For over twenty years, parents of children exhibiting mental health issues have entered doctors’ offices armed with research articles, urgently requesting strep tests, basic lab work, or a trial of antibiotics. They suspect their child may have Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) or its variant, Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS), and they yearn for someone to listen and provide assistance.
These children endure intense psychiatric and neurological symptoms that can mimic severe disorders like bipolar disorder or even schizophrenia. Many struggle to attend school, losing skills like writing and math that they once mastered. Some battle anorexia, while others experience hundreds of tics each hour. In extreme cases, families are forced to separate to maintain safety. This isolation often leads to stigma, with parents facing accusations that their child’s behavior is a result of poor discipline. In the best cases, friends and family simply do not comprehend the situation, leaving families without support or understanding.
Parents have long turned to the medical community, seeking help beyond the standard dismissal of PANS as a legitimate diagnosis. They have scoured medical literature, learned of miraculous recoveries from reputable institutions, and witnessed their children descend into a whirlwind of anxiety, obsessive-compulsive disorder, and other debilitating symptoms.
Acceptance of their child’s condition is not an option; it feels more like a nightmare. Since the first description of PANS in the nineties, families have fought tirelessly for treatment, often traveling out of state and spending far more than they ever anticipated. While some children respond to anti-inflammatories and antibiotics, accurate diagnosis remains a significant barrier. Despite ample scientific literature showing the impact of an overactive immune system on mental health, this knowledge has not effectively reached clinical practice.
Enter COVID-19
Amid the global crisis—marked by loss, financial strain, and social isolation—COVID-19 has provided a glimmer of hope for the PANS community. Parents who have been dismissed in the past can now point to the growing body of evidence that infections can trigger neuropsychiatric symptoms. Medical journals have suddenly filled with studies revealing that neurological and psychiatric issues following COVID-19 are common. Many who were once healthy are now grappling with severe mental health challenges long after the virus has cleared.
Unlike the struggles of PANS, the acknowledgment of post-COVID-19 conditions has gained traction quickly, with billions allocated for research into causes and treatments. This influx of funding offers hope to families of children with PANS and related disorders, who have long sought similar recognition and support.
Despite the progress, feelings of resentment linger. Studies from institutions such as Stanford School of Medicine highlight that the burden on caregivers dealing with PANS is comparable to that faced by families enduring severe illnesses. Parents who have experienced both war and childhood cancer have described their PANS journey as even more harrowing. The trauma of being dismissed by the medical community while witnessing their child’s suffering can leave lasting emotional scars.
Nevertheless, the hope ignited by the recognition of COVID-19’s effects is a powerful remedy for families overwhelmed by PANS. The acknowledgment that infections can lead to psychiatric symptoms now resonates more than ever. While a formal apology for the pain endured seems unlikely, the funding for research and the recognition of these issues are significant steps forward.
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Summary
The COVID-19 pandemic has unexpectedly validated the struggles of families dealing with PANS and PANDAS by highlighting the connection between infections and neuropsychiatric symptoms. While the journey has been fraught with challenges, the surge in research funding and recognition offers hope for treatment and understanding.