80% EN? NG? for 4 year old

[cherryblossoms]

I got my second opinion from another GI re: DD Wednesday. One thing she changed was that she upped her Pediasure Peptide to 4 bottles, from 2 a day. Mentioned something about doing it via a tube through her nose, but DD said she would drink it. We left it at that; DD is 4 years old btw.

Weds and Thursday she drank all 4 no problem. Had issues yesterday with 3 of them but got them down. Today she's only drank one.

I'll be calling GI Monday, but how hard is it to admister this stuff via an NG tube from home? I assume it wont stay in permananently?

Also, when DD has had bowel studies where she needed the contrast put in through NG, she had horrible gagging and vomiting through her nose with it. THe idea really freaks her out. Not enough to make her drink the Pediasure Peptide though. Ugh

 

[Sascot]

She has done well to drink as much as she has. My son hated it and ended up with an NG tube. Different GI's seem to do it differently. My son had the tube in all the time for 8 weeks. The first couple days were hard - uncomfortable and didn't like the formula going in. However after that it was fine, he got used to the tube and I "fed" him through a bolus at meal and snack times. He didn't like having the tube put in so I was happy it just stayed in!

 

[Clash]

My son just started that protocol but he is much older, 17. He takes his in and out, so evening time he puts the tube in then takes it out 14 hours later. It might be with smaller children they leave it in since it might be harder with little kids putting it in and pulling it out everyday.

This us our first day home so his first day setting up the pump, feeds, tube etc. He did it all himself and seemed to do okay. I just supervised. It's a simple process.

 

[cherryblossoms]

Thank you both. I don't know which would be better,the NG route or a J-tube or other. Something to discuss with GI, I suppose. She has really bad reflux, esophagitis, and short bowel syndrome also. It's a miracle we've come this far without needing any sort of tube feeding, but I'm so broken down from nagging her. It's really destroying our quality of life, moreso than any tube feeding would hold us back.

I'd still like to hear from others, thanks!

 

[Tesscorm]

My son was also older when he did EEN, almost 17. He inserted an NG tube every night and removed it in the morning. But, I also have a friend who's daughter was approx. 9 when she did EEN - she did not want to insert/remove the tube and kept it in during the entire EN period. (I'm just not sure if it needs to be replaced after 4 weeks???)

 

[cherryblossoms]

I couldn't imagine placing an ng for dd every day, or for myself. Clash and Tess, your sons are both amazing.

I had an NG for bowel rest after an ilius I got after the c-section for DD. Had it two days and it was MISERABLE. Felt like I was constantly gagging, was very painful to swallow, and I didn't want to even talk or move my head. They look like they'd be nothing to deal with, but far from!

I know having a PEG or J-tube in her stomach comes with its own set of problems, such as infection, skin erosion from stomach acid, invasive surgery. Ugh.

This is all so hard to deal with. I have no one who understands, feel like I've been alone in this since DD was born. So, thank you all.

 

[my little penguin]

Here is a site for little ones who due to severe food allergies or egids have tiny kids infants on ng tubes or j tubes etc..,
http://community.kidswithfoodallergies.org/forum/elemental_diet

You need to register but it free
They really know the ins and out if getting little ones to drink formula only or limited diets
Good luck

 

[cherryblossoms]

Thanks penguin, I was lookng for something like this last night on google!

 

[CrohnsKidMom]

We have not had the NG experience, but our GI recommended it and explained what he does. And like mentioned before, each GI is different. Our GI would not do EEN without the NG tube, and said the tube would be in for 3 mos (but like Tesscorm said, I think it gets changed after 4 wks). My son would have had to wear a backpack with a pump almost around the clock. He could disconnect the tube from the pump for only a few hours a day. I can see this being something in our future, as my son was on prednisone for a total of 5 mos last yr, and I don't think our GI would allow him back on it anytime in the near future. I wish you all the best as you make these difficult decisions.

 

[Jmrogers4]

We did it without the NG tube but I think it would be easier with an NG tube. It was constant nagging and it wasn't because he didn't want to do it. He never felt hungry so it was constant reminding and then trying to drink before it all before the next one since. He needed 8-9 a day and you really had to plan the day out.

 

[Farmwife]

Grace had a n-g tube placed for four months and then received a g-tube.
It was very traumatic for all of us but it was for the best. It took her three to four days to adjust (lots of hugs, kisses and presents from everybody in her life) and then she didn't even notice it. Grace drinks EO28 Splash. It's the most palatable and that's not saying much. Still she can drink a juice box if she had to.

 

[CarolinAlaska]

I think it would be easier with a 4 yo. Farmwife's Grace is my heroine with this. It seems the younger kids take it more in stride. It would probably be permanent and changed every month until decided it was no longer needed. One benefit for your daughter would be the slow feeds... Harder to drink boluses with her issues I suspect...

 

[Farmwife]

Grace's tube was replaced every four weeks. Do you know how they plan to insert the tube. Some GI's have it done in the hospital and some have it done at home. Ours was done at home. A home health care nurse came to our home and inserted it. The she came back every four weeks to change it and monitor her vitals.


Oh and Thanks Carolin:smile:

 

[cherryblossoms]

I'm not sure. I put a call in to the doctor this morning. So I'll update when I hear something back. Just waiting right now! Thanks for the replies

 

[poppets mum]

My dd was 7 when she had hers. It stayed in most of the time only coming out by accident. I believe they are changed after a month. I did not like the Hospital making us as parents insert the tube but once it was in she barely noticed it after a few days. I think it makes the throat a little sore at first.

 

[cherryblossoms]

Thanks for the help and support, everyone. It looks like we'll be staying tube free for now. The NG tube won't be an option because of DD's reflux and esophagitis. GI doc doesn't want to jump to a j tube or anything just yet, because of the additional inflammation it can cause. So lots of nagging is in my future lol. I made up a fresh new sticker chart for this, and DD does well if I set a timer while she drinks. Wish us luck!

 

[my little penguin]

We did sticker charts for DS and he drank all of his.
When he was no food we paid him . Now he drinks for free.