PWS DESK Independent handbook · 中文 ES

This site is not the association. US crisis calls: pwsausa.org · 941-312-0400. We do not answer that phone.

Comic clipboard on an empty rail
NICU

Before discharge, confirm that a methylation test was ordered.

This is phase 1a: low tone, weak suck. Hyperphagia is not the problem yet. You need a test that can actually detect this syndrome, written feeding volumes, and an endocrinology appointment so growth hormone is not delayed for months. Infant oxytocin has been studied in Europe. It is not US standard care. Do not buy a spray.

PANEL ONE

Methylation detects about 99 percent. FISH is a different test.

Ask whether DNA methylation analysis has been sent. FISH or microarray can miss imprinting defects.

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02 FEEDING

Write volume, tube, night call

Most start with NG. NG or G.

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03 ENDOCRINE

Order sleep study before GH

Oximetry is not polysomnography. Sleep study.

Comic: vial and sleep monitor

Three cards for the ward folder.

Sources: American Journal of Medical Genetics, 2011 · Endocrine Connections, 2024 · Orphanet Journal of Rare Diseases, 2025