Horrible Retching Post Nissen & on G-Tube

[cbarney12]

I am at such a frustrating spot right now. My 6 month old baby had heart surgery (VSD/ASD repair) in Jan. of this year followed by a nissen and gtube in Feb. He is on continuous feeds, but the retching episodes are still coming. And when they do, they are horrible. He gets so miserable and uncomfortable, many times I'm on the verge of taking him to the ER. We have to take him off feeds completely until it passes. Sometimes replacing his formula with pedialyte for up to 48 hours. Usually lasts 2-3 days then passes. He's fine for a week or so, then the retching comes back. He has DiGeorge Syndrome and growth is typically slow, but with having to take him off food, it's making his progress that much slower.

Anyway, just thought I'd reach out... Kind of getting desperate for an answer or advice from someone who has actually gone through it. The docs and specialists have not come up with any answers.

[22QMOM]

Wow! My son is currently in the hospital because of the same episodes! 5-7 days of retching, lethargy, drooling, and the doctors cannot figure it out!  Then the next week he is perfectly fine! He got his GTUBE/NISSIN in march of this year......and for the last 5 months has been suffering! The surgeon just recommended today trying a GJTube so hopefully it will help! He also has DiGeorge Syndrome! So glad I came across this while despirately searching for answers! going to look up CVS as well.

[Sharo321]

I hear you and I am so sorry, for I know all about this. First, my daugther at birth had DiGorge, a small VSD, and among other issues, a g-tube placed. The nissan was too tight a wrap, she gagged till I thought she would pass out for about a week at a time when she was about age 6 months or so. We took her down to the ER every week, she was be completely still btw each retching episode. I found out later what we think it was. She was having migranes and hurt her so badly she would cry, retch and then sleep. It's called (CVS) Cyclic Vomiting Syndrome. you can find it on the web, but we didn't know that was most likely what it was until yrs. later. Also, gas builds up, and since they can't burp, you need to open your g-tube to release the air bubble, we did that, and we still do, she is 18 yrs. old now, and has another rare disease called(PPH) Primary Pulmomary Hypertension, which there is no cure. She is dying as I type, slowly. She also has another rare disease named (VCF) Velo-cardio-syndrome, it all made since after I probed the internet back then and found out for myself what my child had, except for the PPH. We were told in 1998 she had it and had 5-6 yrs. at the most to live, and here she is not, age 18, but in and out of hospital is not a great way to live, and bed-ridden and so short of breath from the PPH. It's a lonely world for some, us included. If I can ever be of help, let me know. I hope you'll look up the CVS, and I wish I'd known what it was when she was so tiny and trying to vomit, but couldn't, but letting some of her food, liquid out of her stoma will help, at least it did for our child, like when we feel ill, if we couldn't vomit it up, how awful, that's what our children are feeling, so let them burp through the   stoma. I do want to tell you that( Phenergen sp.?) helped .  But again, it would last for a week, no joke, then go away for a few days, then come back and start all over again, sounds like CVS to me, there are people out there to help you. Hope this helps abit.

[patient915]

I hope things improve for him soon!

[cbarney12]

I really appreciate your advice and info! We're in the middle of another retching episode. He's been doing it since yesterday. Although he does have a respiratory infection and I think the congestion is causing irritation. But, it's the same song and dance. One week fine, one week not... We're going up to Children's Hospital of Philly in Aug, so I'm hopeful they'll provide some answers.

[patient915]

Nope, it's not considered a surgery if you already have a G tube.  It is usually done in interventional radiology where the doctor removes the G tube and then feeds the new tube into the jejunum (middle part of the small intestine).  They use the same stoma as the G tube.  The main disadvantage is that you can't change a GJ tube at home like you can with a G tube; it has to be done in interventional radiology.  They will usually give some sedation to make the patient comfortable so that they can easily do the procedure, but it can also be done without any sedation (my IR doc argues that it is a painless procedure, but he is wrong).  I have a GJ tube so let me know if you have any questions about it.

[cbarney12]

I will ask my doctor, thanks! She (my ped) did bring that up yesterday when we spoke on the phone. I didn't ask what type of procedure it is. Do you know if it's considered a surgery? Thanks again for responding.

[patient915]

Welcome to the gastroenterology community!  I would recommend talking to your doctor about having his G tube changed to a GJ tube, so see if that helps the retching.