G-tube (falling out/breaking)
Do many people with CdLS with g-tubes have them suddenly fall off or break? My sister has a low-profile g-tube that falls out too often due to the fact that she is very active, gastric pH, volume of water used to inflate, and other factors
There are lots of reasons for the tube to fall out. Some have to do with how the tube fits, some with the amount of stomach acid that leaks, and other causes. You should be able to get around the activity issue (we have patients who compete in sports with G-tubes in). You need a good nurse or doctor (pediatric surgeon), who specializes in tubes, to look at your sister. Most large hospitals have one or two people who are very good at it.
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