PANS/PANDAS in Children With Autism

Mastermind Behavior Clinical Team
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June 10, 2024

Explore the link between PANS/PANDAS and autism, understanding diagnosis, treatment, and the importance of early intervention.

Six weeks ago, your eight-year-old got over a strep throat. Three days after the antibiotics ended, his behavior changed. The compulsions came first, then the tics, then the rage you did not know was in him. You took him back to the pediatrician, who shrugged and said sometimes kids regress after illness and to give it time. You knew, walking out of the office, that this was not regression. This was something else.

It might be PANS or PANDAS, a pair of conditions where an infection appears to flip a switch in a child's brain and produce sudden, severe neuropsychiatric symptoms within days. The link to autism is real and underdiagnosed. Some research suggests children with autism may be more susceptible to these post-infectious flares than typically developing children. The path forward is to know what you are looking at, when to push for further evaluation, and how to support the behavioral side while the medical side gets worked out.

Understanding PANS and PANDAS

Understanding the role of PANS and PANDAS in children with autism starts with the acronyms. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. Both involve sudden, severe behavioral changes in children, often triggered by infections.

Differentiating PANS and PANDAS

PANS and PANDAS share most of their features. The key distinction is the trigger. PANDAS refers specifically to cases where the behavioral changes follow an infection caused by streptococcal bacteria, such as strep throat.

PANDAS is essentially a form of autoimmune encephalitis, a set of brain conditions driven by autoimmune-induced neuroinflammation. It is diagnosed only when other neurological or medical conditions (such as Sydenham's chorea or Tourette syndrome) cannot better explain the symptoms.

PANS is the broader term, used when the same kind of behavioral changes are triggered by any infection or other potential factor, not just strep.

Behavioral Symptoms of PANS/PANDAS

PANS/PANDAS affects children, most commonly between the ages of 3 and 12, with the average age of onset between 7 and 8 years. It is most common in the Kindergarten to second-grade range.

The behavioral changes can be sudden and severe. About 10% of children with PANS/PANDAS experience hallucinations, and about 20% develop eating disturbances. More common features include short-term memory problems, hyperactivity, aggressiveness, learning difficulties, and sensory hypersensitivity.

The severity of these symptoms, and their overlap with features common in autism, is why awareness of PANS/PANDAS matters for any family raising a child with autism. Knowing what to flag, and when, is often what separates a workable response from months of unexplained regression.

Connection with Autism

Evidence continues to grow for a meaningful connection between PANS/PANDAS and autism, including overlapping symptoms and elevated co-occurrence rates.

Overlapping Symptoms with Autism

Research suggests that a subset of children with autism may experience symptoms consistent with PANS/PANDAS. The overlap is real enough that clinicians working with autism populations need to be alert to it, especially when a previously stable child has a sudden behavioral change after an illness.

Children with autism appear to be at elevated risk for PANS/PANDAS, which are triggered by infections and produce sudden-onset obsessive-compulsive symptoms and tics. When present, PANS/PANDAS can sharply exacerbate symptoms commonly seen in autism, including anxiety, irritability, and aggression [3]. In our practice, the families who catch this earliest tend to be the ones who already know their child's baseline well enough to spot a discontinuous change rather than a gradual one.

Prevalence Rates in Children with Autism

Research has identified meaningful associations between PANS/PANDAS and autism spectrum disorder. A study reported that 43.6% of children with ASD met criteria for PANS, and 31.3% met criteria for PANDAS [3].

ConditionPrevalence in children with ASD
PANS43.6%
PANDAS31.3%

The estimated annual incidence of PANDAS/PANS in children ages 3–12 is approximately 1 in 11,765, with regional variation. Additionally, one study identified Folate Receptor Alpha Autoantibody (FRAA) in 63.8% of a study population diagnosed with PANS/PANDAS, suggesting that FRAA testing (FRAT) may be useful for guiding treatment in this group.

Understanding this connection matters because it changes how a child's symptoms get interpreted and treated. With this picture in hand, clinicians can build treatment plans that target the actual driver, not just the surface presentation.

Diagnosis and Evaluation

Diagnosing PANS/PANDAS in children with autism is challenging because of the symptom overlap. A careful workup is what separates a confident diagnosis from a wait-and-see plan.

Diagnostic Criteria for PANS/PANDAS

Diagnosis of PANS/PANDAS requires meeting specific criteria: acute onset of symptoms, association with infection, and exclusion of other conditions that could explain the picture [1]. Clinicians rule out other medical or neurological causes through differential diagnosis, which may include lab work, EEG, MRI, and other targeted assessments [4].

In practice, the workup combines a careful medical history, symptom timeline, and laboratory testing, including strep testing and blood work for autoimmune antibodies. A recent study highlighted the importance of screening for Folate Receptor Alpha Autoantibody (FRAA), which showed up in 63.8% of the studied PANS/PANDAS population.

Assessment Process for Children with Autism

When the child also has autism, the assessment has to layer onto the existing baseline. The evaluation typically includes a detailed medical history, a physical and neurological exam, and a careful review of developmental, behavioral, and social history. The key signal is change, what the child looked like a month ago compared to today.

Lab tests can include strep cultures, blood work for autoimmune antibodies, and other specialized panels based on the child's presentation. Because of how the symptoms can mirror ordinary autism-related behavior changes, a multidisciplinary team approach is often the cleanest path: a pediatrician, neurologist, psychiatrist, and clinicians experienced with both autism and PANS/PANDAS, working together.

In our practice, the most useful single tool during this window is data the medical team can actually use. The role of visual timers in managing expectations and other simple structural tools also tend to help families hold the line on routine while the medical workup is unfolding, since predictability lowers the volatility of the picture.

Done well, a comprehensive assessment is what allows treatment to begin in a targeted way instead of by guesswork.

Treatment Approaches

Treating PANS/PANDAS in children with autism is a coordinated effort across medical, behavioral, and therapeutic interventions.

Medical Interventions for PANS/PANDAS

Medical care anchors the treatment plan. Clinicians generally take a three-prong approach: treat and prevent infections, address immune system dysfunction, and apply behavioral and psychiatric interventions where appropriate.

Standard medical treatments target the symptoms and the underlying immune dysregulation. These can include antibiotics for active or recurrent infections, anti-inflammatory medications, and psychiatric medications for symptoms like OCD and anxiety [6]. Immunomodulatory treatments have also shown potential to alleviate behavioral, cognitive, and neurological symptoms in children with both autism and PANS/PANDAS [4].

Medical interventionPurpose
AntibioticsTreat the underlying or recurrent infections
Anti-inflammatory medicationsReduce inflammation, ease symptoms
Psychiatric medicationsAddress behavioral symptoms (OCD, anxiety)
Immunomodulatory treatmentsAddress underlying immune dysfunction

Behavioral and Therapeutic Interventions

Behavioral and therapeutic support is the other half of the picture. An integrative approach combining medical treatment with adapted therapy tends to be necessary, since neither side alone gets all of the symptoms.

Therapies like cognitive behavioral therapy (CBT), occupational therapy, and dietary work can each address pieces of the symptom picture.

TherapyPurpose
Cognitive behavioral therapy (CBT)Helps children cope with anxiety and behavioral symptoms
Occupational therapySupports sensory regulation and daily living skills
Dietary changesAddresses food sensitivities and overall health
Nutritional supplementsTargets nutrient deficiencies, supports immune function
Neurofeedback and biofeedbackTrains regulation through brain-based techniques

Behavioral support during a PANS/PANDAS flare is its own challenge. The child the family knew last month may be acting unrecognizably this month, and standard plans may need adjustment. In our practice, the importance of building trust in therapy relationships becomes especially relevant during flare windows, because consistency from familiar adults can be one of the few stabilizing forces in the child's day. Families weighing options can get specialized behavior support for your child coordinated with the medical workup, so the behavioral plan moves with the medical picture rather than against it.

Combining medical and behavioral interventions is what gives most families their workable path through a PANS/PANDAS episode. The right combination is individualized, and the plan usually needs to be revisited as the picture clarifies.

Importance of Early Intervention

Early identification of PANS/PANDAS in children with autism matters in a way that is hard to overstate. Catching the picture early can change a child's developmental trajectory.

Long-Term Impact of Untreated PANS/PANDAS

Untreated PANS/PANDAS can carry serious long-term consequences. Chronic inflammation can produce lasting changes in the brain that affect cognitive function, behavior, and physical health. Over time, sustained autoimmune activity may also affect other organ systems.

Beyond the medical impact, untreated PANS/PANDAS can drastically affect a child's ability to function at home, in school, and in social settings. Children may face significant difficulties in cognitive function, behavior, and physical health that hold them back in school and social life. The longer the picture goes unaddressed, the deeper the developmental impact tends to be, and the more ground families have to make up later.

Most families who navigate this well end up working with a multidisciplinary team, typically a pediatrician, neurologist, psychiatrist, and immunologist, plus the behavioral and educational team around the child. Early, coordinated intervention is what gives most kids the best shot at a strong recovery and continued growth.

Research on PANS/PANDAS and its connection to autism is still developing. What is well-established is that early management changes outcomes, and that families and clinicians who know what to look for are better positioned to act on it.

Collaborative Care

Treating PANS/PANDAS in children with autism takes a comprehensive, multidisciplinary approach, with an individualized plan built around the specific child.

Multidisciplinary Team Approach

A multidisciplinary team is the foundation of effective treatment. The team usually includes specialists in autism, immunology, neurology, and psychiatry, working together so that the medical, behavioral, and psychiatric pieces of the plan move in sync.

Because the relationship between PANS/PANDAS and autism is complex, pediatricians, neurologists, psychiatrists, and immunologists frequently collaborate on evaluation and management. The coordination is where the value lives. A finding from immunology only matters if behavioral support adjusts to it. A behavioral pattern only matters if the medical team is hearing about it.

Tailoring Treatment for Individual Needs

Each child needs a plan built for them. An integrative plan combines medical treatments with complementary therapies and is revised as the picture changes [7].

Medical care may include antibiotic therapy and anti-inflammatory treatments. Complementary approaches can include dietary changes, nutritional supplements, neurofeedback, and biofeedback.

The work is most useful when the team knows the child well enough to spot small changes and adjust the plan accordingly. That kind of close knowledge is one of the reasons many families find in-home ABA therapy useful during PANS/PANDAS episodes: the team sees the actual child in the actual environment where the symptoms show up, and the medical providers benefit from data that comes from real life rather than a clinic visit.

Why Mastermind Behavior

Mastermind Behavior is a BCBA-owned and operated in-home ABA therapy provider for children with autism in New Jersey, Georgia, and North Carolina. Because our team is in your home, we see the day as it actually happens, and we collect the kind of data that medical providers can put to use. Our BCBAs design each program and keep clinical authority over it, adjusting as the picture changes. Our Behavior Technicians run the trials in the rooms where the behavior actually shows up and notice small changes early, often before the next clinic visit. Our parent training coaches work alongside you so that what we do during sessions does not collapse the moment we leave. When a child's symptoms are post-infectious and medical care is still being sorted out, our team coordinates the behavioral side, keeps data the medical providers can actually use, and adjusts the program in real time as the underlying picture clarifies. The third or fourth week of a flare is often when families need the most steady support, and that is exactly where an in-home team can show up.

If your child's behavior changed suddenly after an illness and you are not sure what comes next, we can listen, look at the situation with you, and figure out where behavioral support fits alongside the medical workup. Schedule a free consultation at mastermindbehavior.com/contact or call 732.507.9883.

References

  1. PANDAS Physicians Network. "PANS/PANDAS Diagnostic Criteria." Available at https://www.pandasppn.org/
  2. Autism Society. "Co-occurring Conditions in Autism." Available at https://autismsociety.org/
  3. National Center for Biotechnology Information. "PANS and PANDAS in Autism Spectrum Disorder." Available at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10890663/
  4. American Academy of Pediatrics. "PANDAS: Frequently Asked Questions." Available at https://www.aap.org/
  5. Cleveland Clinic. "Anti-inflammatory Medicines." Available at https://my.clevelandclinic.org/health/treatments/11086-non-steroidal-anti-inflammatory-medicines-nsaids
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Mastermind Behavior Clinical Team
BCBA-owned ABA provider
Content produced by the clinical team at Mastermind Behavior, a BCBA-owned in-home ABA provider serving NJ, GA, and NC.
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