in my head mommy. I think I have a tumor. Something is wrong. My brain is stupid mommy, I don't know what's going on,'" says Vilaranda.
After about three weeks of no answers and confused doctors, Vilaranda says her son was finally diagnosed two and a half years ago with Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). This disease affects roughly one in every 200 people, yet very little is known about the condition and most people are unaware of it. Vilaranda says she was lucky enough to find Dr. Wendy Edwards in Chatham, who is the only doctor in Ontario specializing in PANDAS.
"I think initially, part of the reason why it might of taken a bit longer for him to get diagnosed was possibly because when you speak to him, he comes across as an extremely intelligent boy, very eloquent and very articulate. He has no problems talking to anyone, he is very social," explains Vilaranda.
According to Vilaranda, strep throat is often the cause of PANDAS. She says how the disease works is that instead of the body's antibodies attacking infections, they attack the part of the brain that is responsible for the person's cognitive abilities.
She says Julian initially responded to medications and treatments, but then took a turn for the worse during flu season at school.
"Once illnesses hit the classroom and kids were vomiting around him and getting sick, his symptoms started escalating. It then became a trial and error with antibiotics not working," she says.
She says there hasn't been a day in exactly one year that Julian has been symptom free. Due to his illness, Julian has been home-schooled since March. Julian is now 11-years-old.
Vilaranda has also had to deal with a health battle of her own. She had to take off a semester after being diagnosed with breast cancer for a second time.
Vilaranda says her colleagues at school have helped her plan and organize a bowling fundraiser at Bowlerama in Chatham On October 14. She says they've managed to sell out all lanes between the hours of 6pm and 8pm. Chatham-Kent-Essex MPP Rick Nicholls also plans to be there, as well as Dr. Wendy Edwards. She adds that there will be raffles, door prizes, and information pamphlets on the disease. All proceeds from the event will go to PANDAS Ontario.