Does anyone have a child dx with gastroparesis after nissen,pyloroplasty,and gastrostomy proceedures?

Jennifer - posted on 10/09/2010 ( 13 moms have responded )

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My 10 yr old was 27 week preemie at 1lb 7oz, he had GERD, constantly had problem with feeding him... he would gag,projectile vomit, wretch, around almost 3yrs he was dx failure to thrive, put on hospital, (17lbs). They said he had pyloric stenosis. He was too frail to perform surgery due to his weight. So we went months with NGtube, medications. So we had the surgery of pyloroplasty, nissen-funloplication, and gastrostomy. The gastrostomy would only be done with nissen. I was told that eventually he would be weened off feedings by pump and go to bolus feedings. I always told doctors he was not tolerating the bolus feedings and he would still throw up (post-op). I think they thought i was exaggerating the retching, vomiting, and gaging continued. Over the yrs I told them, they would just decrease volume rate during feedings. His symptoms were worse post surgery. We kept him on feeding pump.

At 9 yrs old he was diagnosed with gastroparesis. He still has the nissen, even though he is unable to throw up or burp now he still retches, gags, has pain in his stomach after eating.
I think that if they just performed the pyloroplasty that they would be able to determine if the pyloric stenosis is what was forcing his food to come up and not reflux.( if food was unable to pass through stomach, of coarse the esophogus is not going to be able to hold it down, if it was allowed to flow then the pressure would not be on esophogus)

I am wondering if he even needs the nissen. Has anyone ever requested nissen be reversed? If so did the child improve?

I have a GI appointment coming up soon and would like some advice. Thank you.

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13 Comments

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Tammie - posted on 10/13/2010

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My son is only 2 but the exact same thing happened with him. He had his nissen/pyloroplasty/g-tube placement last september. He had pyloric stenosis at 6 weeks old and now has had 5 pyloric surgeries because it keeps inflaming back up. He also had severe gastroparesis as an infant so they thought the pyloroplasty would help that as well. well after the surgery he would still gag and wretch (for about 7 months, now he just vomits) He had another nuclear scan and it showed that his stomach is still moderately delayed for emptying. We are also facing if we should fix the Nissen since his is loose! Erythomycin has helped but not as well as I think it used to, but I refuse to use Reglan. I wish you luck with the side effects of that!

Monique - posted on 10/12/2010

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Well my son had a similar situation as urs. He is also a 10yr old ex 32 wker and had the nissen fundo with g tube.He did eventually "graduate" to regular feedings BUT we still have ALOT of foods issues with him as well as HE DOES STILL vomit but not b/c of GERD although he's still on the meds.Not sure if I helped or not but know I understand ur frustration.Just te other day he told me he saw red stuff in BM and has had stomach pains on and off

Iridescent - posted on 10/09/2010

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Exactly! So many staff is just unaware, in all settings. The BARD and Microvasive must be placed identically. I'll link a video to changing out the AMT one. We LOVE it!

Jennifer - posted on 10/09/2010

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I had to place my sons BARD, ER staff did notknow how to, it is placed by stretching it on the metal rod and forcing it in.... it was a few months ago, and he is 10yrs old! It has no balloon and only way to remove is inserting the metal rod. It does not have interlock.....so it does slideout often. I do like the fact I dont have to worry when he is at school.

Iridescent - posted on 10/09/2010

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MicKey is a simple balloon style that has an interlock. AMT has their own identical type, balloon, interlock, higher quality silicone so less granulation tissue as a result and less breakage by far. The extensions between the two (not bolus, but the right angle) are actually interchangeable! Those are the only two types of balloon buttons I know of (g-tube, there are j-tube as well, AMT and not sure what other brands).

Non balloon buttons.
Bard. Can't remember if it has an interlock or not (thinking it does, possibly compatible with MicKey and AMT?). Painful to place and remove/change, but done so rarely it helps offset that downside.

Microvasive. HORRIBLE! No interlock, just a lego type peg you press in and the kid pulls out at random, and they slide out by themselves as they get worn. To remove, they just grab and pull on it until it comes out, causing TERRIBLE bruising! I cried so hard, and nearly vomited on my daughter for that experience, then had to go sit down to prevent fainting. It's placed with a metal rod and is also horrible, but not as bad as removing.

AMT - a few types. Best of the bunch is the Mini ONE Capsule Non-Balloon. The rest are placed and removed similarly to the Bard and Microvasive, although they come with a device to stretch it so the removal is nowhere near as traumatic. The Capsule type is wrapped and surrounded with a gel capsule, same stuff as a gelcap! The size is very little larger than the peg portion of the tube that sits in the stoma when it's wrapped. It gets placed the same as a MicKey, really, just put on KY and push it in. From there it's a tad different - you pull a string to release the capsule, then turn and remove a peg to expand the ball, and done! To remove, it comes with a device that fits within and stretches it out, and makes it so small, again very slightly larger than the stoma peg. I love it. It's lower profile than the MicKey, but slightly higher than the Microvasive and Bard.

Jennifer - posted on 10/09/2010

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My only experience has been MicKey and Bard...those are the only ones my son has had for the past 7yrs.... what are the other gtubes out there?



I have had frequent MicKey tubes that were backup....and would have a leak in them when I would take them from the box.

Iridescent - posted on 10/09/2010

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Same here. It was horrible. The last time one came out, the entire balloon was actually still intact! Her stoma closed during her nap and by the time we saw, it was too late. We got a catheter in at the ER and dilated it a little, but not enough, only to 10Fr with a caude tip (metal). That held just barely long enough for us to get to the other hospital that could treat her, 4 hours from home, and her belly literally shot that out when the doctor tried to look. Before that, the balloons kept popping, sometimes only a week after placing. We thought it was because quality of them has declined (and it may be the case, the company admitted there has been a significant difference since moving their manufacturing plant to Mexico 2 years ago). But it doesn't explain why her body shot out good buttons. So the GI is guessing the site in her stomach is actually in her pyloric sphincter now, so she'll never be appropriate to use a balloon button for again except as very short term in an emergency. We got a Microvasive for 3 months, and hated it terribly but it was all they had in stock. Then went to an AMT, which was supposed to last 12 months minimum. It lasted 5.5. It was just replaced in September and the company requested we send our defective one to them to find out what was wrong with it; I suspect it might be her medications, as they're very toxic, and simply hope the replacement lasts longer. I LOVED how the last time it was changed (AMT to AMT) she had pain, but nothing so bad as with the Microvasive! She didn't bruise across her entire abdomen this time, either. Things like that hurt me quite a bit, as well as her.

Jennifer - posted on 10/09/2010

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I have had so many issues with MicKey....when I put the Bard in....I didnt have any issues of balloons popping....it gives me a little relief when he goes to school.

Iridescent - posted on 10/09/2010

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I can relate to the feeding tube issues. We now have spares of AMT Mini ONE Capsule Non-balloon and MicKey, and after seeing the surgeon sit and READ before doing it (yea, he does it all the time, does he?) I'll just do it myself next time. I no longer trust hospitals to have the spare supply we need, and unless it's an immediate need, we're not going to MicKey again.

Jennifer - posted on 10/09/2010

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He has already had a pyloroplasty at the same time the nissen and gastrostomy was performed...I think since this is a new doctor.... I am going to request the option of the jtube again. Right now he has a BARD, mickey came out while out of town, baloon ruptured.... went to er and they only had bard....(they didnt know how to put it in....and asked if i did.... i said i didnt but i can try....and they let me do it with the nurse watching me!....Later got a bill!) Fortunatley I did it correctly..after reading the inserts...(I have a degree in surgical technology may have helped) and it is ok now. Thank you again.

Iridescent - posted on 10/09/2010

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I'm so sorry that you are already dealing with the effects of Reglan. Those warnings have been out for many years (at LEAST 12, when I started working in the medical field and we were required to do frequent TD tests and monitor new movements with this medication), and your doctors should have known better and informed you. I hope there is something they can do to lessen the effects he has as a result.

Even with the risk of the j-tube migrating back into the stomach, it would at least give you a few weeks to see if it's appropriate (migration usually occurs after at least a month, for "quick" ones, and for some it never does). Even if it migrates, it's simply feeding into his stomach, which is being done anyway. So what's it hurt? At least that's my view on it. You'd at least know prior to doing a drastic surgery for specific j-tube placement or pyloroplasty if it would even help.

Jennifer - posted on 10/09/2010

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Thank you. My son currently has a possible condition caused by Reglan. We have a appointment soon with neurologist that specializes in movement disorders. I was never aware of long term effects of this medication....if i was informed I would have never given this to him. He was given Reglan in NICU as infant until 10 months old, then pediatrician realized all his rigidity irritation and crying was due to Reglan. He took him off. When he was about 2-3 having weight issues and dx with failure to thrive, he was sent home with ngtube and Reglan until he was healthy enough to perform the surgeries. He took it for 9 months.... it was horrible but I was told it was necessary. He had surgeries..... continued on Reglan. Im not sure when we stoped but it was years afterward. Last yr he had testing to see why he still continued to have problems...tests came back he had gastroparesis, so we stoped all tube feedings and dr gave him reglan for 3 months. During the 3 months FDA issued black box labeling...when i went back to gi doc he said that his weight did not increase but he didnt loose any so it may benifit him.... he advised me of the problems reglan can cause and I told him I didnt want to give it to him. During the 3 months i did read about jtubes....I asked the doctor and he said he wouldnt reccommend it because he already has gtube and the long jtubes did not keep placement most of the time. So he prescribed erythomycin and there was no improvment..... We recently moved to another state and We have an appointment with another ped gi.... My son has had the same GI doctor since birth.

Iridescent - posted on 10/09/2010

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This is a common issue, and there are two facebook pages for feeding tubes that address this specifically. The more active group is http://www.facebook.com/permalink.php?st...!/group.php?gid=7861746969 - Children With Feeding Tubes - pic of a little girl. The other has a lot of the same members, pic of a boy, a bit slower, http://www.facebook.com/permalink.php?st...!/group.php?gid=30165675616 - My child has a feeding tube.

While I can't answer a lot of your questions, I can ask a few. Have they ever checked his dumping rate from his stomach? How was he given the diagnosis of gastroparesis? I am sure it's correct, but depending on the tests (or if it's just based on symptoms) they may be able to do more than just surgery to help. Some have slow motility, some have NO motility. Meds like erythromycin (NOT Reglan! Side effects are terrible and last forever often!) can speed the rate if it's just slow. Has that ever been tried? Also, have they ever tried to put a j-tube in and do continuous feeds to see if it eliminates his symptoms? There are long j-tubes that can go directly into the g-tube stoma, no surgery required, still a button.