Why Some PANS/PANDAS Parents Stay on High Alert Even When Their Child Is Improving
In my recent blog, The 3 Phases of PANS/PANDAS Parenting, I described how many families move from crisis and survival mode into a second phase of PANS/PANDAS parenting that includes some stabilization, fewer flares, yet ongoing management for your child, teen or young adult.
For many parents, this phase brings some relief:
Symptoms may be less severe.
Flares may be less frequent.
Treatment may be helping.
But many parents are surprised to discover something else:
They still feel like they are living on high alert.
If this sounds familiar, you are not alone.
Even with some solid improvement, many PANS/PANDAS parents find themselves still constantly watching for signs that symptoms are returning, even when things are improving.
If You Only Have a Minute, Read This
If you still feel on edge even though your child is doing better:
• Your nervous system may still be operating as if the crisis is ongoing
• Hypervigilance and anxiety are common responses to prolonged uncertainty and stress
• Some parents find that PANS/PANDAS parenting can activate older patterns of worry, responsibility, or fear
Understanding these patterns can help reduce stressand increase self-compassion.
Your Nervous System Learned to Watch for Danger
When your child was in the most acute phase of PANS/PANDAS (Phase 1), staying alert was necessary.
You may have been monitoring:
anxiety
OCD
eating
sleep
rage
school functioning
medication responses
treatment decisions
Over time, your brain learned that small changes could matter.
It learned to pay attention.
It learned to scan for signs that something might be wrong.
In many ways, this vigilance helped you get through an incredibly difficult period.
The challenge is that nervous systems don't always know when to stop.
"Things Are Better, But I Still Can't Relax"
Many parents describe feeling confused by this experience.
They think:
"My child is doing better. Why am I still so stressed?"
Part of the answer is that improvement is not the same as certainty.
Even during Phase 2, when life is more stable, many families are still navigating:
intermittent flares
unexpected setbacks
ongoing treatment decisions
questions about the future
uncertainty about what symptoms mean
Parents often find themselves waiting for the other shoe to drop.
Not because they are pessimistic.
But because they have lived through periods where things changed quickly.
The nervous system remembers.
Why Does This Happen More for Some Parents Than Others?
One thing I have noticed in my work is that some parents seem able to gradually relax as symptoms improve.
Others remain highly vigilant even as symptoms improve and life becomes more stable.
There are many reasons this can happen.
For some parents, PANS/PANDAS doesn't just create stress. It also activates old survival strategies that developed much earlier in life.
For example, some parents have spent much of their lives:
feeling responsible for everyone else's well-being
worrying about what might go wrong
trying to prevent problems before they happen
holding themselves to extremely high standards
feeling like they need to keep everything together
When PANS/PANDAS enters the picture, these patterns can become even stronger.
This does not mean there is something wrong with you.
It simply means that current stress and past experiences sometimes interact with one another.
How EMDR Can Help PANS/PANDAS Parents Recover from Chronic Stress
EMDR (Eye Movement Desensitization and Reprocessing) is a therapy approach that helps people process stressful or overwhelming experiences so they no longer feel as emotionally intense in the present.
Many parents find that after years of managing PANS/PANDAS, their nervous system remains stuck in a state of high alert—even when things are improving.
This can happen because prolonged periods of stress, uncertainty, and fear teach the nervous system to stay prepared for danger.
During the most difficult phases of PANS/PANDAS, this vigilance often serves an important purpose. Parents learn to monitor symptoms, anticipate problems, and respond quickly when things change.
But even when life becomes more stable, the nervous system may continue responding as though the threat is still present. This can make it difficult to fully enjoy periods of stability or trust that things are truly improving.
EMDR can help the brain process difficult experiences so they no longer feel as emotionally overwhelming in the present.This can make it difficult to fully enjoy periods of stability or trust that things are truly improving.
Rather than feeling as though they are constantly waiting for the next flare, many parents begin to feel more grounded in what is happening right now.
Parents often tell me that after processing some of what they have been through with EMDR, they feel:
less reactive
less consumed by worry
more able to enjoy calmer periods
more present in their daily lives
more confident in their ability to handle whatever comes next
How Internal Family Systems (IFS) Therapy Can Help PANS/PANDAS Parents
Internal Family Systems (IFS) is a therapy approach that helps people understand the different thoughts, feelings, and reactions that can show up during stressful situations.
Rather than judging these reactions, IFS helps us approach them with greater curiosity and compassion.
From an IFS perspective, many PANS/PANDAS parents discover that different parts of themselves respond differently to the stress of the PANS/PANDAS journey.
A part of you that worries.
A part of you that feels responsible for preventing another flare.
A part of you that believes:
"If I stay vigilant enough, I can keep everyone safe."
When parents begin to understand these parts of themselves, they often feel less confused by their reactions and more able to respond to themselves with compassion.
As parents become more aware of these reactions, they often discover that these parts of themselves developed for a very good reason.
These parts are usually trying to help.
Even when their strategies leave us feeling exhausted.
You Don't Have to Stay in Survival Mode
One of the most important things I want PANS/PANDAS parents to know is this:
Just because vigilance helped you survive the hardest parts of this journey does not mean you have to stay in survival mode forever.
Many parents assume that their stress will disappear once their child improves.
Sometimes it does.
Sometimes it doesn't.
And when it doesn't, it may simply be a sign that you need support too.
Need More Support?
If you're interested in learning more about the different stages of the PANS/PANDAS journey, you may also find this blog helpful:
The 3 Phases of PANS/PANDAS Parenting
I work with PANS/PANDAS parents throughout New York State and specialize in both trauma therapy and support for families navigating PANS/PANDAS.
Using approaches such as EMDR, Internal Family Systems (IFS), and nervous system-informed therapy, I help parents process what they have been through and reconnect with a greater sense of calm, confidence, and steadiness.
You can schedule a free 15-minute consultation through my contact page to see if this feels like a good fit by clicking the button below.
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.