Author Topic: Milk/Soy Protein Intolerance - MSPI - READ HERE!!!  (Read 181232 times)

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Offline First Time Mom

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #165 on: June 18, 2006, 02:16:03 am »
Hi Beata3, hope you don't mind if I jump in!
My dd cannot handle any amounts of milk product- she gets lots of blood in her stool and often her stool is green and sometimes frothy. I have had to totally change my diet and cheese was my favorite food! I hardly eat out as I worry about butter and milk seems to be hidden in everything. My dd is now 7 months and I am still bfing. They are only babies once so, in the long run, it is so worth changing our diet for them- you can only bf your baby now whereas you can stuff your face with cheese (and whatever you happen to miss) for years to come! The hypo-allergenic formula is very expensive and from what I hear stinks, not to mention some los won't take it.
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Offline GraceKellysmom

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #166 on: June 18, 2006, 02:55:46 am »
Beth,

I think you raise some very valid points and have said honestly what some moms are afraid to. big {hugs} to you hon as you try to figure out what works best for your family.

For me, it was #1 that I loved breastfeeding. #2 the cost of potential formula feeding. We were on WIC for part of ds' early months, dh was in grad school. I asked about options for formula, and they provided no milk/soy-free formulas. I was lucky to have a super supportive dh and family members, who endured the milk-free thing with me. I knew if I could make it to 11-12 months, that I could supplement with enriched rice milk instead of formula. Ds to my surprise, outgrew his milk intolerance at 12 months old anyway. Dd outgrew hers at about 17-18 months old. I celebrated with pizza, and then fell sick on the toilet because my body wasn't used to it!  ::)

With as sensitive as your son is, there is probably no way he would ever tolerate Alimentum or Nutramigen. (If you could even get him to take them at this point) I would guess that either of those (they are NOT milk/soy-free, just "pre-digested" ummm pre-digested by whom?) would actually make him worse. If you do end up going to formula, your ped will need to prescribe something like Neocate, which is corn-based, I believe, and quite expensive. (corn is another huge allergy)

I am going to strongly suggest that you keep your 6 month goal, and really strive for 12 months. The longer you go, the better off he will be, and the less likely his allergy/intolerance will continue through childhood and perhaps adulthood. Is 6 more months worth that? To see him sit at his 2nd birthday and be able to have a spoon of ice cream with his birthday cake? Your odds are better with that if you can keep nursing milk-free than if you switch to formula.

Right now, LLL and WHO are both suggesting that babies be nursed up to at least 12 months. Any pediatrician that is not supportive of that, well, I'd probably switch to a new doctor. Where are you located? Can I find you a local support nursing support group? I know my old support group has a MSPI email list that we can get you subscribed to if you'd like. Or can we help you find out-to-eat choices that make this easier for you? Or day-to-day choices (maybe some new recipes?) that will help? I am happy to help in any way I can.

I always tell moms that breastfeeding gets a ton easier between 8-10 months, usually around 9 months old. They start eating 3 meals per day, only nursing 3-4 times (one being first morning and one being before bed, so it's quite infrequent)

-----------------------------------------------------------------------------------------------------------------------------------

That said.

I was a moderator on the breastfeeding board for a long time. I knew by your first post that you're having a tough time at this. Breastfeeding is a commitment. And having an MSPI baby wasn't something we signed up for. It changes everything from how we cook to how we socialize, to how we feel about food. It is emotional! Completely weaning to formula won't make things that much easier, it will be a different kind of challenge. And weaning is HARD, very hard for some babies and moms, so I know you know it's not the easy road. Dreaming about a new diet is tempting. Being a mom is self-giving, and on top of it you've had to give up chocolate too.

So if you decide to try weaning to formula, know that I will support you through that and help you with that too. Sit down, take a few weeks to think about it, and know that you have time to make a decision. Live with it for a week or so. {hugs}
Stacy, Mama to
Grace Kelly 01/03, Maximilian Alexander 07/04, Faith Noelle 03/07, Henry Patrick 12/08
and my angel babies

Offline Beata3

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #167 on: June 18, 2006, 12:58:27 pm »
First Time Mom ~ hi & thank you!  As for the diet ~ I agree with you & it is do-able (hard, but it can be done).  My main point is my Matthew ~ I can deal with not eating cheese, but it is hard to watch your 5 month old baby cry with gas pain & be so uncomfortable pain to go #2 ~ like I said, if I were to switch ~ part of it would benefit me ~ but that would not be the reason that I would switch... I would do anything for my son.

Stacy ~ thank you!  Your post actually made me cry (in a good way, but I am an emotional mess these days anyway)!  I am WITHOUT A DOUBT going to reach the 6 month mark (as long as no other major obstacles arise) & if things continue to improve with him then I would stay the course for the full 12 months.  I would do anything to make him 100% healthy (which is why I keep wondering "what if...").  Trust me, I never thought that I would be as committed to BF as I have become ~ while pregnant, I told my hubby that if I can, I can, if not, then that will be okay as well ~ but we both wanted it to work b/c he's got eczema & his mother has asthma.... and it did ~ it was so hard ~ the hospital gave me such "great" advice that I came home with cracked, VERY painful, bleeding nipples ~ but I stuck with it.  I had a c-section so I was in pain from that as well (I chose not to take the percoset that they prescribed since I was bf) ~ & then I had some complications with the c-section ~ but I stuck with it b/c I could.  So, I just do not want anyone to think that I would stop for the benefit of me & not for my son!  B/c if that was the case ~ I would have stopped on Day 4.  I just get so nervous that I will make things worse for him in the long run ~ I keep thinking although the "right" smell is back, & there is yellow in the poop ~ but it is still mucous & still some green that WHAT IF I am missing something else that it may be?  And then he grows up having those allergies or asthma BECAUSE I continued to breastfeed, you know what I mean?  I am so preoccupied with poop it is ridiculous!  Your comment about the 2nd b-day party with ice cream is one of the primary reasons that I am so committed to this ~ I keep telling my husband that if I have to eat so little so that he can one day enjoy an ice cream cone & I could see his face light up ~ then it is all SO WORTH IT!  & thank you for lettimg me know that the eating habits get "easier" ~ he eats so often right now it is ridiculous & draining on me.  Not to mention that he was sleeping through the night, until about a month ago when he started waking up once, then twice, and over the last several days he has been waking up 2-3 times & not being able to be put back down b/c he will SCREAM & CRY!  So, for the last few nights I have been up with him for about 2 hours at least 2 times per night... so, that doesn't help my sanity :) 

Sorry I made this so long ~ but it is helping me & it feels great to have such great support (all my friends were formula mom's so they cannot relate).

Beth


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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #168 on: June 18, 2006, 14:14:32 pm »
Hi there - just chiming in from the Neocate and allergy standpoint... I totally agree with Stacy about bfing if you can. I wish I had. But I do have a point about Neocate - it is corn based but the way the corn and formula are made it is HIGHLY unusual for a baby to be able to be allergic to it - the percentage is some crazy low number. And although Dr. Sears says corn is a major allergen, many pediatric allergists disagree, my own DD's doctor included - who highly recommends introducing corn at 10 months - she thinks it's rarely an allergen and can provide some great wheat alternatives (chips, bread and more). So I highly doubt your DS would be allergic to Neocate - BUT it does not taste good and if he's used to breastmilk (much yummier) he may have a hard time accepting a formula that's not one of the tastier ones. You could try Alimentum first (we had good success with it) but it doesn't taste much better and like Stacy said, some babies still react to the proteins in it.

Re reflux, many babies have "silent reflux" where they don't spit up or vomit - instead they do bring BF/formula/stomach acids back up but swallow them back down - which can actually hurt more as they burn on both the way up and the way down.

Good luck with whatever you decide - you are a GREAT mom!
Karen: Proud Mama to Marisa (8-11-05) and Matthew (6-5-09) and happily married to my best friend and love of my life since 10-13-01

Offline hayleysmum

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #169 on: June 18, 2006, 19:30:59 pm »
Thought I'd add my two cents as well - I had every intention of bfing for the first year.  Little did I know that I'd be faced with MFPI...  I first eliminated all dairy and all soya from my diet and then had to exclude wheat and egg.  As a non-meat eater I found this to be particularly challenging and the worst of it was, it still didn't clear up the blood in dd's stool.  She did stop vomitting and the ezcema cleared up after I excluded dairy and soya. but the only option for addressing the blood was to exclude further food groups - next on the list was fish, nuts and legumes.  The GI specialist and dietician I was seeing did not recommend this as they felt my diet would be nutritionally insufficient and my breast milk would be compromised. 

The dietician suggested topping up with Neocate before eliminating any further food groups which I agreed to try.  I had a week from h*ll when we first started this.  DD absolutely refused the Neocate (it wasn't the bottle as I'd already been expressing and giving her the occasional bottle) and we both shed heaps of tears.  I tried mixing expressed milk with Neocate but she simply screamed and refused.  In the end, I used Tracy's advice and presented nothing but the bottle - it took 36 hours of her continuing to refuse the bottle before she finally caved in out of sheer hunger.  I was an emotional wreck but dh was an absolute rock and provided as much support as possible.  The good news was that a) after the food strike she was perfectly happy switching between bottle and breast  b) the blood in her stool cleared up on two Neocate feeds a day (I continued with four breast feeds)  and c) the bottom line - we saw a significant shift in dd's personality - she went from being a touchy baby to the happiest textbook/sprited baby on the block. 

Although she was getting partial Neocate feeds I had to continue with the strict diet as long as I was breastfeeding.  I found it very difficult as it meant we couldn't go out for dinner and we had to turn down dinner invites to friend's places as I couldn't very well ask them to adhere to my extremely restricted diet.  After 3.5 months, I decided that for my sanity, to switch DD to Neocate 100%.

While I admire those that perservere with elimination diets for months on end, looking back, I do feel that my desire to breastfeed was being perhaps slightly selfish.  In our case, breastmilk was clearly not what was best for baby and I wasn't prepared to admit that.  There is such a stigma attached to bottle feeding in this day and age that I felt very guilty about giving my dd formula.  However, several months on and I can say very definitively that I do not regret making the switch to Neocate. 

I'm not advocating one over the other by any means.  I think it's a very personal decision and you need to do what you feel is best.  Although it's particularly challenging, one option to help put your mind at ease re the poop is to do a two week trial on Neocate/Alimentum.  You'll need to express at every feed on top of giving a bottle so it's a very time consuming process, however, you'd maintain your milk supply and be able to resume bfing.  This would help determine if you're still eating something that is causing a reaction

Best of luck!







Mum to Hayley 29 Nov 05 and Philippa 14 Jan 08

Offline GraceKellysmom

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #170 on: June 19, 2006, 02:26:13 am »
Beth, it kinda sounds like you guys might be having a growth spurt on top of everything. Have you gotten your period back yet? Sometimes supply will go down right before your periods come back, and baby will eat and eat and wake several times a night. (May account for the emotions too) Mine and my sister's both came back at 4 months post pardem despite exclusively breastfeeding. Another thing to consider with the grumpiness (his, lol!) is an ear infection. A lot of babies seem to get them now when teething.

I really appreciate some of our formula-feeding MSPI moms piping in with the other advice!
Stacy, Mama to
Grace Kelly 01/03, Maximilian Alexander 07/04, Faith Noelle 03/07, Henry Patrick 12/08
and my angel babies

Offline First Time Mom

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #171 on: June 19, 2006, 04:32:12 am »
Stacy, would you happen to know how common is it for a MSPI lo to have other allergies? My dd broke out into her rash when I gave her oatmeal as I mentioned so I immediately stopped, now she has broken out again as we just tried brown rice! Looks like she can only have plain rice or barley cereal. I'm beginning to worry now if she's going to have other allergies, dh and I don't have allergies but my twin has a few. Second question- when should I introduce protein? I've been reading that I should introduce meat in month 7 but I'm hesitant to, should I stick with just bfing, cereal, fruits/veggies for now? I'm in no rush to wean her so I was treating the solids as more "practice" food.

Ok, so sorry... I have a 3rd question! You're such a pro I can't help but ask you! (sorry in advance, this one's poop related)
Milena had blood in her stool from the milk products on and off for 5 months, she wasn't in discomfort once I eliminated the product from my diet in week 6 but every now and then I would make a mistake and the blood came back, always took AGES to clear. In month 6 we started solids and her poop changed- looked like the food she was eating and no visable blood the entire month. Now suddenly, her poop is fully formed and very normal looking yet her diet has not changed in the past 4 weeks (other than the intro of a new vg/ft every 3 days). Could this mean she may tolerate if I re-introduce some milk product into my diet? I'm afraid to try but I thought I'd ask if you know of bms changing once los can tolerate milk.
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Offline Beata3

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #172 on: June 19, 2006, 14:25:11 pm »
Thanks again to everyine that has chimed in regarding my post!  I really appreciate everyones advice, input, encouragement & honest feedback of your experiences ~ it means a lot to me that the formula feeding moms are helping from their end ~ and being so honest! THANK YOU!!!  I plan on continuing to BF until month 6 & then see where we are (and play around some more with the diet to see what happens ~ elliminating or reducing some of the other foods....)  But mucous (in any amounts) means that there is an intolerance, right?  (Like I said before, he has only had blood 2 times, so I go by the mucous/smell & color) ~ his behavior lately is fine ~ or at least it was until about a week ago :)

Stacy ~ nope, no period!  And my milk supply is DEFINETLY not down ~ b/c he is waking up so frequently at night & during the day with his fussiness that my supply is actually up ~ I was SO engorged this morning & in pain (even after he ate & I pumpled the other side ~ I pumped about 7 oz) ~ and my boobs still ache & are tender.  We were thinking growth spurt ~ but I thought that they don't have another one until after 6 months?  The other thing I was wondering is if it is teething ~ never been through it, so I am not sure but...

Over the last week or so his nightwaking has increased (waking up every 2-4 hours ~ where he was sleeping through the night before, and then sleeping until 5 am, and now waking up 2-3 times)... he is FUSSY during the day, wants to be on the boob all day, eating more frequently, chomping down on my boob ~ PAINFULLY!, has had a fever of 100.00 the last few days on & off & If we put anything towards him he chomps down, and drooling.  So, we are thinking it is teething, but we don't "see" anything or feel anything significant ~ his gums are firmer though.  I read that teething doesn't cause fevers or nightwaking ~ so I am not sure if that is what it is.... and if it is, how long BEFORE the tooth comes in?  I can't take much more (LOL) I feel like I am getting grumpier than the baby!

As for ear infection ~ wouldn't there be other symptoms?  (Like pulling on the ear ~ which he does not do) ~ so much for bf pprotecting against ear infections, huh? :)  And if he is grumpy if we "entertain" him ~ he stops ~ so, that is why I assume it isn't anything big ~ b/c if he was in pain he wouldn't be distracted, right?

Thank you again to everyone!  I appreciate it tremendously!!!

Beth

Offline Beata3

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #173 on: June 24, 2006, 14:15:57 pm »
Hi ~ here I go with needing more info..... hope you guys can help ease my mind, or give me some much needed insight ....  well, I have been off of dairy/soy, tomatoes/berries for quite some time & my lo still has some mucous in his poops ~ so I was wondering if any of you ~ once the "offending" foods were elliminated did your lo continue to have mucous? He is a 5 month old & bf & his poops are a yellowish/green mixture (before they were just green, mostly all mucous & stinky). Now they are mostly that "bf smell," yellowish with some green, have some substance to them, but also have some mucous in them. Wondering if there is still something bothering him, or could this be fine? (He didn't have blood in his stool on a regualr basis, just 2 times) so I can't really go based on the no blood thing.

Thanks for any help!

Beth

Offline sharlie

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #174 on: July 01, 2006, 05:08:06 am »
Hi Haleysmum,
It was quite reassuring to read what you had said below.  I breast fed my first 2 daughters for 14 months and now my third is just not working.  I have also been trying the elimination diet and had very little result.  I was dairy/soy free for two months, in the end I was eating apples, vege, meat, rice and potato chips.  It got pretty boring and still didn't get my daughter all clear.  I have tried 3 formulas now and am currently on Neocate 6 days now (still expressing).  She is still having mucus in her poo and they are still foamy but they have thickened up and only once a day.  How long did it take for your baby to get to normal poos.  We know she is lactose intolerant and also to the protein in milk, probably soy and nuts.  I'm not sure if it is something else as well.

Offline hayleysmum

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #175 on: July 03, 2006, 13:49:02 pm »
Hi Sharlie,

I'd say the blood cleared up probably within 10 days - she never really had mucous (or if she did I didn't label it as such because her poop was quite loose -almost to the point of diarrhea).  I think after a week on Neocate we started to notice a big change.  She went from pooping after every feed to once every 1-2 days.  Because of the Neocate, it also changed to a very dark green colour and was quite foul smelling - which I was told to expect and is perfectly normal. The consistency also changed and it was far stickier - almost like tar.
DD is not to the best of our knowledge lactose intolerant so don't know if that makes a difference re the mucous but Neocate should be fine for lactose intolerance.

I'd stick with the Neocate trial for a minimum of two weeks as that's how long it can take for something to clear from her system.  It can take even longer for her gut to begin healing if it's been really irritated.

As I mentioned before, I knew the Neocate was making a big difference because she became a far more contented baby.  In many regards, this proved that Neocate was the right choice for us far more so than the blood in her stool disappearing. So I guess my advice would be to look at the overall picture without focusing too much on the mucous.  If you see signs of improvement elsewhere, stick with it a little longer and the mucous may resolve a while later!

Good luck
Mum to Hayley 29 Nov 05 and Philippa 14 Jan 08

Offline marie11

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Mum eating dairy makes breastfed baby sick?
« Reply #176 on: July 06, 2006, 23:56:40 pm »
Hi there - A couple of months ago I came to the conclusion that my baby was sick if I drank cows milk, ate cheeses such as camembert and ate eggs.  So I have cut this out and she doesnt seem to be so sick anymore.  When she was sick on occasions that I had eaten these dairy items she seemed to be uncomfortable rather than a normal spill and smile!  She is just over 5mths now.  I wondered if anyone else has had similar experiences and if you reintroduced dairy to your diet when the baby was slightly older and also what happened when the baby was old enough to eat those kind of foods themselves.  I am totally breastfeeding but when she is around 9mths was wanting to start formula but wonder if this will be a problem?  Thank you...........

Offline sharlie

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Re: Milk/Soy Protein Intolerance (MSPI)
« Reply #177 on: July 07, 2006, 04:06:29 am »
Hi Hayleysmum,
Thanks for your reply, it was really helpful.  My dd has improved in a very similar way as you have described, she is a much happier little girl.  I have stopped expressing.  What a feeling of freedom.  I know neocate was the right way to go for us as well.  The worst is behind us now and we are looking forward to some smooth sailing for a while until it comes to solid time.  I have been advised to hold off on dairy, soy, eggs, nuts and fish at least until after 12 months and then be really careful so thats still a while off yet.
Thanks again.
Sharlie

Offline clh

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Re: Mum eating dairy makes breastfed baby sick?
« Reply #178 on: July 07, 2006, 19:08:53 pm »
Hi, Marie--
Sorry I'm no help to you...  I was just thinking that you may want to try to post something like this in the Food Allergies forum instead of breast feeding.  It's under Eat>Food Allergies.  I know those ladies have lots of experience with these sorts of issues (baby reacting to mom's diet, elimination diets, etc).  A moderator could just move this thread, but since I'm not one of those...  HTH
Candice



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Re: Mum eating dairy makes breastfed baby sick?
« Reply #179 on: July 07, 2006, 21:54:13 pm »
Oops!!  I sent this to breastfeeding thinking there would be more response there.    Sooo, even though there is no diagnosis, I'm merging this with the MSPI thread.  There are moms there who do elimination and restricted diets while BFing.  Sorry for all the confusion.   :(
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