Plan B for PANS × Documenting Hope

The PANS/PANDAS
Parent Action Kit

Everything here is free. It’s what Rachel Johnson wishes someone had handed her at the very start: how to put the whole story on one page, what to look for, what to ask, and where to start.

Documenting Hope Expo · Orlando · Friday, November 20, 2026 · 5:45–7:30 pm

Orlando families · until November 30

Three times the free questions with Minta

Sign up from this page by November 30 and ask Minta 30 questions about your child’s records, free, instead of the usual 10. Your vault, your daily tracker and your first summary are free regardless.

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1 · Tell the whole story, birth to now

Not a form — a conversation

Doctors see a snapshot. You hold the whole film — and the answer is usually in the order things happened: what came first, what was going on around it, what was given, what changed right after. Minta, our guide, walks you through your child’s life one question at a time, the way Rachel does on her calls: every home, every illness, every treatment and what happened after. Then it assembles it into a timeline you can hand any doctor.

It’s free. Stop any time and pick up where you left off.

Tell your child’s story

Prefer paper? Print a worksheet instead.

2 · Look under every rock

Contributing factors to discuss with your clinician

PANS rarely has one cause. These are the things worth ruling in or out. Check what’s been looked at — the unchecked boxes are your conversation.

Homes and places

Every home your child has lived in — any leaks, water damage, basement rooms, musty smell, renovation, new constructionSchool, daycare, a grandparent’s or relative’s house — same questionsBetter when away for a few days (a trip, a park, a relative’s), worse coming back?Has the current home been inspected for mold?

Strep

Throat CULTURE (not only a rapid test) at every sore throat, fever, or flarePerianal swab if there is redness or itchingThe whole household swabbed — a carrier with no symptoms can keep reinfecting your childStrep blood tests (ASO, anti-DNase B) done twice, a few weeks apart — one number alone means little

Other infections

Mycoplasma — IgM, IgG, and a PCR swab (it can look like a cold, croup, or “allergies”)Nose swab — staph/MRSA or other bugs living in the sinusesSinus, dental, tonsil, or ear infections that never fully clearedFlu, COVID, chickenpox, hand-foot-mouth, mono — anything right before onset or a flareTicks, fleas, cat scratches — Lyme, Bartonella, Babesia, Anaplasma

Immune system

Antibody levels: IgG, IgA, IgM, and IgG subclassesVaccine-response antibodies (e.g. pneumococcal) — a child who “keeps getting hit” may not hold a response even when total antibodies look normalComplement (C3, C4), ANA, thyroid antibodies, celiac screenInflammation markers (hs-CRP, ESR) and a full blood count with differential

Body chemistry

Iron and ferritin, vitamin DB12, folate, homocysteine, and B6 (B6 tube must be kept out of the light)Zinc and copper (blood, not just hair)Calcium and magnesium

Gut

How often does your child poop — and is it hard, small, or loose?Belly pain, reflux, bloating, foods that clearly make things worseA stool test if gut symptoms are part of the picture

Sleep and breathing

Snoring, mouth breathing, pauses in breathing — ask about a sleep studyEnlarged tonsils or adenoidsNight waking (especially 2–3 am), night terrors, new bedwetting

Medicines and reactions

Every antibiotic course — what, when, how long, and what happened in the days after (better, worse, or strange)Steroids, IVIG, psychiatric medicines — what changed after eachSupplements or herbs that made things worse within hours or daysA new brand, pharmacy refill, formula, or product in the house right before a change

Allergy and mast cells

Eczema, hives, flushing, food or environmental allergiesSymptoms that flare with pollen season, certain foods, or heat

Body and brain

Any head injury or concussion — and what changed afterPuberty or hormonal changesSeizure-like staring spells, new tics, clumsiness, handwriting changes

Life and family

A big stress, loss, move, or school change around onsetWho else in the house was sick around thenFamily history: autoimmune disease, rheumatic fever, OCD, tics, thyroid, celiac, mold or Lyme illnessLater, only if the first blood work points there: genetics

3 · Walk in with questions

Ten questions for your child’s clinical team

Given how suddenly this started, can we consider PANS/PANDAS — and what would rule it in or out?
Can we do a throat culture (and perianal swab if there is redness), not only a rapid strep test?
Can we test for Mycoplasma with both antibodies and a PCR swab?
Should the rest of the household be swabbed for strep, in case someone is a carrier?
Can we check how well the immune system is working — antibody levels and vaccine responses?
Can we get all the blood work done in one draw, so my child is only stuck once?
Which results would change what we do next — and what is the plan if they are normal?
If symptoms came after an infection, is a trial of treatment reasonable while we wait for results?
Who else should be on this team — and can you send a referral?
When should we follow up, and what changes should make me call sooner?

4 · Try Plan B for PANS

A free place to start

Plan B for PANS is a nonprofit. Families start free: a secure place for every record, a daily symptom tracker, and Minta, an AI guide built on published research, who reads your child’s whole story with you. If you already have labs, you get a plain-language summary of the whole picture: the patterns, the gaps, and the questions worth taking to your child’s doctor. We’re not doctors; everything we give you is made to take to yours.

Create a free account and add your child.
Log a few days in the tracker (web or iPhone).
Tap “No labs yet — where do I start?” — or upload the labs you have.

Start free · 30 Minta questions

5 · From Documenting Hope

Resources on healing PANS/PANDAS

Documenting Hope’s curated resource sheet, and a copy of Brain Under Attack, co-authored by Beth Lambert.

Visit Documenting Hope

The live case review

Three families. Their whole story, read together.

Three families will have their child’s case reviewed in depth by Rachel ahead of the event, and walk through it with the room: what had been run over the years, what had never been run once, and what changed when someone finally read all of it together. Applications close Sunday, November 1.

Apply for your child

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Rachel follows up with every parent after the event. No sales emails.

Plan B for PANS is a 501(c)(3) nonprofit. We provide education and help organizing your child’s care; we do not diagnose or treat. Talk with your child’s clinician about any test or treatment.

The PANS/PANDASParent Action Kit