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  • Writer's pictureEmily Johnson

Story: Moving From Pain to Purpose

Updated: May 12

It was Friday January 10, 2020, when our 9-year-old son, Miles, disappeared.

I expected him to hop off the bus with his usual smile and glee about pizza and “boy movie night,” but instead was met with a wave of anger as he pushed past me to get into the house. The intensity of the anger was concerning since we had never experienced this from either of our boys. As the weekend unfolded, Miles exhibited extremely irritable behavior and escalating rage. My husband and I questioned whether something was going on at school, but Miles and his teacher reported that everything was fine there.

The next week I made an appointment with our pediatrician, thinking that maybe Miles just needed some counseling. I remember sitting in the doctor’s office studying my son’s wide, dilated empty eyes and shell of a body thinking, “Where has my once happy and healthy boy gone?” How could this kid go from having had the best summer attending overnight camp to becoming so psychiatrically ill that we actually feared for his life? We left the pediatrician that day with no answers and a monthlong wait for counseling.

As we waited for an appointment, things continued to spiral out of control at a frightening pace. Miles’ anger turned to outright rage. I kept emailing his teacher, but the report was always the same: Everything at school was fine. He became violent and physically destructive in our home. He made terrifying statements about wanting to die, and then even more bizarre and horrific symptoms ensued. He began screaming and screeching at the top of his lungs, urinating all over our home, and writhing around on the floor like he was possessed. He barely slept. We felt so alone. So helpless. Trapped in a nightmare that wouldn’t end.

Super Bowl Sunday arrived and instead of watching the halftime show, we watched Miles rage. Desperate, we called the police for the first time. My body shaking, I remember the feeling of sheer terror coursing through my veins. I was so afraid that this was our forever – our son eternally stolen by an invisible demon and a lifetime of trauma and immense pain ahead for our family.

The days that followed revolved around mobile crisis counselors visiting our house, which only contributed to more stress and trauma. They recommended that we lock Miles in his room, raise our voices and take our “parental power back.” Thankfully, our call to the police opened up an avenue of consistent support from our town’s very special community resource officer to help us on our darkest days. He became a true ally and friend, so much so that he stayed connected with us even during the brighter days of healing that were ahead.

As a nurse, I had learned about PANS/PANDAS (P/P) when I attended a conference. I began to fear that’s what we were facing given Miles’ medical history. Over the next four months, Miles was admitted to the Emergency Room six times and hospitalized in the psych ward four times. Along the way, we collected the cornucopia of possible diagnoses: ADD, ODD, ASD, anxiety, depression and my personal favorite: “unspecified impulse control and conduct disorder.”

One of the many maddening experiences was sitting in a meeting with a psychiatrist at a major medical center. I’ll never forget how she sat there as I asked her about different diagnoses. Completely uninterested, she played with her shiny platinum engagement ring and glanced at the wall clock half-heartedly. “This is just a behavioral problem,” she said, and “sometimes this just happens to boys.” I recall shooting a look at the young social worker sitting adjacent to the psychiatrist while curtly issuing the statement that “this hospitalization felt like a very expensive babysitter.” Let’s just say her defensive response was not appreciated.

The sheer exhaustion, isolation, grief and trauma had taken its toll. My husband and I could barely work. I was trying to keep my yoga studio open in the midst of COVID while also desperately searching for a provider who could help us. At the same time, I was enduring the very depths of hell that comes with caring for a child with P/P. I could feel my own growing rage burning inside. I found myself trapped in a cycle that vacillated between paralysis and exhaustive action.

We made the difficult decision to send our other son to live with family out of state. I remember flying him down to North Carolina, arriving there barely able to speak as overwhelming grief stole my voice. My nervous system was completely fried. I suffered silently from intrusive thoughts of driving full speed into a concrete wall to end the pain. And yet knowing I’d be causing more anguish to the people I’d be leaving behind was enough to move me away from further destruction. The extreme level of anxiety, depression and PTSD was debilitating at times, but in the darkness you hold onto hope and force yourself to keep going. There was simply no other choice.

This deep sense of suffering I was experiencing was all too familiar to me. A decade prior I had borne witness to my brother’s unexpected death at Duke University Hospital where I was working as a lung transplant coordinator at the time. Three years before his death, I sat in the ICU at Boston Medical Center where I also had worked, after he was in a tragic motorcycle accident that left him paralyzed. I realized that the trauma from his accident and the agony of watching him die as the nurses and doctors worked to save his life – that pain was somehow less traumatic than what I was experiencing as a PANS/PANDAS parent. But I knew I had survived it – as painful as it was. The grief that came out of those experiences had become woven into me like sturdy fibers. Those threads embroidered an expansive scaffolding of resilience around my heart allowing me to fight harder than I ever thought I could. Deep down I knew that healing was possible and this would not be our forever.

Initially, I relied on my healthcare background for answers and felt immense relief when Miles was finally evaluated, diagnosed and treated by two PANS-literate physicians. But after months of antibiotics, NSAIDs like ibuprofen, psych meds and IVIG, we still had no improvements. When both providers had no further treatment recommendations, I lost faith in Western medicine’s ability to truly heal Miles from this hellacious autoimmune disorder. I began to rely more heavily on my inner wisdom and faith that an unknown greater force was at play. I knew that the next step forward meant letting go of all I knew and exploring a modality of medicine that went beyond the business of academic medicine and our fractured healthcare system. And so, our true healing journey began. I picked up the phone and made a call that saved our lives.

I will never forget the days that followed. Especially, December 15, 2020, just shy of a year from Miles’ onset. That day I drove to the beach, sat in my car and sobbed tears of joy. It was one of the most cathartic cries I’ve ever experienced. We were 33 days into homeopathic treatment, and our boy was coming back. There was life in his eyes. There was a calm and loving energy I could feel when he sat next to me, engaged in conversation instead of physically attacking me. It was then that I knew homeopathy was the way for us. Even just writing this I can feel my heartbeat quicken, my blood surge through my body, and my skin tingle as I recall those first signs of healing. Over time Miles went from daily rage episodes to an average of three times a month. He eventually transitioned out of our bed to be able to sleep in his own room, and we now rarely have to clean up a urinary episode. It’s felt like one long, slow exhale, with pauses to hold our breath when he has a temporary backslide.

What I’ve come to learn along the way is that healing is a process more sacred and complex than I was ever taught in nursing school. I’ve come to understand how an entire family is affected by PANS and how we each have our own timeline for healing, both individually and collectively. As I began to explore my own healing, I allowed myself to fall apart, to mess up, to quit a million times and then start over every day.

I, perhaps like you, have suffered greatly throughout my journey as a PANS/PANDAS mother. There were days I lost hope and wanted to end it all. There were other periods where I self-medicated, numbing my pain with wine, food and social media. It’s been one hell of a messy and winding road. Along the way I surrendered to the fact that I had very little to no control over a lot of things, and accepted that all I could control was myself. I knew I had a choice in how I could show up each and every day, and that much of my reality was a product of my own thoughts and beliefs. On the days that I was not proud of myself and my actions, I worked to be gentler and kinder: starting with me first. Eventually, I softened to forgiveness, which became a conduit for healing and positive change.

Along with forgiveness, I found that allowing myself to be vulnerable, at first with safe and trusted individuals, provided some comfort. But in order to navigate those waters, it was necessary to address lingering hidden feelings of shame and unworthiness. There was much work I had to do on myself and also in my marriage. With patience, compassion and communication, along with faith and trust in the entirety of the whole process, I was able to arrive at the next amazing chapter of my life.

I trusted that someday my story would help someone else, because we are not meant to travel this alone. We are neurobiologically designed to connect, to bear witness to not only our own pain and suffering, but to also walk quietly side by side with one another, allowing space for all experiences to respectfully exist. While our whole family still has some healing to do, I am confident our light will continue to shine, and I know you have that same light within you. You have the ability to do this. You are not alone. This is not your forever, and healing is possible.

Contributing author to "Somewhere In There" by Melissa Nolan

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