also don't know what to do next

[Anonymous]

I didn’t know where to post this… and ‘help!!!” expresses my feelings the best at this point.
just when i thought the spit-ups couldn’t get any bigger they doubled in size and quantity. Finn has had slow weight gain since birth. He’s gained only just under 5 pounds in 4 months. I’m always worried about it and wondering why he has trouble gaining weight when I read about so many of your babies who have severe reflux but no problem with weight gain(?)

I’ve been on TED for a week and off of prevacid solutabs for 5 days. I definitely saw a difference after stopping the solutabs–for the better in that finn started moving his bowels more frequently and the grunting is pretty much gone.
However the reflux and reflux pain seems to have gotten worse (although my husband says that he had this pain while on the solutabs too…I think he was having intestinal rather than esophogeal pain at that point). We asked for a switch to the capsules and got it but the GI wouldn’t increase the dose to 30 mg/day…despite my fax and the marci-kids info. I tried 30mg/day while on solutabs and didn’t notice much, but I think this was due to the solutab reaction.
I’m waiting on caracream. I have called the phone number listed on the caracream forum and left messages, but no one has called me back. I’m reluctant to do the meds with the whole 2 1/2 hour wait to eat thing…b/c we experienced A LOT of screaming and discomfort with that last time.
As it is, he is barely sleeping. I was up literally every hour last night with him and he’s been doing a stint in the middle of the night where he’s awake for 2 hours straight. We’re all exhausted.
I’m wondering what to do next… new doctor? hope that TED starts to work?
Thanks for reading this far– I really do appreciate having a place to talk to people who know what I am experiencing!

[hellbennt]

I feel for you! sounds like your lo needs to be medicated AND for you to do complete TED…unfortunately it all takes time- 2 weeks of being on the PPI and a good 3 weeks of the TED…once things are more under control, then I would revisit taking baby off of meds…

perhaps things got better grunting wise ,etc bcse of the TED not bcse you stopped the meds? something to consider? I just don’t know…

I would fax dr for prescription of zantac. maybe go to pharmacist first so you have some facts when you request 10mgs per kilo. read here:

Zantac dosing- my/other’s question (has axid dose too): https://www.infantreflux.org/forum/forum_posts.asp?TID=9539&PID=82914#82914

while you’re at it, you might also request carafate. this is a “quick fix”- it’s not a long-term medication/solution- it coats the esophogus and helps it heal- think of it as a ‘teflon’ coating (it is NOT teflon! I’m trying to make an analogy)

you might also ask for a Swallow Study if you think there’s any chance with all of the spitting up for some to make it’s way into the lungs? aspiration? do you hear coughing/gasping? regardless, it might be a helpful test?

I hope more chime in…

hellbennt2008-09-21 12:34:22

[Anonymous]

I am so sorry that things are not going well!! I don’t know why Finn would be spitting up more now or why he has trouble gaining. I did just notice, though, that he’s right at 4 months old, and that is when we noticed a huge increase in Nathan’s spitting up. I had previously read on here from other moms that this is not uncommon at that age, but I didn’t really believe it til it happened to us 🙂 There was no other explanation (I had been on TED for awhile, no new foods had recently been added in, no med changes, etc.) Nathan was kinda slow to gain weight, but not as much as Finn. Are there any signs of a feeding aversion? Maybe once you get the intolerances and reflux pain under control, he’ll eat more? I’m sorry I’m not much help.

I would agree, though, that I would start the capsules ASAP, even though the timing is a pain in the butt. It will be so worth it once the pain is under control, and the timing gets to be pretty routine. But anyway, at least the PPI would be back in his system when the caracream arrives. And I’d definitely shop around (I know, it’s so hard with a screaming baby) for a new doctor. We had to change 3 times before finding one who was familiar with the fact that babies need high PPI doses for relief, and Nathan showed almost zero improvement with the lower doses. Have you checked the stickied post under the Physicians forum to see if a doc closeby has been recommended?

Hang in there!!!! Good luck!!!!

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