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What to tell your child
At some point, your child is going to ask what's happening to them, or you're going to need to say something. Here's language other parents have found helpful, organized by age range. Keep it short. During a flare, your child may not retain much. You can say it again later.
Ages 5–8
"Your body fought off a germ, and the fight made part of your brain a little swollen. That's why your thoughts feel so loud and scary right now. It's not your fault. We're working with a doctor to help your brain feel better."
Keep it concrete and body-based. Young children understand "your brain is a little swollen" better than abstract concepts like immunity or anxiety.
Ages 9–12
"You know how when you get sick, your immune system fights the infection? Sometimes the fight doesn't stop when it should, and the immune system accidentally affects part of the brain. That's what's happening right now. It's called PANS, and it's why you're feeling the way you're feeling. It's not something you did wrong, and it's treatable."
Teens
"There's a condition where your immune system, after fighting an infection, causes inflammation in a part of the brain that controls mood, anxiety, and impulses. It's called PANS. It explains why things have felt so different recently. It's a real medical condition, it has a name, and there are treatments."
What not to say
- Don't say "just stop" or "try harder." They can't. The inflamed brain is the problem.
- Don't promise it will never happen again. Flares can recur, and false promises erode trust.
- Don't explain the whole medical picture during a flare. Wait for a calm moment when they can actually hear you.
- Don't use the word "crazy" or "broken." Use "inflamed" or "swollen" instead.
When to say it
Not during the worst of a flare. Wait for a window when your child is relatively calm and can hear you. Many children don't have full memory of flare episodes, so they may need the explanation more than once. That's normal.
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.