When PANS/PANDAS Improves But Anxiety and OCD Remain: How ERP, ACT and SPACE Can Help

Parents often tell me:

"The antibiotics helped."

"The inflammation has settled."

"She's so much better than she was."

And yet they also say:

"The OCD is still there."

"She's still anxious."

"She still needs constant reassurance."

"We're not sure what to do next."

If this sounds familiar, you are not alone.

Many children with PANS or PANDAS make significant improvements when the underlying medical condition is identified and treated. However, even when the acute symptoms settle, some children continue to experience anxiety, obsessive-compulsive symptoms, avoidance behaviours and fears that have become deeply established over time.

This does not mean the medical treatment has failed.

Nor does it mean the difficulties are "all psychological."

Often it simply means that the brain and nervous system need time, support and new learning to recover from an experience that may have felt frightening, overwhelming and unpredictable.

Understanding the Difference Between Cause and Maintenance

One helpful way to think about PANS/PANDAS is this:

The initial trigger may be medical or neuroinflammatory.

However, the patterns that develop around anxiety and OCD can sometimes continue even after the original trigger has improved.

For example:

A child may have experienced an intense fear of contamination during a flare.

Months later, the flare has resolved but they are still washing excessively.

A child may have become terrified of vomiting.

Their physical symptoms improve, but they continue avoiding situations where they might feel sick.

A child may repeatedly seek reassurance that everything is okay.

Even when they no longer feel as distressed physically, the reassurance cycle continues.

In these situations, psychological approaches can help children gradually rebuild confidence and reduce the hold that anxiety and OCD have on their lives.

Why ERP Can Be Helpful

Exposure and Response Prevention (ERP) is considered one of the most effective treatments for OCD.

ERP helps children gradually face fears whilst resisting the compulsions or rituals that normally follow.

For example:

• touching something they fear is contaminated without washing

• sitting with uncertainty instead of seeking reassurance

• gradually facing avoided situations

The goal is not to force children into distress.

The goal is helping them discover:

"I can feel anxious and still be safe."

"I can tolerate uncertainty."

"I don't need the OCD to protect me."

For children recovering from PANS/PANDAS, ERP often needs to be paced carefully and adapted to their individual needs, particularly if they continue to experience sensory sensitivities, fatigue or nervous system overwhelm.

How ACT Supports Recovery

Acceptance and Commitment Therapy (ACT) works beautifully alongside ERP.

Many children become trapped trying to get rid of anxiety completely before they feel able to move forward.

ACT teaches a different message:

You do not have to wait for anxiety to disappear before living your life.

Children learn how to:

• notice anxious thoughts

• make space for uncomfortable feelings

• develop self-compassion

• focus on what matters to them

• take brave steps even when anxiety is present

Instead of asking:

"How do I stop feeling anxious?"

ACT encourages:

"How do I live the life I want, even when anxiety shows up?"

This can be particularly empowering for children who have spent months or years feeling controlled by fear.

Why Parents Matter So Much

One of the most difficult parts of supporting a child with PANS/PANDAS is knowing how to respond when anxiety takes over.

When a child is distressed, parents naturally want to help.

Sometimes that means:

• answering repeated reassurance questions

• helping with rituals

• changing routines

• avoiding triggers

• modifying family life around anxiety

These responses come from love.

But over time, they can accidentally strengthen the anxiety.

How SPACE Can Help Parents

SPACE (Supportive Parenting for Anxious Childhood Emotions) is a parent-based approach designed to help families respond differently to anxiety and OCD.

The aim is not to remove support.

The aim is to change the type of support being offered.

SPACE helps parents communicate:

"I can see this is hard."

"I believe you."

"I understand you're anxious."

"I'm here with you."

while also communicating:

"I don't think anxiety is in charge."

"I believe you can cope."

"I won't help OCD make the rules."

This distinction is incredibly important.

Children need support.

But they also need opportunities to discover their own strength.

What This Might Look Like in Practice

Instead of:

"No, don't worry, you'll definitely be okay."

A parent might say:

"I can see your anxiety is looking for certainty right now. I know this feels difficult and I believe you can handle it."

Instead of repeatedly answering reassurance questions:

"I know you're looking for reassurance. I'm not going to answer that again, but I'm happy to sit with you while you work through the worry."

Instead of helping OCD complete a ritual:

"I know OCD wants us to do that. We love you and we're going to help you face the anxiety instead."

These responses can feel uncomfortable at first.

For both parents and children.

But they help build resilience, confidence and long-term recovery.

What If My Teenager Finds SPACE Language Cringeworthy?

One thing I often discuss with parents is that many teenagers, particularly autistic young people, ADHD teenagers, or those who have spent years in therapy, can find some of the traditional anxiety language used in SPACE a little awkward or "cringey."

Phrases such as:

"I know anxiety is talking right now."

or

"I can see OCD is telling you..."

can feel unnatural, overly therapeutic, or simply not fit with how some teenagers understand themselves.

This doesn't mean the principles of SPACE won't help.

It often means we need to adapt the language.

For many teenagers, a neuroscience-based explanation feels more respectful, logical and empowering.

Rather than saying:

"Your OCD wants reassurance."

we might say:

"It sounds like your amygdala alarm system is firing right now."

Instead of:

"Let's not listen to the anxiety."

we might explore:

"What might help your nervous system realise you're safe?"

Or:

"Your brain's threat system seems to be working overtime today. How can we help it settle?"

The goal remains exactly the same.

We are helping the young person recognise that feelings of danger do not always mean they are in danger, whilst building confidence in their ability to tolerate uncertainty and discomfort.

Many teenagers respond positively when they understand that their brain is trying to protect them, even when the alarm system has become a little overprotective.

Whether we talk about OCD, anxiety, the amygdala, the nervous system, the threat response or the brain's alarm system, the message remains:

"I can see this feels difficult. I'm here with you. And I believe you can cope."

Often it is not the words themselves that matter most, but the confidence, compassion and belief that sits underneath them.

The goal is not to find the perfect therapeutic phrase. The goal is to help the young person understand what is happening inside them, feel supported rather than judged, and develop confidence that they can cope with discomfort without needing anxiety or OCD to make the decisions.

Recovery Is Not About Eliminating Anxiety

One of the biggest misconceptions about anxiety treatment is that success means never feeling anxious.

In reality, recovery often looks more like:

• tolerating uncertainty

• facing fears gradually

• trusting yourself

• becoming less reliant on compulsions

• returning to meaningful activities

• rebuilding confidence after difficult experiences

The goal is not to create a child who never feels anxious.

The goal is helping a child discover:

"I can cope when anxiety shows up."

A Compassionate Approach to Healing

Children with PANS/PANDAS have often been through experiences that are frightening, confusing and exhausting.

Many have spent months or years feeling controlled by symptoms they never asked for.

Healing is rarely about choosing between medical treatment or psychological support.

Often it involves both.

Medical treatment may help reduce the underlying inflammatory process.

Therapeutic approaches such as ERP, ACT and SPACE can help children and families rebuild confidence, reduce the influence of anxiety and OCD, and move towards a fuller, freer life.

Because recovery is not simply about removing symptoms.

It is about helping children rediscover that they are stronger than the fears that have been running the show.

Many parents worry that if OCD and anxiety remain after a PANS/PANDAS flare, their child will never fully recover. In reality, many children make significant progress when medical support, psychological therapy and parent support work together.

Recovery is rarely a straight line, but with the right support children can learn to trust themselves again, rebuild confidence and return to the activities, relationships and experiences that matter most to them.