She retches daily. Mornings are her worst times, she wakes up retching and choking and will do so until she manages to throw up past the (loose but still intact) fundo. She will retch up gobs of phlem and yuck.
For some reason, it's gotten worse lately. She retches more than normal, and is excessivly drooly. She's not normally a drooler, even though she does have low muscle tone around her mouth. She is now retching hard enough to throw up at least one full feed a day. Not good when you're trying to get her to gain some weight!
I woke up at 2:00 am today to the sound of her retching and screaming. I went in to comfort her and give her more sleepy meds. How totally helpless I feel at these times. She looks at me with those beautiful eyes of hers and just begs me wordlessly to make it better. I can't. The reflux monster is bigger than I am.
I am worried about her recovering from the Mitrofanoff surgery, which takes place on her stomach, when she retches so much. I remember throwing up after my c-section and thinking I was going to split open and die. I can't imagine how she's going to recover while retching constantly. The urologist says to talk to the GI. So I am putting in a call this morning, but I know the answer is "We've never found a way to stop her retching, I don't think there's anything more we can do".
Poor Peanut. I wish I could take it all away!
What do you guys do for retching in your post-fundo (or even non-fundo!) kids? She is on nortriptaline for it, neurontin for gut hypersensitivity, and periactin for it as well. Without any one of these she is even worse, but none of them is the cure. What does YOUR kid take for retching and gagging? I am desperate at this point for anything!
7 comments:
I wish that I had the answer! This is a serious problem of Gavin's as well! I hate to look at him gagging and wretching, like you said, their eyes are wide and they are struggling so much, it's so sad to watch and not be able to do anything about it! UGH!
If you ever find the "magic cure", please let me know! HUGS!!!
Oh I wish I had an answer, Jax does so much better with the nissen. But we kept him on zantac and that helps him with the gagging. But it sounds like hers is much worse so I don't know if zantac will help. Does she eat by mouth? If not, a GJ tube might help. The only bad thing about that is you have to run continous feeds.
I too wish I had the answer for you. Marissa only retches, gags and throws up every once in a while. It is more a product of her having the trach because it sometimes tickles her throat. She does not have a nissen but we did consider it for a while when her throwing up was worse. She is pretty much past it now.
I know how desperate we were feeling for a while there and you are going through so much more with Peanut. I am so sorry you are both having to deal with this and I pray it resolves soon.
Thanks ladies! She is on Prevacid and Erythromiacin for reflux, so I don't think Zantac would help. :( We have tried GJ feeds, but her motility is so slow that the J-feeds had to run almost 24 hours a day to keep her comfortable. And she still retched, and managed to get the j portion up into her stomach almost daily. Trips to the ER to have it replaced in radiology almost daily!
I wish there were an easy answer. Boo!
I have no advice... just know that I'm thinking about you and praying for you.
Are you doing the blended diet now, or formula? I had heard that those more concentrated tube formulas (30 cal/oz) really create a need for more free water, and for sure it seems like when we give solids, she needs more water than if she's getting a liquid feeding. I don't know that it's an issue for everyone, but it sure is for our girl.
We sort of figured out accidentally, with Mal's 4 hospitalizations in the winter, that the hospital was the ONLY place where she wasn't retching. I seriously think the difference was extra fluids (when she was on IV fluids PLUS her full milk feedings). I found a "formula" of daily fluid needs per wt, and then a dietician gave me the same formula, so I aim for her goal by her wt. When she was 22 lbs, it calculated to be about 1,000 cc per day! Even though her wt is a little less, I still keep that as her goal. Since she doesn't get that much in feedings, we always have to give water.
How we do it, because she is so volume-sensitive, is we give a bolus of water (hers has to be pedialyte or have sodium added) an hour before each daytime feeding. And sometimes, if we're giving a lot of solids without a lot of fluids, we also add 30 cc or so an hour after feeding is done, but mostly it's the pre-feed water that we focus on. By giving it by itself the hour pre-feed, it's gone from the tummy so quickly that it doesn't make the feeding volume larger.
Totally don't know this would help Peanut, but for Mal the difference has been night and day. First thing in the morning I get 120 cc minimum into her. Sometimes a lot more. It solves a lot of that morning reflux problem. One pedi even told us he thinks she gets herself a bit dehydrated (vomiting doesn't help that) and then has ketones and they make her nauseated. Whatever is the reason, it was a lucky thing to be in the hospital so much this year, to help us figure that out.
She can still get gagging and retching if she gets straining with constipation, though. When you figure that one, please share! I had thought we had it balanced, but nope!!
And each time the retching returns - even if it's only a couple of times - it stresses me out, because it feels like we could go back so easily to those days when it was all the time.
Wow, I didn't mean for it to be so long! Sorry. I wish you had a blog email somewhere. Hint, hint. :)
I was going to say that Alex/Jessica were the first ones who got me thinking about fluids, but it just took me longer to figure out how important it was for Mallorie. I think she also got a huge fluid goal given to her for Alex, with lots of free water.
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