Patient handout

Pediatric cardiomyopathy (chronic, sub-population)

PRODUCTION

1. Your condition

This handout is for pediatric cardiomyopathy (chronic, sub-population). Your care team identified this based on: pediatric hf / failure-to-thrive / feeding intolerance.

Other reasons your team may use this plan: echo: pediatric dcm/hcm/rcm/lvnc/arvc; family history of cm/scd or syndromic/metabolic features; metabolic/genetic flag (e.g., pompe, mitochondrial, muscular dystrophy).

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

Medication	Starting dose	How	When	What it does
enalapril	0.05–0.1 mg/kg/day (titrate)	PO	BID	ACEi is the pediatric HF cornerstone (weight-based); enalapril/lisinopril (2019 AHA Pediatric CM)
carvedilol	0.05 mg/kg BID (titrate to ~0.5 mg/kg BID)	PO	BID	Beta-blocker in pediatric HF (pediatric carvedilol RCT neutral overall but used in practice with selected benefit) (2019 AHA Pediatric CM)
spironolactone	1 mg/kg/day	PO	once–BID	MRA in pediatric HF (2019 AHA Pediatric CM)
furosemide	0.5–1 mg/kg/dose	PO/IV	once–BID	Weight-based diuretic for pediatric congestion (2019 AHA Pediatric CM)
digoxin	weight/age-based; level-guided	PO	once–BID	Digoxin retains a role in pediatric HF (level-guided) (2019 AHA Pediatric CM)

Plan: Pediatric CM — weight-based HF GDMT + etiology-specific + advanced (2019 AHA Pediatric CM; 2023 ESC Cardiomyopathy)

3. When to call your provider

Contact your care team if any of the following happen:

Refractory pediatric HF / RCM → early transplant listing + Berlin Heart bridge — 2019 AHA Pediatric CM
High pediatric SCD risk → pediatric EP/ICD — 2023 ESC Cardiomyopathy
Metabolic crisis → pediatric ICU + metabolic team — 2019 AHA Pediatric CM

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

Treatable metabolic etiology (Pompe — ERT; selected FAO/mitochondrial) — disease-modifying therapy materially changes outcome; do not miss — 2019 AHA Pediatric CM
Duchenne/Becker muscular dystrophy — EARLY ACEi/MRA prophylaxis before overt cardiomyopathy + glucocorticoid (deflazacort/prednisone) standard of care — 2019 AHA Pediatric CM
Pediatric HCM — pediatric-specific SCD risk model (NOT the adult HCM-RISK-SCD); EP referral for risk + ICD (size-aware) — 2023 ESC Cardiomyopathy
Pediatric restrictive cardiomyopathy — poor prognosis; early transplant listing (often before severe symptoms) — 2019 AHA Pediatric CM(life-threatening)
Refractory pediatric DCM HF — transplant + Berlin Heart / pediatric VAD bridge (leading pediatric transplant indication) — 2019 AHA Pediatric CM(life-threatening)

5. Follow-up

Structured transition to adult CM/ACHD care; lifelong family cascade

6. Sources

Guideline: 2019 AHA Pediatric Cardiomyopathy Scientific Statement + 2023 ESC Cardiomyopathy Guideline + 2022 AHA/ACC/HFSA HF Guideline (framework)