PANDAS/PANS: A Parent’s Guide to Surviving Medical Uncertainty
Helping Parents Cope When There Are More Questions Than Answers
By Julie Cox, LCSW
Parenting a child with PANDAS or PANS often means living with more uncertainty than you ever imagined. One day your child is functioning well — and the next, everything changes. Symptoms appear quickly, shift rapidly, and don’t always respond predictably to treatment. Medical opinions vary. And the emotional load lands squarely on parents.
If you're overwhelmed, exhausted, and worried about what the future holds, you are not alone. Medical uncertainty is one of the most difficult parts of this disorder — and it affects your nervous system as much as your child’s.
As a therapist specializing in PANDAS/PANS, and as a PANDAS/PANS parent myself, I want you to know that it is possible to learn to stay grounded, regulated, and connected to your child even when this path feels incredibly unpredictable.
Below are trauma-informed, CBT-based, and nervous system-aligned tools to help you navigate the uncertainty with more stability and self-compassion.
Why Medical Uncertainty Hurts So Much
When your child’s symptoms change overnight or flare unexpectedly, your nervous system goes into high alert, too. This activates:
Hypervigilance — fight-or-flight responses (“I need to stay alert; anything could happen.”)
Black and white thinking (“What if it never gets better?”)
Emotional exhaustion
Difficulty sleeping or resting
Decision fatigue
Tip: Your child isn’t giving you a hard time — their nervous system is having a hard time.
What you’re experiencing is a completely normal response to chronic stress and unpredictability. In trauma-informed terms, your nervous system is being pushed outside of your Window of Tolerance — the optimal zone where you can think clearly, manage emotions, and respond effectively.
When your nervous system is on high alert (anxious, panicked, or on edge) or worn out (shut down, numb, or exhausted), it’s much harder to think clearly, make decisions, cope with uncertainty, or support your child effectively. This is why tools that help regulate your nervous system and create a sense of safety, like co-regulation and grounding, are so important.
1. Anchor Yourself in Predictable Micro-Routines
When the world feels unstable, your nervous system craves predictable moments of safety. Micro-routines are short, reliable cues that help your body say: “I’m safe right now.”
Examples of micro-routines:
Morning grounding breath — 4 counts in, 6–8 counts out
A 3-minute walk outside
A comforting nightly ritual, such as a cup of tea
A consistent end-of-day phrase or reflection, like: “We will get through this one day at a time.”
These small routines help expand your Window of Tolerance, supporting clearer thinking and calmer parenting.
2. Co-Regulation First: Your Calm Helps Their Calm
Co-regulation is the foundation for helping a dysregulated child. During PANDAS/PANS flares:
Your child’s nervous system may get “stuck” in fight/flight or shutdown
Your nervous system naturally mirrors theirs
Co-regulation helps both of you return to balance
Co-regulation strategies include:
Slowing your breath while near your child
Softening your voice and facial expressions
Sitting shoulder-to-shoulder rather than face-to-face to avoid direct eye contact
Using simple, rhythmic movement (swaying, walking together)
Tip: Co-regulation is not permissiveness — it’s physical stabilization, the prerequisite for emotional and behavioral change.
3. Use CBT Tools to Counter Black and White Thinking
Uncertainty often triggers “worst-case-scenario” thoughts in parents. Shifting your thinking can help interrupt this pattern and reduce anxiety.
Try this simple exercise when you feel overwhelmed:
Notice your thoughts. Ask yourself: What is my fear saying? What am I imagining as a worst-case scenario, even though it’s not fully supported by evidence?
For example, as a PANDAS/PANS parent, your thoughts might naturally drift toward:
“This will never get better.”
“Nothing really helps.”
Reframe your thoughts. Shift them to a more neutral, realistic perspective:
Instead of “This will never get better”, try: “This will get better, but it’s taking longer than we expected. We will still get there.”
Instead of “Nothing really helps”, try: “We will find what works, but the trial-and-error process is frustrating.”
Tip: Noticing and reframing your thoughts strengthens your ability to remain grounded and respond calmly.
4. Focus on Regulation Before Problem-Solving
Bruce Perry is widely recognized as a neuroscience and behavior expert. His “Regulate → Relate → Reason” model applies well to PANDAS/PANS families.
When stress is high with your child or teen, try this:
✔ Regulate yourself first — slow down, take a breath, feel your feet on the ground
✔ Relate — reconnect slowly with your child
✔ Reason — problem-solve once both nervous systems are steadier
Parents understandably try to “think their way” out of stress, but the brain cannot problem-solve effectively until the body is regulated.
5. Focus on What You Can Control Right Now
Instead of trying to plan for every possibility or fix everything, focus on small, immediate steps that make a difference for you and your child in the moment.
Practical strategies include:
Set one priority for the day: Pick one task that helps your child feel safe or supported, and let other things wait.
Prep a “calm kit”: Keep quick tools on hand — sensory objects, a stress ball, a comforting blanket, or something your child enjoys.
Use micro-anchors for yourself: Tiny, immediately accessible ways to stay grounded — for example:
Take three slow, intentional breaths, even while doing another task
Press your feet into the floor or notice your body in the chair
Hold a warm cup of tea or water, focusing on the sensation
Briefly notice one small thing in the room (a picture, a plant, a window view) and describe it to yourself
Document patterns, not perfection: Keep a simple log of symptoms, triggers, or small wins — it’s not about control, it’s about noticing patterns to guide next steps.
Tip: You don’t need a perfect plan. Focusing on what you can control in the moment protects your energy and helps your child feel supported even on the hardest days.
6. Allow Space for Grief
Parents of children with PANDAS/PANS often experience layers of grief, including:
Lost predictability
Missed milestones
Family stress or sibling impact
Feeling misunderstood by providers or loved ones
These feelings are real and valid. Acknowledging them is an important step toward resilience. By noticing your grief, you also create space for hope — finding moments of connection, strength, and growth even amidst ongoing challenges.
Tip: Grief and hope can coexist. Every step you take to care for yourself helps you support your child more effectively.
7. Seek Trauma-Informed, Nervous System-Aware Support
Parents benefit most from a therapist who understands:
Neuroinflammation
Anxiety and OCD spikes
Nervous system-informed parenting
Co-regulation strategies
CBT tools for uncertainty
Medical trauma
Approaches like EMDR and trauma therapy can help reduce the cumulative trauma of living in a prolonged state of uncertainty.
Learn more about how I support parents, teens, and adults here:
👉 EMDR & Trauma Therapy
👉 PANDAS/PANS Therapy
You Are Carrying So Much — and You Don’t Have to Carry It Alone
Even when answers are unclear or treatments take time, there are ways to bring calm, resilience, and compassion to your home.
With the right tools and support, you can move through medical uncertainty with greater clarity, confidence, and emotional stability — for both yourself and your child.
If you’re looking for support from someone who understands both clinically and personally, I’m here to help. Reach out today by clicking the button below to schedule a free consultation