NG tube advice needed

[kernelmom3]

First of all, a HUGE thank you for all the hugs and prayers! The info and advice I get when I come here is so helpful and means so much to me!

My daughter (S) is home! She still has her PICC line and NG tube. She had to get a new NG placed two days ago so she's still not eating much and is on 24 hour continuous feeding. I wonder with all the calories she's getting/how full she feels, how will she start to eat on top of all that? Any NG/eating with NG advice is MUCH appreciated!!

She's still not pain free. Cramping still hurts but comes and goes and she still looks pretty bloated. What causes that? I know it's partly air in her stomach but should I be concerned? I'm so used to seeing her stomach flat as a board and she looks like she's got a little beer belly!!

 

[CarolinAlaska]

I wonder if she has some gastroparesis. Also, my daughter didn't tolerate the first formula (Ensure) and had to be changed to a predigested formula (Peptamen Junior) before she started to feel better on formula. As she gets better, maybe the formula can be changed to be more physiological. My daughter's nutritionist said that it wasn't good for them to be fed around the clock for long term. She eventually got her feeds at night so she could eat during the day, but at that point in time, she never really had an appetite. Hang in there, she will improve and eventually you'll look back and remember how much worse she was than she is.

One other thought. My daughter couldn't stand up straight for a couple of days after getting her NG tube in because it hurt her throat too much. Come to find out, she had strep throat.

 

[Maya142]

My daughter only had overnight feeds with her NG tube but when she had an NJ tube, she was on continuous feeds.

A few ideas: with continuous feeds, she may just be full and so she has no appetite. Is she getting all her calories through the tube?

Also, for a while, my daughter hated how the tube felt in her throat and she said eating with it was very uncomfortable. Fortunately, she got used to it pretty quickly and then it stopped bothering her at all.

She may also be not tolerating the formua - that might account for the cramping and bloating. My daughter had to try many formulas before we found one that work. She didn't even tolerate semi-elemental formulas like Peptamen Jr, so we went to elemental (Neocate).

It's also probably going to take a while before she feels WELL - considering the abscesses and all the issues she's had, it does take a while for the gut to heal.

My daughter has gastroparesis and could not tolerate NG tube feedings - her symptoms were extreme nausea, to the point of throwing up once we started the feed. She also had stomach pain and nausea after eating anything.

I would guess your daughter's issue is a formula problem and not gastroparesis.

Does she have a backpack for continuous feeds? My daughter hated being hooked up all day, even though she could move around with the backpack.

 

[pdx]

So glad to hear that she's home!

A few questions for you:
What formula are you using?
What's the flow rate of the pump?
How many calories total is she getting each day from formula?

 

[Tesscorm]

When my son did supplemental EN (formula plus food), he inserted the NG tube each evening. So, he never had to eat with the tube inserted...

As far as feelling full, he did feel full each morning and could not eat breakfast. However, I found, over time, he altered his eating schedule to have a late evening meal/snack - ie still had three meals during the day but times were noon, 6pm-ish, 9pm-ish.

Also encourage you to try different formulas. As you're using an NG tube, taste is not an issue - elemental formulas are easier to digest, not sure if that translates to being more easily tolerated?? My son used Tolerex (Nestle).

 

[kernelmom3]

She's using Osmolite 1.5 at 55mL an hour. Still not eating today!!!

 

[Sascot]

My son only had the NG tube when on exclusive EN, so no idea on eating with it. I have to say when he started eating at the end of the 8 weeks, he hated the feeling of trying to swallow food with the NG tube in.

 

[pdx]

Thanks for the info on the formula. If she's doing the tube feeding 24 hours a day, then she's getting just about 2000 calories a day. That's what my daughter was on during her 2 months of tube feeding. (Some of the kids on this forum have been on 2500 or even 3000 calories of formula a day, but the required calories depends on a lot of things, including starting weight, activity level, and how well calories are being absorbed.)

Did your doctor say if your daughter was supposed to eat any regular food or not? EN actually works better for gut healing when kids don't eat food, although some studies have shown that it's OK to get up to 10% of your calories from food. If she's not wanting to eat food, I wouldn't push it, since she's getting enough calories from the tube feeding.

Is she still getting cramps and bloating? If so, the next step should probably be trying some different formulas. I don't know much about Osmolite, but it looks like it's low residue, but not broken down. There are formulas that are more broken down that are more easily absorbed. You could start by trying a semi-elemental formula, like Peptamen or Pediasure-peptide. There are also elemental formulas that are even more easily absorbable. If you call your home health supplier, they can probably send out some samples of different formulas for you. (Our home health rep was really great--he knew more than the doctors about all the different formulas.)

One final note. Once your daughter finds a formula that works for her, you can try to increase the flow rate, so that she doesn't have to be attached to the pump 24 hours a day. My daughter could tolerate a flow of about 65 ml/hr, which meant that she could be off the pump for about 3 hours a day. Many kids can tolerate even higher flow rates, so that they can get most of the feeding done overnight. We could never get there, but even a few hours off was a good break for her.

 

[Maya142]

55 mL/hour is pretty slow, so I would guess it's not the rate. Sometimes 1.5 formulas are hard to tolerate. We tried Peptamen 1.5 and then had to go to Peptamen 1.0 because M had cramping, nausea and diarrhea.

She did better with Peptamen 1.0, but really, she needed an Elemental formula and we went to Neocate.

I don't know what kind of formula Osmolite is, but perhaps she needs a different one?

Wanted to add that M tolerated a rate of 80mL/hour when we got her on the right formula. We had to try many formulas - semi-elemental, then elemental - before we found one that worked. Your GI may also have samples.