Protocol · Genetic/Metabolic Disorders
Prader-Willi Syndrome Supportive Care Protocol
Vitamin D and Calcium are the core of this stack, with 5 supporting supplements. Each row gives the amount the protocol lists and the grade our evidence database holds for that supplement in Prader-Willi Syndrome Supportive Care.
We are re-verifying the studies cited on protocol pages; only confirmed citations are shown.
The stack
7 supplements · none graded yet
| Grade | Supplement | Amount listed | Why it’s in the stack | Evidence on file |
|---|---|---|---|---|
| Primary stackThe core of this protocol | ||||
| Vitamin D | Amount listed: 1,000–2,000 IU daily (adjust based on levels) | Deficiency common; essential for bone health (osteoporosis risk high); supports muscle function | Not graded yet | |
| Calcium | Amount listed: 1,000–1,200 mg daily from diet and supplements | Essential for bone health; osteoporosis common in PWS | Not graded yet | |
| Supporting stackListed as additions to the core | ||||
| Coenzyme Q10 | Amount listed: 50–100 mg daily | Supports energy metabolism; may help with hypotonia and fatigue
| Not graded yet | |
| Omega-3 Fatty Acids | Amount listed: 1–2 g EPA+DHA daily | May help with behavioral symptoms; supports brain health and metabolism | Not graded yet | |
| Carnitine | Amount listed: 500–1,000 mg daily | Supports fatty acid metabolism; may help with energy and muscle function | Not graded yet | |
| Probiotics | Amount listed: 10–20 billion CFU daily | Supports gut health; may help with constipation common in PWS | Not graded yet | |
| Fiber Supplements | Amount listed: Age-appropriate fiber intake; supplement if dietary intake inadequate | Helps with constipation; adds volume to lower calorie diet; supports satiety | Not graded yet | |
How this protocol works
In plain language
Prader-Willi Syndrome (PWS) is a complex genetic disorder caused by loss of function of genes on chromosome 15. It occurs in about 1 in 15,000 births and affects multiple body systems.
KEY FEATURES:
Infancy:
- Severe hypotonia (floppy baby)
- Feeding difficulties and poor weight gain
- Developmental delays
Childhood and beyond:
- Insatiable appetite (hyperphagia) - the hallmark feature
- Obesity if food access not controlled
- Short stature
- Intellectual disability (usually mild-moderate)
- Behavioral problems (tantrums, obsessive behaviors)
- Hypogonadism (incomplete puberty)
MAJOR CHALLENGES:
1. Food-seeking behavior: Constant drive to eat; requires strict environmental control
2. Obesity complications: Type 2 diabetes, sleep apnea, heart disease
3. Behavioral issues: Emotional instability, stubbornness, perseveration
CRITICAL: PWS requires comprehensive, multidisciplinary care. This protocol is SUPPORTIVE ONLY.
MANAGEMENT:
- Nutrition: Strict calorie control; food security (locked access)
- Growth hormone therapy: Standard of care; improves height, body composition, strength
- Physical activity: Regular exercise essential
- Behavioral support: Consistent routines, behavioral therapy
- Monitor for: Sleep apnea, scoliosis, diabetes, osteoporosis
CALORIC NEEDS:
- Much lower than typical: ~8-11 kcal/cm height for weight maintenance
- Supervised meal times; controlled portions
Vitamin D and Calcium* are essential for bone health (osteoporosis common).
Fiber and probiotics* help with chronic constipation.
CoQ10 and carnitine* may support energy metabolism.
Expected timeline: PWS is lifelong. Management focuses on preventing obesity, optimizing development, and quality of life.