MCAS-specific coag workup on CTAD tubes: anti-Xa, tPA, PAP, fibrinogen, VWF, full lupus anticoagulant, thrombophilia panel
Epi-pen Rx + montelukast letter of medical necessity
Referrals & coordination
Deo package assembled and sent by Richard: reframe + EKG + echo request + contraindicated agents + ivabradine + exercise Rx + 4 clearances. No visit needed
Neal coordination at the four-person visit: PMDD bidirectional framing, ER avoidance + medical trauma, pre-surgical mental health gate, who-manages-what
Procedures & exams
Comprehensive physical — 257 items across 12 systems (no one has done a head-to-toe in the entire record). Companion notes provided by system with longitudinal comparison points
Psychiatric assessment (11 items) excluded — coordinated separately with Dr. Brian Neal
In-office 12-lead EKG (updated QTc — last 480 ms June 2021)
Pelvic exam with dissociation context (later, in-house FM — separate visit)
Safety items for the chart
Anesthesia protocol on file (bupivacaine not lidocaine, MH precautions, no misoprostol, no NSAIDs)
Methylprednisolone on every allergy list + ER-accessible record
Wildfire smoke protocol (HEPA Rx, N95, med pre-loading, AQI threshold)
ER avoidance triage protocol built together + syncope standing order + sanctuary calls clause
Questions that need answers
Does the Taumann/Molderings reframe match how you think about my IST?
The Feb 2026 thyroid: non-thyroidal illness or impaired peripheral conversion? Dosing decision under your license
August 2025 escalation: meaningful change, or one-off? Does it change the threshold for next-tier agents?
"When you say 'go to the ER' and I say 'no' — what happens next?"
Would a tiered escalation agreement — your authorship, your clinical judgment — be something you'd be willing to build?
Disclosures
A disclosure at Richard's visit (not written in this document — should be heard, not read). Coordination visit afterward: Neal + Richard + Eldon + me, billed through Richard's practice or cash pay
ER avoidance + medical trauma (dedicated visit — single topic, space to respond)
Termination letter context — four exhibits showing the escalation criteria, patient compliance, physician approval of triage, and subsequent termination citing that compliance as non-compliance. Why a written framework is necessary
Withholding pattern — disclosed at the coordination visit with Neal present to contextualize why curation happens
Care agreement to build together
Tiered escalation framework: RED (go now) / Yellow (call first, callback window) / Green (clinic or home)
Per-scenario workup expectations with starred items — Richard's clinical floor, not patient preferences
Yellow-tier triage script — reasoning stated explicitly, protects both parties
Non-compliance protection clause — Neal co-signs as independent confirmation
Bridging care commitment — missing evaluation within agreed timeframe
Patient rights appendix — written in Richard's voice, not mine
Signatories: Richard (clinical content), me (good faith), Neal (non-compliance clause), possibly Blain + covering physicians
Key literature for this movement
Thompson 2002 — Dev Med Child Neurology. "Benign congenital hypotonia" label outdated since the 1960s; ES as first-tier
Lee 2026 — Int J Mol Sci. 72% WES-first yield; 58.8% different diagnosis than initial impression
Sharma 2021 — 324-infant hypotonia cohort. PWS/Angelman as most common diagnosis
Taumann/Molderings 2025 — IST in MCAS: H2-driven chronotropy + chymase → local RAAS → sympathetic NE. Beta-blocker disinhibition mechanism. Author outreach pending to clarify evidence levels for V-fib risk, disinhibition mechanism, and CTAD protocol
Taumann/Kolck — 12/18 MCAS patients had diastolic LV dysfunction on tissue Doppler
Taumann/Molderings 2025 — mechanistic reframe: mediator-driven IST, not primary SA node pathology. Beta-blocker disinhibition, ACEi bradykinin contraindication
Taumann/Kolck — diastolic dysfunction in 12/18 MCAS patients on tissue Doppler. Basis for echo with E/e' request
Mayo Clinic Laboratories — MCMCU random urine panel methodology. N-methylhistamine, 11β-PGF2α, LTE4
October 2024 PTT-LA 1.21 — indeterminate lupus anticoagulant without confirmation steps (mixing study, hexagonal phospholipid neutralization). Would need to be rerun to completion
Fibrinogen 583 mg/dL (Oct 2024) — anchoring abnormal lab for FGB/FGG and coag pathway. May reflect acute-phase, dysfibrinogenemia, or MCAS-driven elevation
Feb 2026 thyroid panel — TSH 1.2 normal, FT4 2.5 HIGH (mass spec, upper limit 1.77), rT3 55.9 HIGH. Discordant pattern: non-thyroidal illness or impaired peripheral conversion
Pre-surgical readiness — Richard defines the gate list. Domains I've been thinking about: MCAS stability, cardiac clearance, thyroid, hemoglobin, emotional readiness, surgical team preparation
MCAS anesthesia protocol finalized for Hattiangadi's team (pre-med, bupivacaine, no misoprostol, recovery room flare plan visible)
Patient safety protocol communicated to surgical team
ES findings integrated into anesthetic plan if relevant (RYR1, DMPK, COL6, FBN1)
Post-surgical timeline: Hattiangadi sign-off required before conception. 3+ months surgical recovery before attempting
Destination 2: Pregnancy — True North Birth Center as plan A
Preconception readiness — Richard defines the gate list. Domains: MCAS stability, cardiac clearance, thyroid, surgical recovery, emotional readiness, reporting protocols
True North Birth Center engaged as plan A
Standing protocols in place before conception: early viability imaging (TV US + serial hCG at 5–6 weeks), luteal-phase progesterone monitoring, thyroid protocol (increase LT4 immediately on positive HCG)
DMPK — if confirmed: congenital DM1 in offspring has very high neonatal mortality. Anticipation in maternal transmission
Misoprostol CI (October 2020) + D&C anesthesia reaction (January 2024) — both standard loss-management pathways compromised. Expectant management as default