My Kid Has PANDAS
No, not the zoo kind. The terrifying, invisible, what-in-the-hell-just-happened kind.
I didn’t really know what PANDAS was until it crashed into our life like a wrecking ball made of rage, regression, and confusion. And now? I think about it every day. If you’re reading this because you Googled “why did my sweet kid suddenly lose their mind overnight” or “OCD and strep throat???” — hi. You’re not alone.
Wait, What Is PANDAS?
PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It’s as wild as it sounds. Basically, a strep (or other) infection triggers the immune system to attack part of the brain (yep, the brain), leading to sudden, severe symptoms like:
OCD behaviors
Tics
Rage episodes
Food restriction
Anxiety, separation panic
Regression (potty training, handwriting, etc.)
Sleep disturbances
Personality changes
And I don’t mean gradual symptoms. I mean overnight. Like one day your kid is themselves, and the next you’re watching them unravel in front of you — and no one can explain why.
“My Kid Just Changed Overnight.”
That’s the phrase I kept repeating to doctors. That’s the phrase every PANDAS parent seems to say. The truth? I knew something was wrong. I just didn’t have the name for it yet. And if that’s you right now — I’m sorry. I’m with you. And you are not making this up.
Getting a Diagnosis (Spoiler: It’s Not Easy)
There’s no gold standard test. Diagnosis is mostly clinical, and you will probably be told:
“It’s just anxiety.”
“It’s a phase.”
“Let’s wait and see.”
You may need to see:
A pediatrician (who listens)
A neurologist
An immunologist
A PANDAS-literate provider (if you can find one)
Or, honestly, another mom who’s already been through it
Treatment: The Hope and the Horror
Treatment usually involves:
Antibiotics (to stop the autoimmune response)
Anti-inflammatories
Psych support (therapy for OCD, trauma, anxiety)
In more severe cases: IVIG or plasmapheresis
For us, treatment is looking more like a mix of things. Western medicine combined with functional. We’ll lean into our western medicine docs (who do recognize and treat PANDAS) a specialized ped if you will to help Henry get better asap but then functional medicine to keep a watch on the extensiveness that could create long term flares, long term healing and bettering our environment overall to help the whole family - not just Henry.
The Grief You Don’t Talk About
Watching your child suffer and not be believed is a unique kind of hell.
You grieve the version of them that felt safe and known.
You grieve your own peace.
You live in the in-between — is this their new normal? Will they come back?
And still, you show up.
You advocate.
You hold the line.
You find hope in fragments.
If You’re New Here…
Here’s what I’d tell you:
Trust your gut, even if professionals tell you not to.
Take notes on everything.
Keep pushing until someone listens.
Cry in the car. Then keep going.
You are not crazy.
This is hard and it’s real.
You’re doing a better job than you think.
From One PANDAS Parent to Another
You’re in the club no one wants to join — and yet, here we are. Fighting for our kids, navigating the fog, and learning to live in the gray. There is hope. There is healing. There is community. And if your kid has PANDAS? I see you. And I believe you.