Servus Charity Challenge Spotlight: Inflamed Brain Alliance

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The Servus Charity Challenge unites the spirit of runners through a unique fundraising program with the main purpose of creating healthy communities that thrive together. One of the 100+ charities participating this year is the Inflamed Brain Alliance. Inflamed Brain Alliance is on a mission to bring together those within and beyond the PANS PANDAS community to improve health outcomes, deliver education, and accelerate research to find a cure. Below is a Q&A with co-founders Marnie & Richard Deschenes to help us learn more about PANS PANDAS and the work that Inflamed Brain Alliance is doing!


Q: What are PANS and PANDAS?

A: PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a disorder caused by a misdirected autoimmune response to a strep infection in the body. However, it’s not the strep bacteria itself that’s the culprit, but rather the body’s immune reaction to the strep that causes the inflammation in the basal ganglia of the child’s brain. PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) is a broader diagnostic category used when an infection other than strep or a non-infectious trigger is creating the neuroinflammatory response.

Q: What are some of the key symptoms of PANS PANDAS?

A: Often with a sudden onset, key symptoms include OCD, tics, eating restrictions, severe anxiety and separation anxiety. There may also be emerging aggressive behaviours, signs of regression, and new cognitive deficits in working memory, executive functioning, math, and handwriting. Some children suffer severe sleeping difficulties, bed wetting, urinary urgency and ‘brain fog.’ Many children also develop sensory issues for example misophonia, (sensitivity to sounds) and new onset fidgeting with concentration and attention issues. Hallucinations (tactile, visual, and auditory) and psychosis-type symptoms can also be present.

Q: What is the prevalence of PANS PANDAS?

A: There hasn’t been a large population study on the incidence of PANS or PANDAS, so we don’t know how common they are. PANS and PANDAS are often overlooked by medical doctors because of the assumption that there is not an underlying medical cause for the patient’s psychiatric symptoms. To diagnose PANS PANDAS, a patient must fulfill the criteria based on clinical presentation. Even with the 2017 treatment recommendations published by the PANS/PANDAS Research Consortium, consisting over 30 experts and the NIMH, many Canadian doctors are still reluctant to adopt a new way of thinking when it comes to treating psychiatric symptom presentation with medical interventions. At the IBA we know how frustrating this is for Canadian families to not have a doctor on board. Faced by this reality, many families are forced to make the difficult decision of either continuing to watch their child deteriorate or seek costly out of the country private healthcare.

Q: Who gets PANS PANDAS?

A: According to current PANS PANDAS data, there is no age requirement for a PANS diagnosis, but symptoms typically begin during the grade-school years. Patients can also have their initial symptom onset during adolescence. PANDAS requires symptom onset prior to puberty based on studies that indicated that 98% of 12-year-olds have immunity against strep infections and therefore could not develop a post-streptococcal condition such as PANDAS. However, this would not exclude patients from receiving a PANDAS diagnosis, if all other criteria were met.

Q: When did it all start for your family?

A: We remember very clearly the exact day our older son’s life dramatically changed – it was in the afternoon of Sunday, June 9, 2013. He began exhibiting very sudden and bizarre OCD-like symptoms within 24 hours after an out-of-the-blue rage episode. As Calgary’s historic floodwaters were rising, our son’s OCD symptoms were also rapidly rising, and within two months he would stop talking and could no longer dress himself. It was an extremely scary and confusing time for our son, and our family.

Q: How did you become aware of PANS PANDAS?

A: It was the end of the 2014 school year wrap-up meeting with our son’s Teacher’s Assistant to go over his IPP. During this meeting we were relayed some discerning information that would better explain what happened to our son in 2013. The school nurse didn’t think our son had primary OCD, but possibly PANDAS, a condition we had never heard of. She provided us with a printed copy of the 2013 JCAP (Journal of Child and Adolescent Psychopharmacology) article, “Clinical evaluation of youth with PANS: recommendations from the 2013 PANS Consensus Conference.” As we read, re-read and highlighted the article late at night before bed, we couldn’t believe how much our son’s clinical presentation related to what we were learning.

Q: How has PANS PANDAS affected your family?

A: The journey our family has been on with PANDAS has been described by PANS PANDAS families as a marathon journey of mental and physical struggles. Less than a year after our older son was diagnosed, our younger son was also diagnosed. By this time in our journey we had found a local PANDAS specialist. We learned by speaking with other families that it was not uncommon for multiple siblings to be diagnosed. Our older daughter didn’t have a diagnosis, but she became the “glass child” – a sibling of two brothers with a life altering disability. As parents we were hyper-focused on helping our boys at the expense of inadvertently neglecting our daughter who kept up a strong appearance. Over a decade later, our family has experienced complex trauma as a result of the burden of this disease.

Q: What inspired you to form the Inflamed Brain Alliance (IBA) charity?

A: In 2016, we boarded a plane for Washington, DC where our son was diagnosed and treated by a pediatric neurologist specializing in PANS PANDAS. During the same trip, we attended the PANDAS Network conference. It was during that time where we found community. We made connections with the founder of the PANDAS Network and other PANS PANDAS parents, including some from Canada. Upon our return from DC, we began fiercely advocating — declaring the first October 9 PANDAS PANS Awareness Day in Alberta, hosting a film screening and panel discussion for the PANS PANDAS documentary, “My Kid is Not Crazy” and meeting with the head of psychiatry at our local children’s hospital to catalyse multidisciplinary PANS PANDAS efforts.

Q: What gives you hope for the future of PANS PANDAS?

A: Seeing affected children beginning to get earlier intervention and treatment because of IBA’s efforts in growing support for our Canadian PANS PANDAS community. As we continue to band together in our purpose, planning, and action – systemic changes are beginning to happen.

Q: How can people donate to the Inflamed Brain Alliance?

A: You can donate online at https://inflamedbrain.org/donate/ or through the Charity Challenge HERE.

Thank you for running or walking for those who can’t. Your support in raising awareness and funds for the “Inflamed Brain Alliance for PANS PANDAS” team makes a huge difference for our small (but growing) community. Have a wonderful race knowing you’re helping ”bring health to mind.”

Marnie & Richard Deschenes, Board Co-Chairs & Co-Founders for IBA

Learn more about the Inflamed Brain Alliance:
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