Please HELP! I'm at wits end.

[Anonymous]

I posted something in other parts of the forum about my LO. I’ll paste that bit here for a brief history:

My baby is 5 months old. She has had silent reflux since she was a week old. She tried and got sick from every formula basically. We had her on a formula from Ireland that seemed to work for a few months, but at around 4 months, her reflux went berserk and she couldn’t handle formula well at all. She has always had minor facial rashes, flushing, and eczema on her face and diaper rash that never went away. That all got worse with any infant formula I tried her on that was made in the US.

She also coughed and sneezed all the time. She went from being a comfort feeder to a bottle refuser and she’s already small for her size as is.

She went from silent refluxing to full on vomiting.

Anyway, we took her to her GI who suggested that she had a DHA/ARA allergy as well as allergies to preservatives, so we kept her on the Irish formula, but she was still refusing bottles, still having terrible reflux and her facial rash and eczema seemed steady. We tried homemade goats milk formula, and that was worse. She was refluxing like crazy.

So we took her to an allergist who put her on Neocate Jr unflavored last week because everything was broken down and it contained no dha. we dilute it to the 20 calorie dilution. She did skin testing on her, but found no allergies. After putting her on Neocate Jr, she began to do much better, but no matter how much I thickened her feeds, she would still spit up a lot and seem like she was in pain. Her ped tripled her dose of omeprazole, but i’m not sure that’s helping her appetite.

Anyway, we ran out of neocate jr while waiting for Wic to okay her on the formula. They also said they needed to special order it since it was such a ‘weird situation.’ So we ended up buying a case of Elecare Jr unflavored because it was cheap on EBay just until we got the neocate jr. Her allergist ok’d it. She seems even better on the elecare and seems to spit up a lot less so far, but she’s only been on it a day.

So i guess my question now is what are your thoughts and experiences with both formulas? Can anyone tell me if this is too good to be true? I’d hate to annoy wic and the allergist again by asking for the elecare jr just to find out that she’s gone back to not wanting to eat much anymore.

Also, is there a difference between intolerances and allergies? Like medically? it seems like people use the terms milk/soy intolerance interchangeably with Milk Soy allergy. I’m just a bit confused since they tested her for 10 food allergies and she was negative for all of them, but still seemed like she was allergic to something.

Update from today:

She’s generally a very happy and quiet baby, but she’s become very uncomfortable, irritable, fussy, and she looks like she’s in a lot of pain. She doesn’t have a fever, so I don’t think that she’s sick. She’s been this way for the past month anyway. No blood in her stools and no more mucus in her stools thank goodness, but I don’t know. I’m just really worried about her.

Her allergist and dietician seem to disagree as to how to handle the thickening. The allergist thinks the thicker the better, but the dietician would prefer her to just have normal cereal and not thicken her feeds at all. As for me, I’ve tried it both ways in the past week, and I don’t think the thickening has helped her reflux at all. Not thickening hasn’t been so great either. I know that the omeprazole and the thickening isn’t supposed to stop her from spitting up, but she’s full on vomiting after thickening and when she refluxes, burps, or has the hiccups, she’s fussy and looks like she’s hurting.

I’m doing everything that I need to be doing: burping after every oz, giving her medication, keeping her upright, etc, but it’s just not working anymore. There are some things that have gotten a lot better since we’ve switched to the junior formulas, but the reflux… it’s still horrible.

PLEASE HELP!

[hellbennt]

hi & welcome!

you have found a wonderful place to research all you can!

first of all I need to encourage you to PLEASE read the following link- it’s called Groupie Intro

& it’s LONG. However, it TRULY will help you! Read through it, skim through it- you’ll find yourself refering back to it again & again!

https://www.infantreflux.org/forum/forum_posts.asp?TID=853

As you will learn from the link Groupie Intro, many babies seem to plateau on zantac and then need to ‘move on’ to a PPI.

You will also learn that many doctors and even ped GIs don’t know as much as the collected first-hand knowledge found on this site!

the zantac dose can go as high as 10 mgs per kilo. Do NOT just take my word on this! read all you can & make your own, educated decisions!

there’s a link from groupie intro w/ zantac dosing. read the research. then, you may feel comfortable increasing the dose on your own. I can’t tell you what to do!

I *can* tell you that zantac is safe for babies & the dosing I’m quoting comes from the medical field/research.

you’ll also find (I think it’s in there!) a link called probiotics, brands used

if the link is NOT there, go to the upper right-hand corner of this page & click on the search button.

type in those keywords & you’ll find it.

what else? I think I’ve overloaded you enough for now

IF you want to breastfeed your new baby (none of my business!! just saying ‘IF!’) then you will be interested in researching all you can about breastfeeding and MSPI (milk/soy protein intolerance/allergy- sounds like this is what your baby has- you can find links/info from groupie intro). Basically, you can make your milk into an elemental formula! There are many mothers who have succeeded in breastfeeding their reflux, protein-sensitive babies.

One more thing, I promise that’s it

BABYWEARING!

it SAVED us!

look for the link in groupie intro!

SO GLAD YOU FOUND US!

hellbennt2012-12-28 10:34:55

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