What your doctor sees
The protocol, in the open.
Doctors respond differently to a parent who shows up informed. So here is exactly what a good PANS doctor orders to find the infection, the antibiotic for each one, when it escalates to IVIG — and the decision tree they follow. Laid out so you can walk in, name it, and decide alongside them.
What “the protocol” even is
In 1998, Dr. Susan Swedo at the NIH first described PANDAS — a strep infection setting off a sudden, severe neuropsychiatric change in a child overnight. The category later widened to PANS (any infection or trigger, not just strep).
In 2017, a small group of the leading PANS clinicians — the PANS Research Consortium — published the first consensus treatment guidelines (read the actual document →). That document is, essentially, what your pediatrician receiveswhen they go looking for “how do I treat this.” It is the first line.
It doesn’t work for every child — but it is always worth a hard, early shot, and the sooner you hit it, the better it tends to go. So if your specialist appointment is months out and your pediatrician doesn’t know where to start — now you do. Here is the first line, in plain sight. Hit it hard, hit it early.
Can’t wait for the appointment? Three moves:
① Find a prescriber. A telehealth PANS doctor can start the first line now — see the practitioner directory →
② Read them this.“My child had a sudden, severe neuropsychiatric onset that fits PANS/PANDAS. I’d like to start the PANS Consortium first line — the bloodwork to find the trigger, plus an empiric antibiotic course while we wait. Can we begin today?”
③ Ask for this bloodwork — when a child changes overnight, run the panel the protocol calls for to find the trigger. The exact list is right below. 👇
📄 Hand them the actual guidelines. Most pediatricians have never seen them — print and bring the real published documents: PANDAS Physicians Network guidance →, 2017 treatment guideline — infections/antibiotics →, Neuroimmune clinician guides →.
Step 1 · find the trigger
The tests doctors order to find the infection
These are the labs a PANS-literate doctor runs at onset and at every flare. Name them, and most doctors will order the standard, insurance-covered ones.
| Test | What it’s looking for |
|---|---|
| Throat swab — rapid strep + culture | Active group A Strep, even with no sore throat. If the rapid test is negative they culture it — rapid tests miss ~15% of strep. |
| ASO (anti-streptolysin O) | A recent strep infection (an antibody). Most useful as serial values over time — a single number says little. |
| Anti-DNase B | A second strep antibody, run with ASO. Together they catch more — but a negative still does not rule strep out. |
| Mycoplasma PCR + IgM/IgG | Active mycoplasma ("walking pneumonia"). PCR confirms current infection; IgG alone can stay high for life, so it is not proof of a current bug. |
| Influenza (molecular swab) | Active flu — a common, overlooked trigger. |
| Perineal / skin-site culture | Strep hiding outside the throat — perianal, impetigo, vulvovaginitis. |
| Family / close-contact throat swabs | A silent strep carrier in the house re-infecting your child. Swab the adults who never seem sick. |
| Lyme — only if endemic | Tick-borne infection, but only screened where Lyme is common. In endemic areas, test through IGeneX (more sensitive than the standard CDC two-tier). |
| CBC with differential | A baseline blood count — infection, inflammation, and immune clues in one inexpensive test. |
| ESR + CRP (inflammation) | Whole-body inflammation markers. Often normal in PANS (the inflammation is in the brain), but worth the baseline. |
| ANA (antinuclear antibody) | A screen for broader autoimmunity riding alongside. |
| Immunoglobulins — IgG, IgA, IgM, IgE | Immune-system baseline. Low IgG/IgA can explain infections that never clear. |
| Pneumococcal antibody titers | If infections keep recurring — catches specific antibody deficiency (SPAD), which is its own door to covered IVIG. |
| Thyroid — TSH, Free T4, TPO + TgAb | Autoimmune thyroid can mimic or ride alongside PANS. |
| Vitamin D (25-OH) | Low D worsens immune dysregulation; the Consortium targets above 30 ng/mL. |
| Ferritin + iron studies | Low ferritin tracks with restless sleep and worse symptoms. |
| B12 + folate | Methylation and neurologic cofactors. |
| EBV panel (VCA IgM/IgG, EBNA, EA) | Epstein-Barr — a common viral trigger; EA positivity flags active reactivation. |
| tTG-IgA (celiac screen) | If there are GI symptoms — celiac can drive neuro-behavioral change. |
How to actually get this bloodwork — two ways
① Order it yourself — no doctor needed. In most states you can order most of these labs direct (they run through Quest or LabCorp; you book a quick blood draw): Walk-In Lab, Quest Health, Labcorp OnDemand, Ulta Lab Tests. A few specialized tests (like IGeneX Lyme) still need a provider to order.
② Have an online doctor order it — and try for insurance. A telehealth PANS doctor can order the full panel and often get it covered. See our practitioner directory → — where parents flag which doctors actually order the workup and got insurance to cover it, so you can go straight to the ones who do.
Overwhelmed? You don’t order everything, and you don’t do this alone.
Plan B doesn’t treat your child — your doctors do that. What Minta gives you is direction, in two steps:
1 · A testing direction. Based on whatever you have right now, Minta tells you exactly which tests to run next to complete the picture — prioritized, one or two at a time, with where to order each.
2 · A treatment direction. Once your results are in, she shows you what’s driving it, what the options are, in what order, and the why — written as the roadmap and the questions to bring to your medical team, so they can act with the whole picture in front of them.
We integrate and direct. Your prescriber decides and treats. That’s the line — and we never cross it.
The decision tree
The path a doctor follows
Dr. Swedo’s anti-inflammatory basics
Alongside the antibiotic, Dr. Swedo — who first described PANDAS — leans on two simple, accessible anti-inflammatories to calm the brain: around-the-clock ibuprofen (on a schedule, not just as-needed, to keep the inflammation suppressed) and lots of fish oil (high-dose omega-3). Inexpensive, gentle, and often a meaningful part of early recovery.
How long on the ibuprofen? Most start with a scheduled trial of about 4–8 weeks(the Consortium frames it as roughly a 6-week NSAID trial). If it clearly helps, doctors often continue through the active inflammatory period, then taper; if there’s no benefit by ~6 weeks, reassess. Longer-term NSAID use needs prescriber monitoring (stomach + kidneys) — dosing and duration are your prescriber’s call.
⚠️ One critical caution before any steroid
A steroid burst can calm PANS inflammation — but steroids suppress the immune system, and if a child has active Lyme or another tick-borne infection, a steroid can make them dramatically worse.So if you live in a tick-endemic area — or there’s any tick-borne suspicion — rule out Lyme first, and test through IGeneX, which is far more sensitive than the standard CDC two-tier test that misses many cases.
Step 2 · target the infection
The antibiotic for each bug
The doses below are the standard published pediatric regimens (IDSA / AAP / CDC). They are here so you know what “normal” looks like — the exact dose for your child is always your prescriber’s decision.
| Infection | First-line | Standard dose | Course |
|---|---|---|---|
| Strep (first-line) | Amoxicillin or Penicillin V | Amoxicillin ~50 mg/kg once daily (max 1 g) | 10 days (some run an initial 3-week course) |
| Strep — penicillin-allergic | Cephalexin or Cefadroxil (Consortium-preferred) | Cephalexin 20 mg/kg/dose twice daily | 10 days |
| Strep — anaphylactic PCN allergy | Azithromycin or Clindamycin (avoid all cephalosporins) | Azithromycin 12 mg/kg day 1, then 6 mg/kg | 5 days |
| Mycoplasma | Azithromycin (macrolide); tetracyclines if resistant | Azithromycin ~10 mg/kg/day | 3–5 days |
| Sinusitis | High-dose Amoxicillin-clavulanate | 80–90 mg/kg/day (amox component), divided | 10–14 days |
| Acute Lyme / tick-borne | Doxycycline (any age now); Amoxicillin alt. | Doxycycline 4.4 mg/kg/day (max 200 mg) | 10–14 days |
“Which one?” — and what to fight for while you wait
The right antibiotic depends on which infection is driving it— that’s what the bloodwork decides. High strep titers (ASO / anti-DNase B) point to a strep drug; a positive Mycoplasma points to a different class; a tick-borne result points to another. Match the bug to the row above.
But you don’t have to wait helplessly. While results come back, prescribers commonly start an empiric broad-spectrum first line that covers the most common triggers — most often azithromycin (it hits both strep and Mycoplasma — the two biggest culprits) or Augmentin (amoxicillin-clavulanate) (broad strep coverage, with anti-inflammatory properties noted in the PANDAS research). If your child is in an acute flare, that’s the thing to ask for now — early treatment matters most. Your prescriber picks the drug and dose.
A named early-onset protocol that works
Dr. Andrew Baumel’s two-drug cocktail — a pediatrician’s simple, gentle, early approach (Framingham, MA · 155+ children over 6+ years)
Dr. Baumel — a board-certified general pediatrician — treats early, mild-to-moderate PANS right in his regular office with a deliberately simple combination he’s leaned on for over six years:
- Cephalexin (Keflex) — 50 mg/kg/day, divided twice a day (the antibiotic, from Dr. Pasternack at Harvard)
- Naproxen sodium — 5 mg/kg per dose (the anti-inflammatory, from Dr. Frankovich at Stanford)
His key insight: use these mild medications long-term — slow and steady, not a quick burst. No steroids, IVIG, or Rituximab for mild-to-moderate cases. In his experience, most early-caught children respond and recover without the heavier therapies. He also swabs the whole family for strep and checks for the tell-tale perianal/vaginal strep rash. This is a real protocol a pediatrician can run — bring it to yours.
This gentle, early, pediatrician-led approach isn’t formally written into the 2017 Consortium guidelines — but Dr. Baumel argues, and his six years of results suggest, that it belongs there as the first and simplest option for early cases. Read his full interview →
For penicillin allergy, the Consortium specifically prefers cephalexin over cefadroxil (cefadroxil shares a side-chain with amoxicillin). True anaphylactic allergy → no cephalosporins at all.
When it’s severe
IVIG — and how families get it covered
For moderate-to-severe PANS, IVIG (immune-modulating immunoglobulin, 1.5–2 g/kg, split over 2+ days) is often the preferred next step — alone or with steroids. The most extreme, life-impacting cases go to plasma exchange (TPE) first. Response to IVIG is often delayed 2–3 weeks, and most kids treated early need only 1–3 courses.
How to get insurance to cover it
- Code it as autoimmune encephalitis. Until there’s a PANS-specific code, this is the lever — six states (CA, CO, IL, MD, OR, RI) require it. PANS is, literally, an emerging autoimmune encephalopathy.
- A letter of medical necessity mapping the treatment to the insurer’s own policy criteria.
- Letters from multiple providers — several states require a PCP and a specialist to jointly attest.
- Attach the peer-reviewed evidence (the Perlmutter IVIG/TPE trial, the Consortium guidelines) — reviewers often don’t know PANS.
- Expect prior authorization on every request, and document objective inflammation where you can (MRI, EEG, sleep study, autoantibodies, family autoimmune history).
Templates: Neuroimmune Foundation · PANDAS Physicians Network
What healing looks like — and when to escalate
- Antibiotics: recent-onset kids often improve within days to a few weeks of the right antibiotic.
- Anti-inflammatories: a 6-week trial; many kids slip when it’s withdrawn — itself a sign it was helping.
- Steroid burst: works best within 1–3 days of a flare; flares treated early ran ~6 weeks vs ~11 untreated.
- The escalation rule: early treatment beats late, and when first-line fails, second-line helps — so you escalate, you don’t wait.
- When to pivot: if a kid stops responding to immune treatment entirely (even high-dose steroids), the guideline itself says to shift toward rehabilitation — and that’s exactly where Plan B starts hunting for the driver no one found.
The bigger picture
If the protocol isn’t enough — the path forward
Everything above is Stage 1. Most kids caught early get better here. But if your child isn’t all the waybetter, you don’t stop — you go deeper. This is the path Plan B walks with you.
Stage 1 · Conventional
The Protocol
Everything on this page — find the trigger, the right antibiotic, scheduled anti-inflammatories, and IVIG or plasma exchange when it’s severe. The standard first line, and where most early, mild-to-moderate kids get better.
Stage 2 · Functional medicine
Find the root drivers
Not all better? Go deeper than infection: methylation & detox, the gut, mold/CIRS, chronic tick-borne (Lyme, Bartonella, Babesia, Mycoplasma), MCAS, and mineral & immune dysregulation — the roots conventional medicine doesn’t look for. Test them, treat them.
Stage 3 · Deepest tier
Homeopathy & what hasn’t been tried
Still not all the way there? Homeopathy, plus the full “what hasn’t been tried” menu — biomagnetism, phage therapy, peptides, and more. Nothing left on the table.
This is Plan B.The name is literal — when Plan A runs out, there’s a whole map left. We help you work down it, one stage at a time, until your child is all the way better.
This page is educational — the standard guideline picture (PANS Consortium, JCAP 2017) plus standard pediatric dosing, drawn so you can have a smarter conversation. It is not medical advice. I’m Rachel Johnson, a parent navigator and integrator, not a licensed clinician. Every dose and decision is your child’s prescriber’s. Sources: Consortium Part II (immune) · Part III (infections) · IDSA strep · IDSA Lyme.