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For years, parents of children exhibiting mental health challenges have walked into doctors’ offices armed with articles, desperately asking for strep tests, basic lab work, or trials of antibiotics. Many suspect their child may have Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) or its related disorder, Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS). They long for someone to listen and provide relief.
These children endure debilitating psychiatric and neurological symptoms that can mimic severe mental illnesses like bipolar disorder or schizophrenia. They often face challenges that prevent them from attending school or engaging in activities they once enjoyed, including writing and drawing. Some struggle with anorexia, while others may exhibit numerous tics throughout the day. In extreme cases, families are forced to separate to ensure everyone’s safety. The isolation that follows can be profound, with many facing stigma and accusations of poor parenting rather than receiving the understanding and support they so desperately need.
In their search for help, parents often encounter skepticism from the medical community, where many practitioners are unsure if PANS is a legitimate diagnosis. They are sometimes met with the dismissive notion that it is merely a psychiatric issue. However, parents who have spent countless nights researching and reading success stories from reputable treatment centers refuse to accept this narrative.
The term “acceptance” is reserved for chronic conditions that cannot be cured, not for the sudden transformation of a once-happy child into someone plagued by anxiety, obsessive-compulsive disorder, tics, and other distressing symptoms. Acceptance feels impossible for those grappling with a child in turmoil, consumed by hallucinations and harmful thoughts.
For over two decades, families have fought for their children’s well-being, often traveling out of state for treatment and incurring expenses far beyond what they ever anticipated. While many children show significant improvement with anti-inflammatories and antibiotics, the primary obstacle remains: obtaining an accurate diagnosis. Despite the scientific literature detailing how an overactive immune response can affect the brain, this knowledge has been slow to influence clinical practice.
Enter COVID-19
In the midst of a global pandemic that brought immense loss and hardship, COVID-19 unexpectedly provided a breakthrough for families dealing with PANS. Parents who once faced disbelief from the medical community—who were told their concerns were unfounded—have witnessed a shift. The pandemic has highlighted the link between infections and neuropsychiatric symptoms, leading to significant recognition and funding for research.
Medical journals have rapidly filled with studies showing that neurological and psychiatric issues can arise even after the COVID-19 infection has resolved. Unlike the long battle for acknowledgment surrounding PANS, the recognition of post-COVID-19 complications has gained widespread attention in a matter of months. Research funding has surged to billions, sparking hope among those affected by similar conditions, including PANS and chronic fatigue syndrome.
Yet, amidst this newfound hope, the trauma of experiencing PANS remains. Families have described the burden of caregiving as comparable to that of severe childhood illnesses. Some parents have faced experiences in war zones and serious illnesses, only to find PANS more challenging. The neglect from the medical community, coupled with the invalidation of their lived reality, has left deep scars.
However, the hope generated by COVID-19’s impact on medical understanding is a powerful balm for those who have endured the relentless grip of PANS. The pandemic has validated the experiences of these families, and while a formal apology may never come, increased research funding and acknowledgment of the role infections can play in psychiatric health serve as vital steps forward.
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Search Queries:
- What is PANS?
- How does COVID-19 affect mental health?
- Symptoms of PANDAS
- Differences between PANS and PANDAS
- Treatment options for PANS
In summary, while the challenges of PANS and PANDAS are significant, the COVID-19 pandemic has brought about a critical shift in understanding and funding that offers hope to families affected by these disorders.