PANDAS/PANS Ontario – Interview with Founder, Kerry Henrikson

Tell us about some of the work that PANDAS/PANS Ontario has led and/or been involved in over the last decade?

Kerry H: Ten years ago when PANDAS/PANS Ontario first incorporated, the most pressing issue we faced was convincing the community at large that these conditions even existed and that there was tremendous value in pursuing PANDAS and PANS as a differential diagnosis in children suffering with the associated symptoms. After the creation of our online caregiver support group, we hit the ground running with this mission in mind. Within the first six months we held an information session and book reading with Beth Maloney Esq., author and PANDAS advocate, and a Q & A panel with parents and teens from an established Michigan, US PANDAS support network. 

Parents travelled from across Ontario to attend, we attracted local politicians and professionals and most noteworthy was the interest we received from CTV’s W5 program producers. W5’s Lloyd Robertson was passionate about mental health and he and his team filmed our event for their investigative journalism program titled “The Strep Connection” where they explored PANDAS and PANS as well as the unfortunate controversy brewing over the diagnosis. This event served as the official launch of the non-profit organization and really confirmed for us that there was a huge need for this kind of advocacy within Ontario and that we could really make a difference for families. 

We continued our fundraising and advocacy events steadily over the next several years through the help of an amazing and dedicated volunteer network. We took our fight to Queen’s park in 2015 when legislation was passed creating a PANDAS/PANS Awareness Day in Ontario and we continued to work with the Ontario government to pass a motion to create a PANDAS/PANS task force for Ontario. 

We organized local television interviews to spread awareness, hosted screenings for the PANDAS documentary “My Kid is Not Crazy”, a luncheon and Q & A with PANDAS/PANS specialist Dr. Ayla Wilson, ND. We consulted and participated in the filming of the “Stolen Childhood” PANDAS documentary and hosted screenings for this award-winning documentary. 

We’ve exhibited at several Canadian Paediatric Society and other relevant medical conferences and were very fortunate to also be able to collaborate with so many motivated parents across the province eager to join the fight by providing information resources for them to use for their own local awareness initiatives. Many of our families planned film screenings, open houses, event exhibitions, town halls, letter writing/informatics campaigns and we were happy to be able to provide brochures and other helpful information like any new and available research papers, treatment guidelines or support services. 

The most pivotal event for our organization was when we hosted Dr. Susan Swedo M.D., in an effort to push awareness forward within our medical community. Dr. Swedo was the lead neuroscientist and paediatric researcher in the field of PANDAS at the time with the US National Institute of Mental Health (NIMH). She discovered the connection between PANDAS symptoms and strep and spearheaded much of the progress that has been made in creating this new disease model. 

During her visit we coordinated important meetings for Dr. Swedo at the London’s Children’s Hospital. She and Dr. Wendy Edwards M.D., a PANDAS/Autism specialist, performed Grand Rounds at the Chatham Hospital while medical professionals from across Ontario tuned in through our hospitals’ virtual network for CME credits. Dr. Swedo’s visit concluded with an impactful presentation alongside Dr. Wendy Edwards to a packed conference room full of parents, doctors, politicians, teachers and other invested and supportive professionals. The night definitely exhibited how far our organization and PANDAS/PANS awareness in general had progressed!

All of these amazing opportunities exhibited that there is an important story to be told on behalf of PANDAS/PANS families and that it is indeed a remarkable one. Despite the critics who choose to ignore the science and the truth in our stories, change can and will happen. We were fortunate to see even some of the biggest skeptics convert to believers when presented with the undeniable changes these brave and special children exhibited when given the proper diagnosis and treatment.

What would you say has been the biggest accomplishment and/or most rewarding part of founding PANDAS/PANS Ontario?

Kerry H: The most rewarding and by far the most successful accomplishment that came from the founding of PANDAS/PANS Ontario is the network of support that was created for Ontario families and providers through our online support group and other measures we took to connect with those in need. When a support network was not available in a particular province or country, we would also welcome those in need and do our best to provide resources to them as well. The families have always been at the centre of our mission and we always tried to keep what was best for them at the root of all of our decisions.

Over the past ten years, our Facebook support group has grown to include over 1700 members with new people still requesting to join daily. It has been a lifeline at times for many of us, me included, when we just don’t know how to keep going or when we just need to be some place where we feel heard and understood. There is a wealth of information within the group including information on how to access good medical care, techniques and treatment outcomes for various challenges, connections to many different kinds of local resources and so much more. 

At one point, it was customary to send virtual casseroles to struggling members as a way to support those who were maybe not receiving much understanding and support from the people around them who don’t have the lived experience to truly understand the pain and trauma of this whole experience. I know many close friendships have been made in this group that will no doubt endure through time. 

We have also answered thousands of emails and direct messages, provided resources to families, teachers, physicians and other professionals, enjoyed parent meet-up nights, and locally were able to offer in person consultations as well as act as a resource/support person for families liaising with their child’s school and community professionals. 

The truly amazing thing about this network that just keeps spreading across our province and country is seeing the desire and determination from so many people to pay it forward once they are well and able to do so. This entire disease model for PANDAS/PANS, right from the beginning has been moved forward because of people who have been affected or know someone living this difficult experience. In my opinion, what we have all accomplished here at home and internationally as the wider PANDAS community is nothing short of a miracle considering the trauma, pain and heartbreak that can come when PANDAS/PANS affects one’s family.

What is the reason for dissolving PANDAS/PANS Ontario?

Kerry H: The decision to dissolve PANDAS/PANS Ontario has been an arduous one and one I have been regrettably, delaying for as long as possible. When you know that something is needed so badly and when you are so invested in its success it’s a crushing disappointment, to put it mildly, when you’re unable to continue investing in its future. I adored every minute spent working on behalf of our mission and would have done this forever if my situation would have allowed for it. 

PANDAS/PANS Ontario has always been a volunteer run organization with no outside funding but it worked well and we were fortunate to be able to facilitate the work we did do for as long as we did. When it became necessary for me to step back at first for health reasons and then for a return to full time work, when the volunteer pool shrank over the years and when the organization and the people we support grew larger than our capabilities to support them effectively, then the discussions began about how to move forward in the interest of the people we support. 

Our Board of Directors and myself, all in agreement, decided to approach the Inflamed Brain Alliance (IBA) charitable organization who have been establishing themselves as a national effort for PANDAS/PANS within Canada for a few years now. With the success of IBA and their steadfast mission to support families, remove barriers to care and move research forward, we knew we could dissolve at this point and confidently transfer our resources and support for our families over to IBA. 

Not only are we certain that the founders and Board of Directors at IBA have as much, if not more, drive to ensure seamless support continues; we believe that merging under one organization at this time will have a positive impact on much needed progress. It will unite our community, streamline resources and create one recognizable place to seek help in Canada.

What resources can Ontario families dealing with PANDAS/PANS access in the future?

Kerry H: I’d love to let everyone know that even though I will continue to be a less visible advocate of PANDAS/PANS at this time, I am not planning on disappearing completely. I will continue to volunteer my time on certain projects and events when I have the ability to do so and I will also be present and as available as I can be throughout this initial transition. I have a decade of connections and knowledge to contribute and still plan on doing that in any way I can. I also have a decade of memories that I will cherish and hang onto as I continue this journey of caring for my three children with PANDAS/PANS and for my own health as I fight to eradicate Lyme Disease from our lives too. 

Our Ontario online support group will be archived, meaning posting will be closed going forward but it will remain visible to all members with all of the information within it accessible as well. We will also be able to join IBA’s new Facebook support group and their regional and national virtual peer support groups, which can be found on their website. 

While there will always be growing pains when facing a big change, I know that if we can all work together and put our full support behind IBA, we can create a lasting and effective place for Canadians to access a full range of resources and support.

Any other thoughts you’d like to leave for families dealing with PANDAS/PANS?

Kerry H: My advice for anyone new to this challenging journey is to find support wherever you can and lean on those of us who understand your lived reality. Find many ways to provide breaks for yourself and take quality self-care time. If the time comes where you are burned out and depleted, then listen to your body and take the necessary steps to process everything that has happened to your family. These are all steps that are important and will greatly aid your situation. 

There is too much information to learn all at once and too many treatments to try all at once. Manage your time well and try not to get too swept up in trying to learn and figure everything out all at once. Find what works well for your child, your family and try not to compare with other families; you know your child and your situation best. 

Forgive yourself. It will be hard. Some days you will make progress, other days you will regress. And celebrate every single step of progress because you will deserve it. We had a party the first time my son was able to happily put on and keep on socks for an entire day! No win is too small when it comes to PANDAS/PANS! 

I am thinking of all of you often and all of those who have yet to find connection. As we all hope for a future where our children will be diagnosed and treated promptly and accurately, I plan on hanging onto that vision; a future where PANDAS/PANS education is widely accessible, all children are screened regularly, and where our children are understood, accepted, and seen for the bravery and resilience they possess in spades. 

I am grateful for every one of you who has crossed my path and who made the past ten years of PANDAS advocacy possible with your support and generous donations of time, money and resources. You’ve all made such a difference in so many lives! Wishing you all good health and happiness. 

Stay strong when you must, rest whenever it’s needed and never ever lose hope.