Our story
A letter from the parents who built this
One night in December, our 8 year old said goodbye because he believed he was going to die.
He had already showered. He kissed each of us, laid down, crossed his arms over his chest, and cried himself to sleep. He was certain he was too dirty to survive the night.
A few weeks earlier, he had been our sweet, easygoing boy. In October he came down with strep-like symptoms. Three tests came back negative. A rash on his back was dismissed as something else, until my wife pushed for antibiotics, suspecting scarlet fever. He got better.
Then Christmas vacation began, and overnight he was gone. In his place was a child with crushing OCD, terror, anger, and behavior we couldn't recognize. Twelve squirts of soap for each hand, every time he touched anything. Screaming on the floor that he needed to shower or he would die. Saying the most hurtful things he could think of to the people he loved most. He wouldn't hug us. He wouldn't kiss us. His sister watched her brother disappear and a frightened, angry stranger take his place.
We were terrified. We were exhausted. We tested for UTIs and everything else we could think of, and everything came back normal. We started to wonder if this was just who our son was now.
In January, after hours of online research, we found PANDAS. His strep antibodies came back at nearly 2.5 times the normal level. A powerful antibiotic was prescribed. Friends also connected us with a truly amazing psychologist who helped him work through his symptoms, especially the OCD. Slowly, our boy came back to us.
He has had one flare since then. Because we knew what to watch for, we caught it early.
With you in this, Chris and family
What we want you to know
This illness is happening to your whole family.
01 / For Parents
It looks like behavior. It isn't.
You're watching a different child act strangely, irrationally, sometimes cruelly. It feels like they're acting up. They aren't. This illness is attacking the brain and making them do these things. You're not failing as a parent. You're caring for a child who is sick in a way that hides itself.
02 / For the Child
Their brain is lying to them.
The OCD feels real. The fear feels real. Everything that used to be a 2 is suddenly a 10. Imagine not being able to trust your own feelings while everyone you love tells you not to worry. They aren't being difficult. They're frightened of things they can't explain, and they need you to believe them.
03 / For the Siblings
They lost their brother or sister too.
Overnight, the person they shared their life with became someone mean and unrecognizable, getting all of the attention for the worst of reasons. They're scared, confused, and often quietly grieving. They need to be told this isn't their fault, and that you see them too.
What we want this to be
PANDAS Support is free, parent-built, and ad-free, and will stay that way. PANS/PANDAS Companion is also parent-built and has no ads. Neither is a replacement for care, and neither will ever claim to be a diagnosis. They are resources we hope make the rest of your work easier.
What you can do
- Use the tools. Try the screener, log a few days in PANS/PANDAS Companion, share what you find with your provider.
- Tell another parent. Most of the time, parents find sites like this through other parents.
- Send feedback. If something is wrong, missing, or not quite right, we want to hear it.
Not medical advice. This content is for orientation only. Diagnosis requires a trained clinician. If your child is in acute distress, contact your provider or go to the nearest emergency room.