PANDAS Diagnosis: Your Roadmap to Finding Answers

When my child was diagnosed with PANS a few years ago, it was an incredibly difficult time. At the time, there was very little research or awareness about the condition, and as a parent, it felt like I was navigating a confusing and isolating maze. I didn’t know where to turn or how to truly understand what was happening to my child.

As a mental health provider, I feel deeply compelled to support other families facing similar challenges. I understand how overwhelming it can be to feel like no one has answers or that you’re alone in this journey.

PANS and PANDAS are becoming more recognized, but for many families, getting a proper diagnosis remains an uphill battle. Limited awareness among medical professionals and ongoing debates in the medical community often leave parents feeling frustrated and unsupported. This lack of recognition can delay critical treatment, adding unnecessary stress to an already difficult situation.

Please know you are not alone. Your child’s condition is real, and with the right support, there is hope for healing.

Understanding PAN/PANDAS syndrome

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) are complex disorders rooted in medical and autoimmune issues that lead to neuropsychiatric and neurocognitive problems.

These are an autoimmune disorder associated with streptococcal bacteria, Lyme bacteria, and other infections where a misdirected immune response causes the body to turn against itself.

The Reality We’re Facing Today

Unfortunately, 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.”

How are PANS and PANDAS Diagnosed?

The first step in diagnosing PANS, PANDAS, and AE is to know 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.

PANDAS is a subset of PANS, a dramatic and sudden onset of a mental health issue, such as mood lability, obsessive-compulsive disorder (OCD), tics, restricted eating, anxiety, and even a loss of skills such as bladder functioning or regressive behaviors. PANDAS symptoms typically emerge following a strep infection and can be relapsing and remitting in nature, persisting throughout childhood and potentially into adolescence.

With autoimmune encephalitis (AE), the onset can be gradual. 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 (Calaprice et al., 2017).

Lab Test for PANS / PANDAS Diagnosis

PANDAS disease, PANS, and AE 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.

I recommend specific tests that give us information about 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.

PANDAS Test for Streptococcal Infections

It is important to run lab work to look at the following:

• streptococcal infections
• Lyme disease
• tick-borne disease
• herpes 6, Coxsackie
• COVID
• Epstein-Barr
• scarlet fever
• other infections

The right treatment should be given to address the underlying infection found. Strep bacteria can trigger autoimmune responses such as PANDAS syndrome in children.

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 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 rapid strep tests offer quicker results, throat cultures are more accurate and can confirm if a recent strep infection is contributing to PANDAS symptoms.

While lab tests can help identify underlying infections or issues, a diagnosis is primarily clinical, as there’s no single definitive test. Unfortunately, some practitioners hesitate to diagnose PANDAS without confirming an active infection, even though this isn’t required.

​​Common Symptoms of PANS/PANDAS

PANS/PANDAS can cause a sudden symptom onset and dramatic change in a child’s behavior, mood, or health. Symptoms may include:

• Obsessive-Compulsive Behaviors (OCD Symptoms): Intrusive thoughts, repetitive actions, or rituals. If you see other obsessive compulsive symptoms, it's recommended to seek help from health care providers.
• Motor or Vocal Tics: Sudden, uncontrollable movements or sounds.
• Severe Separation Anxiety: Extreme fear or distress when apart from parents or caregivers.
• Emotional Lability or Instability: Frequent mood swings, irritability, or emotional outbursts.
• Anxiety or Panic Attacks: Overwhelming fear or worry.
• Regression: Sudden loss of previously acquired skills, like handwriting or potty training.
• Sleep Disturbances: Difficulty falling or staying asleep, or night terrors.
• Urinary Changes: Increased frequency, urgency, or accidents.
• Decline in School Performance: Trouble with attention, focus, or memory.
• Sensory Sensitivities: Heightened reactions to sound, light, textures, or touch.
• Joint Pain or Stiffness: Physical discomfort without clear injury.

These signs and symptoms can help diagnose PANDAS coupled with clinical testing and lab tests.

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 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. That 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).

Physicians and mental health providers just don’t understand that the sudden onset psychological symptoms of a mental health problem isn’t normal. No, we aren’t having a dramatic uptick in schizophrenia and bipolar disorder with psychosis.

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?

How to test for PANDAS

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 – Give care to the child, adult, and/or family

Sounds pretty simple, right? It isn’t because of the system’s and providers’ ignorance. Despite research that provides clear evidence that these conditions exist and are diagnosable and treatable, a common sense approach to diagnosis and treatment doesn’t prevail.

Evaluating symptom severity is crucial, as children with PANDAS often experience dramatic changes in the intensity and duration of OCD and tic symptoms, with sudden worsening during infections and subsequent periods of gradual improvement.

Of course, when a person gets the right diagnosis, they can get the right treatment. With pediatric autoimmune neuropsychiatric disorder, symptoms of PANDAS and PANS, including ocd and tic disorders, may be missed.

With few treatment options, children with PANS PANDA disease need to address infection and inflammation, and the child and the family need behavioral support and guidance to navigate this life-altering disease.

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 30+ years of experience helping kids in the mental health space. Ready to take the first step toward calming your child’s brain? Click here to learn more.

Parent Action Steps