or Connect
Mothering › Mothering Forums › Mom › Women's Health  › Allergies › Please help with next steps - breastfeeding at major risk
New Posts  All Forums:Forum Nav:

Please help with next steps - breastfeeding at major risk - Page 27

post #521 of 625
I doubt you'll get a decent answer - about all you know at this point is that she's very sensitive to *something* . Sorry, I was hoping it was going to be a nice basic icing with 3 ingredients for you.
post #522 of 625


I can't believe your MIL did that. Well, actually, I *do* believe it, because things like that have happened to us and to so many people I know with food-allergic kiddos. I sincerely hope that MIL has recognized that this is a real issue, and not simply "DIL overreacting."

Since I think dh's extended family is from the region where you are - I've seen that "feed the baby [ice cream, frosting, mashed potatoes, bits of processed cheese, sips of pop, etc.]" sort of behavior with his family - I'm so glad we don't live closer! It wasn't until our most recent visit that I allowed dd1 to be alone with the relatives away from me - because she knows to refuse every. single. food. offered. unless we are with her. Dh is offering that, if you would like, he can tell your MIL what he thinks of her behavior (including lots of ), next time we're in the neighborhood.

It seriously is time for you and for dh to tell family and friends that this is very serious, and that they MUST respect your guidelines with Ellie - tell them, "When in doubt, ask first." And, unfortunately, in my experience, this means that either you or dh (or possibly your 11 year old) ought to be the ones who hold Ellie at gatherings - no one else unless you are right there hovering the entire time. They may think you're a helicopter parent - but they're not the ones dealing with the fall-out if there's a slip-up. Additionally, many people assume that "a little won't hurt," or that small exposures will actually HELP (as in the shots for people with environmental allergies) - all the mainstream articles about carefully controlled medical research on doing just that with peanut-allergic kiddos doesn't help with this either. Remind them that Ellie is not in a carefully controlled medical research group - she is flying solo and doesn't even have an epi-pen at this point!

I'm in tears thinking about how awful this has been. Just when you were starting to hit your stride and feel like you were getting it under control.

Your description of how it happened (from kicking in two hours after the finger-lick to its duration) fits very well with my dd's reactions. FWIW, dd1 was diagnosed with IgE and has an epi-pen for her egg allergy. We never took dd2 to the allergist until she was three, and she had outgrown her allergies by then, but reacted similarly. In the beginning, dd1's reactions took 4 hours to kick in at challenges - at this point, they kick in almost immediately with the projectile vomiting, like clockwork, 2 hours later.

This absolutely is from the icing. No question about it. Nurse away, your milk is not the problem. This isn't in your milk.

In terms of the frosting content - call around to another bakery and ask if they can tell you their individual frosting ingredients (the cake and the frosting are not all from the same box). OR call the bakery again and ask to speak to the manager/owner/baker -- because the frosting mixture has its ingredients on the bag/box in came in (if it came in a bag/box and it seems obvious that it did).

Just guessing, I'd say that the frosting had:
Hydrogenated soybean oil
Powdered sugar (therefore, corn)
Butter (and various versions of butter solids etc.)
Possibly Egg White (very likely, if there were any Royal Icing to it)
...It may also have had some palm oil, guar gum, random other stabilizers. And, if it was a flower or near a flower, it also has all sorts of artificial coloring/dye in it.

For us, dh's family was our most difficult to deal with. My TED and the girls' restrictions were all about the impact on THEM - inconvenient, crazy, ridiculous, all in my head. The only thing that finally got them convinced was dd1's allergist diagnosis, and her epi-pen, and they still slip up. I learned to take it into my own hands - bring a couple safe foods for me/dds to all family meals (offer to make the mashed potatoes or etc.), suggest safe restaurants when we went out to dinner (and never ever mention it was because I knew they were safe, or SIL in particular would refuse to go and want to go somewhere else, learned that the hard way)....

In terms of allergist testing with infants - the tests are less reliable the younger the baby is. You get false positives and false negatives, the gold standard is ingestion. I think if there's an ana response, there will typically be an allergist referral, but many Peds and many allergists prefer to wait 'til kiddos are 2 or preferably 3 before the allergist appointment, so they're more likely to get an accurate test. You could request a referral earlier, you might have luck, but you should be prepared for inconclusive or even negative responses (in other words, don't tell the ILs about it if you don't want them to pooh-pooh your TED if/when the tests say there's no allergy).

Also, I think you're right about the crying from the allergic reaction = increased reflux today equation. We found that happening. Crying with reflux is a vicious cycle.

I hope things straighten out again in the following days!

ETA: Also - I know exactly what you mean about being willing to feed Ellie anything if it means she feels better. At what point dd1 was hospitalized, if the Ped had told us that the only thing that would work for her was bear lard, I'd have found the bear in her den and killed the bear myself if it meant things would get better. It was almost a relief to recognize that feeling - it meant that when we were able to return to breastfeeding, I was doing it because it was what was best for her, not because of me or my wants.
post #523 of 625
Thread Starter 
nak (yup, you got that right)

elanorh - thanks sooo much for that post. it helps to hear that her reaction is "normal".

she is progressively better today.
post #524 of 625
Thread Starter 
Question for those who've had kids go through this...did they have trouble GOING to sleep? Of course they probably didn't sleep well, but did they struggle to get to sleep? Like exceptionally more than other babes? My first 2 were sleep fighters. But Ellie is SO hard. With the exception of 2x in her life she nursed to sleep, she RAGES before any sleep time. She'll be exhausted and will just scream and scream and is inconsolable until she crashes. Is that a personality thing or something that may get better as she feels better?
post #525 of 625
Quote:
Originally Posted by DeChRi View Post
Question for those who've had kids go through this...did they have trouble GOING to sleep? Of course they probably didn't sleep well, but did they struggle to get to sleep? Like exceptionally more than other babes? My first 2 were sleep fighters. But Ellie is SO hard. With the exception of 2x in her life she nursed to sleep, she RAGES before any sleep time. She'll be exhausted and will just scream and scream and is inconsolable until she crashes. Is that a personality thing or something that may get better as she feels better?
For us its totally a reaction thing. My Ellie just can.not.settle down until she is totally overstimulated and the only thing that calms her is letting her scream for a few minutes while I leave the room. Then when I come back she is happy not to be along anymore so she gets a little calmer. If I stay with her she screams for hours (or at least did when she was younger).

I find that she will get in to the bad sleep cycle from an illness or an accidental exposure to her triggers (in particular soy for her) but then even after the trigger is out of her system or she's over the illness the sleep remains disrupted until we start rebuilding her magnesium stores with Epsom salt baths and / or Mag supplements. Then we're back to a good place with sleeping until the next thing throws us off.
post #526 of 625
Yeah that to what Laurie says. I think reactions run down magnesium, and then it takes a while to build it back up. Epsom salts baths really help us for this issue, 2c in a warm bath for 20 minutes.
post #527 of 625
Thread Starter 
Oh wow. And safe for babies? How often?
post #528 of 625
My midwife put me and my newborn in an Epsom salts bath, so yeah, safe for babies. We did them daily for a while - try one, see if it helps your daughter with sleep - if it does, do often enough to maintain the effect . Join her if you can, it will help your magnesium levels as well.

ETA: Oh... prevacid has been known to deplete magnesium, I think - so perhaps another good reason to try the Epsom salts (Epsom salts are magnesium sulfate, so you soak mag through the skin when you use them).
post #529 of 625
Stress can also deplete magnesium.... and vitamin C...

I know this is a thread about your DD, but do take care to not drain your adrenals... all this screaming and up-in-the-air-ness has to be absurdly stressful. Consider looking up adrenal fatigue if you don't already know about it... I've been suffering from it from less stress than you have, certainly. The supplementing really has helped me. If you search MDC for "the adrenal fatigue thread" or something along those lines, there's a big one out there. I know I get a lot more spazzy (and angry and just generally don't roll with the punches well) when I'm depleted... it doesn't help things, is all.

Just a thought

Glad things are continuing to get better!
post #530 of 625
Thread Starter 
So looking back @ today. She took 4 "naps". She screamed bloody murder the 20-30 min before each. But that was IT.
post #531 of 625
post #532 of 625
Thread Starter 
Ok, rough night. She went down "normally" with her 30 min of raging protest. Then woke ever 30-60 minutes All Night Long. She would start squirming, then fussing, I'd try nurse/binky and either would work a few seconds, then cry and would stop when I stop up and bounced for 2 minutes, then back to sleep. It was not horrid pain cry but more really uncomfy kinda cry. Like lots of gas I think. She didn't seem super refluxy or anything. She had a few big spits this morning as soon as we got up. We fell asleep last night w/o giving her meds. Could it have made that big a difference?

I sometimes wonder if the meds are making things worse (gut health with the low dose eryth, corn in prevacid if that's an issue, etc), or if these two really help a lot. I have been giving infant probiotic (not grown on anything that could bug her) to help combat. Couldve been a fluke, but she has many nights like this, though not as severe, lately.

I will say...we are making progress but she's not as consistently good as she was on Neocate. Granted we are riding out the frosting incident too. Mostly just jabbering due to fatigue. getting ready to send 2yo off with grandpa to spend the morning carving pumpkins. Ellie and I are going back to bed
post #533 of 625
Thread Starter 
So in a few days when I start adding foods.....a few questions.....
-How do I know what her "baseline" is? Several days now of "consistent" behavior? Or if she still has a few symptoms to I continue playing with meds and stuff?

-How on earth do I know what to eat. Dr. NE gave me a list of foods from least to most allergenic and said start at the bottom. But like...let's say I move up the list and get to brown rice. Does that mean straight up brown rice? Or could I include rice protein powder that's only ingredient is brown rice and is soy, dairy, egg, corn, nut, etc free?

-Finally...I am thinking some of her discontentness at nice is because she overeats and because I still find she can't eat a lot at one sitting without being upset (I think there is for sure some DGE), would it makes sense to pump a couple bottles to feed her at night, so I can control the amount? She is really not too attached to nursing, as sad as that is. She truly seems to have zero preference over bottle, boob, formula, etc...I mean from a taste and delivery system. She's kind of a "whatever!" eater.

BTW, she is pretty good today after the rough night. She does have Significantly more gas than on the Neocate and it bothers her some. I'm wondering if that is latch and such. She pulls her head way back when she nurses...like pulling away, stretches my nipple out like a gumby doll and keeps it kind of shallow.
post #534 of 625
It sounds like circling back with an LC might be helpful at this point, see if they can come up with any ideas to encourage her to latch better, since that seems to be creating gas and discomfort issues.

For adding foods back, everyone has their own approach. I personally added back stuff that gave me the biggest nutrient value (so I did eggs first, fish next). I also added some "comfort" foods for me, and more fat sources. As you know from your first TED, where you were eating 4 of the least allergenic foods, sometimes what other kids react to just doesn't predict what will be true for yours.

You also might consider trying something like coconut (great fat source) - there's coconut oil in the neocate, so you know at least the oil is probably OK (protein might be a different story, but worth a try - coconut milk is a great addition to lots of stuff).

Normally when you add rice, you can add anything made with rice (so long as it's only rice), but I'd be careful with rice protein powder (it's a highly concentrated form of only part of the rice, and that might cause more issues).
post #535 of 625
Thread Starter 
I'm having a problem. I'm sane, rational, and still questioning if this is the right path. Today from noon on was rough. Really rough. Gut pain. Lots of crying. Worse than both yesterday and the day before. She has slept 40 min all day due to discomfort. Mainly horrible gas. I know there are a million ways to disect it...latch (LC says is fine)..could pump and give in bottle. Could be this med or that med. Could be a million things. Then TED and adding and trialing and all of that. The reality is, I reallllly want her to be better nursing. I want to give every problem a reason that COULD be this or that. THe facts are that if 100 was a happy baby baseline, then on Neocate she was an 80. She slept well most of th time. Her time on BM has been a 50 this time. She doesnt sleep. She is in pain more often and it is worse when she is. I know I can trial foods and alternate meds and there willbe days of 10 and days of 30 and hope to reach 100. But I dont think is worth it.

I had her in the sling a bit ago, cradle style, she was crying/dozing. She has been crying for hours now. She opened her bloodshot eyes and locked eyes with me in the worst pleading baby look i've ever had. I was hit with this overwhelming feeling of "time to let it go". And I dont feel tortured about it.
post #536 of 625
Have you done just Neocate while also on the meds she's currently on? I'm hoping that if you punt now, it's not actually the meds that are the problem. Because if so, then you will still have the same problem either with Neocate or with breastmilk.
post #537 of 625
Thread Starter 
Quote:
Originally Posted by KimPM View Post
Have you done just Neocate while also on the meds she's currently on? I'm hoping that if you punt now, it's not actually the meds that are the problem. Because if so, then you will still have the same problem either with Neocate or with breastmilk.
Yes, her consistently happiest time was on Neocate, Prevacid, the Erythromycin, and probiotics.
post #538 of 625
Thread Starter 
I so very want nursing to work...I am digging for a reason for everything. I'm not sure why this hit right now. So many people and things to consider, but my gut is telling me that I am done chasing via BF-ing.
post #539 of 625
Quote:
Originally Posted by DeChRi View Post
pulls her head way back when she nurses...like pulling away, stretches my nipple out like a gumby doll and keeps it kind of shallow.
This is exactly the way my Ellie nurses. I *think* its because she has a hyperactive gag reflex and can't take the feeling of the nipple that far back, which I hypothesize is because of her insane constant vomiting as a baby. We are, in fact, currently doing ST and OT to try to correct these issues that have plagued us since the early days b/c my Ellie avoids most solids still because she is so sensitive.

Not that that is helpful in terms of what to do about it other than wait for the OT in Jan. You could ask for an E.I. eval and pick the ST or OT's brain during the eval since she won't qualify for services unless there is a developmental delay going on in addition. But they may give you ideas that you can do at home.

You could also try using your finger or a toothbrush or nubby brush to give deep pressure input to the gum line progressively further back, and her tongue as well to try to get her tolerating things further back if you think that is the issue. Be careful not to gag her though b/c then she won't want to do it anymore.
post #540 of 625
When you pump...is your breastmilk bubbly or frothy at all? This is what happened with me and DS. Turns out I was eating things that *I* am sensitive to, and to my milk was bubbly. That's what gave him so much gas. It was only when he was about a year old that I had a blood test for my food sensitivities, then later removed those foods in my diet. Lo and behold, no more foamy bubbly milk, and no more gassy baby.

My DS also has hypersensitive gag and he had some strange stuff going on in his latch, too. He still has trouble eating most food textures, though after going through feeding therapy we have a few foods he does eat.
New Posts  All Forums:Forum Nav:
  Return Home
  Back to Forum: Allergies
Mothering › Mothering Forums › Mom › Women's Health  › Allergies › Please help with next steps - breastfeeding at major risk