Thumbs down pediatric GI

[Anonymous]

Another update since I get the very best info from here! We had our Nicu developmental clinic yesterday. Apparently BOTH babies (who have yet to make it on to the charts) are falling off their curves in beight and weight (but not head circumference). Iwas given a couple different options, but right now I am looking at switching them to nutramigen aa mixed to 24 cal for a two week trial. I have called the lc I previously worked with to see what her thoughts were on it. The other option was to give them 2 bottles of the formula each a day and cut out more stuff. I was consideringbTED, but I am leaning towards not. I am already miserable and struggling with food with just the dairy and soy elimination…I can’t imagine giving up even more. My concern is to get these babies to start gaining weight… Their poop has never gotten better, even after strictly cutting dairy and soy, it is still green mucus and stinky. I have been thinking additional food intolerance, but until yesterday, I could not get a doctor on board. Well yesterday I did..he is the neonatologist as the nicu and not the normal led or the pediatric GI. I think the formula switch is a good choice, considering I am not willing to do TED anymore (maybe in would have a few months ago back when I wasn’t fearful of my children wasting away). Is this reasonable? Is there something I am not seeing or haven’t considered?

[Anonymous]

(I have yet to hear back from the lc. I never tried the thickened formula either)

[Anonymous]

Thank you for the update! You can read here about another mom’s debate on whether to go on the TED or not and what she found to help other than TED…

https://www.infantreflux.org/forum/forum_posts.asp?TID=15293&PN=1

[hellbennt]

how is everything?

I was away, but I’m back

[Anonymous]

Thanks for asking! They have been on the puramino (formerly nutramigenaas) for a little over a week and it is going pretty well. I hav

e been weighing them here and tthey also had an official weight check at the pediatricians office a couple days ago and according to both, they are finally gaining weight at a reasonable clip. I have been pumping a couple times a day because I am still not 100%sure I want to be done breastfeeding. Their poop is looking more normal than it has looked ever, despite it being a weird color. They seem happier than they ever have also. It is sort of amazing to see how well they are doing. It is very depressing though b/c it is coming from a can and not me….but no matter how many times I come back to it, I don’t think I can eliminate more from my diet…I want to be determined enough to be able to, but realistically I don’t think it would work with my family. It is really hard to get my head around though because I am.a firm believer in breastfeeding and I never thought I would see myself in a position where I am choosing to quit.

I am trying to get the formula covered by my insurance, who will cover it as long as it is medically indicated. The original doctor that gave it to us (their neonatologist) has not called back so I am trying to go through their per (who has been practicing for 40+years and yet had no idea breastfeeding babies could have intolerances like this..insert incredulous look!)..I called their GI today (I don’t know why I didn’t think of it before today) a d he said he agreed with this course of action and they will also help me with the insurance if the PEDs office is as useless as they have been so far. The PEDs office wants me to go on wic and call it good. I got into an argument earlier with the nurse about why I want them to go through my insurance (because I pay for it and it should be covered). I am a frustrated mess of a person, but I am happy that the girls seem to be doing well finally.

I am in the processmichelle9972013-08-01 15:31:03

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