Feeding Tube Concern

[3coolsons]

Hello,
I am writing for some knowledge on feeding tubes. I have 15 yr old twin boys with CF and they are really having trouble with weight gain. Our CF clinic pushes the feeding tube at every visit. Our boys had feeding tubes at age 8 which was a true nightmare and are refusing to even consider the possibility again. I feel like they need the tube but the nightmare of the previous tube experience hates to put them through it all again. Their lung function has been low as well and the clinic say that weight and lung function go hand and hand. I was wondering how many of you have feeding tubes and have had a great experience with them? We have a new gastro dr now and that makes me feel some better about trying the tube again. Should I just make the boys have the tube? Its such a hard decision to make. I don't want to look back in a few years and regret not trying it one more time. Any advice would be greatly appreciated.

 

[nmw0615]

I had a feeding tube from age 11 to 17. I hated it at the time I got it. Absolutely hated it. Hated the feedings, hated the look, hated that I couldn't gain weight on my own. I even hated my parents a little bit for making me get it.

My feelings began to change after a while. I no longer had to worry about eating when I got sick. I was looking healthier. My pfts were going up. I never loved the tube, but I stopped hating it. I realized it took pressure off me that I didn't even realize I had.

I would suggest talking with the new gastro doc with your boys. Have them take the lead, asking any and all questions they come up with, along with asking questions yourself. See if the new doc has any other suggestions for gaining weight. I worked with my old one to come up with a dietary plan that was healthy yet helped me gain and maintain weight.

 

[Aboveallislove]

Are their mutations dd508f? If so, would it make sense to see how the kalydeco results are in June to see if it makes sense to hold out until year end for the meds? I've seen pictures of two folks in the trial who obviously gained weight...they couldn't discuss the trial but the before after pictures spoke volumes. Just a thought.

 

[Krazy4Katie]

My daughter is now 17 and it does help her (when she uses it). In the beginning when she was younger, she was able to gain some good weight, but as she got older & started to rebel, along with trouble with constant nausea in the morning (constant changing meds around to help her feel better).

It's a wonderful thing when they get admitted to get the nutrition when they are just too sick to eat.