Amelia Vilaranda. April 2, 2018. Photo by Sarah Cowan Blackburn News Chatham-Kent). Amelia Vilaranda. April 2, 2018. Photo by Sarah Cowan Blackburn News Chatham-Kent).
Chatham

Chatham Mother Plans PANDAS Conference

A Chatham mother is organizing a conference that will feature top doctors to shed light on her son's little-understood condition.

Amelia Vilaranda, who is a teacher at Ursuline College in Chatham, says it was three Easters ago that her son Julian started to develop symptoms of Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS).

Julian Vilaranda. (Photo provided by Amelia Vilaranda). Julian Vilaranda. (Photo provided by Amelia Vilaranda).

"On Easter Monday, I remember being the first person probably at the doctors office at my family doctor saying 'Something is not right, my child has had a horrible weekend,"' she says. "That's when we saw that Easter weekend, three years ago, this incredible OCD...we had no idea what sort of journey we were about to enter."

She says many illnesses and viruses can trigger her son's condition, so he falls more under the category of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

"What PANDAS or PANS causes in a child is extreme OCD... I can't stress enough how extreme it is...ticks...extreme anxiety...It basically [gets] to a point where a child can't function properly," explains Vilaranda. "They can't get dressed, they can't shower by themselves...they can't attend school."

Vilaranda says Julian has improved since he received a second IVIG, which is an immunoglobulin transfusion of healthy antibodies from thousands of donors.

"This second transfusion took place on February 16 and since then it was almost like night and day," she says. "He changed completely. [It was] the best we've seen him [in] over a year."

Vilaranda says Julian still has little episodes, but far less severe than before. She says the transformation has been huge.

She says she has been working with PANDAS Ontario to organize a Southwestern Ontario PANDAS/PANS Symposium for people to learn the latest information about the condition.

Dr. Wendy Edwards, Chief of Pediatrics at the Chatham-Kent Health Alliance (CKHA), is currently the only doctor in Ontario specializing in PANDAS. Vilaranda says Dr. Edwards has been a "Godsend," but there is only so much one person can do.

"I said 'You know what? We need to do something about it.' Of course there's PANDAS Ontario that is there fighting and then I've had a lot of people helping with fundraising, so I wanted to say 'This where your money went towards'...to education," says Vilaranda.

The event will be hosted at Club Lentinas in Chatham on Wednesday, May 9. Registration starts at 6pm and presentations begin at 6:30pm.

"I was very excited when the director of PANDAS Ontario agreed to have it right here in Chatham, where our own Dr. Wendy Edwards is," says Vilaranda. "The other panel speaker will be Dr. Susan Swedo."

Dr. Swedo is the Chief of Pediatrics & Developmental Neuroscience Branch at the National U.S Institute of Mental Health. According to Vilaranda, Dr. Swedo is the top pedetrician in the U.S specializing in PANDAS and actually coined the disease's acronym.

Vilaranda says she hopes this is the first of many more conferences in Ontario and Canada and will be the start of some groundbreaking research.

"We are hoping to obviously target people in the medical field, mental health care professionals, teachers, anyone that deals with children, and of course parents," she says.

Vilaranda says the CKHA is also on board with the event and has been absolutely amazing at helping promote the conference. She says other sponsors have come forward to help, like her husband's company Handy Bros Climate Care.

Tickets, which include appetizers, cost $30 and can be purchased online. This fee is waived for medical students.

For more information call 519-437-7720, email swos@pandaspansontario.org, or visit the PANDAS Ontario website.

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