Please help with next steps - breastfeeding at major risk - Page 25

[DeChRi]

Laurie, thank you for your post and suggestions. I'll use em. It's 5:45am and I've been up w/ her all night except for 2 hrs when she slept hard. (Luckily my 2 year old was up sick then, lol).

Her reflux was actually very little the last 24 hrs. The first OT was January 28. Yeah, I know. We're on the waiting list.

I just think it has to be something breastmilk related. During the first TED we did some days of just BM in a bottle, same reaction. And she never ever had days like this on Neocate. Ever. Her "bad days" on Neocate were nothing like this. Just none of it makes sense. I think it gut/stomach pain. She hasn't been perfect this week...a few episodes like this but very short, gassier, little more agitated at night. Dr in NE said give it a full 10 days before deciding there will be no fallout, which makes me think it's possible??? But then it goes back to the fact that it just still doesn't seem to walk, talk, act like a food allergy. I tried swaddling her but she was so rigid it was like swaddling a board.

I have no real useful thoughts here other than I'm feeding her neocate right now, I'm exhausted, I'm dreading a birthday dinner w/ my inlaws today that will include them being offended that I can't eat the dinner/cake while thinking I'm in idiot because I'm nursing again while my baby screams. At least my hair will look good. .

[crunchy_mommy]

If your 2yo is sick, is it possible that she has the same thing (with perhaps a different manifestation of symptoms since she is so little?)

[mamafish9]

Originally Posted by DeChRi

Yeah, I'm not thinkin she's constipated. She pooped but it was nothing note worthy. She is in obvious and significant pain and it SUCKS. It's really bad. I'm not sure how far I go until I punt. The eryth does help significantly with her reflux and moving food thru. She's been on it 2 weeks now. I just dunno. But I can hear her stomach gut and it sounds horrible.

If you didn't see much poop, or anything hard/solid with the suppository, she may well still be constipated.

[DeChRi]

ARE YOU KIDDING ME?! So we had surprise birthday party for my Mom yesterday. Just family. Ellie was making the rounds. While discussing what we were gonna do about Ellie, my 11 year old says to me: "do you think it couldn've been the frosting grandma (MIL) let Ellie lick off her finger?" Whatttttttt?!?! Who DOES THAT?! She knows what all we're going through. She is usually very attentive. Maybe just didn't think!? Granted, she thinks I'm looney toons for chasing this, but she isn't the sabatoging kind of person.

So two questions:
1) Could a tiny lick off a finger cause that big off a reaction? 11yo says it was just a tiny residual amount.
2) And if so, how long till that clears her system?

And again, really?!?!

[crunchy_mommy]

OH MAN!!!

The only reason I even suggested that you could have slipped up with the diet is that I just couldn't see how she could have such a strong reaction unless something changed. Yes, that little tiny lick definitely could have been the cause of this huge reaction... What was in the frosting? I'd guess dairy or corn syrup, or both.... or artificial colors/flavors or... I don't know, get the ingredients though so you have those clues!! I would think the worst of it would subside within 12-24 hours but if it was dairy or gluten, could still be small amounts remaining for a couple days & irritating her a bit. Mamafish probably knows better than I would...

WHO ON EARTH gives a little baby frosting (never mind a baby going through what your little Ellie is going through?!?!?) I'm angry for you... And I would definitely let MIL know about her extreme reaction (I'm sure she wasn't trying to deliberately sabatoge you guys but she should still know, might help her to be more 'on guard' next time around!

[mamafish9]

I know it's hard to believe tiny amounts can cause huge reactions, but they definitely can. Some kids on this forum are so sensitive to dairy, for example, that their plate being washed in the dishwasher with a dish that contained dairy causes issues. Or they react to a product made in the same factory as something with gluten, from the tiny amounts picked up from the air/machines.

It can take up to 4 days for a reaction to clear, but I sure hope that isn't the case for Ellie - hope she's feeling better very soon!

[Juvysen]

was it homemade frosting or store bought? If homemade, probably had dairy *and* corn (corn starch in confectioner's sugar). though store-bought may have, too.

BUT... on the plus side... sounds like it's probably not your milk - or at least gives you a good reason to stick with b/f for a while... and may give you a likely suspect for food allergies!

[DeChRi]

She seems to be getting better as day goes on.

It was not homemade, but high end bakery my dad got it at...was white and like a cross between whipped cream/frosting. So guessing corn syrup and dairy at least.

She did poop some more. So I'm staying the course with nursing if things don't get worse again. Honestly, another 1-2 days like last night and I'm hanging it up. But I'm optimistic that it'll keep improving.

I'm so irritated...I made copious amounts of wonderful food for this party w/o so much as a finger lick of sauce...and she gets a finger of frosting, lol.

[eclipse]

Oh god, I'm sure that's totally it. When ds was reacting to dairy, he lost it within minutes after eating a tiny bit of chicken that had a miniscule amount of dairy in the seasonings (we had been assured it didn't - that's when we learned not to take anyone else's word for it!). Now would be the time to sit down and have a serious talk with your family about how you're dealing with potentially serious allergies and she is not to have ANYTHING you don't authorize (not that your dd should be letting any infant lick frosting off their fingers, but I guess it might have seemed like a good idea to an 11 year old ) and that if she gets something by accident that you need to know ASAP. My older kids were younger than that and it was very hard to keep them from feeding him.

[DeChRi]

Jeri- my 11yo TOLD me about it...she saw my MIL give it to her. I'm trying to gather my wits before talking with her. My 11 year old is the food police. and you're right...we need a serious food talk w/ fam.

[eclipse]

Oh, I misread that! I was going to give your dd a pass due to age- but your MIL? She should know better!

[mamafish9]

Originally Posted by DeChRi

She seems to be getting better as day goes on.

It was not homemade, but high end bakery my dad got it at...was white and like a cross between whipped cream/frosting. So guessing corn syrup and dairy at least.

She did poop some more. So I'm staying the course with nursing if things don't get worse again. Honestly, another 1-2 days like last night and I'm hanging it up. But I'm optimistic that it'll keep improving.

I'm so irritated...I made copious amounts of wonderful food for this party w/o so much as a finger lick of sauce...and she gets a finger of frosting, lol.

Three thoughts - first, it sounds like this was a reaction, so you know your DD is VERY sensitive to at least some things. That's good to know, some kids are, some kids aren't. Second, it seems likely the culprit is likely dairy - neocate has lots of corn syrup (not corn protein, but other corn) - so trace amounts likely aren't an issue with corn syrup (although they may be with corn protein). And you may still have small amounts of dairy in your system that are clearing, which may explain some of the shorter episodes you've seen in the past week. Three, if your DD is this sensitive, as you add back foods, you will likely see more days like this . If this is her reaction, be prepared to see it again. I think it's worth it to have her nursing, but it's not going to be fun. And, I'd put up a store of 3-4 days of pumped milk - that way, if she reacts, you can immediately switch to stored "clean" milk, and pump and dump for a couple of days to clear the reacting food out of your system.

Originally Posted by eclipse

Now would be the time to sit down and have a serious talk with your family about how you're dealing with potentially serious allergies and she is not to have ANYTHING you don't authorize (not that your dd should be letting any infant lick frosting off their fingers, but I guess it might have seemed like a good idea to an 11 year old )

It was the MIL, not the 11yo . And grandparents can be harder to train. With our ILs, DH takes point - it's harder for them to brush him off as crazy/over-reacting.

[Juvysen]

unfortunately the neocate won't help with issues like this (where someone's sneaking your baby some food)... and as she gets older more and more people will be trying to sneak her stuff, so it might be just as well to figure out exactly what it is now (via nursing) so she's not getting AS MUCH AS she would when you just let her take a bite of something. I could be way off on that, but letting her nurse a bit when you've had a tiny bite of something and then having "clean" breast milk available for the next few days seems like it'd be less hard on her than just trying her on stuff as she starts on solids, yk?

[ktgrok]

Originally Posted by crunchy_mommy

If your 2yo is sick, is it possible that she has the same thing (with perhaps a different manifestation of symptoms since she is so little?)

i was thinking that too.

[AquariusHome]

First of all I want to say I am so sorry poor little Ellie is going through this, and you too.

Second, definitely you need to convey to all family members how important it is that they not give anything to her unless you have expressly allowed it that day. This problem is not going to go away and will only get worse as she gets older. I don't know why it is so hard for people to not feed babies, but they just seem to be unable to resist the urge. I can't tell you how many times we had similar situations to what you are describing. My mom's boyfriend for some reason absolutely could not stop himself from feeding my dd her triggers. I finally told them I was bringing her over to their house and letting them stay up all night with her the next time it happened and that was finally the end.

Third, there is a silver lining. You have a ton more info now. You know a) she absolutely is reacting to foods. b) She is highly sensitive to something in that frosting, so if you can get ahold of an ingredient list that will be a big step forward.

I'm suspicious of soy. Almost all store bought frosting has partially hydrogenated soybean oil and corn syrup but not milk. If it was made at a bakery it might be dairy based but I still would bet it did have soybean oil. Also, neocate has soybean oil and corn syrup but more refined so that might explain why she was a lot better but still not at baseline on neocate. And soy is hidden in a ton of supplements, so the first TED you did when you kept your supplements may very well have had soy and corn still in your system which would explain why it failed.

As far as hanging up breastfeeding, I totally get the "I never want my baby to feel this way again" thing. But at this point I think you are getting pretty significant information pointing to the conclusion that she has severe allergies or intolerances to probably most if not all of the ingredients in all of your formula options. Remember, it wasn't your milk making her feel this way. She's been doing really well for a week on your milk.

And lastly, can you give more info on the timeline? It sounds like the reaction was pretty quick if MIL gave her frosting some time yesterday and she started reacting yesterday afternoon so that points to a higher likelihood of true IgE allergies vs. IgG intolerances. And that might explain why the poops haven't been an issue since intolerances more often lead to colitis type symptoms but vomiting is a symptoms of IgE allergies.

But regardless, she is obviously extremely sensitive and I think at this point I would plan to stay milk, soy, and corn free for the long term rather than putting her through a trial.

[jenfl]

I'm so sorry you ran into this! I've been there -- my MIL gave my dairy-intolerant DD a lick of frosting at her 1-month party. It takes a while to convince family of the severity of things. It wasn't until my parents were THERE during a reaction before they became as serious about it as we were.

[AquariusHome]

One last point on the benefit of breastfeeding in this situation - if your daughter is in fact reacting to soy or corn there's a good chance it would only be a matter of time before her sensitivity built to the point that she was not able to tolerate Neocate, assuming you switched her back to that. But even if that didn't happen having low levels of your trigger every day like that will make it far less likely she will outgrow the sensitivity. We supplemented my DD with soy formula for 6 months because her major intolerance was to dairy and I couldn't produce enough milk for her and she wouldn't take the hypoallergenic stuff. Now at 3 she still reacts to traces of soy but she is tolerating dairy in breastmilk. So long term the best bet for allowing her to eat normally is breastfeeding while eliminating her triggers.

[gigismom]

I've been lurking this thread and want to offer my support and admiration for your perseverence!! I also have been through much that you are going through with an ultra sensitive kiddo and not so supportive or understanding family members (inlaws). Finally, when they actually saw the reaction for themself they began to believe it and now are extremely diligent about making sure no trace gets into him. I also wanted to second the suggestion as soy as the culprit. It is likely that the frosting had soybean oil. Also, corn in the powdered sugar would cause a reaction for my son where as corn syrup in small doses does not (though we still avoid it). Even though it was super hard in the begining as we were trying to find his triggers and remove them all, I am so relieved that we stuck with bfing as he will nurse into his
3rd birthday next week!

jen

[KimPM]

Originally Posted by DeChRi

It was not homemade, but high end bakery my dad got it at...was white and like a cross between whipped cream/frosting. So guessing corn syrup and dairy at least.

Call the bakery and find out exactly what's in the frosting, so you know what you're chasing.

[DeChRi]

I started replying about 15 times last night, but was totally irrational, lol. So I slept (using that term loosely) on it. Slightly better this morning, but not great.

She was nearly as bad yesterday afternoon, evening and night. Starting late yesterday evening and through the night I gave her Neocate, because I just could not bring myself to nurse.

I am going to be brutally honest here. If someone offered me a formula that was a sure fix, I would jump on it and never look back. Even knowing there may be allergy issues down the road. The toll this is taking on my family and kids is huge. I can't keep experimenting with that kind of fallout. I mean, my 2 year old needs fed and to nap during the day, nevermind things like interacted with. I need sleep. My 11 yr old needs to get to and from activities, and be able to have conversations with me. I can get some outside help, but when Ellie is a mess, I need a 100% of the time extra set of hands. And not knowing what and when that will happen, I can't plan for it.
And even if I can identify it before my children hate me and my husband completely disconnects, I have no idea how well I would do with major long term diet restrictions. Not knowing what is in what. Not being able to go out to eat without major ordeal. I just dont know if I am taking this beating for what will ultimately be a failure. At this point, I can't truly say "there is nothing I would nto do to be able to breastfeed my child". I am at the "there is nothing I will not do to bring comfort to her and peace to my family".

I talked to Dr. NE. She brought up corn as well, given the history. She said she just had her first case of a baby that was solely corn sensitive. And he had symptoms similar to mine. And they chased it and chased it, just the same.

Part of me thinks I should just keep on with the Neocate to back to "Neocate baseline" and go from there. I am truly mortified to nurse her, because I am not sure I can handle another fallout like the last 48 hours.

Laurie - the timeline was that Ellie got a small lick of frosting (DD1 estimates really small, like "much smaller than the size of pencil eraser") sometime between 2:30-3:30pm. She was screaming non-stop until morning with the exception of a 30 min nap at 9pm and 2 hours sleep during the night.

I can convince myself it was all the frosting. But given taht she still had episodes and worse gas and more crying overall, this last week, it also could be that it just took that time for wahtever to build up in her system.