By Gabriella True, President, Alliance to Solve PANS & Immune-Related Encephalopathies (ASPIRE)
Each year, countless children and adults with PANS PANDAS lose critical time, time when early diagnosis and proper treatment could have reversed the storm raging inside their brains. Time when families could have been spared the chaos, confusion, and heartbreak of watching a loved one disappear before their eyes.
Thirty-plus years after PANDAS was first identified, there continue to be too many misdiagnoses and too much disbelief in the condition with in the medical community. Yes, there has been growth and improvement, but we still have a long way to go. As Dr. Susan Swedo, the NIH researcher who first described the condition, reminds us:
“The cost of inaction – the cost of not treating PANS promptly and appropriately is tremendous.”
It is time. It is time to bring urgency, compassion, and clarity to the care of patients living with PANS and PANDAS.
What Happens When We Wait
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) are not rare. Yet for many families, finding a clinician who recognizes the symptoms still feels like searching for a needle in a haystack, especially one who provides affordable or insurance-based care.
Symptoms often begin abruptly: a child who was once thriving suddenly develops a new or newly worsening case of severe obsessive-compulsive behaviors, crippling anxiety, tics, restrictive eating, an inability to attend school, and other symptoms. The change is dramatic, sometimes overnight. What should trigger an urgent medical evaluation often leads instead to psychiatric referrals and trial-and-error of medications. At the same time, as the underlying infection or immune dysfunction remains untreated, symptoms worsen, and the condition becomes increasingly complicated to treat.
This delay in diagnosis and treatment is not benign. When inflammation and immune dysregulation go unchecked, the brain and immune system can become trapped in a cycle of neuroinflammation that becomes increasingly difficult to reverse. Left untreated, PANS can become a chronic or rapidly relapsing neuroimmune condition that erodes mental and physical health, relationships, and livelihoods. The cost of inaction compounds with age, with increased suffering, lost earnings, higher healthcare expenses, and years of diminished quality of life.
As Dr. Swedo explains:
“We have seen this hundreds of times. If we can treat the child promptly, we can ‘cure’ mental illness with antibiotics to treat the inciting infection. If we wait too long, then we have a neuroinflammatory condition which sometimes has become entrenched and more chronic.”
Every day that passes without appropriate medical care raises the risk of chronicity. The result is not only prolonged suffering for the patient but escalating emotional, educational, and financial strain for the entire family.
The Human Cost of Inaction
The cost of inaction resounds through every aspect of a patient’s and a family’s life. Parents too often must reduce their work hours or leave their jobs entirely to care for children who can no longer attend school or function independently. The child with PANS is not the only one affected; siblings lose the stability of their routines and often carry unseen emotional burdens. Marriages buckle under relentless stress and uncertainty. And the adult with PANS is often left with even fewer resources and increased burdens.
As Dr. Swedo notes, the losses are not merely financial:
“It isn’t just in terms of financial losses to the family, to the community, with having to provide at-home education. Some of our families have had such a sick child that they’ve been unable to work. We incur the cost in terms of family strife, ending up with parents who are so stressed that their relationship begins to crumble. And of course, the most horrific cost is on the patients who suffer needlessly.”
Behind every data point is a human story: a child who missed years of schooling, a teen who lost confidence and friends, an adult who wonders what life might have been if someone had recognized their symptoms sooner.
These patients are not rare outliers. Their stories serve as reminders that delayed recognition and inadequate care carry a cost that cannot be solely measured in dollars. Loss is gauged in lost potential, fractured families, and enduring trauma.
PANS/PANDAS Are Treatable
The tragedy of the failed recognition of this disorder is that effective treatment exists. PANS and PANDAS are medical disorders, neuroimmune and post-infectious in nature, that respond best to a three-pronged approach:
- Treat the underlying trigger, often infections or immune activation.
- Reduce inflammation and modulate the immune response, with specific treatment choices guided by the patient’s severity.
- Provide psychiatric and behavioral support for to reduce suffering from symptoms as healing progresses on an as-needed basis.
“By treating PANS with a three-pronged approach,” Dr. Swedo emphasizes, “I honestly believe that we can save a generation of children from some of the misery experienced by adults who have had this since they were kids.”
This approach is not radical; it is grounded in decades of clinical observation and continued emerging research. Yet too often, doctors, therapists, and psychiatrists tell their patients and families to “wait and see” or that their symptoms are purely psychiatric or even that they don’t believe in PANS/PANDAS. The result is lost time, worsening illness, and families left to navigate an impossible maze of roadblocks, denials, worsening symptoms, and inappropriate or incomplete treatments.
Prompt, comprehensive treatment can restore functioning, stabilize families, and dramatically reduce long-term costs to the family, healthcare, and education systems. Inaction multiplies harm; harm that no one can afford or should be expected to endure.
The Broader Impact: Schools, Communities, and Systems
The effects of untreated or mismanaged PANS/PANDAS ripple beyond individual households. Communities absorb the cost through increased demand for special education, mental health services, and social support programs.
School systems struggle to support students whose sudden cognitive and behavioral changes are misunderstood. Misdiagnosis leads to inappropriate educational placements or disciplinary actions and increases the student’s inability to access the curriculum and attend school, compounding emotional distress.
Healthcare systems bear the weight of repeated hospitalizations and misdirected treatments. Employers lose skilled workers when parents are forced to make the difficult decision to leave their jobs to become full-time caregivers. And we potentially lose a generation of children who can’t function at their full potential when they become adults, still living with symptoms.
What could have been addressed early through proper medical evaluation and treatment becomes a cascade of avoidable consequences.
When Childhood Disorders Grow Up: The Adult Cost of Inaction
For too long, the conversation about PANS and PANDAS has been limited to childhood. But to help children with PANS, we must acknowledge an uncomfortable truth: without proper intervention, many of them grow up to become adults still living with the same disease.
Adults with undiagnosed or untreated PANS carry the long shadow of lost time. Some have suffered for decades, misdiagnosed with treatment-resistant psychiatric disorders. Only to be left to cycle through medications and hospitalizations that never address the immune dysfunction, which is at the root of their suffering. Others manage to build lives but remain haunted by flares of anxiety, OCD, or depression that reemerge with every new infection or immune trigger.
To protect children, we must also safeguard their futures. That means putting pressure on doctors to recognize and treat PANS early, and holding insurance companies accountable for covering timely, appropriate care. It means raising awareness that PANS is not just a childhood disorder. It’s a life-stealer for thousands of adults who were missed, dismissed, or mistreated when they were young.
To help children with PANS, you must acknowledge that they will become adults with PANS without proper intervention.
It’s time to rethink how research priorities are set and how funding is allocated. And yes, we are acutely aware of how limited any medical research funding is. Historically, conditions that begin in childhood receive far less federal support than those that affect adults. When PANS is pigeon-holed as a “pediatric” illness, funding and focus follow that label, leaving adults out. This narrow focus may limit progress, making it potentially more challenging to secure the level of investment and investigation needed to understand PANS as the lifelong, immune-based condition it can be.
Yes, it makes sense for PANS PANDAS researchers to begin with children, as most cases typically start in childhood. Group A Streptococcus, aka strep throat, is considered to be primarily a pediatric illness, and so pediatric onset offers clearer insight into disease mechanisms. The immune systems of children and adults are not the same. Conducting a study that combines children and adult patients could risk obscuring outcomes and hindering usable findings without accounting for these differences. However, it is time for the solution to be rooted in expansion, not exclusion. We need dedicated study arms, budget lines, and treatment protocols that recognize how PANS manifests in both children and adults. This may feel like a pipe dream at this point, but we need to have those discussions to even hope to make the case for expanded research.
PANS doesn’t disappear at 18. It doesn’t recognize birthdays, college graduations, or career milestones. The inflammation doesn’t stop when the calendar flips. It follows those it affects into adulthood unless we intervene.
Or, put simply:
PANS doesn’t end in childhood and neither should our care, our research, or our compassion.
The Moral and Medical Imperative
This is not only a medical issue, but also a moral one. When science offers an explanation and a path to recovery, failing to act becomes a choice. The suffering of children and adult patients with PANS/PANDAS and their families is not inevitable; it is the result of systemic inertia and fragmented care. We have an obligation to change that. Clinicians must be equipped and willing to recognize and treat PANS/PANDAS. Schools must understand that behavioral and psychiatric symptoms can have physical roots. Policymakers must ensure that insurance coverage supports evidence-based treatment. And as a society, we must replace skepticism with curiosity and compassion.
“I’m begging you to make people aware, educate the doctors, and make sure that we understand that this is the time,” Dr. Swedo urges. “It’s been 30 years since PANDAS was first discovered… It is time to get these kids the diagnosis and treatment that they deserve.”
It Is Time
We cannot afford another decade of inaction. Every delay deepens the divide between what we know and what we do.
At ASPIRE, we see the power of awareness turned into action – when teachers recognize sudden behavioral changes as possible signs of PANS, when clinicians test for infections before prescribing psychiatric medications, when policymakers listen to families and support comprehensive care.
Each of these moments is a step toward rewriting the story for thousands of children and adults whose lives have been derailed by this misunderstood condition.
The science is here. The stories are here. The urgency is undeniable.
It is time to recognize, diagnose, and treat PANS and PANDAS promptly and appropriately. Because when we act, recovery is possible. And when we wait, the cost is simply too great. We must shorten the time between the onset of symptoms and the start of treatment and support.
Bridging Awareness and Action with ASPIRE
In the meantime, ASPIRE continues to stand beside patients, families, and professionals by bridging the gap between awareness and action. We provide accessible education through our website and clear, easy-to-understand articles and webinars. We also connect and support patients and families through peer-to-peer ChitChat support groups and strengthen systems of care by offering school in-services, advising advocates on state legislation, and organizing grand rounds and presentations for providers. Every effort is focused on increasing awareness, improving understanding, and ensuring that no patient with PANS or PANDAS is overlooked or alone.
Support ASPIRE’s Mission
Whether you’re a long-time supporter or new friend, please help provide educational programs, materials, and support for families, educators, legislators, doctors, and more.
Help shorten the time between the onset of symptoms and the start of appropriate treatment and support.
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About ASPIRE
The Alliance to Solve PANS & Immune-Related Encephalopathies (ASPIRE) is dedicated to improving the recognition, diagnosis, and treatment of PANS and PANDAS through education, advocacy, and collaboration. To learn more, visit aspire.care.
Gabriella True
