I vividly recall the moment everything fell apart. I found myself on the floor, restraining my son after a long day at work where I had to intervene with other children as well. I was seen as the go-to person for emotional regulation, but who was there to support me?
This moment was the culmination of years filled with frustration—years of being let down by respected doctors and experts, years of witnessing my son transform into someone I barely recognized. As a social worker for twenty years, I thought I understood mental health thoroughly. Typically, I can diagnose cases quickly and create effective treatment plans.
For a decade, I fought for my son’s recognition as a high-functioning autistic child, even when professionals hesitated to label him due to his social skills. When his behavior changed drastically, it was frustrating to hear that it was “just autism.”
A mother’s intuition knows when something is amiss. As his condition worsened, my desperation grew. School nurses informed me about PANDAS/PANS during a professional development session, and I felt compelled to investigate further.
I consulted neurologists, pediatricians, and psychiatrists for months. Despite their kindness, they dismissed PANS as a rare phenomenon. Finally, at age 11, my son received an autism diagnosis, yet instead of relief, I felt a wave of despair as his symptoms intensified, even with medication.
Fortunately, my supervisor connected me with a mother whose child had been diagnosed with PANDAS/PANS. She shared her heart-wrenching journey and introduced me to the only doctor in Connecticut she trusted for this condition.
Upon meeting this immunologist/allergist, I felt a glimmer of hope. He quickly recognized that my son’s issues were not autism-related but rather PANS, stemming from a co-infection associated with Lyme disease. He understood the complexities and had a treatment plan ready, though the road to recovery would be long.
My once joyful boy had morphed into someone who seemed almost possessed. I learned that the infection in his brain, Bartonella, was notoriously difficult to treat. It could hide within blood cells, and typical Lyme treatment wouldn’t suffice. Standard antibiotic regimens often failed to address it adequately. Bartonella mimicked psychosis, leading many to mistakenly assume hospitalization was the only option.
Desperate to heal, my son endured brain flares that led to alarming behaviors. He pleaded with me for help while managing a complex regimen of eight pills in the morning and another eight at night—six of which were potent antibiotics.
In crisis, I felt isolated. Emergency rooms and psychiatric wards often treated children like him with psychotropic medications, which could exacerbate symptoms. With no safe place in the medical community for my son, I felt I had to keep our struggles hidden. The alternatives left us suffering in silence, managing his symptoms with over-the-counter pain relievers and enduring hours of distress.
Our family was emotionally drained. My husband and our other two children were also deeply affected. For years, we grappled with this reality—day in and day out.
After two years and significant financial strain, my son emerged from this battle. Tests eventually revealed no traces of Bartonella, and he began to return to his former self. His minor meltdowns became more manageable, aligning with his autism, rather than the severe brain flare-ups we had witnessed before.
What angers me is that, despite my background in mental health, I struggled immensely to obtain an accurate diagnosis and appropriate treatment for my son. It took nearly three years of relentless searching, during which he was barely recognizable. If we hadn’t found the right care, I shudder to think of the outcome. If I, an experienced social worker, faced such challenges, what happens to families without resources?
I appreciate that our state governor has designated a day for awareness. However, the CDC’s refusal to recognize the issue leaves most in the medical community hesitant to act. This neglect keeps many from receiving the necessary care. The financial burden is also a significant barrier, especially for those without savings.
When you consider rising suicide rates, increased restraints in schools, and the ineffectiveness of traditional treatments, remember this story. No behavior plan can remedy a brain suffering from an underlying infection.
PANDAS, triggered by streptococcus, and PANS, caused by Lyme disease and its co-infections, can lead to severe symptoms that may appear as erratic behavior. These children are genuinely sick and require medical attention, not just behavioral management.
Spread awareness. Just because someone wears a white coat doesn’t mean they have all the answers. Many families are suffering in silence. If your instincts tell you something is wrong, seek help from professionals knowledgeable about PANDAS and PANS. Remember, you are not alone, even on your darkest days.
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Summary
This article recounts a mother’s journey as her son faces PANS, stemming from a tick-borne infection. Despite her background in social work, she struggles to find the right diagnosis and treatment amidst a lack of understanding from the medical community. After years of hardship and fighting against overwhelming odds, her son finally receives effective care, highlighting the urgent need for awareness and accurate medical recognition of these conditions.