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M&LMom 10-03-2012 10:03 PM

I hate reflux.
The cool new drug to try around here for tube fed kids is Elavil. Supposed to work on the pain receptors in the gut or something like that? Anyone try it? My DD's feeding team keeps talking about it, but then the gi docs give it a wave of their hand and want to try the same drugs that did not help the last three times we tried them! We have done a blended diet for the last two years, and she is just not growing. So I broke down and tried the formula they were pushing on us. I immediately regret that decision. :) Hello, daily retching! Anyway, let me know if anybody has the miracle cure! I got sucked into vitamin Shoppe. Currently trying aloe vera water for the heck of it. Pretty sure it's also not the miracle cure. Sounds soothing though, right? :)

mekat 10-03-2012 11:17 PM

Re: I hate reflux.
Interesting about the Elevil. I have heard nothing about it to be honest. I'm sorry, I know it sucks. There really is no good way to determine how to treat GI kiddos. They treat them with what is most probable to help them but if they have complex problems their bodies do not always react the way the doctor thinks it should. As for pain, we use a combination of Motrin, Carafate and Tylenol with Codeine to manage gut pain.

Yes, sometimes you can't win. I weaned ds off of Reglan in March because of how well he was doing and now it seems the medical repercussions from taking him off his motility meds are going to be severe. I have put him back on Reglan but we can't stop his rectal bleeding. He keeps bleeding from the slightest strain and I might have to have a surgeon remove the rest of his anus (already disconnected since he has a colostomy). I could cry my son is probably going to lose a piece of his body and put through inpatient surgery because of a decision I made. We are still working on sorting things out but the bleeding has been going on for 6 weeks with occasional skipped day here or there.

M&LMom 10-04-2012 09:05 AM

That sounds super frustrating. I hope your team can find a way to avoid the surgery. These meds are heavy stuff and it stresses me out to think about it all.

luvsviola 10-06-2012 04:42 PM

We avoided surgery with a GJ. We feed through the J and put a tube with a catheter bag attached to drain the G side, which keeps the tummy empty, so there is not anything to reflux up.

We were opposed to a Nissen. We had several friends with major complications from theirs. Plus, DS is from a family of substance abuse addicts. Him being drunk and not being able to vomit later in life was a very real concern to me.

Luckily, our Developmental Ped avoids them at all possible costs. They do the GJ with a drain most of the time instead. You put the j in while kiddo is awake in radiology and it is minimally invasive. DS got his at 18 months and had weaned off the drain while he was awake by 2.5 years old, and while askeep by 3. He only needs it when he is sick now at 3.5 years old.

I would beg your GI/Dev. Ped to do a trial with a J. It is non-invasive to put it in. You go to Radiology, a radiologist does this magic thing of snaking it down into the intestines first with a wire, then with the tube (they use your current G hole, so if it doesn't work, you just pull it out and do a button change just like you would at home).

What formula are you on? DS did great on Elecare, and now in Peptamin Jr.

DS had a major reaction to Reglan. He still has tremors from it.

We are down to 15 mg of Prilosec and no motility aids now.

M&LMom 10-07-2012 08:44 PM

Around here the docs almost automatically do a fundo with the g-tube. I hate her fundo and I wish it would just bust open already. We tried Compleat for a week but she just can't tolerate it. So we're back to the blended diet. My dh and I are totally disagreeing with everything to do with her feeding also. That is stressful. I think it's a problem that she has been gaining and losing the same 3 pounds for two years, he thinks she will just grow someday. And he is anti formula. The ingredient list really supports his case when the first two ingredients are water and corn syrup! I would hate to get a j-tube cuz that would mean back to the pump. And honestly, I didn't see a difference with reflux when we went from continuous to bolus feeds so I would like to stay with bolus. Will def. stay away from reglan, though! I feel like the gi docs here just accept that reflux is a part of life and aren't very proactive with fixing it. I hate that I hate feeding my kid!

M&LMom 10-07-2012 08:51 PM

PS, I found a great exchange site on facebook-just called medical supply exchange. I got some Duocal ffs and gave away all the extension tubes that were the wrong size for us. I still have an entralite infinity pump, backpack and charger. We haven't used it for 2 years and I know there are lots of people who are desperate for one of these. Let me know if any of you great ladies would want it ffs. I promise I'm not committing insurance fraud-I'd put it on eBay for $200 if I had no morals! :)

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