When Exposure and Response Prevention (ERP) Isn’t Working for Your PANS or PANDAS Child or Teen

If you are parenting a child or teen with OCD due to PANS or PANDAS, you have likely heard that Exposure and Response Prevention (ERP) is the gold standard treatment for OCD.

And in many cases, that’s true.

But in PANS and PANDAS, ERP is often not the first step—especially at the beginning of medical treatment or during flares.

So what might it look like when ERP doesn’t seem to be working?

Maybe your child refuses to participate.
Maybe they shut down, escalate, or become more distressed when exposures are introduced.
Maybe you’re left wondering:

“Are we doing this wrong?”
“Why is this helping other kids but not mine?”

If this is your experience, you are not alone.
And it does not mean that you—or your child—is doing something wrong.

Therapy for PANDAS PANS New York

What It Can Look Like When ERP Isn’t Working

Here is what you might see in your PANS/PANDAS child or teen when ERP isn’t working:

  • Refusal to engage in exposures

  • Increased irritability or anger

  • Escalation during or after attempts at ERP

  • Shutting down or withdrawing

  • Heightened anxiety that doesn’t settle

From the outside, this can look like avoidance or oppositional behavior.

It’s also important to know that even when ERP is working, you may still see some of these reactions at times. ERP involves facing distress, so moments of increased anxiety, frustration, or pushback are not unusual.

The difference is what happens over time.
When ERP is working, you begin to see gradual shifts—more flexibility, less intensity, and a greater ability to move through distress.

But in many PANS/PANDAS kids and teens, there are other steps that need to be addressed first.

What PANS/PANDAS Parents May Be Told About ERP

Parents may be told that:

  • “Your child is avoiding discomfort and ERP involves discomfort”

  • “You need to push through the resistance”

  • “Consistency is the key—keep going”

While these ideas come from a well-intentioned place, they don’t always take into account the full picture of PANS and PANDAS.

Because in this population, it’s not just about working through the discomfort or distress that’s involved with ERP.

What May Actually Be Happening

In PANS and PANDAS, a child’s brain is dealing with inflammation that directly affects how they think, feel, and respond.

One area of the brain often involved in PANS and PANDAS is the basal ganglia, which plays a role in things like:

  • Movement and behavior patterns

  • Emotional responses

  • The ability to shift thoughts and actions

When this area is inflamed, it can make children and teens:

  • More rigid

  • Less flexible

  • More reactive

  • Less able to “shift gears”

So what looks like unwillingness to practice ERP exposures may actually be a brain that is is not currentlyable to adapt and tolerate discomfortdue to inflammation.

Why ERP May Not Work Well (At First)

ERP is based on something called inhibitory learning.

In simple terms, this means:
The brain learns, over time, that something it thought was dangerous is actually safe.

For ERP to work, the brain needs to be able to:

  • Take in new information

  • Update old fear patterns

  • Tolerate uncertainty and discomfort

But when there is active inflammation—especially in areas like the basal ganglia—the brain will have a harder time doing this.

So instead of learning “this is safe,” the brain may stay stuck in:

  • Threat mode

  • Rigidity

  • Overwhelm

This is one of the reasons why ERP is not as effective during certain phases of PANS/PANDAS.

What Usually Needs to Happen First

For many PANS/PANDAS families, a different starting point is more supportive.

Before focusing on exposures, it’s important to understand that treatment often begins with addressing the underlying inflammation.

1. Addressing the Underlying Medical Piece (First)

Until inflammation begins to decrease—through medical, integrative, naturopathic, and/or homeopathic treatment—the brain remains in a state that makes it very difficult for a child to:

  • Regulate emotions

  • Think flexibly

  • Tolerate distress

  • Engage in therapy

Because of this, many children and teens may not able to participate effectively on their own in therapeutic work until inflammation is beginning to decrease.

2. Supporting the Family and Adjusting Expectations (While Medical Treatment Is Being Put Into Place)

While you are working to address the medical piece, therapy can be most helpful by supporting your family as a whole and adjusting expectations.

When a child is struggling with PANS/PANDAS symptoms, it impacts everyone. Shifting the environment in small, supportive ways can help reduce overall stress and create a greater sense of stability during a very difficult time.

This may mean:

  • Slowing things down where possible

  • Reducing pressure and expectations

  • Recognizing that flexibility may be limited

  • Understanding that demands that were once manageable may no longer be

  • Prioritizing connection with your PANS/PANDAS child or teen

  • Responding in ways that support safety rather than escalation

Even if your child is not able to fully engage in therapy right now, getting guidance as a PANS/PANDAS parent on how to shift the family dynamics cancreate a little more breathing room for everyone.

You can read more about how to respond during high-stress moments here:
/blogs/pandas-pans-parenting-stress-how-to-pause-and-respond-when-symptoms-flare

3. Emotional Regulation Skills (Introduced When There Is Capacity)

As inflammation begins to decrease and your child or teen has more access to regulation, you can begin to build skills such as:

  • Tolerating distress

  • Identifying and naming emotions

  • Using coping strategies when overwhelmed

At the same time, parents continue to strengthen their ability to:

  • Stay grounded during escalations

  • Co-regulate effectively

  • Respond rather than react

For many PANS/PANDAS families, therapy needs to help families build these skills before starting ERP.

You can explore some strategies about how parents can shift their responses to their PANS/PANDAS child or teen:
https://www.juliecox.org/blogs/3-tips-for-responding-to-big-emotions-from-your-pandaspans-child-or-teen

4. Considering ERP (When the Brain Is Ready)

ERP remains a highly effective treatment for OCD.

But in PANS/PANDAS, it is often most effective after:

  • Inflammation has begun to decrease

  • The nervous system is more regulated

  • The child has some ability to tolerate distress

At that point, ERP becomes something your child can engage in—not something that feels overwhelming or unmanageable.

How to Know When Your Child May Be Ready for ERP

Signs of readiness might include:

  • Increased flexibility

  • A calmer baseline

  • Greater ability to tolerate distress

  • Willingness (even if hesitant) to try

At that point, ERP can be introduced in a gradual, collaborative way.

A Different Way to Understand What’s Happening

If ERP isn’t working right now, it doesn’t mean it won’t work.

It may simply mean:

Your child’s brain and nervous system need support first.

When we shift from:

  • “How do we get them to do exposures?”
    to

  • “What does their brain and body need in order to be able to do this?”

we often see things begin to change.

You’re Not Missing Something

Parenting a child with PANS or PANDAS is complex.

It requires flexibility, patience, and a willingness to adjust your approach based on what your child’s brain and body can handle in the moment.

If ERP hasn’t been working, it doesn’t mean you’ve done anything wrong.

It may mean you need to start at a different place—and that a different sequence of support can make all the difference.

If you’d like to learn more about my approach to working with families navigating PANS and PANDAS, you can visit:
/pandas-pans-therapy-new-york

And if you’re interested in how I support trauma and nervous system regulation more broadly, you can read more here:
/emdr-therapy-trauma-new-york

Need Support?

If you’re feeling stuck trying to figure out what your child needs right now, you’re not alone.

I work with parents of children and teens with PANS and PANDAS throughout New York State, helping you understand what’s driving your child’s behavior and how to respond in ways that support regulation, connection, and progress.

You can schedule a free, relaxed 15-minute consultation to see if this feels like a good fit.

Julie Cox, LCSW is a fully licensed therapist with 25 years of experience supporting children, teens, parents, and adults in New York and Delaware.

She specializes in working

with families navigating PANDAS and PANS, offering child and parent-centered support based on co-regulation, nervous system education, and evidence-based approaches that help reduce anxiety, OCD symptoms, and demand-avoidance behaviors.

She helps parents feel more empowered and supported while caring for children experiencing neuroinflammatory symptoms.

Therapy for PANDAS/PANS

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