Paediatric acute-onset neuropsychiatric syndrome – Treatment

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Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) is a condition that can transform a child’s life almost overnight, bringing sudden and severe behavioral and psychiatric symptoms that deeply affect both the child and their family. Understanding the treatment possibilities—from standard therapies to innovative approaches being tested in clinical trials—offers hope for managing this challenging condition and improving quality of life for young patients.

When a Child Changes Overnight: Understanding Treatment Goals

The primary goal of treating Pediatric Acute-Onset Neuropsychiatric Syndrome is to reduce the sudden, severe symptoms that appear when a child develops the condition, and to help restore their ability to function at home, at school, and with friends. Treatment focuses on managing the immediate psychiatric and behavioral problems, addressing any underlying infections or inflammation that may be triggering the symptoms, and supporting the child and family through what can be a frightening and confusing experience.[1]

Because PANS involves a sudden onset of obsessive-compulsive symptoms or severe eating restrictions along with other neuropsychiatric problems, treatment must be carefully tailored to each child’s unique combination of symptoms and the severity of their condition. Some children may have mild symptoms that disrupt daily life but allow them to continue most activities, while others may experience severe, incapacitating symptoms that require urgent and intensive intervention.[10]

Treatment approaches depend on several factors, including how severe the symptoms are, whether an active infection is present, and how the child responds to initial interventions. The overall strategy involves three complementary approaches: treating the symptoms themselves with medications and therapies, removing the source of inflammation through antimicrobial treatment when infections are identified, and addressing disturbances in the immune system with anti-inflammatory or immune-modulating therapies.[10]

Medical societies and expert groups have developed treatment guidelines to help healthcare providers make informed decisions. The PANS/PANDAS Research Consortium, working with the National Institute of Mental Health, has published recommendations based on the best available evidence. However, research into PANS continues, and new therapeutic approaches are being explored in clinical trials around the world, offering hope for more effective treatments in the future.[13]

⚠️ Important
Treatment for PANS is not one-size-fits-all. Because the syndrome is thought to result from various disease mechanisms and can have multiple causes—ranging from infections to metabolic disturbances—each child requires an individualized treatment plan. What works for one patient may not work for another, and healthcare providers must monitor treatment effectiveness closely and adjust approaches as needed.

Standard Treatment Approaches: Managing Symptoms and Addressing Causes

Standard treatment for PANS involves a multi-pronged approach that addresses both the psychiatric symptoms and the underlying factors that may be causing or contributing to the condition. The treatment is generally organized into three main categories: psychiatric and behavioral interventions, antimicrobial therapies, and anti-inflammatory or immunomodulatory treatments.[12]

Psychiatric Medications and Behavioral Therapies

When a child presents with severe obsessive-compulsive symptoms, anxiety, mood changes, or other psychiatric manifestations of PANS, the most impairing symptoms are typically addressed first. Psychotropic medications—drugs that affect mental function, behavior, and emotions—may be used to help manage these symptoms. These medications work by affecting neurotransmitters in the brain, the chemical messengers that nerve cells use to communicate with each other.[12]

Cognitive behavioral therapy (CBT) is a form of psychotherapy that can be particularly helpful for children with PANS. This type of therapy helps children learn to manage their obsessive-compulsive symptoms, anxiety, and other behavioral problems by changing thought patterns and developing coping strategies. CBT is generally considered a cornerstone of treatment when the child is stable enough to participate in therapy sessions.[4]

Supportive interventions and educational accommodations are also crucial components of standard care. Children with PANS often experience deterioration in school performance, changes in handwriting, and difficulties with concentration and memory. Schools may need to provide special support, such as reduced workload, extra time for assignments, or temporary homebound instruction during severe symptom flares.[8]

Antibiotic Treatment for Infections

When a child with PANS has an active infection—particularly a streptococcal infection such as strep throat—treatment with antibiotics is essential. Antimicrobial therapy aims to eliminate the bacteria causing the infection, which may help reduce the immune system’s abnormal response that is thought to contribute to PANS symptoms.[10]

For children diagnosed with PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections), which is considered a subset of PANS, documenting and treating streptococcal infections is particularly important. Antibiotics not only treat active infections but may also be used for secondary prophylaxis—ongoing preventive treatment to reduce the risk of future strep infections that could trigger symptom relapses.[5]

The duration of antibiotic treatment varies depending on whether there is an active infection, the type of bacteria involved, and whether prophylactic treatment is being used. Some children may receive antibiotics for a few weeks to treat an active infection, while others might continue prophylactic antibiotics for months or longer to prevent recurrence of symptoms associated with repeated infections.[13]

Anti-Inflammatory and Immunomodulatory Therapies

Because PANS is thought to involve an immune-mediated process—where the immune system’s response to an infection or other trigger causes inflammation that affects the brain—treatments that reduce inflammation or modulate immune function are important components of standard care for many patients.[3]

Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen may be used as a first-line anti-inflammatory approach, particularly in cases with mild to moderate symptoms. These medications work by reducing inflammation throughout the body, which may help decrease brain inflammation thought to contribute to PANS symptoms.[13]

For children with more severe symptoms, corticosteroids (steroid medications) may be prescribed. These powerful anti-inflammatory drugs work by suppressing the immune system’s inflammatory response. Steroids such as prednisone or methylprednisolone are typically given as a short course—often lasting a few days to a few weeks—to avoid the potential side effects that can occur with longer-term use. Common side effects of steroid therapy include increased appetite, mood changes, difficulty sleeping, and elevated blood sugar levels.[13]

Intravenous immunoglobulin (IVIG) is another immunomodulatory treatment used in moderate to severe cases of PANS. IVIG involves infusing antibodies collected from healthy donors into the patient’s bloodstream. These antibodies can help regulate the immune system and reduce inflammation. The infusion typically takes several hours and may need to be repeated. Potential side effects include headache, fever, nausea, and rarely, more serious complications. IVIG is generally reserved for children who have not responded adequately to other treatments or who have severe, disabling symptoms.[13]

Plasmapheresis (also called therapeutic plasma exchange) is an intensive treatment sometimes used for severe cases of PANS. During this procedure, blood is removed from the patient, the plasma portion (which contains antibodies) is separated and discarded, and the blood cells are returned to the patient with replacement plasma or a plasma substitute. The goal is to remove harmful antibodies that may be attacking brain tissue. Plasmapheresis is typically reserved for the most severe cases where other treatments have failed.[13]

Treatment Duration and Monitoring

The duration of treatment for PANS varies considerably depending on the severity of symptoms, the child’s response to treatment, and whether symptoms follow a relapsing-remitting course—meaning periods of symptom flare-ups alternating with periods of relative calm. Treatment effectiveness should be evaluated at frequent intervals, and healthcare providers may need to modify the treatment plan accordingly.[12]

When symptoms resolve or stabilize, treatment can often be gradually tapered down or stopped. However, because PANS has a tendency to relapse, especially in connection with new infections or other triggers, treatment may need to be restarted if symptoms return. Follow-up appointments are typically recommended at one, three, six, and twelve months after symptom improvement to monitor for recurrence and adjust treatment as needed.[12]

Innovative Treatments Being Tested in Clinical Research

While standard treatments provide important options for managing PANS, researchers continue to investigate new therapeutic approaches that may offer better outcomes for children with this condition. Clinical trials are testing various innovative treatments, examining both their safety and their effectiveness in reducing symptoms and improving quality of life for patients with PANS.[1]

Understanding Clinical Trial Phases

Before discussing specific treatments being studied, it’s helpful to understand how clinical research works. New treatments typically go through several phases of testing. Phase I trials focus primarily on safety—determining whether a treatment is safe to use in humans and what dose is appropriate. Phase II trials examine whether the treatment actually works to improve the condition being studied, while also continuing to monitor safety. Phase III trials compare the new treatment against current standard treatments or placebo to determine whether it offers advantages over existing options.[10]

Novel Immunomodulatory Approaches

Because PANS is increasingly understood as an immune-mediated condition where the body’s defense system may be attacking brain tissue, researchers are exploring various ways to modify or regulate immune function more precisely than current treatments allow. These investigations build on evidence showing that in well-characterized groups of PANS patients, signs of post-infectious autoimmunity and inflammation are found in more than eighty percent of cases.[10]

Some research is examining different protocols and dosing strategies for immunomodulatory treatments already in use, such as IVIG, to determine the most effective and safest approaches. Other studies are investigating whether different types of immunotherapy or combinations of immune-modulating treatments might offer better outcomes than single-agent therapy. The goal is to target the abnormal immune response while minimizing side effects and the risk of suppressing the immune system too much, which could make children vulnerable to infections.[3]

Targeted Anti-Inflammatory Therapies

Research is ongoing into treatments that more specifically target the inflammatory processes thought to affect the brain in PANS. These approaches aim to reduce brain inflammation—sometimes referred to as “neuroinflammation”—without broadly suppressing the entire immune system. The concept is similar to treatments developed for other conditions where inflammation affects the nervous system.[3]

Some clinical investigations are looking at whether specific patterns of inflammation can be identified in individual patients, which might allow doctors to choose treatments that target the particular inflammatory pathways active in that child’s case. This personalized medicine approach could potentially improve treatment outcomes while reducing unnecessary exposure to medications that might not be effective for a particular patient.[15]

Research on Biomarkers and Diagnostic Tools

While not treatments themselves, clinical trials focused on identifying biomarkers—measurable indicators in blood, cerebrospinal fluid, or through imaging studies—are crucial for advancing PANS care. Researchers are examining whether specific antibodies, inflammatory markers, or brain imaging findings can help diagnose PANS more definitively, predict which children are at risk for severe symptoms, or guide treatment decisions.[15]

Studies using advanced imaging techniques have found abnormalities in the brains of children with PANS, including changes in specific brain regions. Understanding these patterns may help researchers develop treatments that specifically target the affected areas or processes. Additionally, research into genetic factors that might make some children more susceptible to PANS could eventually lead to preventive strategies or targeted therapies.[5]

⚠️ Important
Participation in clinical trials is voluntary and involves careful consideration of potential benefits and risks. Families considering enrollment should discuss thoroughly with their healthcare provider whether a particular trial is appropriate for their child. Clinical trials typically have specific eligibility criteria regarding age, symptom severity, previous treatments tried, and other factors. Information about ongoing PANS clinical trials may be available through academic medical centers specializing in PANS, such as Stanford University, which established the first multidisciplinary PANS service in 2012 and continues to conduct groundbreaking research.

Research Locations and Patient Eligibility

Clinical research on PANS is being conducted at various academic medical centers and research institutions, primarily in the United States but also increasingly in other countries. Major research programs exist at institutions including Stanford University in California, the University of South Florida, and other centers with specialized expertise in neuroimmune conditions. The National Institute of Mental Health has also been involved in PANS research since the condition was first characterized.[1]

Patient eligibility for clinical trials varies depending on the specific study. Generally, children must meet the diagnostic criteria for PANS, which includes having an abrupt onset of obsessive-compulsive symptoms or severe eating restrictions along with at least two other neuropsychiatric symptoms. Age requirements typically focus on children who developed symptoms before puberty, usually between ages three and twelve, though some studies may include adolescents. Trials may also require documentation of symptom timing, previous treatments tried, and evidence of inflammation or immune abnormalities.[9]

The PANS Research Consortium

A significant development in advancing PANS research has been the formation of the PANS/PANDAS Research Consortium, which brings together over thirty experts in various specialties to collaborate on understanding and treating the condition. This collaborative approach allows researchers to share data, coordinate studies, and develop consensus on best practices. The consortium has published treatment guidelines and diagnostic criteria that are used by clinicians worldwide.[13]

The consortium’s work exemplifies how coordinated research efforts can accelerate progress in understanding rare or newly recognized conditions. By pooling knowledge and resources, researchers can study larger groups of patients, which helps establish which treatments are most effective and identifies areas where further research is urgently needed.[10]

Most Common Treatment Methods

  • Psychiatric Medications
    • Psychotropic drugs used to manage obsessive-compulsive symptoms, anxiety, mood disorders, and other neuropsychiatric manifestations of PANS
    • Selected and dosed based on the specific symptoms causing the most impairment to the child
    • Work by affecting neurotransmitters in the brain to help regulate mood, thoughts, and behavior
  • Cognitive Behavioral Therapy
    • Psychotherapy approach that helps children manage obsessive-compulsive symptoms and anxiety
    • Teaches coping strategies and helps modify thought patterns that contribute to distress
    • Most effective when the child is stable enough to actively participate in therapy sessions
  • Antibiotic Treatment
    • Antimicrobial therapy to treat active bacterial infections, particularly streptococcal infections
    • Secondary prophylaxis with ongoing antibiotics to prevent recurrent infections that might trigger symptom relapses
    • Duration varies from weeks for acute infections to months for preventive treatment
  • Anti-Inflammatory Medications
    • Nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen for mild to moderate cases
    • Corticosteroids (steroid medications) for more severe symptoms, typically given as short courses
    • Work by reducing inflammation that may be affecting brain function
  • Immunomodulatory Therapies
    • Intravenous immunoglobulin (IVIG) infusions for moderate to severe cases not responding to other treatments
    • Plasmapheresis (therapeutic plasma exchange) for severe, treatment-resistant cases
    • Aim to regulate immune function and remove harmful antibodies that may be attacking brain tissue
  • Supportive Interventions
    • Educational accommodations to support children experiencing deterioration in school performance
    • Family support and education to help parents understand and manage the condition
    • Symptom monitoring tools to track changes and guide treatment adjustments

Ongoing Clinical Trials on Paediatric acute-onset neuropsychiatric syndrome

References

https://med.stanford.edu/pans.html

https://www.nimh.nih.gov/health/publications/pandas

https://pmc.ncbi.nlm.nih.gov/articles/PMC10225150/

https://my.clevelandclinic.org/health/diseases/23553-pandas-syndrome

https://www.pandasppn.org/what-are-pans-pandas/

https://www.stanfordchildrens.org/en/services/pans-pandas/what-are-pans-pandas.html

https://www.yalemedicine.org/clinical-keywords/pediatric-acute-onset-neuropsychiatric-syndrome

https://www.healthychildren.org/English/health-issues/conditions/emotional-problems/Pages/pans-pediatric-acute-onset-neuropsychiatric-syndrome.aspx

https://bestpractice.bmj.com/topics/en-us/3000321

https://pmc.ncbi.nlm.nih.gov/articles/PMC5610386/

https://my.clevelandclinic.org/health/diseases/23553-pandas-syndrome

https://bestpractice.bmj.com/topics/en-us/3000321

https://www.pandasppn.org/guidelines/

https://pubmed.ncbi.nlm.nih.gov/28722464/

https://pmc.ncbi.nlm.nih.gov/articles/PMC10225150/

https://www.healthychildren.org/English/health-issues/conditions/emotional-problems/Pages/pans-pediatric-acute-onset-neuropsychiatric-syndrome.aspx

https://med.stanford.edu/pans.html

https://iocdf.org/pandas/

https://www.helpguide.org/family/parenting/pans-and-pandas

https://www.yalemedicine.org/clinical-keywords/pediatric-acute-onset-neuropsychiatric-syndrome

FAQ

What is the difference between PANS and PANDAS?

PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is actually a subset of PANS. PANDAS requires documentation of a recent streptococcal infection such as strep throat, along with the sudden onset of OCD or tics. PANS is the broader umbrella term that includes all cases of abrupt-onset OCD or severe eating restrictions with additional neuropsychiatric symptoms, regardless of whether a strep infection is identified. Other infections such as influenza, Mycoplasma pneumonia, or Lyme disease may also trigger PANS, and in some cases no specific trigger is found.

How is PANS diagnosed if there’s no specific test for it?

PANS is diagnosed clinically, meaning doctors make the diagnosis based on the pattern and timing of symptoms rather than a single laboratory test. The key features are an unusually abrupt onset—typically within 72 hours—of obsessive-compulsive symptoms or severely restricted eating, along with at least two other neuropsychiatric symptoms that also appeared suddenly. Doctors must also rule out other conditions that could cause similar symptoms, such as autoimmune encephalitis, Sydenham’s chorea, or other neurological or medical disorders. While there’s no single test that confirms PANS, healthcare providers may order various tests to look for infections, immune abnormalities, or inflammatory markers that support the diagnosis.

Can my child recover from PANS completely?

The course of PANS varies significantly from child to child. Many children experience a relapsing-remitting pattern, with periods when symptoms flare up alternating with periods of relative calm or even complete symptom resolution. With appropriate treatment, many children show significant improvement and some recover completely, returning to their baseline level of functioning. However, the condition can follow a chronic course in some cases. Early recognition and treatment, along with prevention of triggering infections when possible, may improve the likelihood of better long-term outcomes. Follow-up monitoring is important even after symptoms improve, as relapses can occur.

Are there any long-term effects of the treatments used for PANS?

The potential for long-term effects depends on which treatments are used and for how long. Short courses of antibiotics or anti-inflammatory medications like ibuprofen typically have minimal long-term effects. Corticosteroids are usually given as brief courses to minimize side effects, though repeated courses may have cumulative effects. Treatments like IVIG and plasmapheresis are generally considered safe when medically necessary, though they do carry some risks. Long-term use of psychiatric medications requires ongoing monitoring, as these can have various side effects that need to be balanced against their benefits. Healthcare providers work to use the minimum effective treatments and taper them when possible as symptoms improve.

Should my child with PANS avoid contact with other children to prevent infections?

While preventing infections is an important consideration in managing PANS, complete isolation is neither practical nor recommended, as social interaction is important for children’s development and well-being. Instead, reasonable precautions include practicing good hand hygiene, keeping your child home when they’re sick, ensuring they’re up to date on recommended vaccinations, and possibly avoiding very crowded places during peak infection seasons. Some children may receive prophylactic antibiotics to prevent strep infections specifically. The goal is to reduce infection risk while allowing your child to maintain as normal a life as possible, including school attendance and social activities when they’re well enough to participate.

🎯 Key Takeaways

  • PANS treatment requires a three-pronged approach: managing psychiatric symptoms, treating infections, and addressing immune system abnormalities
  • Cognitive behavioral therapy combined with psychiatric medications forms the foundation for managing the sudden obsessive-compulsive symptoms and anxiety
  • Antibiotics are essential when strep or other bacterial infections are present and may be used long-term to prevent relapses
  • Anti-inflammatory treatments range from over-the-counter NSAIDs to intensive therapies like IVIG and plasmapheresis depending on severity
  • Stanford University pioneered specialized PANS care in 2012 and continues leading research into new treatments through clinical trials
  • The PANS Research Consortium brings together over 30 experts who collaborate to advance understanding and develop better treatment approaches
  • Treatment must be individualized for each child and frequently monitored for effectiveness, with adjustments made as symptoms change
  • Research shows that more than 80% of well-characterized PANS cases have evidence of post-infectious autoimmunity or inflammation