Wit's end, desperate, ped is now saying try 48 hr of soy formula**UPDATED....not how I'd hoped**** - Page 7

[maddymama]

Mama,
Wow! I'm impressed with how well you are doing. A diet like your would be so frustrating to keep. I hope you continue to do so well for your LO, but I think we'd all understand if you did more formula than BFing.
Slightly off topic, but I wonder how much of your frustration with the diet the change is related to the physiology of the diet, kinda like you are breaking a caffeine or sugar addiction, IYKWIM? You are a huge amount of protein for your body building career, and now are eating totally differently... I bet that alone is messing with your brain and body chemistry. Please be forgiving of yourself.
I think you are amazing!
~maddymama

[DeChRi]

Totally valid thought! The first week was hell...but ironically I find that my energy, while low, is more stable w/out the caffiene and quicker digesting carbs. You are right on that there is a detox period and it messes with everything. Right now I am eating 2+lbs of turkey/day to get my protein intake in. I can promise it will be a LONG time before I eat it again.

I've also realized how social/family oriented food is. Out to dinner w/ DH, our daily big family breakfasts, baking w/ my older 2 girls, experimental cooking with my 11yo...I really miss the joy of cooking and eating something.

We'll get there though. :-) Good self-realization if nothing else.

[DeChRi]

I nursed her 2x this afternoon & she's now been screaming for 3hrs. I just can't imagine it's That violent of an allergy, after being on the diet. My 2yo is sobbing for me to "plz put that baby down". I thnk I may be done.

[jenfl]

You did an amazing job. You gave it your all -- and then some. I hope moving to formula brings your family back to normalicy.

[DeChRi]

It's such a head game. I keep thinking..what if the screaming this time was coincidental? What if what if. I'm going to do a couple more formula days, then try nursing one more time, see what happens. But I think I've resigned myself to this not working like I want.

I do think I'll continue pumping several times a day, for a few months as life permits, build a freezer stash and hope to slowly start dropping it in her diet many months down the road as she out grows it.

[D_McG]

Originally Posted by DeChRi

It's such a head game. I keep thinking..what if the screaming this time was coincidental? What if what if. I'm going to do a couple more formula days, then try nursing one more time, see what happens. But I think I've resigned myself to this not working like I want.

I do think I'll continue pumping several times a day, for a few months as life permits, build a freezer stash and hope to slowly start dropping it in her diet many months down the road as she out grows it.

It's OK. You know exactly how to keep her happy and healthy. You worked hard and found something that will help her grow and that she can tolerate. This is exactly what formula is for. It's OK. You are a hero!

[spughy]

I just want to say how impressed I am with how you've handled this. You are an inspiration. Good work, mama.

Just a question, and more for curiosity than to suggest a "cure" - have you tried giving your baby some soy formula or dairy-based non-elemental formula? It would be interesting to see how she reacts to those.

It's possible, given how little we really know about the constituents of breastmilk, and how the idea of routinely analyzing breastmilk in the same way we do with blood just never occurs to anyone, that instead of containing something that irritates your DD, your milk actually lacks something - some enzyme or trace nutrient that your DD's gut needs to digest milk comfortably. Just a thought. It would be nice if more scientific resources were put towards finding answers for these things.

[Nicole730]

I just read through of all of your posts on here and I have to say, way to go on doing everything you can to get breastmilk in your daughter. That is a battle I hope I never have to experience, hugs to you. Hopefully you will be okay with giving your daughter the formula, because it will be happier and more peaceful for your whole family.

[DeChRi]

Originally Posted by spughy

I just want to say how impressed I am with how you've handled this. You are an inspiration. Good work, mama.

Just a question, and more for curiosity than to suggest a "cure" - have you tried giving your baby some soy formula or dairy-based non-elemental formula? It would be interesting to see how she reacts to those.

It's possible, given how little we really know about the constituents of breastmilk, and how the idea of routinely analyzing breastmilk in the same way we do with blood just never occurs to anyone, that instead of containing something that irritates your DD, your milk actually lacks something - some enzyme or trace nutrient that your DD's gut needs to digest milk comfortably. Just a thought. It would be nice if more scientific resources were put towards finding answers for these things.

Ok, this is good...why didnt I think of this? I occasionally have this flash of...this totally has to be something off the wall and not a food allergy. Even the specialist agrees that this far in, she should not be having this extreme of reaction.

Here is what throws me:
1) She never has had irregular, green, foamy, bloody stools. If she is SO allergic to something, that 2 bites of that food in a 3 week time of elmination, causes that violent of a reaction like it did today, I cant imagine that there were not bowel symptoms when I was taking it in full quantity.

It just doesnt add up. That is why I cant make myself throw in the towel totally. If I KNEW...had a FOR SURE cause....then I could make a decision.

Trying other formulas is a good idea.

[HonkyTonka]

You're my hero.

[DeChRi]

Thank you so much. I've decided on one more last ditch effort, given that I just can't put it to bed, not being able to reconcile whether it's allergy or not.

Starting this morning I've been giving only bottles of fresh pumped "clean" breastmilk. Thinking that if it is some wonky thing about the WAY she nurses, that all the LC's and Drs have missed, then we'll know. Because she's always been a wonky nurser, I sometimes feel like she's snorting bm into her nasal cavity, which then makes me wonder if maybe the "congestion" that it was thought was an allergy symptom is really a function of how she nurses?

Grasping @ straws, but really want to turn the last couple stones. She's been sleeping much of the day so I don't have a good read yet.

Depending on the outcome of today's experiment, I'll go a bottle of milk based and/or soy based formula to see what it does, from an allergy standpoint.

I've decided that in the next couple days, I'm going to put it to bed, one way or another.
If it's formula, because we just can't figure it out, ill pump and freeze for a few mnths and hope she can have it later. If she can do bm from bottle, I pump and bottle feed.

Not matter what, after seeing the baby and my 2 yo so very upset yet again, I feel pretty solid that I'm done playing guinea pig with my infant's gut. I hate seeing her in such pain. After 10 weeks of it, I think she's telling me something. Last night in bed, in the middle of the night, I had a bottle of formula, she was all cuddled into me in bed...she had her little cheek resting on my chest gulping the bottle, staring at me in the tiny nightlight light...then she pushes the bottle out, give me a big smile and giggles, which she has never done before. The went right back to the bottle and cuddled into me while she ate and fell asleep. And I realized that no matter what, she'll be just fine. She wants to be happy.

AND my MIL is coming over in an hour and I'm going to get a pedicure. :-).

Onward and upward. I'll update on how this bm in bottle process works.

[cschick]

Originally Posted by DeChRi

Onward and upward. I'll update on how this bm in bottle process works.

I saw this from the main page and don't quite have the time to read back through the whole thread . . .

Have you seen an ENT? (Ear, nose, throat specialist). If the breastmilk in bottle works, you may want to have her checked out for a soft palette or sinus issue. If she has some form of minor deformation, the harder sucking involved in nursing may be resulting in her also pulling down a lot of air or phelgm, both of which can cause major stomach/digestive pain. Whereas a bottle doesn't take as much effort/may not result in that.

[DeChRi]

Cschick - we are seeing an ENT tomorrow, just in case. I'm lucky that my Mom heads the audiology part of an ENT specialty practice, and one of the ENTs has 5 kids and is super kid kind. She called him & he said it could be something like a submucosal cleft palate that is often undiagnosed until age 4-ish. Anyway, he is going to squeeze us in tomorrow morning.

Baby had 4 bottles of breastmilk today. She had one sream fit bad a bit ago, but it could be a fluke. I'm giving it through tomorrow as a test run.

[DeChRi]

Crash and burn. She's been screaming non-stop since my last post. So sad.

Still going to ENT tomorrow. Need to rule that out for peace of mind.

[2boyzmama]

Yes, a submucous cleft palate or something called velopharyngeal insufficiency (or VPI). Those often aren't diagnosed until a bit older just because they're so hard to physically see, and the symptoms mimic other things.

BUT...even if that is it, I'm not fully convinced that that's ALL, you know? Because you've done near exclusive pumping in the past, and she still had a rough time. But when you replace the breastmilk bottle with HA formula, she does TONS better.

So definitely good to rule out a palatal issue (my son has both a submucous cleft and VPI, so I know about both unfortunately) but beware that it might not be the magic fix you so desperately want.

[DeChRi]

Originally Posted by 2boyzmama

Yes, a submucous cleft palate or something called velopharyngeal insufficiency (or VPI). Those often aren't diagnosed until a bit older just because they're so hard to physically see, and the symptoms mimic other things.

BUT...even if that is it, I'm not fully convinced that that's ALL, you know? Because you've done near exclusive pumping in the past, and she still had a rough time. But when you replace the breastmilk bottle with HA formula, she does TONS better.

So definitely good to rule out a palatal issue (my son has both a submucous cleft and VPI, so I know about both unfortunately) but beware that it might not be the magic fix you so desperately want.

I so want a magic fix. I'm so burnt out. I need to go pump again as I feel a bit like my supply has gone down in the last couple days, plus I didn't pump all last night as I was so tired, but the thought of pumping again right now makes me wanna hurl. DH is suddenly renewed in his desire to keep trying stuff, but those all involve me being up all night, screaming baby and spirit crushed toddler all day. Locked in my bathroom with a finally sleeping baby, crying for the very first time in this parade. DH is wonderful and trying to be a cheerleader, but it isn't taking the same toll on him.

[2boyzmama]

Originally Posted by DeChRi

Last night in bed, in the middle of the night, I had a bottle of formula, she was all cuddled into me in bed...she had her little cheek resting on my chest gulping the bottle, staring at me in the tiny nightlight light...then she pushes the bottle out, give me a big smile and giggles, which she has never done before. The went right back to the bottle and cuddled into me while she ate and fell asleep. And I realized that no matter what, she'll be just fine. She wants to be happy.

If this is the answer, I think it's more than acceptable

You've done a freaking amazing job!!!!!

[lalemma]

Mama, you are AMAZING.

I know this isn't going the way you hoped it would (or the way any of us following your story hoped, either) but you are so strong and tough and inspirational. However this works out, you and your baby are going to be okay.

[myk]

good luck with the ENT. no matter what happens, you are a great mama and that baby is lucky to have someone who is willing to do anything to make her healthy and happy.

[dogretro]

Originally Posted by DeChRi

Not matter what, after seeing the baby and my 2 yo so very upset yet again, I feel pretty solid that I'm done playing guinea pig with my infant's gut.

This right here. Every time I read that your baby is back to screaming, all I can see in my mind's eye is a poor miserable baby and a poor miserable toddler (not to mention poor miserable mama!). I am so impressed w/ your mission to solve the problem, and it looks like you have: formula. Giving up the dream of breastfeeding just plain sucks 100% You did everything you could & now it is time to enjoy your baby!!!