I vividly recall the moment when everything fell apart. I found myself on the floor, holding my son down during one of his severe episodes. Earlier that day at work, I had also restrained several children, earning the reputation of being the go-to person for emotional regulation. But who was there to help me in my time of need?
This moment was the culmination of years of disappointment from some of the most esteemed medical professionals. I had watched my son slowly transform from a bright child into a version of himself that felt completely foreign to me.
With two decades as a social worker, I felt confident in my knowledge of mental health. Typically, when confronted with a case, I could swiftly identify a diagnosis and craft an effective treatment plan. However, my own child presented a challenge that no one seemed willing to address. Despite being high-functioning on the autism spectrum, his diagnosis was often dismissed because he appeared “too social.” As his behavior changed dramatically, many insisted it was merely a manifestation of autism.
A mother’s intuition knows when something is amiss. As my son’s condition deteriorated, I grew increasingly frantic. School nurses at my workplace shared insights about PANDAS/PANS, which piqued my interest. I began asking every doctor we encountered for months about this possibility. Despite their kindness and expertise, they insisted it was a rare diagnosis and not something to consider.
Finally, my son received an official autism diagnosis at age 11. While it should have given me a sense of relief, it only intensified my worries. His condition continued to worsen, even with psychotropic medications.
Fortunately, a colleague introduced me to a mother whose child had been diagnosed with PANDAS/PANS. She shared her harrowing experience, revealing the relentless battle that lay ahead. She gave me the name of the one doctor in Connecticut she trusted.
Once I met that doctor, an immunologist/allergist, I felt a wave of relief. He examined my son and confidently declared, “This is not autism; it’s PANS, caused by a co-infection from Lyme disease.” His understanding of my son’s history and condition was remarkable, and he outlined a treatment plan. However, I knew it would take time for my son to fully recover.
At that point, my once-sweet child had taken on a haunting demeanor. I learned that his brain was swelling due to an infection called Bartonella, one of the most challenging tick-borne infections to treat. A standard 30-day course of antibiotics for Lyme disease wouldn’t even begin to address the issue. Bartonella can mimic psychosis, leading to the misconception that hospitalization is the only answer.
Amid severe brain flares that resulted in suicidal and aggressive thoughts, my son pleaded for help. He was on a rigorous regimen of medication, taking multiple antibiotics throughout the day.
I felt compelled to keep our struggles private. The medical community often failed to recognize the complexities of PANS, with many doctors opting for psychotropic treatments, which could worsen the symptoms. It seemed ludicrous that in the very state where Lyme disease was first identified, there was only one doctor who understood how to treat my son effectively.
In times of crisis, I feared that revealing our situation could lead to accusations of medical neglect. This fear kept us isolated, relying on over-the-counter medications to manage symptoms while I laid across him for safety during his episodes.
The emotional toll was immense. My other two children often cried, while my husband and I struggled to keep our family together. This was not just a fleeting challenge; it stretched on for years.
After two years of rigorous antibiotic treatment and substantial financial strain, my son finally showed signs of improvement. Tests eventually indicated that the Bartonella was undetectable, and his personality began to return to its former self.
What infuriates me is that despite my background in mental health, I faced immense difficulty in securing the appropriate diagnosis and treatment for my child. It took nearly three years, during which time my son was almost unrecognizable. If I hadn’t found the right care, the outcome could have been devastating. What about those families without the resources or knowledge to advocate for their children?
While I’m grateful that the governor of my state acknowledges awareness days for these conditions, the CDC’s refusal to recognize the severity of PANS continues to hinder proper treatment access. This lack of acknowledgment contributes to rising suicide rates and ineffective treatments in schools. Remember, no behavior plan can address a brain that is inflamed.
PANDAS is triggered by streptococcus, while PANS can stem from Lyme disease and its co-infections. Both can manifest in extreme behaviors, making it critical to understand that these children are experiencing genuine illness, not mere behavioral issues.
Spread the word; just because someone wears a white coat doesn’t mean they hold all the answers. The government is aware of this epidemic but chooses inaction. If you suspect that your child’s struggles are more than they appear, seek out knowledgeable professionals in PANDAS/PANS. Remember, you are not alone, even on the toughest days.
For more insights, check out our other blog post here and consider resources from Mount Sinai for pregnancy and home insemination. Also, Make a Mom has excellent products for those seeking to start their families.
Summary:
The journey to securing the correct diagnosis and treatment for my son’s PANS, triggered by a tick-borne infection, was fraught with challenges. Despite my background in mental health, it took years of advocating for my child to finally find the right care. This experience has highlighted the urgent need for awareness and understanding of PANS and similar conditions.
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