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Preemies
**Preemie Parent & TriciaJoy**
::butting in::
Debbie, I'm so sorry you had that said to you by another dietitian. THey
must not have known your whole story, or about your mom, to have said
something like that. It's a real kick in the gut when we have to
encounter these situations with people about our kids, especially when
we know that we've had recent successes.
It is scary how we can all live these parallel lives and the doctors don't have a clue (or if they're my docs they don't even seem to care) about how to help these kids manage this pain. Tricia, I swear that I could write your post above too, but with less oral feedings. Both my guys are puking in their sleep, but mostly Evan has it the worst. Cameron deals better with the pain I think.
They keep saying they grow out of this but I spend my days and nights obessing on how this is even possible when the heaving and pain are a viscious cycle.
Question for you both: Evan is going back to arching his back in pain from the reflux and shaking his head from side to side, especially because of this vomit virus they think he has. I think they just told me that because they don't want to see us until our scheduled appointment. He's almost 17lbs and is much stronger so holding him when he's like this is getting difficult and I often have to put him down which upsets him even more. They wont increase the Prevacid but we've added Carafate and are adding back the Zantac in the middle of the day. Also, I'm giving Tylenol because he's still teething. I just don't know what else to do for my little guy. Any suggestions?This discussion has been closed.
Re: **Preemie Parent & TriciaJoy**
Laura - I hate your GI docs with a passion. And they aren't even mine. Can you go elsewhere? Like a different state or something? You and your little guys deserve so much better.
That sucks about the Prevacid dose not being increased. You could try giving him the 1/2 tab with 7.5 mls of water. I think you said you use 4 or something now, right? That might end up giving all of the little granuals of the tab which might help a little.
I would also videotape Evan during his reflux episodes and then bring it in for the docs to watch. Perhaps they are thinking you are just exaggerating. If they see how much pain and discomfort he is truly in than maybe they will up the dosage. Or come up with some other idea.
Is he doing the arching, etc. all day or just at certain times/positions? How many hours is he off the pump? Could it be rate related? Could you go longer and reduce the rate to see if that helps? Of course if he is already on 22 hours than you don't really any wiggle room. Or if he does better in the afternoon (strictly as an example) could you bump the rate up by a couple of mls and then reduce for the times when he is at his worst? Olivia's reflux is very rate sensitive. I can go up by just 5mls and she will be 100 times worse. She also tends to reflux worse at her morning feed and less at her noon feed.
What formula are they on now? Since they are now one you do have other options available that perhaps might help. Olivia is on Peptamin Jr. now which is easier to digest. Maybe something like that would help. I don't know all of that relates with a GJ tube but that was the only other thing I could think of. If you want to try something like that (and your docs won't write a prescription), let me know. I can send you some cans to see if it works.
Big hugs all around.
We are currently giving Prevacid 1/2 tab of 15mlg 2x a day with 8mls of water because it clogs in his tube regularly. I think the opening of the G tube is pressed against the wall of his stomach and that in the morning it's worse because he's been laying down more. But the vomiting and heaving are worse in the morning when my DH gives them their meds, though for Evan recently it doesn't seem to matter what time of day it is.
They are on Neocate at 30cal and it goes directly into the Jejunum bypassing the stomach completely. They get 4 hours off the pump a day and it takes them 3 of those hours to feel hungry and be willing to eat by mouth. Since he has this "virus" he's been vomiting more and tht is definately what's causing the increased pain and arching. Evan's pump was set to 39mls/hr but we bumped it back to 38 and tonight if he's still having issues I will switch him to straight Pedialite at 27mls/hr for the night.
I have a call in to a chiropractor because my friend Sweater on the Multiples board has had some great success with it and I'm desperate to try anything. My DH thinks it is a waste of time and money but I am running out of ideas.
Laura- that doesn't seem like enough prevacid. Robbie's 11 1/2lb and getting more than that. (He gets a pill and a half, total. I give him half in the morning and a whole at night.)
The boys weigh WAY more than Robbie. Have you looked at the Marci kids guidelines for dosing?
https://www.marci-kids.com/dosing.html
I think you said they were around 17 pounds, so that'd be about 7.75kilo, so their dosing guidelines for Prevacid would be 15-30mg/day. They're getting 15, obviously, but I would think with reflux as bad as theirs, they'd want to be on the high side of that. Robbie's dose actually exceeds that. (he's getting more like 1.3/kilo 3x/day)
I think I'm with Debbie. I hate your GI. Hell, I hate MY GI, but I hate yours more.
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Well bummer. I was hoping I would have something useful to offer. Hmm. Back to the drawing board.
I do have one thought about the gtube. I read a blog about a little girl who was having terrible pain from her gtube. Apparently when she grew it caused the tube to rub against her ribs. Anyway - to help with the issue they used gauze and tape to position it for the least amount of pain. Is that something you could do/try? Maybe if you tape it so that it is a bit more of an angle it won't rub as much? If you think that would work I think I still have the precut gauze and tape I could send you.
Re: formula. So I know it bypasses the stomach but does the digestability (I think I just made up a word) of formula still cause adverse affects through the gut? I'll have to ask my mom. If it did than you might want to ask about other formula options. Maybe that would help?
BTW - So I tried yogurt down Olivia's tube today. I took one Yo Baby cup and blended it with 50 ccs of water. It worked great (so far). Assuming she doesn't have any adverse reactions than I'm going to keep doing that once a day for a week. Then I will try some baby food. Because you have to dilute it so much I don't think I could put her on a total "real food" blenderized diet but this may be the way to add extra calories.
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Tricia - it's amazing but I have never seen this website. I will print it out and take it to my craptastic GI.
PP - His tube is recently been inexplicably very tight against his skin and could very well be rubbing him wrong, and may always have been rubbing him wrong. I will try to move it the next chance I get and I will maybe see if I can even pull it out just the tiniest bit so that it's away from his skin a little more like it used to be.
Thanks guys! ((hugs))
Laura - is it a mic-key button? Maybe you need a bigger size? How much weight have the boys put on since the first one was put in? That could be why it's rubbing so much. You could also try checking to see how much water is in the balloon. If there is more than 5mls you could try going down to 5 to see if that helps. And if it's not a mic-key button than never mind.
Tricia - yes you can dilute with something else. Since Olivia is older I may try milk or juice once she gets used to the yogurt. I was totally thinking of Robbie the whole time. You can use baby food as well - stage 1. It might be too early to try but maybe not? I don't know.
PP - It's not a McKey button yet, we schedule that proceedure next week. But I think you may have a point that he might have out grown his current tube, but then Cameron should be even worse because he's even bigger. I think it's just not in the right position. I will check the water in the balloon, maybe it needs to have a little less.
I try to evision our kids running around with food in their hands and mouths laughing and playing like other kids their age.
It will happen. It will happen. It will happen. Right?
Someday. Someday. Someday.
I also think it sounds like he may have outgrown it. And just because they're different sizes doesn't NECESSARILY mean anything.. it's about how thick their abdominal wall is.. if one carries more weight in his gut than the other, it would lay differently. Hopefully when you get the mickey, it'll be better.
PP- for now I'm going to hold off on it. I'm really hoping that my giving up corn syrup will help things. We did have a *slightly* better day today. He has only spit up twice and it wasn't just huge amounts.. hopefully as the stuff gets out of my system and then his, maybe it'll get better. *I say skeptically but hopefully*
But that is something to consider. He sure as hell isn't EATING much solids. I tried peaches today. That was an utter failure. He had peaches from his eyelids to his knees but I don't think I got so much as one spoonful in his mouth.
Though he did "eat" (read: chewed up and spit out) almost a whole wagon wheel tonight. he's teething AGAIN (I swear I can feel the sucker under his gums this time. It's got to pop through eventually, right?) so he's really chewing on everything at this point.
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