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



## DeChRi (Apr 19, 2002)

Warning: DESPERATE mom here....

I have an 11 week old. This is baby #3. #1 nursed 4yr, #2 nursed 2yr and quit while I was pregnant. I experienced a lot with the first two...#2 had horrible reflux, etc, and we made it through pretty seamlessly.

#3 started out a lazy nurser, but had a great latch and such. Then she was just finicky...I had overactive letdown and huge supply. About 4 weeks she started getting excessively fussy. During this time I started block feeding to help regulate supply/letdown and hope that the fussy was maybe a foremilk/hndmilk imbalance. This helped the supply/letdown problem, but not the fussy. She still only nursed about 3-5 min every couple-3 hours, but was gaining fine. The fussy escalated to full on all day crying about 6-7 weeks. She would wake up fussy, cry nearly all day. I walk holding her/slinging her/tummy holding her, trying to nurse her, binky her, you name it...for hours and hours a day. My back is shot and my other two kids are totally neglected. For the last 4-5 weeks she literally has MAYBE 30-40 minutes of content time, from 6am-11pm. She screaming in the car, the stroller, etc.

Went to Dr for 8 wk checkup...she had moved from the 98th % to 60% in weight from the 4 week checkup and was 2lb lighter than my other two at that age. Dr said she was fine size and would pick up eating when whatever this was worked itself out. I tend to agree.

She is obviously uncomfortable...crying in pain, like she is trying to expell gas and such, but also very gaggy and spits up into her throat, chokes, gags, cries. We started her on Prevacid, and it's doing nothing (and she has been on it awhile now, so it should be). I elimated all dairy, including hidden, from weeks 6-9 with no luck. I have since added back in half and half in coffee and some whey protein, since cutting it all didnt seem to do anything.

When she is crying/agitated she refused to nurse, which means sometimes she goes hours w/o food.

I have talks to the LLL leaders and tried everything they recomended, as well as independent LC's. The only thing I have NOT done is a full elimination diet. I am struggling to get enough calories down as it is and honestly, I have no idea how I would do it with such limited food options.

The odd part....She does not do it at night. When she finally crashes (10pmish), she almost never cries until morning (6am ish). She will get agitated and squirmy, but rarely wakes and cries. Maybe 1 night a week she is uncomfortable enough that she squirms and grunts and keeps me up. But doesnt cry. I spent a couple daytimes making the house quiet and dark but that didnt do it either.

Also, if she has not eaten for hours and is crying and I pump, she will take the bottle with gusto, but refuse to nurse. However, during the spurts where she is happy, she loves to nurse.

I am so beaten. My older two are a mess and my household is flat falling a apart because of the screaming. My 2yo wants to give her away, lol. My 11yo is stuck taking care of my 2yo who then cries because she wants me. (this is daytime when DH is working). I am seriously at wits end. I am holding tight to This Too Shall Pass, but watching my other kids suffer is killing me.

So I had a very frank talk with Dr this evening. She is more mainstream than I am, but very respectful of my choices, and also a dear friend, so I can be frank with her and vice versa. I asked her if I should do a full elimination diet. She of course worries about my keeping my weight where it should be. She said I could. Or I could pump for 48 hrs and give DD3 a soy formula to see if she improves in which case I would know if was my milk and could then start an elimination diet Knowing that it would yield the desired result. Of course, knowing my stance, she knows I probably wont. She and I also talked about, if that was it, what if she then refused the breast after. I dunno, gut says that while it would be easiest, my heart isnt in it.

I just keep wondering if I am missing something???? She clicks a tiny bit when she nurses...is it horrible gas and the latch is wonky? Gas drops dont help worth a crap. LC said latch looked okay a month ago.

I really am hitting a threshold I never have with other kids. I need a break. I need to figure out what is causing my baby such discomfort for so much of the day, and I need to mend my other kids'.

Help? Anyone??


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## eclipse (Mar 13, 2003)

Have you tried rx reflux meds? I would try that before trying formula.


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## PatioGardener (Aug 11, 2007)

Have you tried infant probiotics? They often help with colic - so they may help in this case.








I really feel for you.


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## Ruthla (Jun 2, 2004)

(((HUGs))))

Have you tried taking the baby to a chiropractor? The baby could have neck or back pain that's making her so miserable, rather than something in your diet. Or, it could be more than one factor, and just taking care of the dietary factor wasn't enough when she was still in pain.

If you're going to do a trial of formula, I'd recomend a hypo-allergenic formula, rather than a soy formula. Soy is a very common allergen, and I think it would be torture to go through this trial of formula just for the baby to remain miserable.

However, I don't recomend a formula trial until you've tried ALL else.

It's important to avoid the foods that are bothering her, and it's also important to eat enough to keep you nourished so you have the strength to care for your children. Have you looked into the blood type diet? From my (very informal) survey of nursing moms following that diet, babies seemed to react badly to the foods that were on mom's "avoid list", and then a few also reacted badly to foods on their own blood type's "avoid list" that were otherwise OK for Mom. Of course, this doesn't work for every mom/baby diad, but IMO it's a better starting point than an elimination diet, since BTD includes a list of foods to emphasize.

Here's the link to the online list of what foods are good for which blood types. I'd recomend getting Eat Right For Your Baby out of the library or purchasing a copy, but that online link can get you started.


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## PatioGardener (Aug 11, 2007)

Another thought, did you cut out soy when you cut out dairy? I have heard that ~60% of babies cross react. If you didn't, and decide to go the bottle/formula route, I would suggest an elemental formula, not soy, to see if soy is a culprit.

ETA I see wise Ruthla had a similar thought. we were posting at the same time


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## thebigfam (Dec 15, 2009)

I second a chiro! I am not normally a Chiro kind of person but it did wonders for DD when she was a baby! I wish I did it before 4 months....It prolly would have saved my milk supply! The first place this baby I have in my belly is going is to a Chiro!

I hope all is well!

Big Momma


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## DeChRi (Apr 19, 2002)

Eclipse- She has been taking 30mg of Prevacid for awhile now, with no luck. My 2yo had nasty reflux & had much improvement w/ 15mg. I was reallly hoping that's be the magic bullet, but no luck.









Patiogardener - I haven't, but great suggestion and will definately start that asap. Regarding soy, I actually don't eat soy in my diet in general, so while I didn't cut it out, I can't imagine any snuck by.

I haven't tried chiro.When I checked into that for my 2yo there wasn't anyone local w/ the credentials that would make me feel good about taking an infant. I'd go back and see if anyone new have popped up.

Ruthla- thanks for the formula advice. I don't think I can get past the mental block of giving formula w/o being truly unable to nurse. However, I will keep the hypo-allergenic type in the back of my mind, just in case.


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## DeChRi (Apr 19, 2002)

Does anyone know, if I did a total elimination diet, how long it would before I notcied some kind of difference? I know it takes a couple weeks to truly eliminate some things from the system, but should there be a noticable difference of some kind within day?

If it is horrible gas, anything other than Mylecon?

And thanks so much for the prompt replies. I very much appreciate it. If nothing else it helps back me away from the edge of the cliff.


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## Stephenie (Oct 11, 2007)

Sounds a lot like my DD at that age. It's so hard.

I did a few foods at a time instead of a full out elimination diet. I gave each food two weeks. I had a good guess as to which foods to try because my son has a lot of allergies (though he did ok with my eating his allergns when nursing)

Anyway, you said you don't eat soy, but unless you try REALLY hard not to, there is a very good chance you do. It's in EVERYTHING. Both my kids can't have it, so I'm very aware of that in particular. If you are eating packaged foods, chances are, you are eating soy. I'd give that and gluten a try before giving up.

I know how hard this is. It took about a month of playing around before DD stopped with all the crying.

Good luck. If you need recipe ideas if you decide to cut foods out, feel free to pm me. My family lives each day without dairy, soy, gluten/wheat, citrus and nuts, so while not at a full elimination diet, without a lot of common allergens.

Also, do you eat a lot of acidic foods? Tomato, oranges, pineapple etc? If so, try cutting those back too.


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## Stephenie (Oct 11, 2007)

When I say it was about a month, that was to be completely better - we started with just cutting out dairy- some improvement came about day 5, a lot better by about day 10, then I cut out soy and it got better yet. Dairy can take up to three weeks to get fully out of your system... different foods stay for different lengths. Hope that helps.


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## DeChRi (Apr 19, 2002)

Stephanie, I eat the same things nearly everyday. I weightlift/bodybuild as a hobby so I am pretty anal about tracking my food. I nearly keeled over giving up dairy. When not watching dairy, my diet is nearly always:

Meal 1 - 6 egg whites + 1 whole egg and a mess of veggies, 1/2 c old fashioned oatmeal, tbsp natural peanut butter

Meal 2 - 1.5 scoops of 100% whey isolates w/water, lowfat cottage cheese or yogurt mixed into a shake

Meal 3 - 5oz of either chicken, fish or turkey, veggies w/oil/vinegar, 4oz swet potato

Meal 4 - Same as meal 2 but with natural peanut butter OR 6-8 egg whites/veggies and a handful of almonds

Meal 5 - Same at meal 3

Meal 6 - Same as meals 2/4

So obviously VERY dairy heavy...you can imagine how hard it was to cut out dairy for 3-4 weeks, lol. So if I cut eggs and nuts as well, shoot, I may shrivel up.









I can get more creative with my grains and meats and such, but with new baby and toddler and such, it really just stick to what I know and gets food down, plus really good supplements.


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## DeChRi (Apr 19, 2002)

Is this a reasonable game plan?

1) Cut out all major allergen possibilities (oh how I love dairy) for the next couple weeks (dairy, soy, peanuts, eggs, and anything else??) and if there is a marked improvement, continue with that until I am sure it is a food, then add back in slowly.
2) infant probiotics (DH just ran to grab some)
3) If I can find a good chiro, I will try that


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## PatioGardener (Aug 11, 2007)

Quote:


Originally Posted by *DeChRi* 
Is this a reasonable game plan?

1) Cut out all major allergen possibilities (oh how I love dairy) for the next couple weeks (dairy, soy, peanuts, eggs, and anything else??) and if there is a marked improvement, continue with that until I am sure it is a food, then add back in slowly.
2) infant probiotics (DH just ran to grab some)
3) If I can find a good chiro, I will try that

Sounds good to me, but I would reverse the order and try 1-2 days of probiotics and chiro if you can get an appt with a good pediatric one in the next day or 2 before elimination dieting. The elimination diet is hard.

Good luck! Please let us know how it goes.

Oh - another thought. Do the symptoms get worse after you work out?
Also, check your supplements for hidden dairy and soy if you go the diet route.

I'm cheering for you in cyber space.


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## Awaken (Oct 10, 2004)

along with a chiropractor, craniosacral work is reported to really help fussy babies.


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## crystal_buffaloe (Apr 30, 2010)

What's confusing to me here is that your DD is okay with taking a bottle of expressed breast milk. Let me know if I misinterpreted your original post, but it seems like mine had the same response around 6-9 weeks (though not nearly as bad, it seems like) where she would be way fussy/back arching at some times when I tried to nurse (and get too worked up to eat), but took the bottle quite a bit easier. It made me think it had something to do with letdown (or maybe positioning/reflux in that she liked the more upright position of taking a bottle than the more horizontal position of nursing) and not diet. Another similarity we share is that my DD is and has been a great sleeper at night. She's fussy during the day, but sleeps for a good 9 or 10 hour block with usually only one or two wakings, where she'll nurse and go right back to sleep. (Which also made me think it maybe had something to do with reflux or letdown, since my diet hadn't changed from early evening to middle of the night, and the side lying position is supposed to slow down the flow a little, right?)










She's 10 weeks now, and things have gotten a lot easier ... which is further confusing to me, since I didn't make any permanent changes.

And just brainstorming a few things, though your list of ideas to try is great: gripe water? maybe a day of feeding her expressed breast milk when she's fussy and nursing when she's calm (I know that's a big hassle, but it might be a step to take before the formula)? abdominal massage? long relaxing baths (for both you and her -- you could try nursing in the tub)?

Edit: I did do block feeding for almost 3 weeks, and attribute some of the improvement to that -- now we're back to one side at a time.


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## LynnS6 (Mar 30, 2005)

You might try cross-posting in the allergy section in the Health and Healing forum.

I think it takes at least 21 days for a full elimination diet to work.

I too was wondering if you could pump and feed her pumped milk, since she seems to be content taking that.


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## daisymommy (Dec 13, 2003)

(((HUGS))) I know how hard it is. I have had issues with all 3 of my babies, for various different reasons. The only thing I would add to the previous advice is that you could try different relfux meds. Not every baby is healed by the same meds. Try Zanatc or something else. I wouldn't stop at just Prevacid.

Did I read you right that she takes the bottle just fine? and is not fussy later? because if so, then there's your answer--your milk is just fine and it's not your diet; it's something with the latch/let-down, milk supply. But if you are saying she takes the bottle fine, but is crying and fussing later, then that's a whole different story.


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## boobs4milk (Jun 25, 2006)

i agree with latch issues, especially if babe is taking bottles fine. at about that age, millie would get terribly frustrated with how long it took to let-down. i have oal and had os, but i block fed to correct this and then i ended up having surgery and struggling with supply. have you watched these videos? http://www.nbci.ca/index.php?option=...id=6&Itemid=13

the assymetric latch that dr newman talks about helped my dd when she made that clicking noise. when i latched her, i would then pull her butt around so that it snugged her chin into my boob. most lc's will tell you to do a symmetrical latch with chin and nose both barely touching the boob. however, the fussing stopped when we started using assymetrical latch, her puking decreased, and she fed for longer periods. i got easier letdown, too. i would also suggest compressions as they helped with easing let-down.

also, eggs were hard on my baby. i used to eat eggs just about everyday, but not nearly in the quantity that you do. i cut those out and her puking stopped. i think that was a combo of eggs and oald.

good luck!


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## DeChRi (Apr 19, 2002)

Thank you all for the advice. You know how cause and effect kind of blur together when you are stuck in the abyss of crying babies? Let me see if I can give an example of the bottle part....Like this morning...she woke up for the day at 6am, crying crying crying. She hadn't nursed for a couple hours, and that was just for a few minutes. I tried to nurse her but she screamed at me. Acted like she wanted to, but wouldnt latch. Worth noting, the first 6 weeks of her life she had no issues nursing, besides just being kind of a lazy nurser. Had latch assessed then and was told it was okay. SO I put her in the sling, grab a binky and we start walking. After 10-15 mins she took the binky, relaxed and started dozing/crying off and on. After 30 min she dozed off so I tried to set her down. She woke up, but then laid there in her cosleeper by herself, perfectly happy for 5 min or so. She started fussing so I picked her up again and gave her to DH. She instantly started rooting on his bicep and crying. He says, she is hungry. I said, I just tried to feed her. I took her and tried to nurse her. THe second my breast hit her lips she screamed bloody murder. It took about 30 min to get her calm that time. After DH left for work I pumped 4oz, added some probiotics and gripe water, sat down, tried to nurse her first, no dice. Offered the bottle and she drank it right down and is now happily snoozing in the sling.

She has never once, since 5 weeks, fallen asleep at the breast. Nursing will sometimes carry on for 3-8 minutes, and ends when she pops off screaming. So now, she will sleep for a bit on me, wake up, and we will start the same process as above. She will wake screaming. During the day she rarely sleeps for more than a few very agitated and wrestless spurt of a few minutes.

I just, for the life of me, cannot figure out cause and effect.

I almost wonder if I could have over-corrected my letdown/supply overload? I can tell my supply is way down, but I feel pretty sure that it is adequate. Letdown is not as fast, but within the first 30-60 sec usually.

Exercise doesnt seem to influence one way or the other.

I will watch that video regarding latch, and maybe worth revisting that with a LC.

The bath tub nearly always a temporary fix. Good reminder.


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## octobermom (Aug 31, 2005)

you mentioned she makes a clicking sound when nursing.. Has she been properly evulated for a Cleft pallate? or a Retracted jaw or tongue?

Deanna


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## DeChRi (Apr 19, 2002)

Quote:


Originally Posted by *octobermom* 
you mentioned she makes a clicking sound when nursing.. Has she been properly evulated for a Cleft pallate? or a Retracted jaw or tongue?

Deanna

The LC I saw inititally looked for these, I believe. I know for sure the Cleft pallate, and she also checked for any tongue tie type of thing. I don't recall retracted jaw of tongue specifically so I will jot those down to check on as well.

I really appreaciate all of the input and ideas.

So after she has the bottle, she started waking about 10-15 min later (I am wearing her in the sling now) and while she was half snoozing I tried nursing and she latched right on, nursed for 3-4 min, popped off, squirmed about and was about to lose it, I tried offering again and no dice, she then took binky and is back asleep in the sling. Sorry for the play by play, but I am trying to find a pattern of something and hoping someone can pick up and AH HA! in the way she does things.


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## tippy (Mar 9, 2008)

hmmm, i'm a new momma/BFer myself so i don't have a lot of experience under my belt, but to me it almost sounds as though it's an issue of her preference to the bottle. does she take the bottle with no problem every time you offer? this may not be ideal, but maybe you can pump and bottle feed for a little bit to see if her fussiness/crying continues ((hugs)) hang in there momma!


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## Tjej (Jan 22, 2009)

Is it possible she's over tired during the day and that is why she's melting down?

Could she prefer the bottle over the breast?

I know when my kids were that age they both went about 1 day where they hardly ate, and they also got to the point where they wanted to space out nursings a lot more. If I offered and they were not hungry yet, they'd get pretty pissed.

My DS also had dairy issues and I'd say for us it took a couple of weeks to really have a new baby. I saw you tried it for 3 weeks, though, so for us it was better by then.

HTH

Tjej


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## DeChRi (Apr 19, 2002)

Thanks for the thoughts. She takes the bottle well Every Time. She could have just nursed, gulped through letdown, popped off crying, refuse to nurse, the suck down a bottle. I go back and forth between thinking I am just trying to feed her two often and she doesn't want it VS feeling like she is chronically hungry.


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## Parker'smommy (Sep 12, 2002)

It does sound like she has a bottle preference. It happens. If you have an overactive letdown then she would prefer the bottle because it comes out in one smooth flow without choking her.

What to do? Pump off the initial overflow and then nurse her. Stop bottles altogether? I know that would be difficult because you are worried that she isn't getting enough milk. But if she prefers the bottle, she is going to cry for the bottle, ya know? I've had babies cry for the breast when I offered the bottle. THey preferred the breast and wanted that. It works both ways unfortunately.

As far as fussiness goes... I'm not thinking it's your milk, if she isn't fussy after drinking a bottle of your milk. Gas from gulping too much air?

That all said....my oldest was like this. It took us 14 days to get him to even latch to the breast and then it was FUSS, FUSS, FUSS on the breast. IT wasn't my diet. It may or not have been overactive letdown. I'm not sure. I was a new mom and didn't have many resources to help me. Unfortunately, or fortunately, he wouldn't take the bottle either. Around 3 months old, he started doing better and we went on to nurse for 3 years









Oh, one thing that I did a lot was pick him out of a sleep and nurse him. He was half asleep and he'd take the breast better that way for some reason.

Good luck momma.....I can feel your desperation and I am really hoping that this all resolves quickly for you. HUGS!


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## larzanna (Jan 23, 2008)

Quote:


Originally Posted by *Stephenie* 

Also, do you eat a lot of acidic foods? Tomato, oranges, pineapple etc? If so, try cutting those back too.

DS cried the first 8 weeks of his life. Dairy made no difference, but tomatos did. Also, the chiro was magic!!! Have them do his head too, cranial manipulation for the plates in the head (someone else i am sure has more info) I swear made a huge difference, that and not eating tomatos.

Even now at 15 months, if he has a few fussy days in a row i take him to the chiro and get him "straightened out" (hehe) makes a difference.

It super sucks to have a screaming baby (and its sad that they must hurt and can't tell you where/why), I hope you get this figured out asap!


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## DeChRi (Apr 19, 2002)

I don't eat citrus friut but I do eat a load of tomatos, esp the last few weeks since they started poppin in our garden!

So I've pumped and given her two bottles thus far & damn if she isn't happy! I wonder if she was just hungry?? I wonder what made her like the bottle more? Did I over-correct my over-supply and over-active letdown problem and now she is fustrated as she doesn't get enough? I have no doubt we'll have a long breastfeeding relationship. I just need to know if it's supply, bottle preference, allergy, etc..so I know a plan of attack.


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## Baby~Braatens~Mama (Apr 21, 2010)




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## eclipse (Mar 13, 2003)

Are you holding her in exactly the same position when you give her the bottle? If she's slightly more upright or something, there could be pain involved in sucking in the breastfeeding position.

If it's just that it's not coming fast enough, maybe try an eyedropper of milk while she's at the breast, dribbling it in as she takes her first sucks?


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## ErikaS57 (Jul 15, 2008)

My second was very much like that - super fussy during the day, fine at night. I tried everything and it turned out to be gas. Go figure. She needed to be burped for about 20 minutes after EVERY feeding, otherwise she was a miserable baby. She outgrew it around 4 months or so, but it was hell till we figured it out. I'd burp her and she'd burp, but she needed to burp 5+ times to get it all out; meanwhile I was stopping when I heard that first burp.

I don't know why it didn't bother her at night though, weird...


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## boobs4milk (Jun 25, 2006)

personally, i'd ditch the bottles and use an sns until she gets back to breast. this is not easy, but it helped us ditch them. it took us about 3 1/2 weeks.


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## Parker'smommy (Sep 12, 2002)

Quote:


Originally Posted by *DeChRi* 
So I've pumped and given her two bottles thus far & damn if she isn't happy! I wonder if she was just hungry?? I wonder what made her like the bottle more? Did I over-correct my over-supply and over-active letdown problem and now she is fustrated as she doesn't get enough? I have no doubt we'll have a long breastfeeding relationship. I just need to know if it's supply, bottle preference, allergy, etc..so I know a plan of attack.

I came back to see if you had updated today and I have to say that it sounds like she has a nipple preference for the bottle. Whether that is because of a low flow or high flow, I don't know. How is it when you pump?

I would honestly try getting rid of the bottles altogether. She's young enough that if you get through a tough week of not using bottles she will go back to the breast again. Try by feeding her while she's alseep and she doesn't know that she is getting the breast instead of her preferred bottle. Good luck







!


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## luckymamaoftwo (May 25, 2010)

Oh man, so many parts of your posts sound just like my DS and our experiences for the past 5 months. I never felt like I figured it out exactly (totally get the whole cause and effect thing stumping you....so stressful when your baby is crying and unhappy), but things have improved. Here's what I did:

Block feeding for several weeks---seemed to help regulate my supply
Switched from Zantac to a Prevacid compound
Eliminated all dairy (even hidden) since May and almost all soy (except some foods with lecithin or soybean oil)
Eliminated eggs and peanuts--both large parts of my diet, so that just made sense
Started probiotics--culturelle dairy free--haven't noticed much change yet, but will keep with it

Part of me wonders if my DS, now 6 months, would have naturally improved despite all my best efforts. I don't know?

I'm also looking for a chiro as I've heard great things about their work on babies like ours.

Hugs. Hang in there. I understand the feeling that you're neglecting your household and your other children. It's so very hard.


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## Heba (Sep 24, 2004)

Quote:


Originally Posted by *Awaken* 
along with a chiropractor, craniosacral work is reported to really help fussy babies.

Yes this. Especially if you can't find a chiro, do consider a cranial osteopath. (if it's going to help, which it often does, you should see a difference after one or two sessions).


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## Heba (Sep 24, 2004)

PS Kellymom has info on CS and chiro therapy which may be helpful in deciding if you want to pursue it; also googling cranial osteopathy breastfeeding throws up some interesting links. Good luck Mama, you're doing a fabulous job against all odds.


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## HonkyTonka (Nov 18, 2009)

Hugs!

Maybe DD is afraid of the breast from the OAL...

you could also check this out:
http://www.nbci.ca/index.php?option=...tion&Itemid=17

could the fussiness be hunger?


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## maddymama (Jan 5, 2008)

Is you LO having an issue with your soap, or deodorant? If she likes your milk in a bottle, maybe she is having an issue with your soap bothering her....
Does she have an ear infection? Maybe lying on her side and having to work to nurse irritates her ear?
Also, my LO had bad colic when she was little. All that helped was me drinking tons of chamomile tea daily (like 4 mugs steeped for a long time) for a while. At first she was screaming for hours nightly, and within 48 hours of starting to drink the tea, she was crying for less than 1 hour.


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## karika (Nov 4, 2005)

Initially my thought was dairy and soy. Soy is in everything. It is called lecithin, alpha tocopherol and vitamin E. it is in your your supplements most likely, also dairy could be in the supplements. It is in skin care too. Nearly every bit of makeup or lotion or sunscreen or shampoo has vitamin e (soy). Then I read that dd takes your milk in a bottle fine. Then I thought same as above poster, it could be your deodorant or body wash, etc. Another thought is did she get a vaccination recently? that causes all sorts of reactions that include crying, but doesn't sound like this either.

After reading all the posts, this is what I think. baby wants bottle and paci instead of breast. If you want baby back on breast, get rid of paci and bottles.

In one of your posts you mention that you feel you would have issues with weight if you cut out dairy because you feel it would limit your food choices. I went dairy free nearly a year ago and I have found it is the opposite. Dairy in the diet is what limits diets, since most people have dairy in every meal. I am now gluten, soy, dairy, corn(organic popcorn twice a month only), canola and meat free , though I still use eggs in baking. I have a great diet. I am not a body builder however. I would recommend coming to the allergy forum for ideas on what to eat if you open up your diet by eliminating dairy. For one thing, smoothies made with fresh or frozen fruit, banana, homemade almond milk or store bought coconut milk from So Delicious, add kale or spinach, put in hemp powder for protein.... very yummy.

Right now you are frazzled and need to get to a peaceful way of being again however. I wish you luck and hope you find what works for you and your family. Many others have had good posts too. It may be that you would be best to give her bottles exclusively for a couple days while you rest up to reintroduce breast. but, I have not btdt and maybe it is best to just remove them (any nipple but breast nipple) asap.


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## DeChRi (Apr 19, 2002)

Thank you all so much for the thoughtful posts and advice. I have disected every bit of it. I have been paying attention in detail the last 36 hrs, trying desperately to figure this out. I THINK I have come to a couple conclusions.

1) I am diggin myself deep with the bottle. Initially the LLL LC and hospital LC diagnosed me w/ overactive letdown and oversupply. So I worked on that. I am not sure what caused the drastic supply drop (starting back on BC pills??) but over the last 3-4 weeks my supply has gone way down and my letdown is slowwwwww coming. She has to have one bottle a day while I am gone for a couple hours, but she has developed an immediate preference for the bottle. Since I am home with a tempermental 2yo, sometimes I go the pumped bottle route when the baby is screaming with hunger and wont nurse. I am perpetuating the bottle/supply/slow letdown, etc cycle.....

2) Something in my diet is giving her AWFUL gas and gut pain. As of tomorrow I am cutting everything possible and seeing what helps.

For the next couple days, my awesome DH has offered to take some hours at home during the day with my 2yo so I can be patient with the standoff with baby girl when she just wants the bottle. She gets hungry and screams and refused the breast. Will be tough to ride that out. So wish me luck over the next few days.


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## PatioGardener (Aug 11, 2007)

Quote:


Originally Posted by *DeChRi* 
I am not sure what caused the drastic supply drop (starting back on *BC pills*??)

what kind? when?? even the mini pill can tank supply - rare but definitely a possibility.

how are baby's diapers? are you getting 6 heavy wets in 24 h? have you got a weight lately? baby growing ok? eta: i see her curve has dropped - is she gaining less than 5 oz a week since last weigh-in?

i ask because i have seen a baby who had bad gas / pain from hunger, mom's supply had tanked. this may not be you at all, but i thought it worth mentioning just in case. (nak at 2 am, i may very well be over thinking this!)
personally i would stop the bc pill asap.

hope you guys are doing ok.


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## DeChRi (Apr 19, 2002)

Patiogardener - it was the mini pill, which I stopped 2 days ago, just to be safe. It's my first taking BC pills in a few years, as last time I went the IUD route.

She gained 6oz/week over the last 4 weeks. Just so different than my other two...all born between 8'2" and 8'9", all 90-something percent for weight at 4 week check up, & my first two stayed there for months and months. So the sharp drop with #3 freaked me out, although not abnormal I guess.

So status: BC stopped 2 days ago, added in fenugreek/blessed thistle, cut out pretty much anything potentially allergenic. I'm literally eating 2100 calories/day of boiled free range chicken/turkey, yellow/green squash, millet, rice, water and a few blueberries. I'm a coffee addict so I've done half a cup the yest morn and this morn to avoid headache & will shoot for a cup of green tea tomorrow, then nothing. The LC and Dr both said that if it's food related, I'll know it in a few days. We also are doing the probiotics.

As of yesterday I went on bottle standoff with her it was so hard but really by evening she wasn't resisting like usual. And 36 hrs on the supply supps, as well as nursing/pumping every 1.5hrs gave an instant supply boost.

So far, today has been stellar. What I would call "normal" baby fussiness. Normally she would have cried 4-5hrs by now.

If she stays the route of improvement, I'll slowly start adding things back in to see what the culprit is.

I feel a bit less like my body is failing me now.


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## JessicaTX (Jul 9, 2006)

She sounds a lot like my daughter who is almost 12 now and still has reflux issues. I ended up weaning her because I thought it had to be something I was eating, and I couldn't' survive on turkey and squash alone, i was too poor to afford that for every meal. I really think part of her issue was a lip tie, her frenulum on her front lip goes down between her front teeth, she spent a good bit of time in speech therapy because of it. I think a chiropracter really would be a good idea, at that time I could barely afford rent and rice, so trying to find one was out of the question for me, but hindsight...I think I should have pawned something to get her in. The pediatrician switched her to a hypoallergenic formula, but she still screamed and puked daily till she was about 10 months old. Once she wasn't lying down so much it mostly stopped, I had her on prevacid and didn't really see a difference, but I think that was because she puked that up too.


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## princesstutu (Jul 17, 2007)

Oh, yay! I'm glad there's improvement. I was going to suggest a nipple shield if she seemed to like the plastic or there was something going on with the way your nipple and her mouth worked together that bothered her, but I'm sooo glad you don't need to do that.

I wish y'all continued success!


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## PatioGardener (Aug 11, 2007)

Quote:


Originally Posted by *princesstutu* 
I wish y'all continued success!









me too!


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## MonkeysRUs (Jun 1, 2007)

If there is a naturopath close to you who does muscle allergy testing on babies, it is a non-invasive way to find out what your baby may be allergic or sensitive to, without restricting your diet unnecessarily. Sometimes the sensitivities turn out to be something you wouldn't expect.


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## boobs4milk (Jun 25, 2006)

! i'm calling classic nipple confusion. wooohooo for nursing without fussing!


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## elanorh (Feb 1, 2006)

Good luck - it sounds like you're on the right track!







I had a severely allergic reflux babe, never dealt with OALD but you've certainly gone through all the usual culprits and it seems you've found the solution.







Hope you get back on track.

When I had to rebuild my supply, I used:
Mother's Milk Tea
Oatmeal (lots and lots of oatmeal)
More sleep (I know, ha ha ha







)
Extra pumping after dd1 nursed per LC guidance (I don't know how much your supply has dropped though, you might not need to do this)
And ... since I was exclusively pumping at the time - I did notice that intimacy with dh seemed to stimulate my supply?


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## DeChRi (Apr 19, 2002)

Total crash and burn. So utterly frustrated. Won't nurse, even after ditching bottles. Screaming screaming screaming. Eating 2000 calories/day of boiled chicken, squash and millet. Just water. Supply is plentiful. And notta. 3 days in and it's almost worse. Every attempted nursing session is a beating that ends in failure (except at night). She knows how. Between 10pm and morning she nurses great.

I am totally beaten. I'd hand her off w/ a can of formula to my inlaws right now just to get a break. I won't, cause they aren't here, but just saying...I'm that beaten. I don't know why she won't eat. Why she screams. I don't understand how I have breastfed 2 kids for a total of 6 years and am failing so miserably that this. I dunno if pain is making her not eat, if not eating is causing her pain. But holding all day while she cries and chokes is just about doing me in.


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## PatioGardener (Aug 11, 2007)

what about a tube at the breast to get a fast flowing start?

have you taken a look at the kellymom info on strikes? http://www.kellymom.com/bf/concerns/...to-breast.html

ignore this if it isn't a help. i really feel for you and wanted to try to suggest something helpful.

hang in there.


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## maddymama (Jan 5, 2008)

Can you call a LC in your area to come to your house and visit with you guys? I really don't want you to give up in this, but it is obvious you are very stressed out and upset.

I'm glad that nighttime nursing is working out for you..... That is a huge plus. I wonder if your LO is too overstimulated by your surroundings and the nighttime is easier/less distracting. Have you tried nursing in a warm bath during the day? That sometimes relaxes my over-stimulated LO.
Also, would it be posible for your DH to take a few days off of work to help with the 11 yr old and the 2 yr old while you focus solely on the newbie? Or can your parents/in-laws help out? Stressing about the rest of your family can definitely feed into your LO's stress....
HUGS!
Please don't give up....
~maddymama


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## Katie T (Nov 8, 2008)

I didn't read past the first page so sorry if this has been mentioned. But I wonder if she has a adversion to your breast because of the strong let down but if she is sleepy "forgets". I wonder if when she is sleepy if you recline in a chair or propped reclined on the bed (so you are laying more on your back than sitting up, hope that makes sense) it will slow let down a bit and she will get over the adversion of the strong let down.

If you can pump 4 oz easily I think your milk supply seems fine.

Hope you get it figured out, it is tough with a screaming baby. I had one but for different reasons and it is a trying time. You are a wonderfully loving mama to be working this hard to make this work. (((hugs)))


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## terra-pip (Aug 30, 2008)

could you try to go veggie for awhile. chicken and any other animal product is still a foreign protein and not a humans natural diet imo. I have been on an elim diet these past weeks and have been eating a lot of fruit and veggies. really the only veggies you would need to watch out for would be gassy ones...broccoli, cauliflower, peppers, garlic, onions, citrus, tomatoes...but you ought to be able to eat everything else...potatoes, leafy greens, cucumbers, celery etc etc...and other than citrus you should be able to tolerate all fruits.

Also thrush? you don't always have to see tell tale white spots in the mouth or have nipple pain to have a problem with it. My oldest had some thrush issues when he was a newborn...i had it on my nipples and he was out of sorts but didn't have any white spots so i thought he was fine. but just really really fussy and i was on an elim diet...my midwife suggested i give him some nystatin drops, the same i was using on my nipples and he turned around quick. Thrush can be in their gut.

How's the rest of her development? other than nursing do you feel that she is where she should be at her age? 1 month right?


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## princesstutu (Jul 17, 2007)

Does she prefer nursing lying down maybe? My dd3 used to scream her head off and refuse to nurse or come off the boob until I got in the bed. Then she'd go right to nursing and sleep. Very demanding period of her life. I got very little done.


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## elanorh (Feb 1, 2006)

It's been awhile, but I know that either Prevacid or Prilosec (and I suspect it was Prevacid) had hidden dairy in it ....

I know you had a kiddo with reflux already. My dd1 started restricting her feeds to manage her reflux when she was less than three months old (I think really around 2 months). Could this be what's going on?

Don't make too many changes at once. Choose something to do and then stick with it. I'd say your options are:

1. Cut all dairy/soy/egg from your diet (or a TED) and do that for 2-3 weeks. No other changes. Watch for changes and see what happens.

2. Add probiotics to your and your little one's diets. There are dairy/soy/Big-8 free probiotics, and those are the type you both need. Do this for 2-3 weeks.

3. Try a different reflux medication. I know it's old-school now, but what worked best for my dd1 was Zantac, at the upper recommended dosage level, in compounded form (thick sweet syrup, NOT the icky mint stuff). Give that 2 weeks and see what happens?

4. Chiropractor or Craniosacral therapy if you're comfortable with that.

Personally - if I were you, I'd probably try doing 1 and 2 at the same time. Probiotics are good for us, and the two wouldn't mask each other.

Have you been remembering and using the environmental approaches to reflux that you probably used with your first? Upright after feeds, elevated surface for laying down for tummy time etc. etc.?

And the biggest advice of all (and since this is your third I know you've heard it before BUT) -- *call a friend or relative*. Have them come over and help. Ask them to wash the dishes, sweep/mop the floor, play with the two year old, take the 11 year old to do something special as a reward for all her help -- whatever you need that person to do. Repeat this often. You're in a difficult situation and the more stressed out and tired you are, the more difficult it will be to handle the situation effectively. If you have to be preemptive and tell the friend(s) not to discuss or advise re: breastfeeding etc., go ahead and do that. If they're a good friend, they'll bite their tongue and not say anything, if you ask them not to.


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## DeChRi (Apr 19, 2002)

A sincere thank you for all of the advice.I'll try and comment on as much as I can.

I do sometimes wonder about overstimulation. Also, I'm going to loop back w/ the LC and LLL and get some refreshed opinions.

DH is going to shoot to be home a bunch the next couple days so I can focus on DD3.

As far as going veg, I just don't think I can do it. If I KNEW it would work, I would do it.

Regarding nursing laying down. I've tried that all during the day...and to no avail. When she is upset, no position matters.

Here is the big observation I've made: Nursing seems uncomfortable to her. I can get her to latch on, nurse nurse for 60 seconds (latches, letdown kicks in, good flow going), then suddenly gets agitated and pulls off and screams. Not one time has she dozed off at the breast, or accepted it as comfort. It's very much a source if irritation for her. Which makes me feel horrible.

I'm just stumped because she is ok at night.she sometimes is sleepy-fidgity, but never cries or really wakes. She settles in and is fine till morning.

But today she would just be sitting there, then would wrench all up with her body and cry and cry. Totally appeared to be in pain.

I will as the Dr about thrush, absent of white spots. I'm making a beginning of the week appt to loop back w/ our Dr.

The elimination diet doesn't really bother me..I just wanted best chance and fasted chance at knowing if it was diet or not. I figured at the end of a week I'd notice Some difference.

I really just can't figure this one out.


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## boobs4milk (Jun 25, 2006)

does she have torticollis? my dd had tort and she seemed in pain unless i used pillows to position her.

and if you are stressing, she'll be able to tell. can you nurse in a warm bath? that always relaxes us.








s


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## smpayne (Oct 21, 2009)

Not really any helpful advice, but my ds#1 did this almost from the beginning. I was too uneducated on BF to know that the paci he had been using since birth may be part of the problem. He would scream bloody murder as soon as he got close to my breast. Talk about PP meltdown. As I look back, he reacted the same way to a couple of bottle nipples that he refused also and I don't think he like a lot of skin to skin, he got too hot. He definitely had a nipple preference and it wasn't for me. Other than nipple preference, he as pretty laid back, he would even take cold bm or formula straight from the fridge. Now ds#2 was just the opposite.


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## LadyCatherine185 (Aug 12, 2008)

I only read the first pages of replies, so forgive me if I am restating something.

My DS did the exact same thing your DD was doing, and it _was_ silent reflux. Same fussy/crying behavior during the day, but nursed fine at night. Prevacid was the magic bullet for him, but only after being on it for _2 weeks._ I would try different medications, if you have not already. He also had several food intolerances, dairy being the biggest one. I would work on cutting out the top 8 allergens.

A few things that helped my DS to nurse until we figured out the cause-- rocking/bouncing while nursing and nursing standing up. He would always nurse best right after waking up/still sleepy.








I hope you get this figured out soon!!


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## PatioGardener (Aug 11, 2007)

Quote:


Originally Posted by *DeChRi* 
Nursing seems uncomfortable to her. I can get her to latch on, nurse nurse for 60 seconds (latches, letdown kicks in, good flow going), then suddenly gets agitated and pulls off and screams.

what does she look like when she does this? my guy popped off and arched back with his head to one side. the paediatrician said it was classic reflux behaviour. he's on prevacid twice a day. we are thinking of going to 3x/day. here is the dosing: http://www.marci-kids.com/dosing.html








to you


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## LadyCatherine185 (Aug 12, 2008)

Quote:


Originally Posted by *PatioGardener* 
what does she look like when she does this? my guy popped off and arched back with his head to one side. the paediatrician said it was classic reflux behaviour. he's on prevacid twice a day. we are thinking of going to 3x/day. here is the dosing: http://www.marci-kids.com/dosing.html








to you

we also gave my DS his prevacid twice a day for awhile.


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## FlipMom23 (Dec 15, 2008)

I haven't had time to read all the posts, but it sounds like she totally has a food allergy!! My son was exactly the same. Does your dd happen to have runny stools (like even moreso than a regular bf stool)? Stuffy nose? Spit up? My son had all those symptoms (especially the crying - ugh!) and had a milk, egg, and soy allergy. My current nursling cried and spit up due to the dairy, egg, and peanuts I was eating. Once I figured it out, they were better within a matter of days. And the longer I went without eating it the better they got.

I know how awful that is... I hope your elimination diet works, and I really think it will!


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## DeChRi (Apr 19, 2002)

I've read through the new replies on my phone since I can't seem to find a time to open up the computer, so I apologize if I miss something! I'm going to go back over them once the little ones are a bit more calm (like 2014, lol).

Right now she is taking Prevacid 2x daily (15mg morning and 15mg evening). She has been doing this for 12 days now. During the day time she seems to be very similar in symptoms to my other DD who had reflux (cept DD2 was projectile, not silent), BUT she is soooo fine at night. My last DD was the worst at night.

As far as food allergies...she does seems a little congested all the time, but here is where I get all confused. My last DD was always congested from the contant spitting up that made it's way into her nasal cavity. and she cried then, causing more gas.

So the whole cause/effect thing throws me. Is it reflux & the other things are symptoms of that and we need to stay the course w/ medication options? Is it a food allergy causing everything and I'm dosing her up w/ Prevacid for nothing? She is on day 5 of infant probiotics as well. Today is day 5 of the elimination diet for me...NOTHING potentially allergenic at all. Clean as clean can be. My hope is that if it is food, there will be SOME noticable difference very soon. I'm tolerating the diet okay, mainly because I'm too worn out to really care.









Her poop seems pretty normal. Yellow, she doesn't seem uncomfortable prior to pooping, but she only goes every 4-6 days...not a daily pooper.

Tuesday will be 2 full weeks on Prevacid and a full week on the elimination diet and probiotics. I'm praying we have an answer.

I do know that her non-nursing random screaming fits are gas/gut related. Maybe more than one thing going on? It just makes me sad that she is never content. She never just sits there happy. Even when she is not crying for a period of time, it requires a sling, binky and walking about. I feel like she is missing out on discovering the world as she is upset so often.









Note- the last 24hrs have been near "normal" nursing patterns. If nothing else, having a day like that makes me feel good.


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## Igraine (Jul 1, 2006)

I had an overactive letdown that really bothered my ds. He has terrible gas, blew out his diapers several times a day.....and lots of crying. And he really started to hate nursing. I was a wreck because he did not sleep well for months. He also hated co-sleeping so that did not help either. I shall also mention he was an enormous baby! Even with all the pooping and projectile spitting up, he gained a lot of weight. At 4 months he was over 17 pounds.

I tried gas drops....all kinds of homeopathic remedies and none of that worked. After 3 to 4 months I was able to get him settled. What I did was pump first to get the sweet foremilk and to stash in the freezer, then with the intense letdown taken care of, ds was able to manage the milk better, get less foremilk and suffer less. It took a while and people were also trying to convince me to use formula. People also told me it was what I was eating. I eliminated lots of things and that made no difference.

I do not know if you have tried this or not.

Oh I just read your post from this morning! So glad things are improving.


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## 2boyzmama (Jun 4, 2007)

I think you're trying a lot of wonderful things with diet and meds. But I still am getting caught up in the fact that she takes the bottle so much better. I think it's possible more than just nipple preference.

If the diet and meds don't help after another week or so (or whatever period you set for yourself) then ask for a referral to an ENT. A GOOD ENT, not just any ol' ENT.

My middle son is a *mess* with ENT-related issues, and it's taken a long time to sort them all out. He had *5* lip ties (couldn't even see two of them until they got him into surgery), a narrow and high arched hard palate, a submucous cleft of the soft palate, dysphagia with aspiration, and velopharyngeal insufficiency with nasopharyngeal backflow. Some of those issues are more obvious than others, but all of them can easily be missed by a Ped or LC who just don't specialize in ENT related issues.


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## DeChRi (Apr 19, 2002)

Quote:


Originally Posted by *2boyzmama* 
I think you're trying a lot of wonderful things with diet and meds. But I still am getting caught up in the fact that she takes the bottle so much better. I think it's possible more than just nipple preference.

If the diet and meds don't help after another week or so (or whatever period you set for yourself) then ask for a referral to an ENT. A GOOD ENT, not just any ol' ENT.

My middle son is a *mess* with ENT-related issues, and it's taken a long time to sort them all out. He had *5* lip ties (couldn't even see two of them until they got him into surgery), a narrow and high arched hard palate, a submucous cleft of the soft palate, dysphagia with aspiration, and velopharyngeal insufficiency with nasopharyngeal backflow. Some of those issues are more obvious than others, but all of them can easily be missed by a Ped or LC who just don't specialize in ENT related issues.

I will definately keep this in mind. My mother actually works in an ENT office (she heads up their Audiology Dept) and they are some of the best ENTs in a large area. I will definately tap that resource. I was a very unhappy refluxy crying baby as well. For over a year. And I ended up having some extensive ENT related surgeries as an older child, all breathing/nasal cavity/throat related. My 11yo also, I think, needs to get in as she breathes horribly, causing chronic throat infections.


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## LadyCatherine185 (Aug 12, 2008)

Just wanted to say again, my DS who had silent reflux also nursed fine at nighttime. And it wasn't until 2 FULL weeks on Prevacid that we began seeing results.







Keep going Mama, you are almost there to see some answers! Also with the elimination diet, it can also take 2 weeks to see results.


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## DeChRi (Apr 19, 2002)

pumping at keyboard.....
Back with new pieces to equation. I've spent much of the last few days with various LLL help and my Dr. I covered base after base with the LLL leaders. At the end they said that short of staying on the elimination diet, I had "turned over every stone". So much for a magic bullet. We hit 2 wks on 30mg of Prevacid w/ no help. Did no bottles at all for days. Again, tried everything over the last 8 weeks as advised by LLL and Dr. I am on day 9 of the full on emilination diet. Eating 2100 calories a day of turkey, chicken, yellow/green squash, millet, rice, potatos, pears and water...no seasoning, nothing....made sure vitamins are vegan and free of everything, etc. Did 2 visits to chiro. Went back Monday to Dr and they did stool tests and stuff. Dr said her gut is really inflammed. Something has her extremely torn up. It was so bad by Monday....just non-stop screaming....been 7+ wks of this now and not getting better.

At that point I really felt like I had given everything a go. Even the hospital LC threw her hands up at me. So as of Monday I agreed to do 48hr on hypo-allergenic formula. Within 12 hours I had a new baby. She has gone from 12 hr of crying a day to about 20 min. She is smiling, looking around, cooing...it was DRASTIC and amazing. Once the 48 hrs past I nursed her and she spent the morning screaming bloody murder.

SO...I feel pretty good about my steps so far and do not regret the formula trial. Been pumping every 2hr around the clock and taking supps recommended and supply is superb at this point.

Next step...WHAT IN MY MILK IS CAUSING THAT BAD OF A REACTION????!!!!! And after 9 days of being milk-free (well, everything free) in my diet, shouldn't it be drastic? I just got off with the LC at the hospital and she is at the point of recommending a clinic in another state near here with a ped/LC specialist. Right now I am pumping every 2 hr, and working on a next step. Dr is recommending formula for the next 12 days until I hit 3 weeks on the elimination diet, then go back full force to breastmilk and see what happens. Given the severity of her reaction, lack of then wanting to eat due to pain, slow weight gain, etc....the LLL person didn't think this was a horrible idea actually.

At think point I am thinking through everything. She may reject the breast in 2 more weeks of bottles and I may be an exclusive pumper/bottle feeder. I may have weeks of reteaching her to nurse. I know in that aspect I am creating an uphill battle.

I am just looking for any other thoughts, suggestions, ideas, advice moving forward in this process.

Thank you.


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## PatioGardener (Aug 11, 2007)

so happy to hear you went with elemental formula, not soy as first suggested. Will think about this some more. it may take 3-4 weeks to clear cow protien (dairy and meat) out of your system.

you are working so hard for your little one - hang in there!


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## D_McG (Jun 12, 2006)

Doesn't the hypo formula have proteins that are broken down? It may not be something you can replicate with your own milk. I think you did the right thing and I hope you can figure out a next step that makes you feel at peace.

I nursed two kids with dairy/soy allergies. Actually DD had egg issues, too. It's about as much as I could handle. For me I said that if there was any other major issue (/food group) we'd be thankful for medical formula.

I'm sorry you're going through this and I know you'll work it out!


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## rightkindofme (Apr 14, 2008)

I have no advice, but I want to say that you are a superstar. You are working So Hard for your daughter and that is amazing and wonderful. I hope you feel proud of yourself.


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## Casha'sMommy (Dec 16, 2006)

OP, we had quite a rough go in the early days with ds. He's now 8 mo and doing really, really well.
I spent several weeks on elimination diet with some improvement. It wasn't until a couple months had gone by that we saw major improvement.

I saw drastic results when we finally determined that I also have some intolerances. Once my gut was healed we saw dramatic improvement in ds. I believe that if your own gut is irritated and not doing its job well then your lo is going to get proteins and such in your milk that can cause some problems. I think that's what happened with us.

Hope you get things figured out soon.
Keep the faith.







s


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## PGTlatte (Mar 7, 2004)

Quote:


Originally Posted by *DeChRi* 
Dr is recommending formula for the next 12 days until I hit 3 weeks on the elimination diet, then go back full force to breastmilk and see what happens. Given the severity of her reaction, lack of then wanting to eat due to pain, slow weight gain, etc....the LLL person didn't think this was a horrible idea actually.

Hi,

I know you are not sure exactly what the allergens are and my own experience with nursing an allergic child is limited to dairy only...but I wanted to share that when I had to totally eliminate dairy for our son, but never quit nursing, it took a full eight weeks to get it all out of my system, then out of his, before his allergic symptoms went away. So it can take a while. I hope that with the elemental formula/elimination diet combination, three weeks turns out to be long enough for you...I do not think it is too long. You are making a fantastic effort







.


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## sept04mama (Mar 3, 2004)

You mentioned you drink coffee. You probably don't drink it at night. Could it be a caffeine intolerance? My son cried for 12 hours the one time I had a Mt. Dew when he was nursing.

And I apologize if I am totally off- I haven't had time to read the other posts.


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## KayTeeJay (Jul 22, 2008)

Quote:


Originally Posted by *rightkindofme* 
I have no advice, but I want to say that you are a superstar. You are working So Hard for your daughter and that is amazing and wonderful. I hope you feel proud of yourself.

I second this--you rock, mama!


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## LadyCatherine185 (Aug 12, 2008)

You are doing an amazing job, and I really hope you get some solid answers soon. Could it be something you are eating _now_, even though they aren't "allergenic" that she is reacting to? Maybe the squash?


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## ktgrok (Jun 19, 2008)

Ok, so the hypoallergenic formula in a bottle worked. But didn't you say that your pumped milk in a bottle also worked? If so, it seems the factor is the bottle, not the formula. Or am I mistaken?


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## DeChRi (Apr 19, 2002)

Quote:


Originally Posted by *ktgrok* 
Ok, so the hypoallergenic formula in a bottle worked. But didn't you say that your pumped milk in a bottle also worked? If so, it seems the factor is the bottle, not the formula. Or am I mistaken?

when screaming she would stop tp eat from a bottle, but not to nurse. however, it didn't stop the screaming.


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## DeChRi (Apr 19, 2002)

Quote:


Originally Posted by *sept04mama* 
You mentioned you drink coffee. You probably don't drink it at night. Could it be a caffeine intolerance? My son cried for 12 hours the one time I had a Mt. Dew when he was nursing.

And I apologize if I am totally off- I haven't had time to read the other posts.

boy i wish! i've cut caffiene out totaly for a couple wks before and again this last week and notta.


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## jenfl (Oct 20, 2007)

You've done an amazing job and gone so much further than nearly any other person would. What a fabulous gift for your LO!









I really, _really_ hope you and another doc can track down the cause and get her back to the breast or your milk. But it's not a defeat to admit that your LO is one who needs elemental formula for some complex reason or combination of reasons. It's like medication -- there may be nothing that you can do to "fix" the need.

Good luck! I'm still amazed at how far you've pushed! Keep going!


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## Baby_Cakes (Jan 14, 2008)

Quote:


Originally Posted by *DeChRi* 

At think point I am thinking through everything. She may reject the breast in 2 more weeks of bottles and I may be an exclusive pumper/bottle feeder. I may have weeks of reteaching her to nurse. I know in that aspect I am creating an uphill battle.

This was one of my biggest fears when I had to pump for 12 days for newborn DD, and give her soy formula. She had a galactosemia marker and we were waiting for DNA tests, and I could not nurse her. I was terrified she would not go back to the breast. I know it is only anecdotal, but she took right back to breastfeeding. I had an LC lined up to help w/latch if needed, but in the end, we didn't need any help.

IMO, fight one battle at a time. Even if you do need help getting her back to the breast later, don't worry about it now. You will get there. I'm so, so sorry you're going through this. I know the heartache of bottle feeding your new baby when you didn't choose to, and having to pump around the clock. But I also know you can do this.


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## Casha'sMommy (Dec 16, 2006)

Quote:


Originally Posted by *DeChRi* 
boy i wish! i've cut caffiene out totaly for a couple wks before and again this last week and notta.









Are you drinking decaf? If so, I believe it has a fair amount of gluten in it.
May be something to consider.

Hang in there!


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## DeChRi (Apr 19, 2002)

Thank you all so much for the support. I didn't realize how emotionally hard this would be. When she is crying and my overwhelming instinct says NURSE and I can't.







On the bright side, DH and I have agreed to drop and drive to Nebraska and pay (outta pocket







) for the specialist help. I'm expecting a call back this morning.


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## Casha'sMommy (Dec 16, 2006)

s

Let us know what happens!


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## DeChRi (Apr 19, 2002)

I'm getting in tomorrow at 4pm!


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## jenfl (Oct 20, 2007)

Amazing news!!


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## MamaJenese (Aug 14, 2006)

I have nothing to add except you are a rock star. In the end you will know you did everything in your power and 99% more then most people no matter what the outcome. You have one lucky baby there to have a Mama like you.


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## sahmmie (Jan 13, 2008)

It's very rare in infants, buy maybe she's lactose intolerant like little Josie Duggar. I was shocked to hear about Josie being lactose intolerant because it is so rare in infants. Is the formula you are giving her lactose free?

Just curious, what form of Prevacid is she on? If it's the compounded version, it's not always compounded properly rendering it useless.


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## Terrilein (Jan 9, 2007)

Got my fingers crossed DeChRi that the specialist can help!


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## luckymamaoftwo (May 25, 2010)

Quote:


Originally Posted by *DeChRi* 
I've read through the new replies on my phone since I can't seem to find a time to open up the computer, so I apologize if I miss something! I'm going to go back over them once the little ones are a bit more calm (like 2014, lol).

Right now she is taking Prevacid 2x daily (15mg morning and 15mg evening). She has been doing this for 12 days now. During the day time she seems to be very similar in symptoms to my other DD who had reflux (cept DD2 was projectile, not silent), BUT she is soooo fine at night. My last DD was the worst at night.

As far as food allergies...she does seems a little congested all the time, but here is where I get all confused. My last DD was always congested from the contant spitting up that made it's way into her nasal cavity. and she cried then, causing more gas.

So the whole cause/effect thing throws me. Is it reflux & the other things are symptoms of that and we need to stay the course w/ medication options? Is it a food allergy causing everything and I'm dosing her up w/ Prevacid for nothing? She is on day 5 of infant probiotics as well. Today is day 5 of the elimination diet for me...NOTHING potentially allergenic at all. Clean as clean can be. My hope is that if it is food, there will be SOME noticable difference very soon. I'm tolerating the diet okay, mainly because I'm too worn out to really care.









Her poop seems pretty normal. Yellow, she doesn't seem uncomfortable prior to pooping, but she only goes every 4-6 days...not a daily pooper.

Tuesday will be 2 full weeks on Prevacid and a full week on the elimination diet and probiotics. I'm praying we have an answer.

I do know that her non-nursing random screaming fits are gas/gut related. Maybe more than one thing going on? It just makes me sad that she is never content. She never just sits there happy. Even when she is not crying for a period of time, it requires a sling, binky and walking about. I feel like she is missing out on discovering the world as she is upset so often.









Note- the last 24hrs have been near "normal" nursing patterns. If nothing else, having a day like that makes me feel good.









I could have written this myself. Am following your postings and keeping fingers crossed that the specialist will help!


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## Ruthla (Jun 2, 2004)

My guess is one of two things: either it hasn't been long enough for the ED to have helped yet (say, you need to be off dairy for 3-4 weeks until the dairy proteins are gone, and it simply hasn't been long enough yet) or you're still eating something that bothers the baby. Just going by my knowledge of the Blood Type Diet, potatoes are an "avoid" for any body with A, AB, or O blood type, and chicken is an "avoid" for people with B or AB blood. Is it potatoes or sweet potatoes that you've been eating? If it's been white potatoes, then I'd suggest switching to sweet potatoes. You also may do better eating only turkey, rather than turkey and chicken.


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## Baby_Cakes (Jan 14, 2008)

Quote:


Originally Posted by *DeChRi* 
Thank you all so much for the support. I didn't realize how emotionally hard this would be. When she is crying and my overwhelming instinct says NURSE and I can't.









I so hear you on this. Stay strong. Hold her skin to skin when you bottle feed her. Smile at her, love on her. She knows you are her mama, and will love you no matter how you feed her.


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## PatioGardener (Aug 11, 2007)

sending you good vibes, and wishing you good luck!


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## 2boyzmama (Jun 4, 2007)

As an LLL leader, I was taught that it is an extremely small number of women who truly can't breastfeed, and extremely small number of babies who truly can't tolerate breastmilk. In your case, it appears that you fall into that extremely small percentage. I do still hope that it is salvageable, that the elimination will work!

One thing to consider...it might only be that her gut needs time to heal from the bombardment it was getting. So if you stay on the elimination diet for a while, keep her on the elemental formula, then perhaps start introducing your breastmilk very slowly (1oz BM, 3oz formula, for example) maybe she will tolerate it better. Inflammation is a cycle, once it starts, it's very hard to stop it. She might just need time to heal a little, then she may be able to tolerate your milk, and eventually even tolerate you having more foods in your diet.

Please be realistic with yourself, too. You can't live on chicken, turkey, and squash forever! Nutritionally and emotionally. And after the hellish time you've just had, your emotional health is just as important right now.

I had to cut dairy and soy for my second son, and there were moments when I was awake at night with a sick crying baby (he was very very sick as an infant with numerous birth defects) and I would be crying right along with him because I just wanted some <bleep>ing ice cream! I knew, logically, that ice cream wouldn't fix any of his problems, but it sure seemed like heaven's gates to me. It was like I couldn't handle stressing over his illness, so I stressed over my diet limitations instead. It was very hard. I remember sitting in the surgery waiting room when he was having surgery once, and I was trying to hide tears, and someone came up to me and asked if I needed any help. I politely said no, but inside I was screaming "you know what I want? I want to put some creamer in my coffee!!" It's very strange the things you fixate on when stress is overwhelming.

Please take advantage of this cry-free time to rest and bond with her, and also to pay attention to your husband and older child. You've all been through a lot.


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## crunchy_mommy (Mar 29, 2009)

Quote:


Originally Posted by *DeChRi* 
Eating 2100 calories a day of turkey, chicken, yellow/green squash, millet, rice, potatos, pears and water...

Wow you are amazing, I am on a gluten-free soy-free corn-free vegan diet and I thought THAT was tough!! But I wonder about the squash & potatoes. I know when I was over on the Allergies forum asking about elimination diets, a couple people mentioned potatoes or squash causing problems. I don't know if it would be worth it to you to cut out those 2 more foods for a few days, or not (you must be starving!!! drink some of that elemental formula yourself!!)

Anyway I don't have any other suggestions. My DS was a screamer for his entire first year+ so I know the torture that is... though he also cried all night, basically 'round the clock, and I never felt it was a medical issue but more a temperament issue for him. Either way -- super challenging -- and I just wanted to offer you lots of hugs.


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## crunchy_mommy (Mar 29, 2009)

One more thought and this might be absolutely insane & medically 'stupid' but I'll throw it out there just in case: You could try giving her small amounts of the foods (or extracts of the foods) directly into her formula (one at a time obviously) & see how she reacts?? Then you don't have to wait for something to cross into (or out of) your milk & you could zero in on whatever she's reacting to much more quickly. I don't know if that's at all feasible with such a young baby but the idea just popped into my head & figured I'd mention it.


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## DeChRi (Apr 19, 2002)

Quote:


Originally Posted by *2boyzmama* 
As an LLL leader, I was taught that it is an extremely small number of women who truly can't breastfeed, and extremely small number of babies who truly can't tolerate breastmilk. In your case, it appears that you fall into that extremely small percentage. I do still hope that it is salvageable, that the elimination will work!

One thing to consider...it might only be that her gut needs time to heal from the bombardment it was getting. So if you stay on the elimination diet for a while, keep her on the elemental formula, then perhaps start introducing your breastmilk very slowly (1oz BM, 3oz formula, for example) maybe she will tolerate it better. Inflammation is a cycle, once it starts, it's very hard to stop it. She might just need time to heal a little, then she may be able to tolerate your milk, and eventually even tolerate you having more foods in your diet.

Please be realistic with yourself, too. You can't live on chicken, turkey, and squash forever! Nutritionally and emotionally. And after the hellish time you've just had, your emotional health is just as important right now.

I had to cut dairy and soy for my second son, and there were moments when I was awake at night with a sick crying baby (he was very very sick as an infant with numerous birth defects) and I would be crying right along with him because I just wanted some <bleep>ing ice cream! I knew, logically, that ice cream wouldn't fix any of his problems, but it sure seemed like heaven's gates to me. It was like I couldn't handle stressing over his illness, so I stressed over my diet limitations instead. It was very hard. I remember sitting in the surgery waiting room when he was having surgery once, and I was trying to hide tears, and someone came up to me and asked if I needed any help. I politely said no, but inside I was screaming "you know what I want? I want to put some creamer in my coffee!!" It's very strange the things you fixate on when stress is overwhelming.

Please take advantage of this cry-free time to rest and bond with her, and also to pay attention to your husband and older child. You've all been through a lot.

One thing you said here jumped out. When I spoke w/ the woman today, at the place in Lincoln, she asked if I'd ever had an issue with oversupply/overactive letdown. I said yes, that my first call to LLL was because of this and then I started block feeding. She said ghat because of the foremilk/hindmilk imbalance this causes, it damages the gut. This will many time cause food sensitivities in babies that otherwise were not "allergic" to something, but instead, now the damaged gut can't process correctly.

Lots to talk about w/ her tomorrow, but her point syncs well with yours.


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## PatioGardener (Aug 11, 2007)

Quote:


Originally Posted by *DeChRi* 
One thing you said here jumped out. When I spoke w/ the woman today, at the place in Lincoln, she asked if I'd ever had an issue with oversupply/overactive letdown. I said yes, that my first call to LLL was because of this and then I started block feeding. She said ghat because of the foremilk/hindmilk imbalance this causes, it damages the gut. This will many time cause food sensitivities in babies that otherwise were not "allergic" to something, but instead, now the damaged gut can't process correctly.

Lots to talk about w/ her tomorrow, but her point syncs well with yours.

very interesting. pls fill us in when/if you have time after your appointment/talk.

nak


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## KatieBonita (Mar 21, 2009)

This suggestion is pretty "out there" but if you're not sure what she's allergic to, you could ring a kinesiologist and see if they can help. I talked to one who specialises in children and he suggested DD had a specific allergy. I took itout of my diet and she settled within a couple of days. Some can check you (as a pair) for different allergies.


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## DeChRi (Apr 19, 2002)

Thanks again for all of the advice. I haven't had time in days to sit down at the computer, so I've been reading via my phone. Its hard to reply on here, but I have read and jotted down every single suggestion/idea/advice etc, even if I didn't comment directly on it, so thank you!

Heading out at noon, appt at 4pm, then 3.5hr in the car again so I will update on the drive. I am really anxious to visit w/ the Dr. The LC at our hospital had wonderful things to say about her knowledge and expertise in breastfeeding/allergy issues. When I went to the website the first thing I noticed was a note that said they will not refuse anyone based on an inability to pay. I'll definately be making a donation there if finances allow, this year. Pretty cool. So hoping to get answers. It just all makes no sense. 11 days on diet now and I nursed her yesterday for 10min and withing the hour she was stiff as a board, screaming, writhing, for 2 hours straight. Crashed out and was fussy the rest of the evening. I just don't get it!!


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## khaoskat (May 11, 2006)

Quote:


Originally Posted by *DeChRi* 
Does anyone know, if I did a total elimination diet, how long it would before I notcied some kind of difference? I know it takes a couple weeks to truly eliminate some things from the system, but should there be a noticable difference of some kind within day?

If it is horrible gas, anything other than Mylecon?

And thanks so much for the prompt replies. I very much appreciate it. If nothing else it helps back me away from the edge of the cliff.

Have you tried Gripe Water. I get mine at Walgreens, it has no alcohol, and I get the one that has fennel, chamomile and ginger and it has worked great on my last two children for their gas issues.


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## jenfl (Oct 20, 2007)

How did things go?


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## DeChRi (Apr 19, 2002)

Started typing the below last night, fell asleep. Will add more this afternoon!-

Home! Oh my is 6 hrs on the road a long time w/ an unhappy baby.

So much to tell...spent an hour and a half w/ Dr who was wonderful. I'll give the short version tonight then will get on tomorrow and talk about how we got to that conclusion.

She thinks there are a few things going on. The key is going to be taking them one at a time and figuring out cause/effect,etc.

I started w/ an over-supply and overactive letdown. Baby got used to gulp gulping tons of instant milk and being done in 3 min. This casue the foremilk/hindmilk imbalance which we knew and solved w/ block feeding. That's when things ended up going downhill. 1) her gut got messed up from processing the excessive foremilk, causing her general gut discomfort, but also causing her to have a harder time breaking somethings in my diet down. Potentially. She thinks that once I block fed and my supply because "normal", baby didn't like it because she had to wait for letdown and it was pokey. But she still kept w/ her 3 min nursing spells. So she was hungry. Enter the hungry, try to latch, no immediate milk, cry, cycle. She was crying but finally latched on w/ an SNS to get her milks fast. I"d tried that same tactic w/ a syringe, but she was cool w/ the tube. My milk let's down about 15 sucks in, so not too long, but she is impatient. I was pretty amazed that after 7 weeks of trying to get her to nurse, she didn't just adapt to the non-over-active let down. Enter other things. Also has a slight reflux she thinks, so back on Prevacid for now. And a food sensitivity, but she doesn't think it's dairy.

So step 1) is for the next 48hrs feed her as much as she wants of whatever she wants how she wants. If she shuns the breast during the day, give her a bottle. Is she will nurse all night, Great. Just keep her stuffed, will help heal her gut. Working the SNS too, if it helps her latch. During this time I'm actually supposed to pump pump and such to try and reestablish an over-supply and super letdown, to test if her irritation w/ my breast is the flow. So I'm attacking that now too.

So Dr is calling me Monday, after 48hr of full tummy baby, prevacid, SNS, supply increasing, etc, to see if she is happier. THEN we start attcking the food sensitivity. So I am to stay on the diet until then. She does think that whatever is bothering her in my diet is due to an irritated gut and not a true allergy, if that makes sense. So her hope is to identify it, eliminate it, heal babe's gut, then probably reintroduce.

That place was amazing. She sent me home w/ the SNS which was $40 and said try it, if I hate it send it back and they'll sterilize it. If I was to keep it, just send them $40.

She was able to watch her drink breast milk then go right into scream fit. So she does think step 2 is food allergies. But she thinks we need to establish cause and effect so we are starting w/ one thing and going from there.


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## eclipse (Mar 13, 2003)

That sounds like an awesome, one of a kind doctor. I hope you guys figure out the whole puzzle soon


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## frugalmama (Sep 12, 2009)

We went through this too with my DD- turned out to be several food allergies to things not in the top 8 allergens.


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## PatioGardener (Aug 11, 2007)

wow! what a clinic! sounds like a super plan - and you sound so positive actually having a plan. you're awesome, Mama, and it sounds like your DH is too. I hope Monday brings a happy (stuffed) baby ready to nurse


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## DeChRi (Apr 19, 2002)

I do feel better having a plan. She nursed all night but not today. Flat refusal via screaming. But bottles of breast milk help. Not as happy as the formula did since there is something that bugs her, but much better. Just gotta get her convinced to nurse during the day.

Frugalmama-what ended up bothering your little one?


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## frugalmama (Sep 12, 2009)

Quote:


Originally Posted by *DeChRi* 
I do feel better having a plan. She nursed all night but not today. Flat refusal via screaming. But bottles of breast milk help. Not as happy as the formula did since there is something that bugs her, but much better. Just gotta get her convinced to nurse during the day.

Frugalmama-what ended up bothering your little one?

Hers turned out to be Oats mostly, with coconut and tree nuts also causing it. She is now 4 and normal as can be except for a whole bunch of food allergies and tummy issues.

What you said about her sleeping all night too - DD did that when hers was at it's worst - she was so exhausted she could sleep through the tummy issues mostly.


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## myk (Nov 24, 2006)

it sounds like you're on a good plan now. i had to combo feed breast milk/hypoallergenic formula when my first was born, and it was really emotionally draining. ours resolved faster than yours, thank goodness.. i just wanted to say hang in there. it's NOT easy. you're a great mom - stay strong!


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## 2boyzmama (Jun 4, 2007)

You HAVE to share the name of this dr!!! Will she do consults via phone or records review I wonder?


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## Casha'sMommy (Dec 16, 2006)

DeChRi-Just wanted to say how wonderful it is to "hear" the calm in your posts.
So happy for you that you found such a wonderful doctor and have such a great plan in place.


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## DeChRi (Apr 19, 2002)

Man, set back after set back. We came home from Nebraska, the next few days went well. She nursed well, my milk must have been well detoxed after 2+ weeks of nothing but turkey/chkn/millet/rice/squash. Last Monday in the middle of the nice I woke up starving, feeling totally depressed an deprived, had no turkey cooked up and ate two big bite of my favorite protein bar (which included whey, casien, soy, egg product, nuts, you name it) in my half asleep-ness. Within hours she was congested and screaming. I felt horrible. It went on all week. I went back to 2100 cal a day of the plain turkey, millet, rice, squash. She was so miserable. I was miserable. Even at 2100 calories of gutting that down, I am 12lb lighter than I was 2.5 wks ago (and I was 5'8" 145lb, muscular then, so not padded enough for a large weight loss). Finally, after talking to the Dr, she said that it takes time for the gut inflammation to subside. At wits end again we are 36 hrs into a 48 hr streak of hyperallergenic formula to calm her gut, me pumping every 2 hrs around the clock to keep up supply. I am exhausted, feel like I am wasting away, feel horrible guilt for giving my baby toxic milk from two bites of a stupid bar, and daunted at the thought of not being able to eat those things long term, when they made up 90% of my diet. After 36 hrs on formula she is SO happy, content, smiling and comfortable. I am doing formula 1 monre day, then will try nursing again and hope my milk is "clean" enough to not hurt her, then over the course of weeks will slowly add back in foods and pray for the strength not to have even the tiniest slip up, because it causes her such misery.

Burnt out. My 2yr old is totally despondent from the screaming this week and effort all of this is taking. I am growing resentful of every meal I make when I am eating unflavored turkey and rice every 2 hours all day.

I never thought that after 6.5yr of nursing two others, that #3 would end up like this.


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## jenfl (Oct 20, 2007)

You're doing an AMAZING job. It's a big victory, at least, that you seem to have narrowed down that it's a food issue.

You're strong, and you CAN do this for your LO.

On the flip side, you've already given her a fabulous start. If dealing with these issues is really making life miserable for you and your family, it's a viable option to move to the formula.

(And I know what you mean about not thinking that things would end up like this. My son has a posterior tongue tie that took months to get diagnosed and can't be fixed. We fight through the pain and frustration every day.)


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## crunchy_mommy (Mar 29, 2009)

Quote:


Originally Posted by *jenfl* 
On the flip side, you've already given her a fabulous start. If dealing with these issues is really making life miserable for you and your family, it's a viable option to move to the formula.

This. I'm not one to advocate formula in the face of nursing troubles but this seems to go beyond 'normal' challenges, it's on a whole 'nother level. Though I have no doubt you can get past this with a lot of hard work, strict adherence to the diet, etc. you need to make sure to weigh whether it's still worth it to you too... (I'm not trying to encourage you to give up or keep going, just to weigh the benefits vs. the toll is taking on you & your family & even your LO.)







it sounds like a nightmare. Hang in there & keep us posted...


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## Youngfrankenstein (Jun 3, 2009)

You have tons of great advice. I am wondering though if you're pumping too much. Maybe cutting back to every 3 hours during the day and letting yourself have a midnight to 6 a.m. break from pumping. Maybe lo will nurse at that time or not. It sounds like your supply is well established at this point and I think it may help your stress level.


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## eclipse (Mar 13, 2003)

Quote:


Originally Posted by *Youngfrankenstein* 
You have tons of great advice. I am wondering though if you're pumping too much. Maybe cutting back to every 3 hours during the day and letting yourself have a midnight to 6 a.m. break from pumping. Maybe lo will nurse at that time or not. It sounds like your supply is well established at this point and I think it may help your stress level.

I agree with this. I found when I was pumping that a good night's sleep (or a decent night's sleep) had major impact on output - If I got a good block od sleep, I actually pumped more milk total than if I had pumped during those times.

Like a PP said - now you know it's food. It's crappy that your dd has to be in pain, but now you know, and that's not a bad thing. I'm wondering if, once you give yourselves a few weeks on the diet and allow her gut to heal, you should start eating small portions of some of the foods believed to be problematic - start with the protein bar ingredients, one at a time, one bite a day to start with. If it seems like she does okay with one, go back to back to the TED for a couple of days, and then go to another ingredient. I say go back to the TED, even with a food that seems to work, just so that you're trying things in complete isolation. Once you get through the major allergens, you might know exactly what's affecting her - and even if you don't, being able to eat eggs or gluten or nuts would probably make you feel loads better.


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## Casha'sMommy (Dec 16, 2006)

Sorry to hear things aren't going so well. You're doing really great and I know there is a light at the end of the tunnel.

I was thinking can you have avocado? I was thinking you might add that to include a little extra fat in your diet. That is how I managed through our ed. The best part was that it took away every craving for cheese and chocolate.


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## kriket (Nov 25, 2007)

Quote:


Originally Posted by *crunchy_mommy* 
This. I'm not one to advocate formula in the face of nursing troubles but this seems to go beyond 'normal' challenges, it's on a whole 'nother level.

You are leaping though some serious hoops! I don't think I could do it. You are a very very strong mom!


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## 2boyzmama (Jun 4, 2007)

Boy mama do I understand the depressive state that comes from a sick baby, a stressed mama, and not even being able to have some comfort food. Ice cream was what I wanted, so desperately. I remember many a night sitting awake, holding my screaming sick baby, and just crying and crying, wanting some ice cream.

We made it, but we did not have to restrict like you are. What you are doing goes above and beyond ANYTHING I've ever heard of. My son's food issues were much more minor, it was his physical defects that were harder to overcome. But even those we made it through.

Please remember your mental, physical, and emotional health in all of this. MDC is probably the most "crunchy" place on the internet, yet none of us would judge you if you decided at some point to stick to the formula. God knows you have done 100000% more than most women would ever do.

Sometimes, in the face of medical issues, it is okay to have to rely on medical food. That's why it exists. It does not make you a failure. Something is going on in her little gut, and if the only solution that allows her to stay on your breastmilk is also causes you to seriously suffer, then you need to weigh your choices.

I'm glad you have a plan (another day of formula, then back on the breast, then slowly carefully adding foods in) but please know that if you end up relying on the formula, it is not the end of the world. Also, remember your milk can still be useful to others if you wanted to donate it.


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## DeChRi (Apr 19, 2002)

Thank you all so much for the support...it really means so much. We just finished 48 hrs of formula and Baby E is soooo happy. It's amazing, the turnaround. I'm now 3 wks into the elimination diet and almost a week since my one lapse of a couple bite of protein bar. Now that her gut is on the mend again and my milk is "cleaner", I'm going to go half and half for a few days...nurse during night and formula during day, to give her a little time to heal while I finish clearing the system. Then this coming Thurs-Sun I'm going to nurse 100%. If she is still happy I am going to start to very slow add in of foods. If she falls apart after the nursing streak, I think I may be done. Pump and freeze for awhile and hope to give to her when she is one-ish for awhile of something, if her gut is better.


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## DeChRi (Apr 19, 2002)

I meant to comment on adding things back in. The Dr I'm working with feels pretty strongly about keeping it to just those foods (turkey/lamb/yellow and green squash/millet/rice/potatos/pears) for at least the next week. Now that we have done this 2nd 48hr formula test that seems to work miracles on her, she doesn't want to upset her healing gut. She wants to get a solid, several day guage on how she doesn't just nursing w/ purely clean milk. From there I have a very specific, day by day list to add in a set order, introducing a new one every 3-4 days over 50-60 days total, with the dairy, soy, nuts, etc being at the end. I could really hang in there as long as I can get another solid protein source that isn't meat. While we do eat meat here (are blessed w/ great access to affordable free range varieties), I can only eat so much. It's hard on me from a hobby standpoint, as my biggest hobby/interest/sanity keeper is a decade long bodybuilding/weightlifting regimine. So I work really hard to maximize that w/ high levels of protein. My guess is that may be why it was so hard to clear my system...for yrs I've eaten 7 meals/day and they each have large protein servings, 5 of which are scoops of whey protein, yogurt mixed w/ extra whey, cottage cheese, 6-8 egg whites, cheeses, etc, etc. Plus 3-4 natural peanut butter servings daily to get high enough calories in.

I am totally not an allergenic person, but my diet was one that would TORTURE an allergenic breastfeeder.

And selfishly, it is making it that much harded to alter my diet, since I've now had to elminate about 95% of what I'm used to eating.

Just whining now...but am pretty determined to see this through a bit further, assuming I can keep the calories up. I've upped my millet intake and did get to okay to swing some plain rice milk for calories.


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## maddymama (Jan 5, 2008)

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


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## DeChRi (Apr 19, 2002)

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.


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## DeChRi (Apr 19, 2002)

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.


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## jenfl (Oct 20, 2007)

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


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## DeChRi (Apr 19, 2002)

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.


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## D_McG (Jun 12, 2006)

Quote:


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!


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## spughy (Jun 28, 2005)

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.


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## Nicole730 (Feb 27, 2009)

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.


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## DeChRi (Apr 19, 2002)

Quote:


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.


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## HonkyTonka (Nov 18, 2009)

You're my hero.


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## DeChRi (Apr 19, 2002)

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.


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## cschick (Aug 28, 2007)

Quote:


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.


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## DeChRi (Apr 19, 2002)

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.


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## DeChRi (Apr 19, 2002)

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.


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## 2boyzmama (Jun 4, 2007)

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.


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## DeChRi (Apr 19, 2002)

Quote:


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.


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## 2boyzmama (Jun 4, 2007)

Quote:


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!!!!!


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## lalemma (Apr 21, 2009)

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.


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## myk (Nov 24, 2006)

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.


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## dogretro (Jun 17, 2008)

Quote:


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!!!


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## PatioGardener (Aug 11, 2007)

Quote:


Originally Posted by *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.


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## elanorh (Feb 1, 2006)

I'm so sorry, this is such a difficult road!

I don't think I mentioned this in my earlier post long ago in this thread - but in case it's helpful for you:

With dd1's severe reflux/allergies, our Pediatrician consulted with specialists and they agreed with her, at the point that dd1 was hospitalized, that her allergies and reflux had cascaded together to the point where she couldn't digest any proteins at all. At that point, she was three months old and had gained only a little over a pound since birth (despite good post-weights with the LC after nursing etc. etc., she was getting in adequate breastmilk) --- they had me pump for a month while she was given exclusive Neocate (the only formula she could tolerate). After a month, she had gained well enough and was healthy enough that the Pediatrician told us to try going back to breastmilk. At that point, she was able to tolerate the *very same breastmilk* she hadn't been able to digest a month prior - once back on 100% breastmilk (still on the Big 8 Elimination Diet minus legumes as well) - she gained even better than she had on the Neocate. She was still allergic to dairy/soy/egg/wheat/legumes (outgrew those allergies gradually over the course of the following two years, except the egg which persists) --- but as long as I avoided them, she was fine.

I only share this in case it's something you want to try. And having exclusively pumped while formula-feeding and rebuilding my supply for over a month and then mostly-pumped for quite a bit longer than that --- and recognizing the dietary issues you're already juggling -- it's entirely understandable if you don't want to attempt what I did.








again - I'm so sorry - this is such a difficult road and until someone has walked it, there's no way to understand how awful it is. I wish I could help somehow.


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## DeChRi (Apr 19, 2002)

Quote:


Originally Posted by *elanorh* 









I'm so sorry, this is such a difficult road!

I don't think I mentioned this in my earlier post long ago in this thread - but in case it's helpful for you:

With dd1's severe reflux/allergies, our Pediatrician consulted with specialists and they agreed with her, at the point that dd1 was hospitalized, that her allergies and reflux had cascaded together to the point where she couldn't digest any proteins at all. At that point, she was three months old and had gained only a little over a pound since birth (despite good post-weights with the LC after nursing etc. etc., she was getting in adequate breastmilk) --- they had me pump for a month while she was given exclusive Neocate (the only formula she could tolerate). After a month, she had gained well enough and was healthy enough that the Pediatrician told us to try going back to breastmilk. At that point, she was able to tolerate the *very same breastmilk* she hadn't been able to digest a month prior - once back on 100% breastmilk (still on the Big 8 Elimination Diet minus legumes as well) - she gained even better than she had on the Neocate. She was still allergic to dairy/soy/egg/wheat/legumes (outgrew those allergies gradually over the course of the following two years, except the egg which persists) --- but as long as I avoided them, she was fine.

I only share this in case it's something you want to try. And having exclusively pumped while formula-feeding and rebuilding my supply for over a month and then mostly-pumped for quite a bit longer than that --- and recognizing the dietary issues you're already juggling -- it's entirely understandable if you don't want to attempt what I did.








again - I'm so sorry - this is such a difficult road and until someone has walked it, there's no way to understand how awful it is. I wish I could help somehow.

Oh boy, you are so amazingly committed!









I've thought about this often, and would probably continue pumping as much as possible just in case she eventually shakes whatever ails her.

I also wonder if I commit to keep the Big 8 out for a few months, then nurse her at night when she is peaceful, and formula feed during the day, if that would strike a balance w/ her gut.

Then again, I'm still not at all convinced she is allergic. Once we rule out ENT issues this morning (heading there soon) then I'll take a long hard look at diet/lifestyle/sanity etc and go from there.

I'd love to do something like you did, and amazing job on sticking with your little one.


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## jenfl (Oct 20, 2007)

Sending good vibes for an informative ENT visit!


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## DeChRi (Apr 19, 2002)

ENT says normal normal normal. After 36 hrs on pumped brstmilk from bottle she is violently puking up everything she eats, screaming in a horrible way, throwing up phlem, and just miserable. My 2 yo is on total meltdown.

I'm deciding right now that I won't go back to the state things are right now. Had to call DH home from work. Cancelled a 2nd Dr appt I couldn't go to, etc.

I'm going back to formula. I'm going to pump a few times a day. Probably going to stay off of dairy/soy. After awhile I may slip in a night nursing if she wants, and if it causes no harm once a day, down the road. My biggest thing holding me back is thinking....what if she outgrows this at 6 mnths? But I can't do this for 3 more months.

I get right to this "so done" point and feel total relief, then the thought of not nursing her into toddler years, after ouchies happen, during the night, etc...just breaks my heart and I can't help but think there HAS to be another answer.


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## HonkyTonka (Nov 18, 2009)

just a suggestion if you are in 'look for an answer mode' again, you could contact Jack Newman's breastfeeding clinic: http://www.nbci.ca/index.php?option=...d=62&Itemid=33
and get them on your case. You start by sending a short email describing the problem. Might be worth a shot.

I'm not sure I could do what you've done. So dedicated!


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## DeChRi (Apr 19, 2002)

I have decided a few things definately:
1) Baby E's gut needs peace
2) Family needs peace
3) I need to eat
4) We all need to regroup
5) I'm not 100% ready to throw in the towel

So I think the answer is to take a few days, let Baby E recover on HA formula and be happy, I'm going to expand my diet, still limiting the top allergens, but not living on turkey and millet. I'm going to pump as much as I can to still allow me to sleep and take care of my kids. In a week or so, I may see if I can squeeze in a single nighttime breastfeeding. Maybe I'll have regrouped enough then to feel like I can reassess, and still have some supply to work with. Maybe I re-eliminate. Maybe her gut will be happier then. Maybe I'll know that the HA is the right choice.

But right now we all need a time out & I'm going to pump as much as I can to have to option to try again at some point, even if its a ways down the road. If I can get a good freezer stash for when she is several mnths older (and maybe can tolerate) or can even maintain a once/night BF-ing with a long term borderline limited diet or something.

So for now, time out. Then reassess when I no longer want to run screaming for the hills (and DQ).


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## crunchy_mommy (Mar 29, 2009)

That sounds like a great plan.


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## frugalmama (Sep 12, 2009)

Quote:


Originally Posted by *DeChRi* 
I have decided a few things definately:
1) Baby E's gut needs peace
2) Family needs peace
3) I need to eat
4) We all need to regroup
5) I'm not 100% ready to throw in the towel

So I think the answer is to take a few days, let Baby E recover on HA formula and be happy, I'm going to expand my diet, still limiting the top allergens, but not living on turkey and millet. I'm going to pump as much as I can to still allow me to sleep and take care of my kids. In a week or so, I may see if I can squeeze in a single nighttime breastfeeding. Maybe I'll have regrouped enough then to feel like I can reassess, and still have some supply to work with. Maybe I re-eliminate. Maybe her gut will be happier then. Maybe I'll know that the HA is the right choice.

But right now we all need a time out & I'm going to pump as much as I can to have to option to try again at some point, even if its a ways down the road. If I can get a good freezer stash for when she is several mnths older (and maybe can tolerate) or can even maintain a once/night BF-ing with a long term borderline limited diet or something.

So for now, time out. Then reassess when I no longer want to run screaming for the hills (and DQ).

Sounds like a plan to me.

If you don't mind me asking - what HAVE you been eating while on the diet? Perhaps your child is allergic to something you're still eating? People can be allergic to anything, even so-called hypoallergenic foods.


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## DeChRi (Apr 19, 2002)

Frugalmama- plain turkey, yellow/green squash, brown rice, millet, pears & sweet potatos.


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## frugalmama (Sep 12, 2009)

Quote:


Originally Posted by *DeChRi* 
Frugalmama- plain turkey, yellow/green squash, brown rice, millet, pears & sweet potatos.

Are those foods you were eating prior to starting the diet? If so are you eating them more or less now?

I know of several people allergic to millet personally and I've heard of allergies to every one of those foods on the kids with food allergies message boards.

For more background - what formula is your child using? Are there any history of auto-immune issues in your family? I know you said Baby E didn't seem to have any stool issues - can you describe stools prior to starting formula and afterward? When Baby E has an attack are there any other symptoms that go with {hard stomach, visible cramping, stiffness, gassy, etc}? What specialists have you seen? - I know ENT was mentioned but didn't catch any others.

Maybe there is something we're missing here. I'd almost wonder if Baby E didn't have EOS {http://www.eosinophilictucson.com/eo...disorders.html} or something similar.








I know this is hard and formula might be the best way to go for your family's sake. My DD nursed for a year and then spent another year on Elecare elemental formula which healed her gut enough that she can now eat regularly most of the time and go out in public without fearing food contact.


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## DeChRi (Apr 19, 2002)

Are those foods you were eating prior to starting the diet? If so are you eating them more or less now? - I ate turkey, brown rice, sweet potatos and squash...all before, although, of course not in the quantities required when those are the only foods that make up a full caloric intake. So I was eating all of those except millet, prior, but in lesser amounts.

I know of several people allergic to millet personally and I've heard of allergies to every one of those foods on the kids with food allergies message boards. Would you have additional advice, if I gather my sanity and opt for another go at an elimination diet, the most way to structure that?

For more background - what formula is your child using? We have used Similac Alimentum HypoAllergenic, when we do the 48 hours of gut relief for her. This was recommended by the ped we usually see, and also by one of the specialists we say. I am admittedly formula-not-smart, as my first two never had in supplementation in 6.5 yrs of nursing.

Are there any history of auto-immune issues in your family? None at all, on either side.

I know you said Baby E didn't seem to have any stool issues - can you describe stools prior to starting formula and afterward?
Let me clarify the amount of formula she has had, so this makes sense. She had no formula until a month ago (10 wks of age). Her stools were yellow, seedy, identical to the stools my other two always had...although by the time we went to formula the first time at 10 wks, they were 4-7days apart. Our normal ped said "normal", but the Dr we say that specialized in breastfeeding allergies said not. We have done 3 spurts of 48 hrs on formula, as well as some random bottles of formula. When I started the elimination diet I would nurse until the physical symptoms got so bad, we would do 48 hr again on the formula to help heal her gut. Her stools since starting formula had been a thicker, smoother, greenish/brown and super stinky. She never has any trouble passing them. The stools threw me a bit, from the allergy side, because I would think that if she was as violently miserable as she was, for so long, that her stools would have been messed up.???

When Baby E has an attack are there any other symptoms that go with {hard stomach, visible cramping, stiffness, gassy, etc}? Gas, gas, gas, hard stomach, visible cramping, stiffness, screaming...hours of those wide eyes, stiff as board, ragin screams. And when not screaming, she was being held in a million positions, bouncing, moving, binkying, etc... And before I started eliminating/supplementing, she spent weeks like this...in journaling the hours a day she spent screaming, writhing, miserable, we are talking 14-18 hours/days. It was really bad. The first 48 hr we did on formula was a total turn around. 98% symptom resolution, that fast.

What specialists have you seen? - I know ENT was mentioned but didn't catch any others. We started seeing our normal Dr, then moved on to the LLL folks her, as well as the hospital LCs. From there we went to Nebraska to a pediatrician that is also an LC and her specialty is allergies in breastfed babies. Next stop was the ENT. Not sure where to go now.

Maybe there is something we're missing here I feel like there is. It just does not make sense to me, that 3 weeks of that clean of eating (one screw up consisting of 2 bites of a protein bar...otherwise, totally clean), then I start breastmilk again and within 24 hours she was violently sick, screaming, and miserable again.

I'd almost wonder if Baby E didn't have EOS {http://www.eosinophilictucson.com/eo...disorders.html} or something similar. I'll read on this.








I know this is hard and formula might be the best way to go for your family's sake. For the next many days, it is for sure. Everyone needs some healing in this house, lol. I keep hoping that somehow it will play out well.

I am open to any suggestions at all, recommendations, ideas. Thank you.


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## frugalmama (Sep 12, 2009)

hmmm....with her tolerating that particular formula it's not likely to be EOS {that almost always requires an elemental formula}. You do mention it's 98% better - are there still any symptoms on formula?

She sounds EXACTLY like my DD with her allergic colitis - her trigger is oats. Right down to the not going often enough. Have you given her mylicon {baby gas-x} when she is having an attack? I found that given in high doses it often stops / lessens my DD's colitis even when she accidentally gets into oats. I also found that warmth and not moving helped her as well - I used to wrap a thermacare with a thick kitchen towel and gently use it like a heating pad on her tummy. Have you tried giving probiotics?

I would say it's likely one of the foods you're eating - my gut instinct says either brown rice, turkey, or the squashes. Those are all still pretty high up on the Allergen scale {http://www.allergynutrition.com/reso...%20Allergy.pdf - you want page 4}. Could you substitute the brown rice with Quinoa which is lower on the scale?

I'd play with the diet a little - maybe sub the rice with quinoa, turkey with either chicken or beef {if you have access to wild game I'd choose that as it's better yet}, and the squashes / sweet potatoes with turnips / parsnips / carrots. I would do one substitution at a time for a week each - within a week you should be able to see some improvement if it is allergy.

Just to check to cover all the bases - are you cooking your meals in common with other items you're NOT eating? Using condiments? Spices?

As for Doctors - I'd try a pedi GI next if you can.


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## DeChRi (Apr 19, 2002)

Replying from phone so I hope I don't miss something...
I'm happy to sub out anything. We have full access to local, free range bison(freezer full) and family hunted venison I could get my hands on. As far as prep...same pans, same everything, absolutely no spices, herbs, condiments other than a bit of sea salt. I've done the high doses of Mylecon with no luck. She does like a warm bath. After 48hr on formula I notice no symptoms...just some passing of gas that I think is normal as it doesn't bother her at all.

Questions...if we only ate brown rice/turkey/squash say, once every 10-14 days prior to Elin diet...could those still be the cause?? And she has been on probiotics for a few weeks now.

I had a huge, awesome, ellergenic meal last night, after 3 wks of turkey/squash/millet, then I slept and decided to punt pumping for 6 hrs. So after pumping 12 oz this morning, I feel a like more settled.

I could go one more round on the Elim diet. What I can't do is try and nurse her a bunch during that time. Even if that means at the end of 3 weeks she gets BM from a bottle vs breast. Family needs the peace, as does she. I have a decent stamina for my own diet/sanity, but that crashes when the fam falls apart.


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## elanorh (Feb 1, 2006)

Quinoa is a higher-protein option for your diet, too, and I know you ate a high protein diet prior to having to crash into this elimination diet.

Another possibility is a mitochondrial disorder; I have a friend whose ds was thought to have reflux/allergies/EOS -- and finally was diagnosed with a mitochondrial disorder. But your other children were fine, and I think that makes a mito case less likely.

I would wait longer than a week to try nursing/breastmilk again. I know it's difficult and I so missed nursing while I was on my month-long hiatus - but if her gut is really damaged, it might take that long to really be healed enough to try breastmilk again. I'd rather pump a little longer, than reintroduce too soon and be set-back again..... Give it as long as you can (up to a month) if at all possible. At least three weeks? One of the things our Ped was watching for was sustained weight gain. DD1 gained 1 pound in a day (three days into the Neocate) and then followed a nice curve for weight gain after that, gradually building up to the point where the Ped felt comfortable that she had enough 'stored' to handle the stress of a failed intro (again, while your little one's weight is less an issue than my then-off-the-charts wee one, possibly this is less an issue).

Make sure you label your milk as you freeze it and keep a detailed food journal. That way you can cross-reference and make sure you're giving 'good' milk (for instance if you discover that it is the millet which is the issue, you can push those bags of milk to the end of your stash, in hopes that it's outgrown by the time you want to use them).

It's very curious that the stools aren't looking 'allergic.' Have they tested the stools for blood? DD1's were green, snotty/mucousy, and had visible and microscopic blood. Once she was 100% on Neocate, about 1 week into it, she had tons of little black flecks in her stool for a few days and then it was gone - I suspect that's when her system was really beginning to heal up (scabs, for lack of a better description?).....

Another suggestion for you is to check out the Food Allergies board here. While this may end up being something other than allergies - the moms there have quite a lot of experience with breastfeeding and elimination diets, etc. I didn't know about Mothering when I was dealing with this with dd1, but the support boards I did find were so helpful, whether it was pumping, supply, diet, or simply support from someone who didn't think I was NUTS.


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## D_McG (Jun 12, 2006)

Quote:


Originally Posted by *elanorh* 

I would wait longer than a week to try nursing/breastmilk again.

ITA with this. With a reaction that severe I don't think you're doing anyone any favors by going back and forth with such frequency. I would do ALL elemental formula for a prolonged period. Let her heal. And when she's more mature you can retry (either bf'ing or a 'regular' formula if you choose not to continue pumping. Which is 150% understandable under the circumstances).


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## DeChRi (Apr 19, 2002)

Good advice, thank you. A couple questions...

I think I've decided to keep pumping, but just don't think I have it in me to keep up w/ the 8-10x/day. What's the minimum I could pump, maintain some kind of supply, knowing that it may mean some supplementation long term and I'm okay w/ that? Even if I could breastfeed 2-3x day forever, I'd be happy at this point. Can I pump 4-5x a day and still maintain some kind of supply?

Also, I've decided to go just elemental formula for the next month. Should I try to do another 3-4 wk TED? I'm not sure I have that in me. If I want a crack at nursing again in a month, what do I need to do diet wise to make that happen?


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## DeChRi (Apr 19, 2002)

I meant to add in the last post...we did have labs done on a stool sample, but no signs of blood. This throws me off. When we spent 6 weeks logging her hours of crying, it was literally 10-16hrs/day, and the rest was dozing off and really agitated. For her to be THAT miserable from food allergy, wouldn't you think her stools would be afffected?
Anyway, I feel more sane after a couple good meals,a nap, coffee w/ a little half and half, and a bottle of white wine in the fridge.

So I think I have one more go in me, from a diet standpoint. I love quinoa, so thatd be great. I do need a meat because it's very important to me to keep my protein intake very high.

I just need to figure out how to structure the diet.


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## crunchy_mommy (Mar 29, 2009)

I think if it were me I would give myself a good week or so to go back to eating whatever I wanted. It sounds like you need a break & I think it would be good for you to just live normally, with a happy baby & a normal diet, for a week or two. If you did this, you'd still have about 3 weeks for all of it to clear out of your system before you try nursing her again.

I agree that it doesn't sound like a typical allergy, particularly from the lack of stool issues. I'm very curious about what is truly causing her problems (and hopeful for you that you are able to pin it down!)


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## DeChRi (Apr 19, 2002)

After 36hrs back on formula, she smiling, cooing, trying to roll over, and the family is peaceful. She had one screaming episode earlier while trying to pass some gas, and hurling all over, and lemme say...I don't know if I can out her through another trial and error.


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## myk (Nov 24, 2006)

big hugs! i think if you're pumping 6 times a day you should be able to maintain some sort of supply, but i don't know if i'd drop down to 4.. i would definitely expand your diet but not include the major allergens. the bison sounds like a wonderful option!

i'd also stick with the formula for at least 2 weeks before trying mama milk again.. if it's working, there's something good going on. everybody needs some time to heal and rest. take this time. *hugs*


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## D_McG (Jun 12, 2006)

Quote:


Originally Posted by *DeChRi* 
After 36hrs back on formula, she smiling, cooing, trying to roll over, and the family is peaceful. She had one screaming episode earlier while trying to pass some gas, and hurling all over, and lemme say...I don't know if I can out her through another trial and error.

her or you! I did dairy, soy and eggs and it was enough. I'm so glad she's doing well. I hope you and your family and enjoy her even more now!


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## DeChRi (Apr 19, 2002)

I really appreciate everyone sticking with me for 9 pages here. I'm going to spend some time on the Allergy forum and decide where to go from here. For now I am eating, she is on the elemental formula for 3-4 weeks, and I am pumping about 20-30oz, over 6 or so sessions, each day. I have decided to give up the night pumpings from now. I pump at about 11pm, then again at 6am. She is not a big night time eater anyway, so I will add that back in later if needed.

I am curious to see how she handles more than 48 hrs on the formula. I am curious to see how my supply hangs in over the next couple weeks. I think I will muster the umph to cut out the Big 8 for 3 weeks, starting in a few days. Right now, I am just enjoying the ride for a few days.


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## LadyCatherine185 (Aug 12, 2008)

you are truly inspirational.


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## DeChRi (Apr 19, 2002)

Quote:


Originally Posted by *LadyCatherine185* 







you are truly inspirational.

Thank you.









This is so much harder than I thought. I am a very pragmatic person. Logic tells me that if she is miserable and my family is miserable and my health is taking a hit, then formula is the answer. And it will be okay. And she will be okay.

But boy, after nursing 2 babies until they weaned themselves, it is SOO hard to make that call. I just cant pull the trigger. Not without answers. If I KNEW what was wrong, then maybe, but not knowing is killing me.

My hope is that we hold on, keeping the sanity and trying one thing on another...until one day she just outgrows it.

Other times I think i am nuts and should just punt the whole thing. Right now, all I wanna do is curl up and nurse her, and having milk that makes her sick is so tough.


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## elanorh (Feb 1, 2006)

Yes, when I was struggling so with my dd1, I hadn't experienced nursing an older babe or toddler, so even though I was scared and devastated, I had no context for how impactful switching to formula permanently, would be.

That said - if you do end up having a failed challenge when you try to re-initiate, there's always "bottle nursing," which may work well on some levels to help provide that intimacy. My sister who adopted did this with her adopted child (and went on to nurse subsequent children).

What we told ourselves, during the month we were exclusively pumping while giving Ina Neocate, was, "Well, we just need to make it to the end of this month, and see what happens." We set that as a goal and didn't think about what ifs beyond that. If she had failed that reintroduction, I think we would have gone back to Neocate and left it at that (but who knows, maybe I would have kept pumping at least a little, I don't know, it was such a dark dark time for me)..... I do wish I had taken a week off and eaten whatever I wanted at the very beginning of that month - my favorite pizza place closed down while I was on my Elimination Diet.









In terms of how frequently to pump - focus on how much you're getting, if you see a dip, increase duration or timing of it. One of the women I knew while we were going through all our nursing struggles was an EP'er - she had low supply issues initially and worked and worked on it, and by the time her ds was about 10 months of age, she was pumping ONCE a day, and getting 35 oz. !!! Talk about good storage capacity. I do not recommend this - not all women would be able to do that, for certain! I know my supply would tank if I were only pumping once a day! But you may find that you're still able to produce as much with 5-6 pumpings, KWIM?

Good luck with everything.

ETA: I'm really baffled by this -- how weird that there's no blood in the stool with all the other symptoms!? Have you been taking probiotics yourself since this saga began?


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## spughy (Jun 28, 2005)

I looked up the ingredients of your HA formula and noticed that it doesn't contain any lactose. Babies are supposed to produce lactase but occasionally they don't, or don't produce enough - I searched this thread for a mention of you trying lactase drops (I thought you'd said you did?) but couldn't find it... sorry if this is rehashing, but lack of complete lactose digestion would cause all the same gassy/pain symptoms as a protein allergy but probably wouldn't result in blood in the stool. It could also result in merely slightly low weight gain. This seems almost TOO simple and given the number of specialists you saw I doubt it hasn't been suggested but I figured I'd post just in case. But you did try it, didn't you? I think the search feature is screwy.


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## HonkyTonka (Nov 18, 2009)

Quote:


Originally Posted by *spughy* 
I looked up the ingredients of your HA formula and noticed that it doesn't contain any lactose. Babies are supposed to produce lactase but occasionally they don't, or don't produce enough - I searched this thread for a mention of you trying lactase drops (I thought you'd said you did?) but couldn't find it... sorry if this is rehashing, but lack of complete lactase digestion would cause all the same gassy/pain symptoms as a protein allergy but probably wouldn't result in blood in the stool. It could also result in merely slightly low weight gain. This seems almost TOO simple and given the number of specialists you saw I doubt it hasn't been suggested but I figured I'd post just in case. But you did try it, didn't you? I think the search feature is screwy.

i could have written this post!

switching to non elemental formula (with lactose) might tell you something...


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## DeChRi (Apr 19, 2002)

Nope! I have never even heard of it. I will research when kids go down. But this would be in line w/ the elemental formula not making her cry, but the breastmilk causing pain?


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## eclipse (Mar 13, 2003)

I could be wrong, but I _think_ elemental formulas are lactose-free.


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## Pookietooth (Jul 1, 2002)

Does she have tongue tie? Have you looked into the detoxification issues?


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## DeChRi (Apr 19, 2002)

She does not have a tongue tie. We've had her assessed by an ENT. Do you mind elaborating on the detox issues?

Thanks


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## spughy (Jun 28, 2005)

You're using the Similac HA formula right? It is definitely lactose-free. I believe it uses glucose and sucrose.

Undigested lactose would cause a LOT of gas (by-product of fermentation by normal gut bacteria - basically the lactose would fuel an overgrowth of otherwise beneficial bacteria, the gas is mostly carbon dioxide which is harmless, but creates pressure in the intestines and colon.) Since she is gaining reasonably, she is obviously digesting some lactose (which breaks down into simpler carbohydrates via lactase, and is then absorbed into the bloodstream as glucose, which the body can use directly for energy). My bet is that she is simply not digesting ALL the lactose - she has a lactase deficiency. This would not cause gut damage per se, I don't think, only some inflammation and pain from pressure.

You can buy OTC lactase drops, I believe. They do sell them for infants because lactase deficiency, while relatively rare, does occasionally occur. Some people (and websites, unfortunately) attribute colic to lactase deficiency (and sell liquid lactase enzymes) but technically if it has a cause, it's not colic.

Here is an article on it. Your baby definitely exhibits some, but not all of the symptoms - if this is the problem, it is not as severe as in some babies. When you feel up to it, you could test it out by getting some lactase in liquid form specifically for infants, adding it to your pumped milk, and giving her a bottle. If that works, you could resume nursing her but you'd always have to give her the enzyme mixed with your milk before you nurse, and because this is a congenital condition, she would not outgrow it and would not be able to tolerate dairy products later in life. Also, I may be wrong about this, but I recall hearing something about whether taking lactase orally is entirely effective, since it is supposed to be produced in the gut and it may not remain active after passing through the stomach? I am not sure about that, but if so, lactase might represent an *improvement* but not an all-out fix like the HA formula.


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## 2boyzmama (Jun 4, 2007)

This is triggering some faint memories in my brain...isn't a lactase deficiency one of the congenital defects screened for in the newborn screen? Did baby have the typical newborn screen, mama? Maybe look up what your state covers in the screen (because some states differ slightly) And while we're on the topic of newborn screen, it might be worth doing it again (or for the first time if she didn't have one) because there are other congenital disorders that could potentially cause some similar issues. Does her current formula have phenylalanine in it? I actually knew a baby who was not diagnosed as having PKU until she was 3 months old (long story with a screw up with her newborn screen) and she exhibited severe colic-like symptoms with no obvious reflux, no bloody stool, no response to mom eliminating foods, etc.

Yes, the more I think of it...re-do her newborn screen.


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## frugalmama (Sep 12, 2009)

I'd go for having the newborn screen re-done as well - might even be worth ordering a full metabolic panel to check for other disorders as well.

Celiac comes to mind as well - it can cause a secondary lactase deficiency that lasts a while until the gut heals. I don't know how that would work in an infant though.

How old is she again? Has she ever been given solids?


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## DeChRi (Apr 19, 2002)

Taking this all in, thanks. She did have newborn screenings done but we can do them again. I am back on Elim diet now in hope to at least have "clean" milk for whatever comes next.

She is 15 weeks today. Never had solids. The decline started around 4 weeks with what initially we thoughts was oversupply/overactive letdown.


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## pdiannet (Apr 13, 2010)

Lots of hugs to you also.

I know you are probably looking for a solution to the problem, but I've noticed with all my kids the first step to solve any problem is to relax. They all start relaxing once I have. So, don't worry. Then, maybe put your baby in a wrap or carrier next to you and go for a walk. Get some fresh air and the baby some too.
My little girl is 6 mo. now and since birth will be very cranky all day unless she gets a walk outside in the baby carrier.
There's lots of things you can do to "fix" things, but loving your little one and being patient through it all is what will help the most. Use your instincts as to what you think is best and follow your baby's cues.

Mother of 4, wife of ak state trooper,










































:violi n


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## Shahbazin (Aug 3, 2006)

Regarding pumping, I was able to get down to 4 sessions a day (rented hosital pump), & still make 30+ oz (I was on Domperidone too though); my 2nd DD had severe reflux issues (was on Prilosec, which helped - since 5 weeks), but from 4-5 months gained 0 oz due to not wanting to nurse much/transfer well (lots of arching & screaming all along), which lowered my supply, which made less available... I ended up feeding some formula for a month while I brought my supply up from the measly 13-14 oz a day I started out pumping then (around 8x +, to build supply). Nursing - she was evaluated for issues, but just wasn't taking much at a time, so maybe there were transfer issues they didn't find? I ended up EPing for 10 months & bottle feeding her. It worked, my kid grew, & I'd have stuck with the formula if that had been the only thing that worked. I had no issues nursing my 1st DD.

So it sounds like you are an amazing mom who has tried all kinds of things - I relate my experience, to show one experience where supply was down, then was brought back up, & a baby who just couldn't nurse well for whatever reason was able to get back on breast milk, even if not direct from the source. So by pumping for a while longer, you are keeping your options open.


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## DeChRi (Apr 19, 2002)

Thank you for the advice and personal story. I am treasuring nighttime, as for whatever reason, baby E is never crying at night. I strip her down, cuddle her in next to me, and she is perfectly peaceful until she pokes around to eat. DH has most of today & tomorrow off (he's a realtor, so may have a random showing or something, but no office work) and I plan on not only having baby time, but also leaving baby w/ him and getting out solo with my 2 yo and 11 yo.

Pumping is going okay. I'm getting 20-30oz daily. I've found w/ DD2 (I pumped while working then) I can manipulate my supply pretty well, so I'm not sweating it too much. I'm getting 5-8 short sessions daily. On weekends when DH is here I try and do some cluster pumping.

Want to know my biggest fear? Not being able to figure out what it is, staying with formula because it doesn't make her sick, then later finding out it was something that I didn't need to quit nursing over. I'd be able to live w/ formula IF I knew why I was making that choice. If she is allergic to dairy/eggs/gluten/soy and let's say some other stuff...I'm not sure how long I could keep that up. But even then, if I ended up choosing to formula feed, I'd feel like I made an educated decision. Not knowing makes me feel like I'm giving her narcotics for pain because it kills the pain, but never addressing what is causing the pain. Does that make sense?


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## crunchy_mommy (Mar 29, 2009)

Quote:


Originally Posted by *DeChRi* 
Want to know my biggest fear? Not being able to figure out what it is, staying with formula because it doesn't make her sick, then later finding out it was something that I didn't need to quit nursing over. I'd be able to live w/ formula IF I knew why I was making that choice. If she is allergic to dairy/eggs/gluten/soy and let's say some other stuff...I'm not sure how long I could keep that up. But even then, if I ended up choosing to formula feed, I'd feel like I made an educated decision. Not knowing makes me feel like I'm giving her narcotics for pain because it kills the pain, but never addressing what is causing the pain. Does that make sense?

But if your child was in the hospital writhing in pain, you wouldn't hold off on the narcotics just because you didn't know the cause, right? You don't need to make any permanent decisions now -- you just need to ease the pain you & your DD & your family are going through. Once the pain is under control, then you will be better able to consider the cause.

I totally get your concerns though, & I truly hope you are able to pinpoint exactly what the issue is.


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## maddymama (Jan 5, 2008)

HI Mama,
I understand your concern, but consider re-lactation as a possibility. It might take you some time to rebuild your supply up, but it is possible. I'd talk to your LC about that possibility once you get this whole thing figured out.......
~maddymama


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## DeChRi (Apr 19, 2002)

I cross-posted this info on my TED thread in the Allergy forum as well.

She's on the HA formula now, has been for a few days w/ one 2min nursing that wreaked havoc, 2+ days ago. Starting about 6pm last night she started a slow decline that resulted in a couple hour of screaming last night, in obvious pain, and has been at it for 3 hrs now this morning. Getting worse and not better.

Totally devasted.


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## PatioGardener (Aug 11, 2007)

Quote:


Originally Posted by *DeChRi* 
I cross-posted this info on my TED thread in the Allergy forum as well.

She's on the HA formula now, has been for a few days w/ one 2min nursing that wreaked havoc, 2+ days ago. Starting about 6pm last night she started a slow decline that resulted in a couple hour of screaming last night, in obvious pain, and has been at it for 3 hrs now this morning. Getting worse and not better.

Totally devasted.









Oh Mama, I am just so distraught for you and your little one. I hope that you can find the answers soon. As much as I am pulling for you guys to be able to nurse, I was so relieved to hear that you had found a formula that took away her pain. Now that is no longer working I can't imagine your distress.

Has she seen a pediatric GI specialist? That may be a next step to consider. I hope you can get to the bottom of this soon.

Sending positive thoughts your way.


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## DeChRi (Apr 19, 2002)

The Children's Hospital 45 min from here has a Ped GI dept. That will for sure be our next stop. The next 24 hour will be the decider on whether we try and ER it this weekend, or get a fast appt.


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## spughy (Jun 28, 2005)

I hope you can get your sweet baby some help.


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## DeChRi (Apr 19, 2002)

My wonderfully supportive parents came up for the night. Dad is outside walking around w/ baby, DH is downstairs playing w/ 2yo and Mom is hanging out w/ 11yo. I'm gonna shower! DH even scheduled me a massage in the morning.


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## ktgrok (Jun 19, 2008)

make sure you give her some gripe water!


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## arianascrunchymama (Dec 9, 2009)

oh mama...







I cannot even begin to fathom what is going on in your heart right now. I agree with the other posters who suggested that it is not a diet thing. The perfect poos are confusing for sure! I had OAL and OS that caused lots of frothy green poos, lots of gas, screaming, and never sleeping for more than 1 hr at a time ANYWHERE.

My first guess would be that any stress she experienced at the breast has stuck with her- hence her resistance. The fact that she screams and cries an hour afterwards is strange. We're not getting deep enough here. Where's Dr House when you need him??









A visit to the GI will be very beneficial. I wonder if your breastmilk has excess casein (the harder to digest fat)? It may be worth it to have your breastmilk tested. Or I'm thinking by the time it takes for her to be adversley effected it has to be something with her small intestine. Maybe a weak sphincter at the beginning of her small instestine is causing less than ideally digested breastmilk leak in?

You are beyond strong- physically and emotionally- and we should all use you as an example of drive and determination.


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## HonkyTonka (Nov 18, 2009)

any updates mama?


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## DeChRi (Apr 19, 2002)

First off, thank you all sooo much for the kind words and support. Honestly, if it wasn't for being able to come here, I probably would have thrown in the towel. People IRL are dumbfounded that I am still trying to breastfeed etc.

I had started a TED thread in the Allergies forum and upated there...I'll link below, but the long and short is:
She started reaction to the Alimentum after 48 hrs on it (which historically was the longest we had done at a time). We went back to our regular Dr yesterday. They did blood work, repeat newborn screenings and an abdominal xray and we will get those results tomorrow. We have an appt with the Ped GI Dr in freaking October (end of) because she is not malnourished and isnt critical enough. IF something comes back on the blood work or xray, or if she declines further, they will see us sooner. I tried telling them she is only normal weight because I spend hours a day trying to get 1 oz down her at a time as she never cares to eat much since she is always in pain. But whatever. Our Dr said lets get these tests back and we'll find a way to get in sooner.

In the meantime she prescribed Neocate, which I too to the pharmacy yesterday and they had to order it. Since I had a day to wait, and she was pretty crabby in general, and since I was 6 days into a new TED, I decided to nurse her exclusively for the last 20 hours or so. Went fine, she woke up a little congested this morning, the it quickly went downhill...hurling phlem, really congested, red eyes, and then the screaming/writhing about kicked in. Way worse the the reaction she got after the 48 hr on the Alimentum. DH just dropped the Neocate off, and she is sleeping on me right now, so I think I will try to go that route when she wakes. I hate hate hate going back to a bottle and pumping and stuff after such a nice day and night of nursing.







Totally breaks my heart.

Our insurance doesn't cover the Neocate, which is $50 for a 2.5 day supply. Ouch. We pay freaking $1000/month for good group insurance (DH selfemployed) and it doesnt cover it since Kansas doesnt mandate it. Bah.

So my plan....give her Neocate and see if she is blissfull happy. Keep on this new TED and every 3-4 days try and nurse her a few times and see what happens. I'm going to keep pumping in the meantime and contacted a milk bank to see about donating. If anything comes up on the tests tomorrow, we'll go from there.

Here is the link to the other thread for updates: http://www.mothering.com/discussions...1258765&page=2

And here is a pic of baby E, who despite it all, had just found her thumb.








http://www.mothering.com/discussions...pictureid=1822


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## frugalmama (Sep 12, 2009)

If you qualify for WIC they will cover Neocate or Elecare {other company, same formula}. Some states allow for hardship cases on WIC when the income is too high. Hit up your pedi for samples too - they can call the company and get x many cans per month free for samples as well. If you don't qualify for WIC, try ebay - I personally bought cases of Elecare off there with no issues and many people buy neocate as well.








My dd did 13 months on Elecare, all covered by WIC thankfully.


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## LadyCatherine185 (Aug 12, 2008)

I am wondering since she reacted to the Alumentum, if it maybe isn't an allergy after all? Something physical causing her pain?


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## jenfl (Oct 20, 2007)

Mama, you're doing amazingly. It feels weird to say this, but I hope the tests come back with something -- at least you'll know what you're dealing with.

It's so unfortunate that the peds GI can't see you for so long. I know how that is -- my son was tongue tied and I NEEDED him to be seen before his bad technique became a habit. What I did was call the office nearly every day at around 10am to see if there were any cancellations. I finally managed to get in early. I can't guarentee it will help, but it might be worth a shot. Or maybe your doc can make contact with their office -- she might be able to speak directly to one of the GI docs and appeal to him.


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## frugalmama (Sep 12, 2009)

Had another thought - try asking about your insurance situation on the KidsWithFoodAllergies message board - they are whiz's at getting elemental formulas approved by insurance. Sometimes it's something little like it can't be through a pharmacy but can be though a medical equipment company, has to be appealed, etc.

They might also be a good place to lay out all the info about your DD and see what they think as most are seasoned allergy moms with kids on elemental formula and multiple food allergies.


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## D_McG (Jun 12, 2006)

Quote:


Originally Posted by *LadyCatherine185* 









I am wondering since she reacted to the Alumentum, if it maybe isn't an allergy after all? Something physical causing her pain?

it's not uncommon for severely allergic children to only be able to tolerate neocate. That is amino acid-only formula as opposed to alimentum where the proteins are just broken down.

To the OP. what is your GI saying re: repeatedly trying the breastmilk? I wonder if an extended neotcate/elecare treatment is a better idea just to let the gut heal? 3, 4 days isn't long enough for your milk to recover or her gut, either. I'm sorry I know how painful this is.

Lots of people have luck with insurance covering these formulas. Definitely try that route!


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## 2boyzmama (Jun 4, 2007)

Call your area's Early Intervention Services (sometimes called Birth to 3 or something like that). They will have resources to help with expensive formula. Also call the GI clinic, tell them you have an appt in Oct, but in the mean time you need a way to pay for the Neocate, they often have resources to help families.


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## DeChRi (Apr 19, 2002)

frugalmama - I never thought of ebay! We do not qualify for WIC. We are stuck in that middle income area where DH is self emplyed and does pretty well, but then we pay $1000/month for health insurance, etc, so at the end of the day, it doesn't look as good in the pocket as it does on paper, because we have to insure ourselves. BUT, we will adjust where we are spending elsewhere and will figure it out.







I'll totally try ebay.

LadyCatherine185- me too! Also, today she went down that same crash pattern she usually does, BUT she bottomed out much less severely than she has on other BM trials. It was tolerable. Not in chronic pain alll day. More episodic, shorter, etc. So I am still nursing her as of right now, going to keep on through tomorrow to get 48 hr test of what her feeling in nursing. I have 2 cans of Neocate on hand as well. She was crabby and far from normal baby, but better. That being said...I am shoveling down buckets of my TED foods and am still 16.5lb down since 4 weeks ago. And I was low pre-pregnancy weight then. So I have been coating everything in olive oil.









jenfl - I know..I go back and forth on this! My Dr did call the GI but we are not critical enough to bump up the line. She is gaining okay, etc. If they find something on these tests we will be moved right on up.

2boyzmama- thank you for that resource!


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## 5gifts (Nov 16, 2005)

I've been following your thread, hoping for you to be able to know what the heck is going on! I'm dealing with a much, much milder version of what you have going on. My 10 wk old DD started having problems 4 wks ago - we're still trying to figure it all out - but muscle testing gave us some insight (she is too young for the sensitivities to be really clear)...and I wanted throw out there that liquid catnip & fennel helps when she is hurting.


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