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PANS Diagnostic Criteria: How to Diagnose and Support Children with PANS/PANDAS

PANS Diagnostic Criteria: How to Diagnose and Support Children with PANS/PANDAS

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Dr. Roseann Capanna-Hodge

Even today, many parents are still in the dark about what PANS/PANDAS is and how to get the right diagnosis for their child. If that’s you, you’re not alone—so many parents struggle to find answers while their child’s symptoms spiral. 

The first step is to get parents to understand what a PANS diagnostic criteria is. What are the symptoms of PANS / PANDAS? What makes it different from other medical disorders? There are different clinical and lab tests to confirm the correct diagnosis. And with the right answers, you can get the right help and start your child on the path to healing.

PANS and PANDAS are complex conditions that can cause a symptom onset, whether it be OCD-like, behavior, emotional lability, and even motor abnormalities—all triggered by an immune and nervous system gone haywire. To get your child the right support, you need to understand what’s really going on and how to create a treatment plan with your provider that meets their unique needs.

How PANS/PANDAS be Diagnosed Clinically

Diagnosing PANS/PANDAS isn’t always straightforward—it often requires ruling out other conditions first. Research by Prato et al. (2021) highlights that testing takes a multidisciplinary approach, combining both medical and psychiatric evaluations.

Having said that, when it comes to testing, there isn’t a definitive single test, but rather a combination of lab work and clinical evaluation to piece together the full picture. 

The first step, really, is to find the right provider. You need a knowledgeable and experienced mental health professional who can break down what these tests actually mean—so you’re not left guessing. 

Look for a provider who understands immune-driven neuropsychiatric conditions. From the test results, they can then evaluate and create a treatment plan that supports your child’s healing and gets them back to thriving.

What is the diagnostic criteria for PANS/PANDAS?

For PANS, diagnosis requires sudden onset of OCD symptoms or severe eating restrictions (eating disorder), plus at least two additional symptoms:

  • Anxiety (panic attacks, separation anxiety, or extreme anxiety)
  • Oppositional behaviors (behavioral regression, mood swings, developmental regression)
  • Tics
  • Sensory abnormalities (other sensory issues)
  • Sleep disturbances,
  • Urinary symptoms (urinary frequency)

These symptoms typically have an abrupt onset and can rapidly become severe.

#443 - Blog Things You Need to Know About PANDASPANS Testing, Diagnosis & Treatment

Preparing for a Doctor's Visit

Getting the right PANS/PANDAS diagnosis starts with being prepared—because the more information you bring, the faster you can get answers and the right help for your child.

  1. Get a notebook and keep a detailed symptom log that includes when symptoms started, any illnesses or triggers, mood shifts, regressions, and changes in sleep or eating.

  2. Bring copies of any past lab work, infection panels, or psychiatric evaluations to avoid unnecessary testing and give your provider a full picture.

  3. Prepare Key Questions for Your Provider
    • Do you have experience diagnosing PANS/PANDAS?
    • Which tests do you recommend for my child?
    • What are the next steps if test results are inconclusive?
    • How do you approach treatment—do you address infections, inflammation, and nervous system dysregulation?

Trust your instincts—if your provider dismisses your concerns, don’t hesitate to seek a second opinion from someone experienced in PANS/PANDAS.

Supporting Your Child

Medical testing can feel overwhelming for your child too, you can help them to stay calm by preparing ahead of time. If you feel they’re getting nervous during multiple doctor’s visit, use breathing exercises, fidgets  or bring a comfort item like a teddy.

Validate their feelings by reassuring them that it’s okay to feel anxious, and plan something positive after a doctor’s visit—whether it’s a special treat, extra downtime, or a fun activity—to make the experience less stressful.

Diagnosing PANS / PANDAS

Here are common blood tests and assessment processes:

 

1. Strep & Infection Testing

  • Throat culture & rapid strep test – Checks for an active Group A strep infection.
  • ASO (Antistreptolysin O) & Anti-DNase B titers – Measures past strep infections.
  • Mycoplasma pneumoniae IgG/IgM – Checks for Mycoplasma infections, a common trigger in PANS / PANDAS
  • Lyme disease panel – Rules out Lyme as a potential immune trigger.
  • EBV (Epstein-Barr Virus) panel – Assesses past or active Epstein-Barr infections.

2. Immune System & Inflammation Markers

  • C-reactive protein (CRP) & Erythrocyte Sedimentation Rate (ESR) – Indicates systemic inflammation.
  • Cytokine panels – Assesses immune system activity.

3. Autoimmune & Neurological Testing

  • Anti-neuronal antibodies (D1, D2, Lysoganglioside, Tubulin) – Used in the PANDAS panel to check for autoantibodies affecting the brain.
  • Blood-brain barrier permeability tests – Looks for markers of neuroinflammation.
  • Dopamine receptor antibodies – Checks for immune system attacks on dopamine receptors, affecting behavior and movement.

4. QEEG Brain Mapping (Quantitative EEG)

  • Identifies patterns of nervous system dysregulation, a key factor in PANS/PANDAS
  • Helps tailor neurofeedback and PEMF treatment to calm and regulate the brain.

5. Family Medical History 

  • Your child's medical history is also an important piece to look into. This helps identify any genetic predisposition or previous streptococcal infections. 
  • Can reveal patterns that might contribute to the child's health and help tailor the treatment plans.

I know what you’re thinking, “That’s a long list!”.

Don’t get overwhelmed. Not every child with PANS/PANDAS needs all of these—what’s needed depends on their symptoms, history, and potential triggers. Since PANS/PANDAS is a clinical diagnosis, lab tests help rule out infections, inflammation, and immune dysfunction, but they don’t provide a single definitive answer.

A skilled provider will guide you in choosing the right tests for your child, rather than over-testing and getting lost in unnecessary data. The goal? Find the root cause and get the right treatment—not just chase test results.

It would be good to note, though, that while doctors have seen real improvements using integrative, immune-based protocols, PANS and PANDAS remain to be deeply debated within the medical community. The need for large-scale studies continue to exist, as well as the need to have long-term data (APA, undated).

This is why psychotherapy remains to be a go-to solution for parents with PANS/PANDAS children – it is safe and has no known major side effects like medication.

If you’re looking for support and answers about PANS/PANDAS, check out my Natural PANS and PANDAS Calm Brain Kit to help you decode your child’s symptoms. With this parent kit, you can start diagnosing PANS at home, be a parent detective and gather the right information to help your provider make an accurate diagnosis —so you can start connecting the dots and get your child the right help.

What comes after a PANDAS diagnosis?

After a PANDAS diagnosis, treatment focuses on clearing infections (typically with antibiotics if strep bacteria is present), reducing inflammation with anti-inflammatory medications or supplements, and supporting the immune system through probiotics or, in some cases, IVIG. Addressing nervous system dysregulation with neurofeedback, PEMF, or calming therapies can help, along with targeted behavioral support for OCD, anxiety, or tics. A comprehensive, multi-layered approach is key to recovery.

Can PANS / PANDAS come with other medical conditions?

Yes, PANS/PANDAS often occurs alongside other conditions like Lyme disease, Mycoplasma, mold toxicity, autoimmune disorders, and gut issues. Many children also have ADHD, OCD, anxiety, or sensory processing challenges, making a comprehensive approach to treatment essential.

Why is pans/pandas one of the most overlooked medical conditions?

PANS/PANDAS is often overlooked because symptoms can mimic OCD, ADHD, anxiety, or mood disorders, leading to misdiagnosis. Many medical providers are unfamiliar with the immune-brain connection, and since there’s no single blood test, diagnosis relies on clinical history and pattern recognition, which many doctors miss.

Can my child have PANS or PANDAS without an acute onset of neuropsychiatric symptoms?

Acute onset is a key feature of PANS/PANDAS. Symptoms typically appear suddenly and dramatically, often overnight. However, some cases may have a more subtle onset or flare in waves, making it harder to recognize. Tracking symptom patterns can help with diagnosis.

Can rheumatic fever cause PANS and PANDAS?

Yes, rheumatic fever, an inflammatory disease that can develop after a strep throat infection, has been associated with PANDAS due to its connection with streptococcal infections. While PANS encompasses a broader range of triggers beyond strep infections, rheumatic fever can contribute to the development of neuropsychiatric symptoms in susceptible individuals.

Is there a specific age group affected by PANS and PANDAS?

PANS and PANDAS can affect children of any age, but they often manifest in early childhood or adolescence. However, cases in adults have also been reported, although less frequently.

Can dietary changes or nutritional supplements help manage the symptoms of PANDAS and other mental health issues?

Some parents have reported improvements in their child's symptoms with dietary modifications, such as eliminating gluten or dairy and supplements like omega-3 fatty acids or probiotics. However, it's essential to consult with a healthcare professional before making any significant changes to your child's diet or supplement regimen.

Are there any long-term effects or complications associated with PANDAS?

Long-term effects of PANDAS can vary depending on factors such as the severity of symptoms, effectiveness of treatment, and individual differences. Some children may experience lingering neuropsychiatric symptoms or cognitive challenges, while others may fully recover with appropriate intervention.  

How can parents advocate for their child's educational needs with PANDAS?

It's not a surprise to see deterioration in school performance of pandas patients. Parents can work with their child's school to develop a 504 or individualized education plan (IEP) to accommodate their educational needs. Providing the school with information about PANDAS, including symptoms, triggers, and potential academic impacts, can help teachers and administrators better support the child. 

How can parents further support a child with PANS or PANDAS?

Parents can support their children by seeking early intervention, advocating for appropriate medical care, and educating themselves about PANS/PANDAS. Establishing a supportive environment at home, maintaining open communication, and connecting with support groups can also benefit the child and the family.

Citations

American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR). Retrieved from https://www.psychiatry.org/psychiatrists/practice/dsm

Pozza, A. (2017). Cognitive behavioral therapy and acceptance and commitment therapy as augmentation treatment for paediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS): A case report. European Psychiatry, 41(S1), S781–S782. https://doi.org/10.1016/j.eurpsy.2017.01.1488

Prato, A., Gulisano, M., Scerbo, M., Barone, R., Vicario, C. M., & Rizzo, R. (2021). Diagnostic Approach to Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections (PANDAS): A Narrative Review of Literature Data. Frontiers in Pediatrics, 9. https://doi.org/10.3389/fped.2021.746639

Dr. Roseann is a mental health expert in PANS/PANDAS who frequently is in the media:

Always remember… “Calm Brain, Happy Family™”

Disclaimer: This article is not intended to give health advice and it is recommended to consult with a physician before beginning any new wellness regime. *The effectiveness of diagnosis and treatment vary by patient and condition. Dr. Roseann Capanna-Hodge, LLC does not guarantee certain results.

Are you looking for SOLUTIONS for your struggling child or teen? 

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© Roseann-Capanna-Hodge, LLC 2024

Dr. Roseann is a Children’s Mental Health Expert and Licensed Therapist who has been featured in/on hundreds of media outlets including The Mel Robbins Show, CBS, NBC, PIX11 NYC, Today, FORBES, CNN, The New York Times, The Washington Post, Business Insider, Women’s Day, Healthline, CNET, Parade Magazine and PARENTS. FORBES called her, “A thought leader in children’s mental health.

Dr. Roseann - Brain Behavior Reset Parent Toolkit

She coined the terms, “Re-entry panic syndrome” and “eco-anxiety” and is a frequent contributor to media on mental health. 

Dr. Roseann Capanna-Hodge has three decades of experience in working with children, teens and their families with attention-deficit hyperactivity disorder (ADHD), autism, concussion, dyslexia and learning disability, anxiety, Obsessive Compulsive Disorder (OCD), depression and mood disorder, Lyme Disease, and PANS/PANDAS using science-backed natural mental health solutions such as supplements, magnesium, nutrition, QEEG Brain maps, neurofeedback, PEMF, psychotherapy and other non-medication approaches. 

She is the author of three bestselling books, It’s Gonna Be OK!: Proven Ways to Improve Your Child's Mental Health, The Teletherapy Toolkit, and Brain Under Attack. Dr. Roseann is known for offering a message of hope through science-endorsed methods that promote a calm brain. 

Her trademarked BrainBehaviorResetⓇ Program and It’s Gonna be OK!Ⓡ Podcast has been a cornerstone for thousands of parents facing mental health, behavioral or neurodevelopmental challenges.

She is the founder and director of The Global Institute of Children’s Mental Health, Neurotastic™Brain Formulas and Dr. Roseann Capanna-Hodge, LLC. Dr. Roseann is a Board Certified Neurofeedback (BCN) Practitioner, a Board Member of the Northeast Region Biofeedback Society (NRBS), Certified Integrative Mental Health Professional (CIMHP) and an Amen Clinic Certified Brain Health Coach.  She is also a member of The International Lyme Disease and Associated Disease Society (ILADS), The American Psychological Association (APA), Anxiety and Depression Association of America (ADAA) National Association of School Psychologists (NASP), International OCD Foundation (IOCDF).

© Roseann-Capanna-Hodge, LLC 2024

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