feeding tubes


New member
What experience does anyone have with feeding tubes? My 15 year old newly diagnosed son cannot gain weight despite all of our best efforts. The doctor has recommended a feeding tube. I cannot tell you how this idea devastated me. Joe is 111 pounds and 5 ft 9 inches tall. He is well below the 25th percentile for his age and at risk of failure to thrive.


New member
Hello jillybeans.
I feel your devastation. My son, (20 years old 6' tall - 145 pounds) also 'off the charts' (in the wrong direction). We fought the idea of a feeding tube for years. We finally realized, last December, that maybe it's not the worst thing in the world. It has made a pretty positive difference in his weight and in his health. He still struggles to put (and keep) weight on, but at least he has a bit more of a reserve when he does get sick. He has gained about 12 pounds in 8 months. Not great - but at least it's a move in the right direction! The clincher for us, was that HE wanted to have it done. He was tired of worrying about eat, eat, eat all day long. Best of luck to you!


New member
Hi Jillybeans,
My 23 y/o daughter just got a feeding tube. Like others, we fought the idea of doing this for several years. She is now looking at a transplant in the near future, and was not able to eat enough to gain the weight necessary to be evaluated. Like tharris, we waited till she decided to do it. The experience has actually not been bad. She does a large feed during the night and if she is not able/wanting to eat during the day, she will hook up and do more during the day. She is starting to gain weight, which is increasing her energy and making her feel better.


New member
We are just finishing up our stay now, 11 year old go his feeding tube on Tuesday. It is a life change for everybody but my daughter has one too. We have always waited and exhausted all other options first but it was time. I think Drs always push to get it cause they think it is inevitable at some point so why not.