I can still vividly recall the day my world crumbled. As I lay on the floor, restraining my son during one of his episodes, I couldn’t shake the feeling of despair. Just hours earlier, I had spent my day at school managing similar situations with other children. I had been labeled the go-to person for emotional regulation, but in that moment, I realized I needed saving too.
The path that led to this moment was long and fraught with disappointment. Despite my two decades as a social worker, armed with knowledge of mental health, I found myself lost in a maze of ineffective treatments and misdiagnoses. My son, who had been high-functioning autistic, had been overlooked by professionals who dismissed his struggles as “just autism.” But deep down, I knew something was amiss.
When I began to hear whispers of PANDAS/PANS from the school nurses at my workplace, I was intrigued. They advised me to research it, but when I approached neurologists and pediatricians, their responses were dismissive. They insisted it was a rare condition and not something to worry about.
At age 11, my son finally received an autism diagnosis, which should have been a relief, but instead, it felt like a storm cloud hanging overhead. Despite being on psychotropic medications, his condition continued to deteriorate.
Then, a stroke of luck came my way. My boss introduced me to a mother whose child had been diagnosed with PANDAS/PANS. She shared her harrowing journey and recommended a doctor in Connecticut who specialized in this area. When I met Dr. Harris, an immunologist, the weight of uncertainty began to lift. He quickly identified my son’s condition as PANS, triggered by a co-infection from Lyme disease. His knowledge and approach offered a glimmer of hope, but the road to recovery would be long and challenging.
My once vibrant son had transformed into a shadow of himself, exhibiting behaviors that resembled possession. I learned from Dr. Harris that the infection, Bartonella, was the most difficult of the tick-borne illnesses to treat. Typical Lyme treatments wouldn’t suffice; in fact, they often didn’t even scratch the surface. Bartonella mimics psychosis and can lead to severe behavioral issues, sometimes even necessitating hospitalization.
Throughout this ordeal, my son desperately sought relief. During his brain flare-ups, which often resulted in suicidal thoughts, he pleaded for help. He was on a regimen of eight antibiotics each day, and the toll it took on our family was immense.
In the medical community, there was little understanding of how to treat children like my son. The CDC’s refusal to recognize PANS meant most doctors resorted to psychotropic medications, which often exacerbated the symptoms. We felt isolated, often resorting to simple pain relievers to alleviate his suffering, while the rest of our family struggled under the weight of emotional turmoil.
After two grueling years and thousands of dollars spent on treatment, my son’s tests finally showed no traces of Bartonella. Slowly, he began to reclaim his personality, with his outbursts now more aligned with his autism rather than the previous brain flares.
What infuriates me is that, despite my background in mental health, I struggled to navigate the system to find the right diagnosis and treatment for my child. It took nearly three years, during which my son was nearly unrecognizable. If I hadn’t found the right care, the outcome could have been devastating. I often think of parents without the resources I had—what happens to their children?
I appreciate that our state’s governor acknowledges the need for awareness, but when the CDC remains silent, the vast majority of the medical community is hesitant to challenge the status quo. This results in countless individuals remaining untreated and unable to access the care they desperately need. For those who lack financial means, the situation is even more daunting.
As we ponder rising suicide rates and increasing behavioral issues in schools, it’s crucial to recognize that these problems often stem from underlying medical conditions. Conditions like PANDAS and PANS, generated by infections such as Lyme disease, can manifest as extreme behaviors that cannot simply be managed through behavioral plans or medications.
Please spread the word: just because someone wears a white coat doesn’t mean they hold all the answers. The health crisis is real, and if you suspect your child may be suffering, seek out knowledgeable professionals. You don’t have to face this battle alone, even on the darkest days.
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In summary, my son’s journey through PANS has been a long and difficult one, filled with challenges that many families face in silence. It highlights the importance of awareness, understanding, and proper treatment for those suffering from similar conditions.