Tag Archive for: OCD in children

Part 3: Diagnosis & The Ongoing Debate

By Cristina McMullen, Bioenergetic Practitioner, Longevity Health Center

 

If you’ve been navigating PANDAS or PANS with your child, you’ve probably already noticed something frustrating: Not everyone agrees on what it is, or how to diagnose it.

Some clinicians believe these conditions are often missed. Others are more cautious and feel the criteria can sometimes be applied too broadly. And in the middle of that debate are families watching very real, very sudden changes in their children.

You might hear phrases like “correlation doesn’t equal causation.” But when a child changes overnight—developing OCD, anxiety, tics, or severe behavioral regression—parents are often left trying to make sense of a pattern that feels very real in front of them.

That gap between lived experience and evolving science is part of what makes this condition so complex.

How PANDAS and PANS Are Diagnosed

One of the most important things to understand is this:

PANDAS and PANS are clinical diagnoses. They are not confirmed by a single lab test.

Instead, they are identified based on a child’s symptom presentation, timing, and medical history.

PANDAS is typically considered when there is:

  • A sudden onset or dramatic worsening of OCD and/or tics
  • A temporal association with a streptococcal infection
  • Supporting clinical history suggesting immune involvement

Labs such as ASO and Anti-DNase B titers may be ordered to evaluate for recent strep exposure, but they are not diagnostic on their own. Antibody levels can vary depending on timing, prior immune response, and whether the infection was recent or partially treated. Negative results can still be misleading because not all children will show elevated or rising levels, even when infection appears to be a trigger.

This means diagnosis cannot rely on labs alone—it requires careful clinical evaluation of symptom timing and pattern.

PANS is diagnosed when there is:

  • A sudden onset of OCD or restrictive eating
  • Along with at least two additional neuropsychiatric or behavioral symptoms (such as anxiety, irritability, regression, sleep disruption, or urinary symptoms)
  • No requirement for a known infectious trigger

Because there is no single identifiable cause, PANS is also a clinical syndrome defined by symptom pattern, not a laboratory marker.

Where Testing Fits In

Laboratory testing can still be helpful, but primarily as supporting information, not confirmation of diagnosis.

Testing may be used to explore:

  • Evidence of recent or past infections
  • Immune system activation
  • Inflammatory or metabolic contributors that may be worsening symptoms

However, no lab test currently available can definitively confirm or rule out PANDAS or PANS. These results must always be interpreted in the context of the full clinical picture.

What About the Cunningham Panel and Other Advanced Testing?

You may also hear about the Cunningham Panel, a specialized test developed to evaluate certain antibodies and immune signaling patterns that may be associated with neuropsychiatric symptoms.

It measures markers such as:

  • Anti-dopamine receptor antibodies (D1 & D2)
  • Anti-lysoganglioside antibodies
  • Anti-tubulin antibodies
  • CaMKII activation (a signaling marker related to immune activity in the brain)

The intention is to explore whether immune dysregulation may be contributing to symptoms.

However, there are several important considerations for families:

The Cunningham Panel is not a diagnostic test for PANDAS or PANS, and its clinical reliability remains debated.

It is also:

  • Expensive, often costing close to one thousand dollars
  • May not be covered by insurance
  • Variable in its results, which can shift depending on whether a child is in a symptom flare or relatively stable at the time of testing

Because of this, results may look very different at different points in a child’s journey.

Some clinicians still use the panel as a supportive tool in complex cases, while others do not rely on it due to inconsistency and lack of broad clinical consensus.

A More Accessible Option: Neural Zoomer

Another test some integrative providers may consider is the Neural Zoomer, a broader panel that evaluates immune reactivity to a wide range of brain and nervous system proteins.

This test looks at antibodies associated with:

  • Neuroinflammation
  • Brain and nerve tissue reactivity
  • Neurotransmitter receptors (such as dopamine and GABA)
  • Blood–brain barrier integrity
  • Infection-related immune responses

Because it casts a wider net, it may help identify patterns of immune activation affecting the nervous system that standard labs do not capture.

In many cases, it is:

  • Somewhat more affordable than the Cunningham Panel (though still typically out-of-pocket)
  • More commonly used in integrative and functional medicine settings
  • Available as a simple blood test

However, it’s important to understand:

  • Like the Cunningham Panel, it is not diagnostic for PANDAS or PANS
  • Pediatric reference ranges are limited, so results require thoughtful interpretation
  • It reflects immune reactivity, not necessarily causation or active disease

The Bigger Picture

Both of these tests can offer insight into immune patterns—but neither provides a definitive answer.

They may help answer questions like:

  • Is there evidence of immune activity affecting the brain?
  • Are there patterns that suggest inflammation or barrier disruption?

But they cannot answer:

  • Is this definitively PANDAS or PANS?

That diagnosis still comes back to clinical history, symptom pattern, and timing.

In many cases, families gain more clarity by focusing first on patterns and response to treatment, rather than relying heavily on advanced testing alone.

Is PANDAS/PANS Underdiagnosed or Overdiagnosed?

The honest answer is that both perspectives exist.

Some children with sudden neuropsychiatric changes may go years without anyone considering an immune or post-infectious component. Others may receive a PANDAS/PANS label without a clearly supported trigger.

This is part of why diagnosis can feel so confusing—it relies heavily on clinical judgment rather than a single definitive test.

Our Approach: Looking at the Whole Picture

At Longevity Health Center, we take a step back from one-size-fits-all answers.

Instead, we focus on patterns:

  • When did symptoms begin, and how quickly did they change?
  • What infections, immune stressors, or environmental triggers came before onset?
  • What does the child’s immune and health history show over time?
  • How do symptoms shift with treatment or stress?

Because in complex neuroimmune conditions, no single lab test or checklist tells the full story.

Careful observation, clinical pattern recognition, and individualized evaluation are essential.

Encouragement for Parents

If you’re in the middle of this journey, it’s okay to feel uncertain.

Science is still evolving. The opinions can be conflicting. And yet—your observations about your child matter.

You are often the first to notice the pattern. And in conditions where timing and subtle changes are important, that insight can be one of the most valuable pieces of the clinical picture.

How Infections and Inflammation Reach the Brain

By Cristina McMullen, Bioenergetic Practitioner, Longevity Health Center 

 

In Part 1, we explored how an autoimmune response can target the brain in children with PANDAS and PANS.

Now let’s go deeper.

Because understanding how inflammation reaches the brain helps explain why some children spiral into chronic symptoms — and why others recover.


When Inflammation Doesn’t Turn Off

In a healthy immune response, inflammation is temporary.

A pathogen enters. The immune system responds.
The invader is eliminated. The immune system quiets.

But in autoimmune states, that final step fails.

Macrophages and other immune cells continue releasing inflammatory cytokines. Antibodies remain active. The immune system stays on high alert.

This prolonged immune activation doesn’t just circulate in the bloodstream — it affects barriers designed to protect vital organs.

One of the most important of those barriers is the blood–brain barrier (BBB).


The Blood–Brain Barrier: The Brain’s Security System

The blood–brain barrier is a tightly woven network of capillaries that separates circulating blood from brain tissue.

Under normal circumstances, it prevents bacteria, viruses, large proteins, and circulating antibodies from entering the brain.

But during systemic inflammation, those tight junctions can loosen.

Cytokines increase vascular permeability. Capillaries expand. The barrier becomes more permeable than it should be.

This is where autoimmune conditions become neurological conditions.

When neuroactive antibodies cross into brain tissue, they don’t behave passively. They bind. They signal. They alter neurotransmitter activity.

In PANDAS and PANS, the region most consistently implicated is the basal ganglia.


The Basal Ganglia: Where Movement, Emotion, and Habit Intersect

The basal ganglia are not a single structure but a network of nuclei located deep within the brain. They include:

The caudate nucleus

The putamen

The globus pallidus

The substantia nigra

The subthalamic nucleus

Each region contributes to coordination between movement, cognition, motivation, and emotion.

The caudate nucleus, for example, plays a role in inhibitory control and procedural learning. The putamen influences movement patterns and habit formation. The substantia nigra helps regulate dopamine — a neurotransmitter central to reward and motor control.

When inflammation affects this network, the results can be profound:

Repetitive motor movements

Intrusive thoughts

Compulsive behaviors

Emotional volatility

Impulsivity

Sensory dysregulation

Imaging studies during acute PANDAS episodes have demonstrated enlargement of the caudate and putamen. In some documented PANS cases associated with Lyme neuroborreliosis, MRI findings have even shown infarction within basal ganglia structures.

These are not subtle findings.

They underscore an important reality: this is not “bad behavior.” This is inflamed neural circuitry.


Beyond Strep: Other Triggers of PANS

While PANDAS is specifically associated with Group A Streptococcus, PANS expands the list of potential triggers.

Let’s walk through some of the most commonly investigated.

Epstein–Barr Virus (EBV)

EBV is incredibly common. Many children are exposed to it early in life.

Testing typically includes:

VCA IgM (indicating recent infection)

VCA IgG (which persists long term)

EBNA antibodies (which appear later)

Early Antigen (EA) antibodies (which may suggest active infection)

Interpreting EBV labs can be complex. Some antibodies remain positive for life, making it difficult to distinguish past from current activity.

Mycoplasma pneumoniae

Mycoplasma is unique among bacteria because it lacks a cell wall. That makes it harder to detect and treat.

Testing may involve:

IgM and IgG antibody levels

PCR assays that detect bacterial DNA

Because Mycoplasma can be small and elusive, false negatives are possible.

Lyme Disease and Coinfections

Lyme disease, caused by Borrelia burgdorferi, is typically evaluated using ELISA followed by Western Blot testing.

However, both tests have limitations. False negatives are common, especially early in infection. PCR testing may detect bacterial DNA, but even that depends on where the sample is drawn.

When neurological symptoms overlap with immune dysregulation, Lyme and coinfections often enter the differential diagnosis.

Environmental Factors: Metals and Mold

Heavy metals such as lead, mercury, aluminum, and arsenic can be measured through blood, urine, or hair analysis.

Mold exposure may be evaluated through antibody testing or organic acid testing. However, mold mycotoxin testing can yield false negatives if the body is not actively excreting toxins at the time of testing.

These environmental contributors don’t directly “cause” PANS in most cases. But they may increase inflammatory burden, lower immune resilience, and contribute to chronic immune activation.


Why False Negatives Are So Common

One of the most frustrating aspects of PANDAS and PANS is that testing is imperfect.

Strep titers (ASO and Anti-DNase B) don’t always rise significantly. In fact, studies have shown that only about half of confirmed strep infections produce a significant increase in ASO titers.

Timing matters. Age matters. Individual immune response variability matters.

This diagnostic uncertainty is part of why controversy persists.