- Joined
- Dec 26, 2014
- Messages
- 1,264
My daughter E is just finishing her 6th week of EN via NG tube. I wanted to write a little about our experience so far, because she had an issue that maybe others might also have.
The main thing I wanted to share is that--after a lot of trial and error--we realized that E can't tolerate the prebiotic (inulin) used in many of the Peptamen products, including Peptamen Jr 1.5. When she was on Peptamen Jr 1.5, she had a lot of cramping and diarrhea, which we thought at first was just due to her not being able to tolerate the higher calorie density. But it turns out she's fine on adult Peptamen 1.5, which doesn't contain inulin; she has no stomach pain and no diarrhea. Luckily, she's almost 13, and her doctor is OK with her using the adult formula.
Peptamen Jr 1.0 doesn't have inulin either, and she did fine with that too, but with the adult 1.5 formula, she doesn't have to be attached to the pump for as long each day.
Inulin intolerance is actually fairly common (and being more noticed now that inulin is being added to so many food products), so it's something to think about if your child is having problems with a particular formula. Peptamen isn't the only brand that includes inulin in some of their products.
Anyway, once we figured out to use the adult Peptamen 1.5, things have gone well. E gets about 2000 calories a day from formula, and she's allowed to eat about 200 calories a day of regular food. Her weight has gone from 70 to 82 pounds in 6 weeks.
A couple more observations...
E is a very sensitive and anxious kid, and we never imagined that she would tolerate the NG tube as well as she has. The insertion wasn't easy for her, but it wasn't bad either (it was done with a small 8-fr tube in a children's hospital, with lidocaine and nitrous oxide). The first 2 days it was in, she was not happy; her throat was sore, and she felt a little like she was choking. But after those 2 days, she really hardly notices it.
Finally, I just wanted to say that I wish I hadn't used the NG tube as a kind of threat early on when trying to get my daughter to drink nutrition shakes. My husband and I would say things like "you have to try to drink this so you don't have to get an NG tube," thinking that that would give her more motivation to drink them, and not imagining that she would actually need a tube. So when she needed a tube despite her best efforts, we felt like terrible parents, and spent a lot of time reassuring her that it wasn't her fault that she needed it. And she was more anxious about the tube since we'd always made it seem like this hard thing that she should try to avoid. Ugh. We try not to say things like that any more...
The main thing I wanted to share is that--after a lot of trial and error--we realized that E can't tolerate the prebiotic (inulin) used in many of the Peptamen products, including Peptamen Jr 1.5. When she was on Peptamen Jr 1.5, she had a lot of cramping and diarrhea, which we thought at first was just due to her not being able to tolerate the higher calorie density. But it turns out she's fine on adult Peptamen 1.5, which doesn't contain inulin; she has no stomach pain and no diarrhea. Luckily, she's almost 13, and her doctor is OK with her using the adult formula.
Peptamen Jr 1.0 doesn't have inulin either, and she did fine with that too, but with the adult 1.5 formula, she doesn't have to be attached to the pump for as long each day.
Inulin intolerance is actually fairly common (and being more noticed now that inulin is being added to so many food products), so it's something to think about if your child is having problems with a particular formula. Peptamen isn't the only brand that includes inulin in some of their products.
Anyway, once we figured out to use the adult Peptamen 1.5, things have gone well. E gets about 2000 calories a day from formula, and she's allowed to eat about 200 calories a day of regular food. Her weight has gone from 70 to 82 pounds in 6 weeks.
A couple more observations...
E is a very sensitive and anxious kid, and we never imagined that she would tolerate the NG tube as well as she has. The insertion wasn't easy for her, but it wasn't bad either (it was done with a small 8-fr tube in a children's hospital, with lidocaine and nitrous oxide). The first 2 days it was in, she was not happy; her throat was sore, and she felt a little like she was choking. But after those 2 days, she really hardly notices it.
Finally, I just wanted to say that I wish I hadn't used the NG tube as a kind of threat early on when trying to get my daughter to drink nutrition shakes. My husband and I would say things like "you have to try to drink this so you don't have to get an NG tube," thinking that that would give her more motivation to drink them, and not imagining that she would actually need a tube. So when she needed a tube despite her best efforts, we felt like terrible parents, and spent a lot of time reassuring her that it wasn't her fault that she needed it. And she was more anxious about the tube since we'd always made it seem like this hard thing that she should try to avoid. Ugh. We try not to say things like that any more...
