I clearly remember the moment my world shattered. I found myself on the floor, trying to keep my son safe while restraining him. Earlier that day, I had spent hours at school managing similar situations with other children. I had become known as the emotional support savior for others, but who would save me?
This breakdown was the culmination of years of frustration and disappointment with some of the most esteemed doctors and specialists. I watched my son deteriorate into a version of himself that I couldn’t recognize or help.
As a social worker for over two decades, I’ve prided myself on my understanding of mental health. Typically, when faced with a case, I can quickly identify the diagnosis and formulate a treatment plan. However, I had spent a decade advocating for my son. Despite being high-functioning and exhibiting social skills, no one wanted to officially diagnose him with autism. When his behavior changed and became more complex, many dismissed it as “just autism.”
A mother instinctively knows when something is wrong. As my son’s condition worsened, I became increasingly desperate for answers. The school nurses at my workplace mentioned a term they had learned about: PANDAS/PANS. They suggested I look into it.
I spent months consulting neurologists, pediatricians, psychiatrists, and various medical professionals. Although well-meaning, they all told me that PANS was rare and not a valid diagnosis. Finally, at age 11, my son received an autism diagnosis, which should have been a relief, but it was overshadowed by his decline. Even with medication, he was getting worse.
Luckily, my boss knew a mother whose child had been diagnosed with PANDAS/PANS. She came to my office and shared her harrowing experience, explaining that it was a challenging battle I would not want to face. She provided me the name of the only doctor in Connecticut she trusted.
When I finally met this immunologist/allergist, I felt a glimmer of hope. He looked at my son and promptly stated, “This isn’t autism; this is PANS caused by a co-infection from Lyme disease.” He was knowledgeable and immediately recognized the symptoms and how to treat them. However, I knew we were in for a long journey.
My sweet boy had transformed into what resembled a child possessed. It wasn’t until meeting this doctor that I learned his brain was inflamed due to an infection called Bartonella, one of the most challenging tick-borne infections to treat. It embeds itself in blood cells and can remain dormant. A standard 30-day antibiotic treatment for Lyme wouldn’t even scratch the surface. In fact, such brief treatments typically did not work. Bartonella can mimic psychosis, leading many to believe hospitalization is the only solution.
Desperate to recover, my son experienced brain flares that led to suicidal and aggressive behaviors. In between these episodes, he would plead for help, taking numerous medications, including potent antibiotics.
I couldn’t share our struggles with anyone; there was no appropriate treatment for kids like him in emergency rooms or psychiatric facilities. The CDC’s lack of acknowledgment meant that doctors were often limited to using psychotropic medications, which could exacerbate symptoms in children with PANS. This left us feeling isolated in a community that should have provided support.
We endured long nights filled with pain, screams, and my son’s erratic behaviors. My other children cried alongside us, and my husband was emotionally drained. This was not merely a phase; it was a grueling reality that lasted for years.
After two years of intense antibiotic treatment and significant financial strain, my son began to improve. Eventually, tests showed that the Bartonella infection was undetectable, and my son returned to his former self. His minor meltdowns were now more about autism than brain flare-ups.
What frustrates me is that, despite my background in mental health, I struggled to find the right diagnosis and treatment. It took nearly three years, during which my son became nearly unrecognizable. If we hadn’t found the right care, he could have faced institutionalization or worse. As an experienced social worker, I felt overwhelmed, and I can’t help but think of those without the resources we had.
I am grateful that our governor recognizes a day of awareness for this issue. However, the CDC’s refusal to acknowledge the severity of PANS keeps many children from receiving the care they need. Insurance often does not cover necessary treatments, leaving those without savings in dire situations.
As you ponder the rising suicide rates, increasing restraints in schools, and the ineffectiveness of medication and therapy, remember this message. No behavioral plan can remedy a brain suffering from inflammation.
PANDAS is triggered by streptococcus, while PANS is linked to Lyme disease and its co-infections. Both can cause children to display behaviors that seem irrational, from random tics to severe psychosis. These children are genuinely ill and not simply acting out. It is crucial to spread awareness. Just because someone is a medical professional doesn’t mean they possess all the answers. The government is aware of this epidemic yet chooses to remain inactive. If your intuition tells you something is wrong, trust that instinct. Seek out someone knowledgeable about PANDAS/PANS for the help your child deserves.
Above all, know that you are never alone, even on the darkest days.
For more information on navigating these challenges, consider checking out articles on related topics, such as artificial insemination kits. The resources provided by the CDC can also offer valuable insights during your journey.
Summary:
This article discusses a mother’s emotional journey as she navigates her son’s diagnosis of PANS, a condition resulting from a tick-borne infection. Despite her experience in the mental health field, she encountered numerous obstacles in finding the correct diagnosis and treatment. The narrative highlights the struggles faced by families dealing with PANS and the need for greater awareness and understanding within the medical community.
Keyphrase: PANS diagnosis and treatment
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