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 drawing of a nasogastric tube and a gastrostomy button on a tray
TUBES

Ask for millilitres per feed, a backup if the NG comes out, and when oral trials will be tried again.

Most infants start with a nasogastric tube. A gastrostomy is considered later if oral feeding stays unsafe, if there is documented aspiration, or if the NG will not stay in. Write the plan down. A verbal discussion in the hallway is easy to lose.

NASOGASTRIC

Most infants start here

It can be placed the same day and removed when sucking is safe. Common problems are tape, clogging, and the tube being pulled out. For many infants in phase 1a this is all they need.

{comic_thumb("en", "s1a", "Comic: bottle, feeding tube, unlocked fridge")}
GASTROSTOMY

Considered later

Ask about it when oral trials keep failing, aspiration is documented, or the NG will not stay. It is surgery and needs a team decision.

{comic_thumb("en", "tubes", "Comic: NG tube and gastrostomy button on a tray")}
RESEARCH

Infant oxytocin is still in trials. It does not replace tube feeding.

A French-led group gave infants a short course of intranasal oxytocin. At age 3 to 4, social, endocrine, and metabolic measures looked better than in children who never received it. Swallowing results are still being studied. This is not US or Chinese standard care, and it is not something to buy online.

If your hospital has a trial, you can ask. If not, keep the focus on volumes and tone.

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