Profile
| Name | NK |
| Age | 6 years old, Male |
| Weight | ~40 lbs (~18 kg) |
| Diagnoses | ASD · PANS/PANDAS (dx 4/2026) |
| Known allergies | None to date |
| Eating style | Selective eater — limited variety, frequent refusals |
Care Team
| PANS/PANDAS MD | Dr. Giuseppina Benincasa-Finegold (integrative MD) |
| GI Specialist | Pediatric GI (chronic constipation management) |
| Upcoming | Dr. Melillo intensive, June 22 – July 3, 2026 (Rockville Centre) |
Medications managed by
Dr. Benincasa-Finegold oversees the full supplement and botanical protocol. GI specialist manages bowel regimen. Onyda XR (clonidine) prescribed separately.
🥗 Current Diet (since April 18, 2026)
NK is strictly Gluten-Free, Dairy-Free, and No Added Sugar. No exceptions — even small amounts can affect gut health, behavior, and immune response. No gluten (wheat, barley, rye), no dairy (milk, cheese, yogurt, casein, whey), no candy/juice/sweetened snacks.
PANS / PANDAS — Overview
PANS/PANDAS is an autoimmune/inflammatory condition where infection triggers the immune system to produce antibodies that cross-react with the brain, driving abrupt behavioral and neuropsychiatric symptoms.
NK was diagnosed in April 2026 by Dr. Benincasa-Finegold. The diagnosis followed three recognized flare episodes at ages 4, 5, and 6 — only recently identified as a recurring pattern. Flares have been associated with winter illness (strep, COVID).
NK's Flare Signature — watch for these
- Sudden speech reduction or regression — noticeably fewer words, loss of phrases he had before
- New OCD-type rituals — e.g., licking a finger and needing to tap/touch objects with it repeatedly
- Increased self-injurious behavior (SIB) — head-banging, hitting himself; in the most recent episode school discussed a protective helmet due to concussion risk
- Onset is abrupt — these appear suddenly, not gradually; treat as a possible flare, not just a bad day
If you observe flare signs: Document the date, what you observed, and any known recent illness. Notify the family that day.
Cunningham Panel Results (drawn ~4/6/2026, received 4/15/2026)
Baseline values — to be compared against future re-tests to track treatment response.
| Marker | Result | Status |
|---|---|---|
| Anti-Dopamine Receptor D1 | 4000 | ELEVATED |
| Anti-Dopamine Receptor D2L | 2000 | Normal |
| Anti-Lysoganglioside GM1 | 320 | Borderline |
| Anti-Tubulin | 4000 | ELEVATED |
| CaM Kinase II (% of baseline) | 106% | Normal |
Additional Bloodwork
| Test | Result | Significance |
|---|---|---|
| Anti-Streptolysin O (ASO) | 806 (HIGH) | Recent/prior strep — bacterial trigger confirmed |
| EBV Viral Capsid Antigen (VCA) | 522 (HIGH) | Epstein-Barr virus — viral trigger |
| COVID antibodies | Elevated (HIGH) | COVID as viral trigger |
| Vitamin D | Low | Supplementing with D3/K2 |
PANS/PANDAS Treatment (2026)
🦠 Bacterial (Strep)
- Antibiotics — Augmentin, Amoxicillin, Azithromycin (rotating): started 4/18/2026, completed ~5/18/2026
🦠 Viral (EBV / COVID)
- Rotating botanical antivirals (ongoing): Elderberry, Lemon Balm, Grapeseed Extract, Echinacea — not all given same day; rotated and delivered as drops in his Honest juice box
- Elderberry syrup also given nightly (separate dose)
🔥 Neuroinflammation / Immune Modulation
- HBOT (Hyperbaric Oxygen Therapy): 40 sessions at 1.5 ATA, completed 5/8/2026
- Omega-3 Fish Oil: anti-inflammatory (daily)
- Longvida Curcumin: anti-inflammatory (daily)
- Quercetin: antihistamine / mast-cell stabilizer (started 5/18/2026)
- Magnesium Glycinate: calming, supports bowel motility (daily)
🧠 Neural / Brain Support
- Folinic Acid + Methyl-B12 injection: 2–3×/week — folate + B12 support for cerebral folate deficiency (common in ASD)
- Glutathione + Phosphatidylcholine shots: ~weekly with Dr. B-F — antioxidant detox + neural cell-membrane support
- Lion's Mane: cognitive/neural support (daily)
🍄 Fungal / Gut
- Nystatin 1 mL 2×/day — antifungal for possible yeast/Candida, started 6/2/2026
- Florastor probiotic — paused ~6/1/2026; will resume after Nystatin course
🥗 Dietary
- Gluten-free, dairy-free, no added sugar — since 4/18/2026
- Vitamin D3 + K2: correcting documented low Vitamin D (daily)
Chronic Constipation
Managed for chronic constipation for over a year under a pediatric GI specialist. Goal: transition off stimulant laxatives to fiber-only.
Current: ExLax 2.25 squares at 11am + fiber gummies. Florastor paused ~6/1/2026.
Interpretation note: ExLax works 6–12 hrs after the 11am dose. Loose/watery stools between ~5pm and 9am the next morning are almost always ExLax-driven, not food or illness.
ASD Context
NK's ASD diagnosis pre-dates PANS/PANDAS. Key differentiator: PANS flares have sudden, abrupt onset vs. gradual developmental patterns. Food refusals are common and should not be forced.
Current Active Treatments (Summary)
PANS/PANDAS Protocol
- Antibiotics completed ~5/18/2026
- Antiviral botanical support ongoing
- Anti-inflammatory: Omega-3, Curcumin, Quercetin
- Neural support: Folinic Acid + Methyl-B12 (2×/week injection)
- Glutathione + Phosphatidylcholine shots (~weekly)
- Nystatin 1 mL 2×/day — started 6/2/2026
- HBOT: 40 sessions, completed 5/8/2026
GI / Constipation
- ExLax 2.25 squares at 11am
- Fiber gummies 2× at 11am
- Florastor probiotic — paused ~6/1/2026
- Goal: transition to fiber-only management
Regulation / Presence
- Onyda XR (clonidine ER) 1.4 mL at ~7:30pm — prescribed to help NK be more present and regulated; sedation is a side effect
- Wears off ~3–5am — early morning wakings are expected
- Poor sleep the night before is the strongest predictor of a harder day
📅 Upcoming: Dr. Melillo Intensive — June 22 – July 3, 2026
Two-week functional neurology intensive in Rockville Centre. Focus: integrating retained primitive reflexes, olfactory/galvanic/light stimulation, TENS, Brain Driver, cold lasers.
Morning (7–9am)
| Item | Dose | Notes |
|---|---|---|
| Barlean's Omega-3 Fish Oil | 15 mL (1 Tbsp) | ~1,080–1,500 mg EPA/DHA. Anti-inflammatory. |
| Real Mushrooms Lion's Mane | ½ tsp | Powdered extract. Cognitive/neural support. Added ~3/30/2026. |
| Longvida Curcumin | 1 capsule | Anti-inflammatory (turmeric extract). |
| Thorne Vitamin D3 + K2 | 2 drops | 1,000 IU D3 + 200 mcg K2. Correcting documented low Vitamin D. |
| Children's Motrin (ibuprofen) PRN | 7.5 mL (150 mg) | Headache-prone days only. Reduces SIB that can accompany headaches. |
| Nystatin NEW 6/2 | 1 mL | Antifungal — dose 1 of 2 daily. Addresses possible yeast/Candida. Incompatible with Florastor (Florastor paused while Nystatin is active). |
Midday (11am)
| Item | Dose | Notes |
|---|---|---|
| ExLax Regular Strength | 2.25 squares (~19.35 mg sennosides) | Stimulant laxative. Works 6–12 hrs later. GI-specialist managed. |
| Fiber Gummies | 2 gummies (~3g fiber) | Supports bowel transition goal. |
Late Afternoon (3:30–4pm)
| Item | Dose | Notes |
|---|---|---|
| Children's Motrin PRN | 7.5 mL (150 mg) | Second dose on headache-prone days only. |
| Lemon Balm (Herb Pharm) | 817 mg | Antiviral/immune support targeting the viral component (EBV, COVID) that antibiotics cannot address. ⚠️ These three botanicals are NOT all given on the same day — they are rotated. Delivery: a few drops added to his Honest juice box. |
| Grapeseed Extract (NutriBiotic) | 100 mg | |
| Elderberry + Echinacea (Global Healing) | 1 mL |
Evening (~7:30pm)
| Item | Dose | Notes |
|---|---|---|
| Onyda XR (Clonidine HCl ER) | 1.4 mL | Prescribed to help NK be more present and regulated. Sedation is a side effect, not the primary purpose. Onset ~8:15–9:15pm. Wears off 3–5am — early AM wakings expected. Lowers BP. |
| Gaia Herbs Black Elderberry Syrup | 5 mL | Antiviral/immune support. Note: also in afternoon botanical blend. |
| Rho Nutrition Liposomal Quercetin | 6 mL | Antihistamine / mast-cell stabilizer. Anti-inflammatory. |
| Pure Encapsulations Magnesium Glycinate | 7.5 mL | Calming; also supports bowel motility. |
| Nystatin NEW 6/2 | 1 mL | Antifungal — dose 2 of 2 daily. |
Ongoing / Scheduled
| Item | Schedule | Notes |
|---|---|---|
| Folinic Acid + Methyl-B12 injection | 2×/week at night (while asleep) | Folate + B12 support. Used in ASD for cerebral folate deficiency. Planning to increase to 3×/week. |
| Glutathione + Phosphatidylcholine shot | ~Weekly (with Dr. B-F) | Antioxidant + neural/cell-membrane support. Shot #3 on 6/4 — going forward both compounds are included. |
| Florastor Kids Probiotic PAUSED | 1 packet/day (sipped in water bottle) | Paused ~6/1/2026 due to constipation. Will resume after Nystatin course (Nystatin would act against Florastor's yeast). |
Major Events Timeline — 2026
Use this to correlate behavioral observations with interventions. Many changes clustered around 4/18/2026 — improvements or setbacks near that date cannot be attributed to any single change.
April 1–3, 2026
HBOT introductory sessions 1–3 (1.1–1.3 ATA).
April 6, 2026
Main HBOT course began — 2×/day at 1.5 ATA. Cunningham Panel blood draw (~same week).
April 15, 2026
Cunningham Panel results received: Anti-D1 elevated (4000), Anti-Tubulin elevated (4000). ASO 806 (high strep). EBV VCA 522 (high). COVID elevated. Low Vitamin D. → PANS/PANDAS diagnosis confirmed.
April 18, 2026 — MAJOR CHANGE POINT
Multiple simultaneous interventions started:
- Antibiotics: Augmentin / Amoxicillin / Azithromycin (rotating ~1 month)
- Omega-3 Fish Oil, Vitamin D/K2, Magnesium Glycinate, Botanicals
- Diet overhaul: removed dairy, went gluten-free, removed added sugars
May 8, 2026
Last HBOT session — 40 sessions total over ~5 weeks.
May 18, 2026
Started Quercetin. Glutathione + Phosphatidylcholine shot #1. Antibiotic course completed (~1 month).
May 28, 2026
Started Florastor probiotic. Glutathione shot #2 (glutathione only — phosphatidylcholine missing this dose).
Late May 2026
Bovine Colostrum trialed for 2 days.
~June 1, 2026
Stopped Bovine Colostrum. Paused Florastor probiotic (NK became constipated). New onset: significant dandruff — none prior; possibly yeast-related.
June 2, 2026
Started Nystatin 1 mL 2×/day (antifungal — possible yeast/Candida).
June 4, 2026
Glutathione + Phosphatidylcholine shot #3 — back to full formula. Going forward: both compounds at every session.
June 5, 2026
Dandruff improving — some decrease noted. Consistent with yeast cause responding to Nystatin.
June 22 – July 3, 2026 — UPCOMING
Dr. Melillo Intensive — Rockville Centre. Two-week functional neurology intensive: primitive reflex integration, olfactory stimulation, galvanic stimulation, TENS, Brain Driver, light-therapy glasses, cold lasers. Log behavior, sleep, and SIB closely before, during, and after.
Provider Notes & Comments
Use this to share observations, flag concerns, or leave updates for the family and other providers. All notes go into a shared log that everyone can access.
Leave a Note
Click below to open the notes form. Your submission will be visible to the family and the care team.
Open Notes Form
📋 Setup instructions (for Michael):
1. Go to forms.google.com and create a new form.
2. Add fields:
3. Click Send → Link and copy the URL.
4. In this HTML file, find
5. Form responses automatically save to a Google Sheet you can share with the care team.
1. Go to forms.google.com and create a new form.
2. Add fields:
Date, Your name & role, Note / observation, Urgency (dropdown: FYI / Follow up needed / Urgent).3. Click Send → Link and copy the URL.
4. In this HTML file, find
YOUR_GOOGLE_FORM_URL_HERE (appears twice) and replace both with your form URL.5. Form responses automatically save to a Google Sheet you can share with the care team.
View Submitted Notes
All submitted notes are collected in a Google Sheet. Ask the family for the view link, or the family can share it directly below.
Key Contacts
| Role | Name | Notes |
|---|---|---|
| PANS/PANDAS MD (primary) | Dr. Giuseppina Benincasa-Finegold | Oversees supplement/botanical protocol and PANS treatment |
| GI Specialist | Pediatric GI (TBD) | Manages constipation / ExLax regimen |
| Dr. Melillo Intensive | Dr. Melillo, Rockville Centre | June 22 – July 3, 2026 |