Why PANDAS/PANS Caregivers Need Therapy Too

When You’re Holding It All Together… Barely

Let’s be honest: caring for a child with PANDAS or PANS is like being thrown into medical school, a courtroom, and a war zone—all at once—and with no training, no manual, and no coffee.

Your kid changed overnight. One day they were okay, and the next? Rages, OCD spirals, terrifying regressions, food aversions, separation anxiety, and more. And you? You became their full-time advocate, caregiver, researcher, emotional shock absorber, and sometimes even their punching bag.

Therapy might sound like one more thing to fit in—but for parents walking this road, it can be life-changing.

1. The Emotional Toll is Real—and It’s Heavy

You’ve had to memorize the words Pediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcus or Pediatric Acute-onset Neuropsychiatric Syndrome. You’ve smiled through the IEP meeting even though your child was screaming in the parking lot. You’ve tried to explain PANDAS/PANS to doctors who looked at you like you had two heads. You’ve cried in the laundry room and Googled "strep-induced psychosis" more times than you care to admit.

Therapy can help: It gives you a space to say the hard things out loud. The resentment. The grief. The “Why my kid?” moments. You don’t have to filter your feelings or educate your therapist from scratch—I get it. And you don’t have to do it alone.

2. You’re Constantly Waiting for the Next Flare

Even when things are “okay,” you’re never really relaxed. You’re scanning for signs, adjusting protocols, living in a state of high alert. It’s like your nervous system has forgotten what calm even feels like.

Therapy can help: A trauma-informed therapist can help you regulate your nervous system, manage chronic anxiety, and develop routines that help you feel steady again. Because let’s be honest—deep breaths only go so far when your kid’s throwing a chair…AT you.

3. You’ve Lost Yourself Somewhere Along the Way

You used to have hobbies. Friends. Dreams. Heck, even a skincare routine. Now you’re a caregiver, full stop. Your sense of self is buried under symptom logs and medical records.

Therapy can help: Together, we can uncover who you are outside of this diagnosis. Because while your child’s illness may be loud, your identity still matters—and you deserve to feel like a whole person again.

4. You’re Tired of Being the Educator-in-Chief

You can quote studies, rattle off antibody levels, and debate the pros and cons of IVIG at 2 a.m.—but you’re tired. So tired. Explaining this over and over to people who don’t get it is exhausting.

That’s why group therapy exists. In PANDAS/PANS caregiver groups, nobody needs a backstory. Everyone knows what the Cunningham Panel is. No one will think twice if you say you had to pull your kid from school (because they simply won’t go) or that your 12-year-old suddenly won’t leave your side after having yet another strep infection. You don’t have to justify your reality—you get to just be in it with others who understand.

5. You Feel Guilty Just for Wanting a Break

How dare you want a nap when your child is suffering? How dare you feel overwhelmed? (Real talk: you're allowed.)

You love your kid fiercely. But also? You’re human. And no one was built to carry this kind of load 24/7 without breaking. This is a different kind of tired. Some days drain every ounce of patience, energy, and hope.

Therapy can help: It’s not self-indulgent. It’s survival. We’ll work on giving yourself permission to rest, set boundaries, and stop equating burnout with being a “good parent.”

6. This Isn’t About Fixing You. You’re Not Broken.

You’re doing the best you can in an impossible situation. Therapy won’t make the PANDAS/PANS disappear, but it can give you tools, support, and a place to breathe.

You can laugh. You can rage. You can sob. You can say, “I love my kid, but I’m so tired I could melt into this floor.” And you’ll be met with compassion, not judgment.

my why

I didn’t come to this work as an expert—I came as a mom. When my daughter changed, I fought tooth and nail to figure out what was happening. Then years later, our son developed PANS, and I found myself doing it all again.

No medical degree, no roadmap. Just a gut instinct and a lot of crying. I know the heartbreak. I know the isolation. And I know what it feels like to lose yourself and fight like hell to come back.

I combine my clinical training and education with my own lived experience to provide compassionate, informed support to families facing similar struggles.

If your gut is saying ‘I need this’...

Then maybe it’s time. Time to talk. Time to rest. Time to feel like yourself again.

Reach out today, I’d love to connect to see if I can help.

Disclaimer: I am not a medical doctor and do not provide medical advice or treatment. This blog is intended for mental health advocacy and support only. For medical concerns, please consult a licensed healthcare professional.