For two decades, parents of children exhibiting mental health symptoms have entered doctors’ offices armed with articles, pleading for strep tests, basic lab work, or antibiotic trials. Suspecting their child has Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) or its related condition, Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS), these parents are in search of understanding and relief.
These children can suffer from severe psychiatric and neurological symptoms, often resembling conditions like bipolar disorder or schizophrenia. Many face challenges that prevent them from attending school, and they may lose skills such as writing, drawing, or math. Some even develop anorexia, while others endure numerous tics hourly. In extreme cases, families must live apart to ensure everyone’s safety. Isolation becomes a common experience as they face accusations that their children’s behaviors stem from poor parenting. In the best circumstances, friends and family may struggle to grasp the situation, leading to a lack of support—no meal trains, no check-in texts, and no crowdfunding initiatives. The stigma surrounding mental illness casts a heavy shadow over these families.
In their desperation, parents turn to medical professionals, often met with skepticism. Responses vary from “We’re not convinced PANS is real” to “This is psychiatric; you need to accept it.” Yet, these parents, who have spent sleepless nights researching medical literature, hearing success stories from reputable institutions, and witnessing their children’s suffering firsthand, refuse to accept defeat.
Acceptance is meant for chronic conditions that cannot be cured, not for the sudden transformation of a once-happy child into someone grappling with severe anxiety, obsessive-compulsive disorder, tics, aggression, bedwetting, skill loss, sleep issues, and restrictive eating. For those navigating this nightmare, acceptance is unfathomable.
Since the first paper on the condition was published in the 1990s, parents have fought tirelessly to secure appropriate care for their children, often traveling out of state and incurring expenses far beyond their expectations. While many children show remarkable improvement with antibiotics and anti-inflammatories, they often face the daunting hurdle of obtaining an accurate diagnosis. Despite existing scientific evidence highlighting how immune system issues can affect the brain, this knowledge has been slow to influence clinical practice, making a PANS diagnosis difficult to achieve.
Then Came COVID-19
Amid global turmoil, including loss, financial distress, isolation, and immense pressure, the pandemic has brought an unexpected boon to the PANS community—what years of advocacy had not achieved. Parents previously dismissed as “silly” for linking infections to their children’s debilitating symptoms now see a newfound recognition: Validation. Funding. Acknowledgment that infections can indeed provoke neuropsychiatric symptoms warranting medical attention.
Suddenly, medical journals are filled with studies indicating that neurological and psychiatric symptoms are prevalent long after COVID-19 has passed. Individuals previously healthy are now facing significant mental health crises. In sharp contrast to the long-standing struggle of those with PANS, acknowledgment of post-COVID-19 conditions has gained widespread recognition in a matter of months. Research funding has surged into the billions, igniting hope for those affected by similar disorders, including PANS and chronic fatigue syndrome.
Yet, feelings of resentment linger. The journey through PANS has been profoundly traumatic for all involved. A Stanford study revealed that the stress on caregivers is akin to that seen in severe childhood diseases. Parents who have endured PANS alongside experiences like civil war and childhood cancer describe it as the most challenging ordeal of their lives. The combination of neglect from the medical community and invalidation of their suffering while witnessing their children in pain leaves lasting scars.
Nonetheless, hope emerges as a powerful remedy for families overwhelmed by this disorder. COVID-19 highlights the crucial message that PANS families have sought to convey for years. While an apology for past suffering seems unlikely, increased funding for research and widespread recognition that infections can trigger psychiatric symptoms represent significant strides forward.
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Summary:
COVID-19 has inadvertently benefited families dealing with PANS and PANDAS by bringing validation, funding, and acknowledgment of the link between infections and neuropsychiatric symptoms. This newfound recognition contrasts sharply with the struggles these families have faced for decades, as they seek proper diagnosis and treatment amidst a system that often dismisses their experiences. While the trauma of PANS remains, the hope generated by COVID-19 research offers a glimmer of possibility for better understanding and care.
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Title: The Unexpected Positive Impact of COVID-19 on Families Affected by PANS & PANDAS
Description: Explore how COVID-19 has brought unexpected validation and funding for families affected by PANS and PANDAS, highlighting the importance of recognizing the link between infections and neuropsychiatric symptoms.