MedCity Influencers, Medical Education

The Hidden Autoimmune Disorder Affecting Our Kids: Understanding PANS and PANDAS

A delayed diagnosis can cause a progression in severity (from mild to moderate to severe), increased suffering for the entire family, as well as enhance the risk of long-term neurological damage and the time it takes for them to heal.  

When Buckley Tant was six years old, his world (and his family’s) began to unravel. Diagnosed with ADHD and later Oppositional Defiant Disorder, Buckley was a bright child whose behavior turned erratic, aggressive, and frightening overnight. His parents exhausted every resource they could: psychiatric medications, behavioral interventions, and home-schooling, with no relief. It wasn’t until age nine that Buckley was finally diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), a little-known autoimmune disorder that can mimic behavioral and psychiatric illness. By then, Buckley had spent years isolated from classmates, misunderstood by teachers, and caught in a medical system ill-equipped to recognize his condition.

Today, thanks to intravenous immunoglobulin (IVIG) treatment delivered in a supportive, faith-centered environment, Buckley is 90% better. He’s back in school and thriving. But his story is unfortunately not unique, nor is it over.

What are PANS and PANDAS?

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PANS and its subset, Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS), are autoimmune conditions triggered by infections such as strep throat. They cause the immune system to misfire, attacking brain cells and leading to a rapid onset of obsessive-compulsive behaviors, anxiety, rage, tics, food restriction, and cognitive decline.

These disorders often remain under-recognized, and it is estimated that as many as 1 in 200 children in the U.S. may be affected. New PANS cases, and an exacerbation of symptoms are reported to have arisen after Covid-19 infection. Yet, too often, children are misdiagnosed with ADHD, autism spectrum disorder, or generalized anxiety, leading to a delay in the care they urgently need.

The misdiagnosis dilemma

Unlike other various mental health conditions, PANs and PANDAS tend to manifest out of the blue. Parents report sudden, uncharacteristic changes in their child’s behavior, including emotional instability, obsessive rituals, irrational fears, and aggression. In Buckley’s case, these symptoms led to isolation rooms at school, escalating disciplinary measures, and family disruption so severe his three siblings feared him.

Like Buckley, many children undergo years of misdiagnosis, mislabeling, and mistreatment before a correct diagnosis is made. These delays can cause a progression in severity (from mild to moderate to severe), increasing suffering for the entire family, as well as enhance the risk of long-term neurological damage and the time it takes for them to heal.  

A scientific approach to treatment

Because PANS/PANDAS is driven by immune dysfunction, effective treatment targets inflammation and immune modulation. First-line interventions include nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, and antibiotics when an active infection is present. For moderate to severe cases, IVIG, a purified blood product containing antibodies, can — and should — be used.

However, IVIG is not without barriers. Treatment can cost up to $150,000 per year and often requires multiple infusions. For families already grappling with emotional and financial strain, this level of care is often inaccessible, especially when insurance coverage is lacking.

Public policy progress: Tennessee leads the way

As of 2025, several states, including California, Massachusetts, and Virginia, require insurance coverage for PANS/PANDAS treatment. This year, Tennessee joined their ranks, following a hard-fought legislative campaign led in part by families like the Tants.

Tennessee’s new policy mandates that TennCare, the state’s Medicaid program, must cover IVIG for children with PANS and PANDAS. This is more than a win for Buckley and others.

One parent, Lauren Wilson, testified before the Tennessee Senate about her daughter’s experience. Misdiagnosed, she deteriorated to the point of being placed on psychiatric hold and hospitalized far from home. Only later was she correctly diagnosed and began to receive IVIG infusions — after her family sold their home to cover costs. Stories like this underscore the urgency of expanding insurance coverage and clinical awareness.

Why awareness matters

A delayed diagnosis of PANS/PANDAS can result in years of lost education, social withdrawal, and trauma. But when recognized early and treated appropriately, recovery is not only possible — it’s probable. Buckley’s story is proof. His mother reports that he’s 90% better and back in school after having been steered toward PANS/PANDAS not by a practitioner, but by a fellow mother. Other doors then began to open, eventually leading to a company that listened and took action.

A call to action

We need more education for pediatricians, school personnel, and insurers. When a child presents with a sudden, dramatic change in behavior, clinicians must consider PANS/PANDAS as part of the differential diagnosis. We also need more state mandates ensuring equitable access to treatments like IVIG.

I’ve seen the transformation that comes when science, policy, and compassion align. Let’s work together to bring this lifesaving knowledge to every family, every provider, and every state. The stakes are too high to do anything less.

Photo: RichVintage, Getty Images

As Founder and Chief Executive Officer of TwelveStone Health Partners, Shane Reeves has built a best-in-class specialty infusion center organization that covers 4 states and 23 sites. With patient experience data including more than 1,500 5-star ratings, TwelveStone has become a model of care delivery focus on those with chronic long-term conditions.

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