Tube Feeding and DGE

[Anonymous]

My son was just diagnosed with Moderate-Severe Reflux and Moderate – Severe Delayed Gastric Emptying. I knew about the reflux but was uncertain about the DGE. A little background: He was 8 weeks early (Triplet), and was NG feed in the NICU until released and came home on a Cleft/Palate Bottle for his Cleft lip and Palate. He ate decent but not great. Shortly after being home about a week or so he started to constantly throw up -projectile style alot of times. THis has gone on now for the past 4 months. I brought him to the peditrician several times and he has been on Axid, Reglan, and now Prilosec. We went and saw the GI about a month and half ago and she didnt even seem interested in his issues and just bumped up the meds a little and changed him to Neocate. No tests were ran. I was furious.
So now since he had surgery a few weeks back to repair his lip he hasnt wanted to eat and continues to throw up. About a month before surgery it started to become super difficult to feed him (bottle aversion.)
This past week he was admitted to the hospital because he vomited so much he was dehydrated. FInally Finally they ran more tests and found he has DGE. They put him back on Reglan and increased the dosage quite abit and he hasnt thrown up in days now.
The problem is he will not eat from the bottle still. Anyone have any hints, tips they have learned to overcome the aversion to the bottle? We tried to do an oral tube through the mouth but he just coughs it up each time. Until his nose is healed from surgery( had a rhinoplasty done at the repair of the lip and has plastic stents in his nose) we can not use an NG tube. The next step is the G-Tube and we dont want to do that because we know the nasal tube can be done in a few weeks.
I am in desperate need of some help though feeding this child.

[Anonymous]

Hi there,
Your son sounds so much like my son. My son also had a cleft palate (not the cleft lip though). and was NG tube fed. He also became very averse to the bottle and honestly, I think the reflux and vomiting caused more problems than the cleft. Something that seemed to help Bryce when he had an aversion to the bottle was switching bottle nipples if you can do that. Also, are you working with an occupational/feeding therapist? This really helped Bryce a lot as well. Also, at one point we ended up spoon-feeding Bryce his milk and he actually ended up getting more down that way than he ever did with his bottle. Good luck. Those are just some ideas. I hope you can figure out something that will work for your little guy and get him eating from his bottle. I sure know how frustrating it is when they won’t eat.

[Anonymous]

I agree with Heather- a feeding assessment by an OT or an ST might help. They may be able to offer you some suggestions. We also tried every kind of bottle and every nipple to get her to feed. We found that getting her as comfortable as possible before a feeding helped somewhat. But for Hailey, her aversion was so bad that nothing really helped. I think that ensuring the pain is under control is key. Good luck.

[Anonymous]

Hi there

Sorry you are going through all of this. Just saw this post… how is he doing? My son was similar, except he was never tested for DGE… maybe he had it, may he did not but he was treated with Motilium anyway.

One thing that worked for most of us at the beginning — and i would never recommend it, but seems like your case is extreme because he is not taking enough + you cannot put in the NG back — is sleep feeding. Will he take the bottle right before a nap when he is sleepy… a couple of hours after going to bed at night etc? For a while, before we got the NG for Matthew, that is what we had to do…. get him sleepy and get him to eat. I am saying i would not recommend it because i think it caused Matthew mroe harm than anything adn we had to get the NG and the G anyway…. but seems like you have no other options?

Something else that worked for us was to switch formulas from time to time…. so we would go back between the NEocate and the Alimentum… every time we did a switch, he improved for a few days and then went back to where he was.

Please do get an evaluation done by your Early Intervention or Birth to three program (where are you?) Ask for PT, OT, ST etc (at least in NY, they do most of those anhyway + an education/dev eval….). Sometimes they take some time to set up. Matthew developed an aversion prob from reflux… but he also has some muscle weakness/muscle tone issues in his upper body and mouth that prob made it very uncomfortable for him to eat and that made it quite hard for him to eat properly (we just learned about those and he is 2!).

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