Newbie here

[3Ps]

Hi, I've been on other boards on Babywhisperer but this is my first venture here.  My LO who is 5 months old, had been having blood in her poop continuously this past weekend coming in forms of little droplets mixed in with the poop.  When I saw it again on Monday, I called her doctor.  After verifying that it was in fact blood and hearing about other symptoms (she got a rash on her chin and on her tummy for a couple of hours a few times after getting some Similac Organic formula - I bf but she gets EBM and some formula during the day when I'm at work because of a supply issue), her doctor determined that she may have a milk allergy/intolerance.  I am to cut out all dairy from my diet and even though the doctor didn't mention it, I will also be cutting out soy based on what I've read on this board.  The doctor recommended she get on Nutramigen for the formula supplementation.  I've read about how horrendous tasting it is.  Is this across the board and no babies like it ever?  She is now taking about 7 oz with each feeding, and when we were still giving the formula supplementation, 2 oz of that was formula.  I would like to continue this, but am afraid that she'll hate the Nutramigen so much she'll come to hate the EBM as well.  I would really like to continue bf'ing her for as long as possible even though I'm just DREADING the new diet, but that seems to be the best way.  If this will cut out her general gassiness, night wakings from having to poop (she'll cry out first, then roll from side to side first and whine/moan, and then fart/poop), and the bloody poop, I'm willing to do it.  I just hope it works.  The doctor also said that I should throw out or not use the supply of EBM I have so far, which I just can't do.  All that hard work!  But, am I just holding on to something that's actually bad for my LO?  Sorry for all these random, incoherent questions but this is all so new to us.  I'm still trying to get over my own stupidity of thinking that the little red dots we were seeing was undigested Tylenol.  Talk about DUHHHHH.            

[em_here]

HUGS HUN

I think it is best if you do pump some more EBM as the EBM you have pumped now will have the milk protein in it if you were not on a dairy free diet.  Abbi my lo is mpi and on Neocate, so the one below nutragima (it is completely broke down) yes it does smell horrid, and yes it does taste horrid, but abbi who has never drank well, didnt seem to notice any difference.  All you can do is try, good luck, keep us posted   

[Jimbob]

Unfortunately I too think that you will need to dispose EBM that you have stored as this will contain milk protein. I would give the nutramigen a trial but please bare in mind that some lo's also react to this formula as it is not dairy free but is a hydrolysed formula which means the proteins are broken down. If your lo still treacts to this formula you may need to supplement with a elemental formula which are amino acid based and completely dairy free. To help with the taste of the formula it may be worth mixing it with EBM. You could start with 1oz nutramigen and 6oz EBM for example. This way the taste might be more acceptable. We had to do this when weaning from regular formula to neoacte (elemental formula).

[3Ps]

Thanks for your responses!  I still can't bring myself to throw away the old EBM (what a weird weird emotional attachment I'm having to that, geez louise) but am offering her only the newly pumped EBM where I didn't have any dairy.  We are going to mix the Nutramigen and the EBM and will try your recommended amounts.  One further question - how do we know she's reacting to the Nutramigen?  My dairy free life just started yesterda so today will be the 1st day where she'll have true dairy free intake (except for the Nutramigen).  This morning she still had bloody poops.  When should we expect this to clear up if the Nutramigen is not causing further damage?  Last night around midnight she woke up and screamed from having to poop.  Given this new diagnosis, we now know that's what's going on and try to help her have a BM whereas before we were so puzzled as to why she would do that and felt helpless.  She fell asleep as soon as I changed her diaper, which is a big improvement.  She pooped again after that but did not wake up which again, is a big improvement.       

[Jimbob]

It can take a while to see big improvements. I would say you should be able to tell if things are improving by 2 weeks. It can take longer to get to baseline though.

[3Ps]

I think I read somewhere on this board about this, but want to verify - can the MSPI cause reflux?  I think some of the symptoms she's been exhibiting are very like reflux.  A fair amount of spit up, sometimes 1 or 2 hours afterwards, sometimes the spit up is watery, sometimes it is very mucousy, lately (when her bloody poops started) she's not been feeding very much on bottle or on breast where she would feed for a couple of minutes and then bob off and arch her back.  I would try to get her back on and she would feed for 10 seconds and then bob off arch her back again.  I've also noticed some bad breath, like vomit breath, which was the biggest indicator to me that she may have developed reflux as well.  She'll also randomly go into a screaming rage and won't stop for like 20-40 minutes and nothing will calm her down.  I've also heard her grunt and she really squeezes hard when she's trying to poop.  I keep reading that reflux is in infants 1-3 months and then they grow out of it.  Can they develop reflux this late?  I'm feeling exhausted from this.  I just wish I could figure out what's going on and treat it appropriately because it's so hard to see a once happy baby go downhill like this.     

[Jimbob]

It does sound like reflux. It is possible that your lo has been suffering with silent reflux and now showing more symptoms. I would definately have it checked out.

[em_here]

MSPI and reflux do go hand in hand, once milk protein has been eliminated, and her tummy has heeled inside, hopefully the reflux symptoms will ease a lot.  If not, you can easily get some meds for her.  Bear in mind arching etc that is due to the mpi can also mimic reflux, so maybe eliminate the milk protein first, and then you will clearly see whether it is reflux

hth a little

[3Ps]

Her pediatrician confirmed that my LO is likely suffering from reflux as well so she is on Zantac.  We thought the night wakings from pain from passing gas and pooping had passed, but she was up last night and the night before from it.  There is less blood in her poop, and every once in awhile we'll get a poopy diaper without any blood in it, but the next few always has them.  I did not go total dairy and soy free until last Thursday so I guess we still have a couple more days to see if it'll completely clear up before we will be referred to a GI specialist. 
 

[3Ps]

Well, it's been one week since I've gone total dairy and soy free and my LO still has blood in her poop and the night wakings from having to poop or fart has continued (always seems to occur around 5 AM).  Last weekend she was exclusively on breastmilk and we came out of the weekend very hopeful as there was a significant decrease in the amount of blood in her poop (only a few specks) and she had pooped on her own at night without waking up.  Come Monday, because I did not have enough of a supply of breastmilk for her, she was given 2-3 oz of nutramigen mixed in with the breastmilk.  My husband and I think it has made things worse.  The amount of blood increased and her night wakings also got worst.  We told the pediatrician but they (we talked with 3 of them in the same office - depends on who takes calls in the mornings) are very hesistant in concluding that it's the nutramigen causing problems and then basically told to be patient by one doctor as  it could take up to 2 weeks for everything to really clear out.  Before I subject her to a GI specialist however, I'm going to pump like crazy and go back to only giving her breastmilk to see if it'll help.  If it does, we're never touching the Nutramigen again.  I also have this feeling, call it mom's intuition, that she's not allergic to soy, but that'll be a theory we'll test once we feel like her insides have healed up.  She's been through so much with doctors already (she had a heart defect that required open heart surgery to correct which took place about 1.5 months ago and also sees an endocrinologist and has to get blood drawn every 6 weeks  which I detest) that I just want to try to get her better on our own if possible before she gets poked and probed again.  Am I crazy?  Sleep deprived for sure!   

[Jimbob]

Your dd could be reacting to the nutramigen as its not that unusual. My ds reacts to nutramigen as it still based on cows milk. James has to have an amino acid based formula so is on neocate advance at the moment. If you can manage with just breastmilk that will be a good test to see if it is the nutramigen that is causing a problem. Are you going to continue to cyt dairy and soy from your diet?

[3Ps]

Yes, I will be continuing to cut dairy and soy from my diet until we're sure everything's cleared up.  It's unlikely I'll be adding dairy back into my diet as long as I'm breastfeeding because we're pretty sure she has a reaction to that.  We may test adding soy back to see if she's truely allergic/intolerant of it but that won't take place until we stop seeing blood in her stool and the pediatrician ok's the test.  I want to say thanks for everyone's support and help on this board.  I thought the dairy/soy free life was going to be HELL until I came to this board and saw the list of things I could eat, as well as see what other peoples' experiences have been.   

[Jimbob]

I think you are doing the right thing. Good luck and hope your dd is feeling better soon.

[3Ps]

After 3 weeks and my LO's condition still hasn't cleared up.  Sometimes we have clean diapers, sometimes there would be more blood than usual.  Our pediatrician sent us to a GI specialist and we just saw her.  We were less than impressed.  Basically we are to put her solely on Neocate and I'm not to breastfeed anymore.  She does think it's a food allergy issue and nothing else which is a relief.  However she wasn't very enthuastic about the total elimination diet as she said that some of those proteins may stay in the body for up to a month.  There wasn't much of an examination.  We are also to take her off the rice cereal that she just started.  We are reluctant to do that as given her reactions to the rice cereal, we're pretty sure she's not allergic to it and what's more, it's solidified her poop.  We are going to give her Neocate, but I'm going to also go on the elimination diet so I can breastfeed her a little more.  She has never really liked the bottle much and well, for selfish reasons, I like to breastfeed her and she enjoy it a lot as well.  Am I going crazy?  Uggh.     

[3Ps]

Oh, I also asked if there's a way to test for what she's specifically allergic to.  The GI specialist said no such tests exist.  Have other people been told the same by their specialists?