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How I Came To Understand PANS Part 1

Nov 15, 2021
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This weekend I read an article in Psychology Today by Stephen Porges and Polyvagal Theory.

Stephen Porges would have been my dream professor when I was in college and graduate school. Polyvagal Theory put into words what I had wanted to understand for many, many years.

In my early education, I was looking for a mentor who was merging the fields of psychology, physiology and immunology.

Most people in these fields were puzzled or discounted my ideas when I asked questions about the relationship between our feelings and our health, or the relationship between our health and our mental state.

Looking back, I realize that during my education, my interest in these fields was greatly influenced by my search to understand what had happened to a beloved family member.

Photo courtesy of Dulcey Lima

The Beginning of the Journey to Understanding PANS

When I was very young, one of my family members was diagnosed with “manic depression”; which was the 70’s terminology for bipolar disorder.

I remember observing this family member very closely, watching the changes in physical health, mood and behavior. I was deeply affected and worried by the changes I saw.

Over many years of study and work on myself, I have come to believe that my beloved family member was suffering from the impact of autoimmune encephalitis (PANS) and severe childhood trauma.  I observed the symptoms of both of these things in my family member, but I couldn’t make sense of it.  

When I was In college, I had my first opportunity to explore 1-2 classes that were related to the field that became known as psychoneuroimmunology.

In one of those classes I learned about the stress-diathesis theory (the interplay of nature vs. nurture). You can read about it here

Photo courtesy of Balu Gaspar

The stress-diathesis theory basically says that we may have a biological vulnerability to certain issues, but that environmental factors play a significant role as well. 

It was the first time I saw acknowledgment of what I had witnessed growing up.  An acknowledgement that perhaps my family member was predisposed with a genetic tendency towards a “bipolar” brain chemistry, but also, the combination of infections/physical health and trauma also played a significant role.

The Middle of the Journey to Understanding PANS

After I graduated from college in 1991, I moved to California to connect with people and places that were influenced by pioneers such as Norman Cousins, Candace Pert and Carl Simonton (who spoke to me about his work using imagery with kids to help them visualize their body attacking cancer cells!). I was reading that California seemed to be more embracing a "mind-body" approach .

While living in California, I went to work at UCLA Medical Center.  I deliberately pursued work at UCLA because their Psychiatry Department was being influenced by Norman Cousins and his perspectives on psychoneuroimmunology. It was exciting to see that psychoneuroimmunology was beginning to get some traction.

When I moved back to NY in 1993, I saw that Bessel Van der Kolk's was publishing evidence of how trauma changes brain chemistry and function.  You can read about his work here.  Van der Kolk’s pioneering research inspired me to dive deeper into learning about trauma, EMDR and the impact on the body.   

In the early 1990’s Dan Siegel’s (also out of UCLA) groundbreaking work was also getting more visibility.  His work in interpersonal neurobiology (how we affect each other’s physical and emotional selves through relationships) helped round out my understanding of the puzzle by bringing in the interpersonal aspect.  Dan Siegel was providing an understanding about how we affect each other physically and emotionally as human beings.

Like Porges, Dan Siegel introduced the concept of co-regulation, and his work provided insight into how we can adjust ourselves and do our own trauma work in order to help our kids and teens become better self-regulated.

When I began my work at a National Cancer Institute in 1995, I joined a research team that focused on glutathione and nutritional epidemiology.  Little did I know how glutathione would surface in my life again when my daughter developed PANS!  It was very helpful for me to have an understanding of these metabolic pathways in general as well as how nutrition affected these metabolic processes when I researched ways to support my daughter.

 This photo is courtesy of Mohamed Nohassi 
When I went on to graduate school for social work in 1999, Fordham’s program focused heavily on community connections and their positive impact on mental health.  Also, I joined Fordham’s research program called Children FIRST under Dr. Virginia Strand.  Children FIRST is dedicated to research in understanding how trauma affects children, as well as initiatives to better child welfare and mental health.

I am so very grateful for these pioneers and mentors that have allowed me to learn and grow throughout my life.  In retrospect, I feel that all along I have been seeking to better understand my family member’s challenges and then, I was seeking to understand my daughter’s challenges.  

This photo is courtesy of Karl Fredrickson

The combination of interest, and then necessity as a PANS parent, helped me turn my pain into passion.  My wish is that as a community, we can gain strength and support from each other, as well as help each other find solutions.

Part 2 to come….it will be about how we can use awareness, truth and supportive modalities to release ourselves from the intergenerational dynamics associated with PANS.