Even though PANS and PANDAS is on the rise amongst children, getting a diagnosis is a challenge for parents who simply can’t find knowledge or qualified providers. A refusal of the medical establishment to accept this very real medical condition, has made diagnosis and treatment unnecessarily complex and hard on families.
PANS and PANDAS are complex disorders that are rooted in medical and autoimmune issues that lead to neuropsychiatric and neurocognitive problems. They are an immune system disorder associated with streptococcal bacteria, lyme bacteria, and other infections where a misdirected immune response causes the body to turn against itself.
Unfortunately because neuropsychiatric symptoms are primary features of these two separate conditions, the underlying infectious disease and toxin triggers are often ignored. Instead, the focus turns to treating the presenting mental health issue with psychiatric medications such as SSRIs, antipsychotic medications and ADHD medications to get the “behaviors under control.”
Loading up our kids with Ritalin or Adderall, Zoloft, Prozac or Abilify isn’t going to address the underlying infection and instead it just puts duct tape on a hole the size of the one that sank the Titanic.
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 did have PANS from lyme disease, bartonella, pneumonia, and a few other viruses. We made a plan to calm her nervous system with PEMF, supplements, parent and 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 and she never got sent away and is off all psychiatric medications. That is what the right diagnosis and treatment plan can do.
Why Do Doctors Miss PANS and PANDAS?
Physicians and mental health providers aren’t trained to look for underlying infections and toxins that are causing the behaviors and health issues. Providers are trained to treat symptoms and not look for root causes and that is what drives our entire health system.
The psychiatric and neurocognitive symptoms of PANS, PANDAS and AE look like a clinical mental health issue on the surface. Since we have a pharma-driven mental health system, when a patient presents with mental health symptoms then 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 which can make the diagnosis that much more complex.
Physicians and mental health providers just don’t understand that the sudden onset of a mental health problem isn’t normal. No, we aren’t having a dramatic uptick in schizophrenia and bi-polar disorder with psychosis; this dramatic increase in a sudden onset of psychiatric issues in a child or adult is due to underlying infections that result in a misdirected immune response where the body attacks itself and leads inflammation and neurocognitive and neuropsychiatric symptoms.
We don’t have a single test or battery of tests that can definitively diagnose PANS, PANDAS or AE or even many of the underlying infections such as tick-borne disease. While lab work that tests for the underlying infections and issues common to PANS, PANDAS and AE can be very helpful, it simply isn’t required for a diagnosis.
Some practitioners are hesitant to diagnose and treat without the presence of an infection at the time of diagnosis even though it is a clinical diagnosis and there is no “gold standard” test(s) that are required. 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 have ruled out other medical and mental health issues, then treat it like it is PANS, PANDAS or AE.
How are PANS and PANDAS Diagnosed?
The first step in diagnosing PANS, PANDAS and AE is to know what these clinical conditions look like.
With both PANS and PANDAS, there is a dramatic and sudden onset of a mental health issue, such as mood lability, OCD, tics, restricted eating, anxiety, and even a loss of skills such as bladder functioning or regressive behaviors.
With autoimmune encephalitis (AE) the onset can be gradual. In one 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.
Is There a Lab Test That Can Diagnose PANS and PANDAS?
PANDAS disease, PANS, and AE are made after a clinical interview and exam and there isn’t a single test or test panel that can diagnose these conditions. Lab work can provide useful information about what infections and toxins are present and what nutrients are missing.
I do recommend specific tests that give us information abouts issues or weaknesses that can be addressed. A blood test that checks for strep infection is important because strep may be missed on a swab test and delay treatment. It is important to run lab work to look at streptococcal infections, lyme disease, tick-borne disease, herpes 6, Coxsackie, COVID, Epstein-Barr, and other infections so the right treatment is given that addresses the underlying infection.
What Are The Steps to Diagnosing PANS and PANDAS?
Well, I have been working with people whose mental and physical health has been impacted by infectious disease for 25 years and with that experience, I have developed my own 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 – Give care to the child, adult and/or family
Sounds pretty simple, right? Well, it isn’t because of the ignorance of the system and providers. Despite research that provides clear evidence that these conditions exist, are diagnosable and treatable, somehow a common sense approach to diagnosis and treatment doesn’t prevail.
Instead, families are left to figure out every aspect of diagnosis and treatment on their own. Then, they are criticized for being “Google MD’s”, making this stuff up and “being negligent parents for not getting their kids to school and treating their mental health problems with psychiatric medication.” What I have to say about that involves a slew of profanities, so let’s forge ahead and get the right information out so families can get the proper diagnosis and treatment.
Is there a Checklist to Diagnose PANS and PANDAS?
Having worked with thousands whose mental health has been impacted by infectious disease, I developed a PANS/PANDAS Diagnostic Checklist, so providers can identify and treat those afflicted quicker. Of course when a person gets the right diagnosis, then they can get the right treatment. With pediatric autoimmune neuropsychiatric disorder, symptoms of PANDAS and PANS may be missed.
With treatment, children with PANS and PANDAS need to address infection and inflammation and the child and the family need behavioral support, as well as guidance to navigate this life altering disease.
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.
Are you looking for SOLUTIONS for your child or teen with PANS or PANDAS?
Dr. Roseann and her team are all about solutions, so you are in the right place!
There are 3 ways to work with Dr. Roseann:
- In-person at her Ridgefield, CT center
- Virtually with her at home neurofeedback and coaching programs
- By getting her BrainBehaviorReset™ Toolkit
You can get her books for parents and professionals, including: It’s Gonna Be OK™: Proven Ways to Improve Your Child’s Mental Health, Teletherapy Toolkit™ and Brain Under Attack: A Resource For Parents and Caregivers of Children With PANS, PANDAS, and Autoimmune Encephalopathy.
If you are a business or organization that needs proactive guidance to support employee mental health or an organization looking for a brand representative, check out Dr. Roseann’s professional speaking page to see how we can work together.
Dr. Roseann is a Children’s Mental Health Expert and Therapist who has been featured in/on hundreds of media outlets including, CBS, NBC, FOX News, PIX11 NYC, The New York Times, The Washington Post,, Business Insider, USA Today, CNET, Marth Stewart, and PARENTS. FORBES called her, “A thought leader in children’s mental health.”
She is the founder and director of The Global Institute of Children’s Mental Health and Dr. Roseann Capanna-Hodge. Dr. Roseann is a Board Certified Neurofeedback (BCN) Practitioner, a Board Member of the Northeast Region Biofeedback Society (NRBS), Certified Integrative Medicine Mental Health Provider (CMHIMP) 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) International Society for Neurofeedback and Research (ISNR) and The Association of Applied Psychophysiology and Biofeedback (AAPB).
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