When my child was diagnosed with PANS / PANDAS, it was an overwhelming and isolating experience. There was little research, few answers, and it felt like I was navigating a maze alone.
The hardest part about this condition isn’t just the symptoms—it’s getting a PANDAS diagnosis. It’s complex, and many providers miss the signs or dismiss parent concerns because they aren’t trained to recognize the immune-brain connection.
As a PANS mom, I know how hard it is to find the right support—and I’m here to change that.
Unfortunately, with PANS and PANDAS, the underlying toxin triggers are often ignored. Instead, the focus turns to treating the symptoms with psychiatric medications such as SSRIs and antipsychotic medications to get the “behaviors under control.”
PANDAS Diagnosis: How Doctors Identify the Condition
The first step in diagnosing PANS and PANDAS is to understand what these clinical conditions look like. PANS is a clinical diagnosis for children who suffer from sudden onset of neuropsychiatric symptoms, including attachment disorders, obsessions, compulsions, or food restrictions.
Be a parent detective and keep a log of these symptoms, triggers and when and how often they occur. A 2017 survey of parents of children with PANS/PANDAS found that 8% had a gradual onset, and 87% experienced at least one additional episode beyond the presenting episode (Calaprice et al., 2017).
Lab Test for PANS / PANDAS Diagnosis
PANS/ PANDAS diagnoses are made after a clinical interview and exam.
No single test, not even the rapid strep tests, can diagnose these conditions. Lab work can provide useful information about what infections and toxins are present and what nutrients are missing. These test results can help a provider put the pieces of the puzzle together.
I recommend specific tests that give us information about issues or weaknesses that can be addressed.
Key Conditions to Consider
It is important to run lab work to look at the following:
- Streptococcal Infections
- Lyme Disease
- Tick-Borne Diseases
- Herpes 6, Coxsackie
- COVID
- Epstein-Barr
- Scarlet Fever
- Other Infections
This is how doctors diagnose PANDAS:
Testing for these conditions help confirm or rule out infections like strep, Lyme, Mycoplasma, and Epstein-Barr, which may be triggering symptoms. If you want to have a clear understanding of PANDAS tests, check out this supporting blog.
These tests also identify signs of inflammation or immune dysfunction, which can explain sudden-onset OCD, tics, or mood changes. Testing helps rule out other neurological or psychiatric conditions, ensuring that symptoms aren’t solely due to anxiety, ADHD, or another disorder.
These tests provide a clearer picture of what’s driving your child’s symptoms, to know if they fall under the PANS / PANDAS diagnostic criteria and from there, a provider can come up with the right treatment plan.
Rapid Strep Infection Test / Throat Culture
A throat culture is used to check for Group A Streptococcus bacteria, which can cause strep throat and may be linked to PANS /PANDAS in children. This simple test involves swabbing the back of the throat and tonsils to collect a sample, which is then tested in a lab.
While the Rapid Strep Test (RADT) offers quicker results, throat cultures are more accurate and can confirm if a recent or ongoing strep infection is contributing to PANDAS symptoms.
Lab tests like ASO (Antistreptolysin O) and Anti-DNase B titers can help identify past infections or immune responses (Swedos, et al., 2022). Unfortunately, some practitioners hesitate to diagnose PANDAS without confirming an active strep infection, even though this isn’t required for diagnosis.
Anaka’s Story
Anaka was only nine years old, but her behavior was so out of control that she had already been in and out of a psychiatric hospital half a dozen times before she got to me.
Her parents were just about to put her in a residential facility when they saw me talking about PANS and PANDAS on television. What I was talking about that day struck a chord, and they knew everything was wrong about Anaka’s diagnosis and treatment.
Anaka exhibited severe, obsessive compulsive behavior and symptoms that significantly impacted her overall functioning. Anaka did have PANS/PANDAS from Lyme disease, Bartonella, pneumonia, and other viruses.
We planned to calm her nervous system with PEMF, supplements, parent and cognitive behavioral therapy, and of course, got her to the doctor for medical treatment.
Slowly, Anaka’s hijacked brain began to calm, and so did her behavior. The old Anaka was back, never got sent away, and is off all psychiatric medications.
This is what the right diagnosis and treatment plan can do.
Why Do Doctors Miss PANS/PANDAS?
Physicians and mental health providers aren’t trained to look for underlying infections and toxins causing the behaviors and health issues. Providers are trained to treat symptoms and not look for root causes, which drives our entire health system.
The various psychiatric symptoms of autoimmune neuropsychiatric disorders associated with PANS, PANDAS, and AE look like clinical mental health issues. Since we have a pharma-driven mental health system when a patient presents with mental health symptoms, we assume a “chemical imbalance,” and the treatment for that is… a pill.
According to the National Institute of Mental Health, mental health issues are increasing. Kids with PANS and PANDAS often have other clinical diagnoses such as ADHD, sensory integration disorder, autism, speech delays, learning disabilities, handwriting problems, and other issues that can make diagnosing PANDAS more complex (Calaprice et al., 2017).
If it looks like a duck and quacks like a duck, it’s a duck. If the clinical symptoms are there and a thorough clinical and physical exam has ruled out other medical and mental health issues, treat it like PANS, PANDAS, or AE.
What are the Steps to Diagnose PANDAS and PANS?
I have been working with people whose mental and physical health has been impacted by infectious diseases for 30 years. With that experience, I have developed my way of diagnosing and treating PANS/PANDAS/AE.
Step 1 – Know and evaluate the clinical criteria
Step 2 – Review the symptoms and history
Step 3 – Get medical exam/blood work/ QEEG Brain Map/Rule out other conditions
Step 4 – Create a treatment plan. Give care to the child, adult, and/or family
Sounds pretty simple, right? Doctors aren’t ignoring PANS/PANDAS on purpose—but despite clear research, many still don’t follow a common-sense approach to diagnosis and treatment.
Kids with PANS/PANDAS need treatment for infections and inflammation, along with behavioral support to help them and their families manage this life-changing condition.
Curious about PANS/PANDAS? Dive into my Natural PANS/PANDAS Calm Brain Kit! It’s filled with practical tools and expert guidance, all rooted in my journey as a PANS mom and my decades of experience helping kids in the mental health space. Click here to learn more.
Parent Action Steps
What is pediatric autoimmune neuropsychiatric disorders?
Pediatric Autoimmune Neuropsychiatric Disorders (PANDAS) refer to a group of conditions in which a child’s symptoms, like OCD, tics, or anxiety, are triggered by an autoimmune response following a streptococcal infection (such as strep throat). The immune system mistakenly attacks the brain, leading to dramatic onset of symptoms.
Is early diagnosis important?
Early diagnosis is essential to initiate timely interventions, as it can lead to better treatment outcomes and improved quality of life for the child. Identifying and managing a streptococcal infection early can help mitigate neuropsychiatric symptoms associated with conditions like PANDAS.
When should I seek medical help for suspected PANS or PANDAS?
If your child exhibits sudden, severe neuropsychiatric symptoms, consult a qualified healthcare professional promptly to explore potential PANS or PANDAS diagnosis. A sore throat, often caused by invasive Group A Streptococcus infections, may also prompt seeking medical help.
Can PANS and PANDAS affect adults?
While primarily affecting children, there have been rare cases of PANS and PANDAS reported in adults. However, more research is needed to understand its impact on adults fully, including the occurrence of OCD and other neuropsychiatric symptoms.
Are there long-term effects of PANS and PANDAS on Obsessive Compulsive Disorder?
Without proper treatment, PANS and PANDAS may lead to persistent neuropsychiatric issues, emphasizing the importance of early diagnosis and intervention. Similarly, rheumatic fever, another condition related to Group A Streptococcus infections, can have significant long-term effects if not properly managed.
How can I support my child through PANS and PANDAS diagnosis and treatment?
Be patient, supportive, and maintain open communication with healthcare providers. When it comes to treating PANDAS, strategies may include medical interventions like plasma exchange and immunoglobulin (IVIG) for severely affected children, as well as psychiatric/behavioral treatments, immunomodulatory therapies, and antimicrobial treatments tailored to the patient or child’s symptoms alone. Educate yourself about the conditions to participate in your child’s treatment journey actively.
Citations:
Swedo, S., Menendez, C. M., & Cunningham, M. W. (2024). Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS). In J. J. Ferretti, D. L. Stevens, & V. A. Fischetti (Eds.), Streptococcus pyogenes: Basic biology to clinical manifestations (2nd ed., Chapter 26). University of Oklahoma Health Sciences Center. https://www.ncbi.nlm.nih.gov/books/NBK607260/
Calaprice, D., Tona, J., Parker-Athill, E. C., & Murphy, T. K. (2017). A survey of Pediatric Acute-Onset Neuropsychiatric Syndrome characteristics and course. Journal of Child and Adolescent Psychopharmacology, 27(7), 607–618. https://doi.org/10.1089/cap.2016.0105
Dr. Roseann is a mental health expert in PANS/PANDAS who frequently is in the media:
- Healthy Parenting Connector (Video) Why “My Kid is Acting Crazy” Might be PANS/PANDAS
- Living with Lyme (Podcast) Neurofeedback and biofeedback for PANS/PANDA
- Maria Rickert Hong (Audio) PANS/PANDAS
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.
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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.”
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).
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