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multiple (and many....) food protein intolerances in an exclusively breastfed baby

post #1 of 8
Thread Starter 

Any one else out there dealt with/ dealing with this? My 4 1/2 mo. old is, as far as I can tell, intolerant of literally every food I eat at this point. (We've done okay on an ever-more-limited diet here and there, but now none of the last six foods I've been stuck with for the past month are okay anymore.)

My daughter has green, mucusy, bloody diarrhea; hives; eczema; congestion....

And no, it's not an oversupply problem.

Tomorrow our pancreatic enzymes and allergen-safe infant probiotics arrive; our last ditch effort before trying to convince her to take a bottle with amino acid formula permanently. 

So miserable!

post #2 of 8

Welcome to Mothering. And a :Hug to you. It sounds like it's been a really difficult time. It looks like your post might have been missed, so I'm bumping it up for attention. :bump: Anyone have suggestions to share?

post #3 of 8
Thread Starter 

Thanks for bumping me up... I guess not too many folks have dealt with it!  The update is that the pancreatin caused a terrible reaction - turns out one of her severe sensitivities is to pork, which I don't normally eat much.  We tried a broad spectrum, plant based digestive enzyme awhile back, and that did neither of us any good at all, either.  And this has been our second infant probiotic attempt that's resulted in vomiting and rash.  So the past three days I've spent, essentially, all day trying to get Neocate into her via bottle, sippy, or syringe.  It takes us about 45 min. to get maybe an oz. in.  I've been pumping and dumping before bed, and "nursing" at night (basically, just being a human pacifier) just to comfort her.  The Neocate has helped a lot as far as physical health goes, but the emotional trauma for both of us is unbearable.  I never would have expected to feel so strongly, but the grief of this forced weaning is overwhelming.  What a great start to the holidays.

I guess what I need most now is some suggestions for getting her to take a bottle, etc.  The bottle she refuses and has consistently refused since 1 mo.   (She took it before that.)  The sippy or syringe she mostly dribbles out.  Just the sight of any of them provokes wailing.  Someday this stubbornness will be a good thing... but right now....

post #4 of 8
My guy has taken well to the Lansinoh Momma bottle with the premie nipple. Sorry to hear your troubles. We also have dairy, gluten and egg intolerance. Wish I could help more
post #5 of 8
Also, he is taking kirkman brand (not Costco) probiotics which are inulin and casein free.
post #6 of 8

I haven't dealt with this, but it sounds so difficult!  I couldn't not respond.  Can you tell us a little bit more?  What does your pediatrician have to say?  Are you sure there's not something else going on?  The reason I ask - I have a cousin who has a rare genetic disorder wherein her body simply can't process proteins properly.  I don't know all the details, as I was a child when she was a baby, but I know they spent a lot of time in the NICU, and her feeding was a huge problem.  BUT - once they got it figured out, things were relatively okay.  I know she had some procedures done in her infancy, I know she was on a very limited protein diet growing up that has increased as she's gotten older, and I know that she had to go to the children's hospital every so often for maintenance procedures.  Aside from the fact that she only ate white rice for years, you never would know there was anything wrong with her. 


Anyway, I hope you get some relief soon.  There's nothing more painful than struggling to feed your baby. 

post #7 of 8
Hi. I hope I am not too late for this thread. My ds is 4 1/2 months. I have been on an extreme elimination diet since he was 6 weeks old. I am presently eating ground turkey, acorn squash, brussel sprouts, olive oil and salt. I had supply issues- over supply/ foremilk/hindmilk imbalance. Every food I try to add in fails. Originally I was eating more- I did the Dr. Sears elimination diet but my ds still was having green diarrhea with mucous, spitting up frequently, severe reflux and rashes. I use apple cider vinegar on his rashes daily to keep them at bay. I've done chiro, acupuncture, taking probiotics which are allergen free, digestive enzymes and worked on my supply and he is still having issues. We went to an allergist at 3 months and prick test was negative and the allergist thought iu was over reacting. I asked how it is possible to have mucous in stool when I am on such a limited diet. I got no answer. My only advice is look into s. Boulardi - it is a good yeast which helps with diarrhea. I've been giving my ds a very small amount on my finger. Also this is difficult for me, but when you fail a food test you need to wait 1-2 weeks before trying another. I'm really hungry and it is hard to eat the same thing all the time. I wish I could be of more help. Hopefully there is someone else out there that can give advice. Please note you should research the a. Boulardi because some sources say it isn't safe for infants... Others say use for infants and you can only use for a limited time. Check out google scholar...
post #8 of 8
Thread Starter 

I'm so sorry to hear that you're experiencing the same.  The week before Christmas we were finally forced to switch our daughter over to Neocate.  There was nothing that I could safely eat anymore, and, since I have Crohn's, I was having a lot of trouble of my own, weight-wise, on such a restricted diet.  I also had the opposite supply problem - not enough.

She is doing very well now in every way, but it was a harrowing week for everyone trying to rapidly wean her.  I had a lot of grief, guilt, and, obviously, stress, but I'm feeling better about it emotionally now.  I'm sorry I couldn't feed my child in the way that should be best, but I'm glad we at least have access to special formula for her needs, and that she can now thrive.  Still a little sad, but it's good that we're both healthy and sleeping these days. 

We saw an allergist, too, who initially gave me an attitude and clearly thought I was overreacting as well.  (When one of our prick tests came back positive - for fish - she changed her tune.)  It's terrible when you can't get the support or even information you need from the healthcare community.  What was most helpful for me was searching out folks online who'd been through similar challenges - you might want to look at pediatric allergy sites with forums - it was actually far, far more helpful than any doctor or lactation consultant visit we made, because most just don't see this problem or this severity of this problem. 

My daughter is 6 months now, but we'll be waiting until 9 months, on the advice of many parents, to introduce any solids at all.  Another piece of advice I got was not to introduce grains first (like rice cereal,) but to start opposite of what you'd normally introduce - with a meat like turkey, and to stick with only one food before introducing another for a few days at a time, to measure reactions.  I think we will probably start with sweet potatoes, bananas, or pears, since I'm doubtful she'll take to meat first. 

There are of course many factors in a dilemma like this.  If your little one is in good enough shape, gaining, mostly healthy, and you feel you can stick to such a restricted diet, (i.e., you don't have underlying health problems of your own, as I do) you could go on nursing, and shouldn't feel pressured to do otherwise.  But I am glad now that we made the switch.  It's wonderful not to have to worry constantly, it's wonderful that she's so much happier and well rested, it's wonderful that I feel I can take care of my child instead of being confined to my bed and the bathroom in every spare moment.  But again, I don't know the ins and outs of your scenario.  I wish you the best, however, and feel free to send me a message if you have any questions.

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