Watching Your Child Suffer from PANS or PANDAS: How to Cope as a Parent
There is a particular kind of pain that comes with watching your child suffer—and not being able to fix it.
It can feel overwhelming, confusing, and at times, unbearable.
If you are parenting a child, teen, or young adult with PANS or PANDAS, you may be here because things changed suddenly and dramatically. Or you may have been living with this for a long time—moving through cycles of improvement, setbacks, and uncertainty.
Either way, you have found yourself on an incredibly challenging journey.
If You Only Have a Minute, Read This
If you’re parenting a child with PANS or PANDAS and feeling overwhelmed:
Much of the stress comes from constantly trying to figure out what to do—while nothing feels consistent or predictable
It’s easy to get stuck in constant problem-solving mode (researching, second-guessing, trying to get it “right”)
When you notice this happening, gently shift to the present moment:
→ “What does my child need right now?”
→ “What do I need right now?”You don’t have to solve everything today—focus on getting through this moment
Find at least one place where you feel understood (a therapist, support group, or other PANS/PANDAS parents)
If you have a little more time, here’s what this experience often looks like:
PANS/PANDAS parents are faced with:
OCD that takes over daily life
Severe anxiety that doesn’t seem to ease
Restrictive eating that feels overwhelming
Tics that come on suddenly
Emotional reactions that feel intense and hard to understand
Parents often think to themselves:
“This isn’t my child.”
“How did things change so quickly?”
“Why does this keep happening?”
“I don’t know how to help.”
If this is where you are, you are not alone.
And what you are feeling makes sense.
What Makes This So Hard
PANS and PANDAS are incredibly unpredictable.
Symptoms change quickly.
What worked yesterday may not work today.
Progress can be followed by setbacks that feel discouraging and confusing.
You may feel like you are constantly trying to adjust—figuring out what your child needs, how to respond, and what to try next.
Questions like these come up often:
“Do I push this or let it go?”
“Is this OCD, anxiety, or something else?”
At the same time, you are dealing with your own emotions:
Trying to stay calm when things escalate
Managing your own worry about your child
Keeping things going for the rest of your family
Making decisions about treatment without feeling fully sure about those decisions
This is extremely stressful for PANS/PANDAS families and this pressure is not something you’re meant to carry on your own.
If you’re looking for more concrete ways to respond in the moment during flares, you may also find this helpful:
/blogs/7-ways-support-pans-pandas-child-flare
What Helps (Over Time)?
When you are living with PANS or PANDAS over time, the challenge is not just getting through one hard moment.
It’s carrying the ongoing uncertainty, the repeated setbacks, and the pain of watching your child struggle.
What helps is not doing more—instead, it’s how you begin to shift your mindset.
1. Making Space for Both Hope and Reality
One key mindset shift is to balance having both hope and reality.
This is not easy to achieve, but the more you practice finding this “middle path”, the easier it will get.
On one hand, you can maintain hope about recovery and continue to put healing steps into place.
On the other hand, you can acknowledge how this will likely be a longer path than you expected, and that can be hard to accept.
2. Separating Your Child from the Symptoms
PANS/PANDAS changes how your child behaves and that is really confusing and sometimes it’s alarming.
Remind yourself:
“This is the illness, not my child.”
This doesn’t make the behaviors easier—but it can help you stay connected to who your child is underneath.
3. Letting Go of the Timeline You Expected
Many parents have adopted an internal timeline of:
when things should improve
how long this “should” last
what their child’s life “should” look like
PANS/PANDAS disrupts that timeline 99% of the time.
Extending your timeline and shifting expectations doesn’t mean giving up—but it can reduce stress for the whole family.
Finding peace during PANS/PANDAS recovery means making room for a different pace and a less predictable path.
4. Noticing What Isn’t Visible to Others
For many PANS/PANDAS parents, this is a path you navigate alone or with very limited support and understanding.
Others don’t not see:
the incredible effort it takes to get through routines
the enormous amount of changes you have had to make since PANS/PANDAS hit your family
the emotional pain that you’re carrying
This path is incredibly hard. And it’s important to acknowledge to yourself the immense amount of work you put into every single day—even if others don’t fully see it.
If you’re feeling especially depleted, you may also relate to what I share in this post on PANS/PANDAS parent burnout:
https://www.juliecox.org/blogs/pans-pandas-parent-burnout
5. Stepping Out of “Constant Problem-Solving Mode”
When we want so badly to help our kids and teens, we can go on overdrive with:
researching
trying new strategies
thinking about what to do next
At times, this is necessary.
But over time, this survival mode is exhausting.
Learning to find small moments where you are not trying to solve anything is important so that you can give your mind a break.
6. Protecting Small Pockets of Your Own Energy
You don’t need large amounts of time to begin to get back some of your energy.
Consider:
a quiet cup of coffee before others wake up
a short walk
a few minutes of focusing on something in nature
These moments matter more than they may seem.
7. Being Thoughtful About Who You Turn To
Unfortunately, most people still do not understand PANS/PANDAS and most parents are holding it all inside in order to take care of their child, teen, and family.
Responses from others usually feel minimizing or the advice is overly simplistic.
It’s important to be careful about where you seek support—and to turn only to those who truly understands the complexity of what you’re navigating.
Facebook Groups, PANS/PANDAS parent support groups, and PANS/PANDAS informed therapists can give you support from others who do understand your journey.
Here are some resources that families find helpful:
ASPIRE’s chit chat groups for PANS/PANDAS parents: https://aspire.care/resources/aspire-chitchat/
PANDAS Network’s parent support groups: https://pandasnetwork.org/support-groups/
Neuroimmune’s Facebook group: https://neuroimmune.org/patient-and-family-resources/join-our-private-facebook-group-for-patients-and-families/
ASPIRE’s PANS/PANDAS parents Facebook group https://www.facebook.com/groups/aspirepans/
You’re Not Alone in This
Parenting a child with PANS or PANDAS can be very isolating.
But there are other parents walking this path—and support is available.
You don’t have to carry all of this on your own.
Need Support?
If you are looking for support as you navigate this, I work with parents of children, teens, and young adults with PANS and PANDAS throughout New York State.
Together, we focus on helping you understand what your child is going through and how to respond in ways that support both your child and yourself.
You can schedule a free, relaxed 15-minute consultation by clicking the button below 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 who are navigating PANDAS/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.
Julie helps parents feel more empowered and supported while caring for children experiencing neuroinflammatory symptoms.