I vividly remember the moment I reached my breaking point. I found myself on the floor, restraining my son after a long day at work where I had been managing crises with other children. I was seen as the go-to person for emotional regulation, but in that moment, I felt utterly alone and unprotected.
Years of disappointment from various medical professionals had led to this. Despite my background as a social worker for over two decades, I found myself struggling to understand the rapid decline of my son’s health. He was diagnosed with high-functioning autism, a label that many refused to accept because he was deemed “too social.” But as his condition worsened, the diagnosis seemed inadequate.
A mother’s intuition is powerful, and I knew something was profoundly wrong. As my desperation grew, school nurses mentioned PANDAS/PANS—conditions I had never heard of before. So I inquired with neurologists, pediatricians, psychiatrists, and other specialists, only to be met with skepticism. They dismissed PANS as a rare condition, despite the evident suffering my son was enduring.
Finally, my son received an autism diagnosis at age 11, but instead of relief, it felt like a storm cloud loomed over us. He continued to deteriorate, even with medications. Fortunately, through a connection, I was introduced to another mother who had navigated this difficult path. She provided invaluable insight and referred me to the only doctor in Connecticut specializing in PANDAS/PANS.
When I met this doctor, an immunologist/allergist, my heart soared with hope. He quickly identified that my son’s issues stemmed from PANS, triggered by a tick-borne co-infection from Lyme disease, specifically Bartonella. The realization that my son’s brain was swollen due to this infection was shocking. Bartonella is notorious for being one of the most challenging tick-borne infections to treat, often misleading many into thinking they are dealing with psychiatric issues.
My son was desperate to heal. Despite enduring severe brain flares that led to alarming behaviors, he pleaded for relief. At one point, he was on a regimen of sixteen pills daily, including potent antibiotics. I felt trapped, unable to share his struggles due to the stigma surrounding mental health—many in the medical community only offered psychiatric solutions, which often exacerbated his condition.
In moments of crisis, our family often turned to over-the-counter pain relief to manage his symptoms, which made our home life unbearable. My husband and I were emotionally drained, and our other children were impacted by the turmoil.
After two arduous years of treatment, costing us nearly ten thousand dollars, my son began to show signs of recovery. Tests eventually confirmed that Bartonella was undetectable. He returned to his “normal” self, with meltdowns that were more manageable and linked to his autism rather than PANS.
What angers me the most is that, as a mental health professional, it took me almost three years to navigate the right diagnosis and treatment. If I hadn’t found the right care, my son could have faced institutionalization or worse. How many families are out there struggling without the resources I had? It’s a heartbreaking thought.
While I appreciate the efforts of our state’s governor to raise awareness about these conditions, the reality is that the CDC’s refusal to acknowledge this epidemic leaves many without proper care. Insurers often deny coverage, leaving families in dire financial straits.
As you reflect on rising suicide rates, increased physical restraint in schools, and ineffective treatments, remember my story. PANDAS and PANS are serious conditions caused by infections that can manifest as severe behavioral issues. These children are genuinely sick and need more than just behavioral plans or medications to numb their pain.
Spread the word. Just because someone has a medical degree doesn’t mean they have all the answers. If you suspect something is wrong, seek out a knowledgeable professional. You aren’t alone in this journey, even on the toughest days. For additional insights on related topics, check out this article on home insemination or learn more from Make a Mom’s resources. For a deeper understanding of fertility and related health issues, visit Science Daily.
Summary:
Navigating the complexities of PANS, particularly as a parent and a mental health professional, has been an exhausting journey. My son’s battle with a tick-borne infection led to a misdiagnosis of autism, and it took years to uncover the truth. This experience underscores the need for better awareness and understanding of PANS and the importance of seeking knowledgeable medical care.