Milk/Soy Protein Intolerance - MSPI - READ HERE!!!

[taylah's mum]

I've never heard of goat's milk formula...any idea where you get it?

most pharmacies have goats milk ,lactose free , soy formulas

[kim&savannah]

I haven't gone back and reread this whole thread, but I'm back--baby #2 is also MSPI and I can't remember a few things about what to avoid--is everything that lists Natural Flavors bad?  Because I know the list of things that are ok at the beginning of this thread mentions a few things, like chewy candies (only one I can think of right now ), that are usually ok, but everything I find says "natural flavors".  Can that mean anything?  Is there a way to tell?

Thanks!

~Kim

[Stargrl]

hey, I just wanted to come back & update on this board since this thread helped me SO MUCH when I was dealing with my son's milk protein intolerance! It was diagnosed when he was 2 months old, when I mentioned to my doc that he always had green poops and I'd recently noticed mucous.  Fortunately, she knew what that indicated & tested his bm, which was positive for bleeding: milk protein intolerance. Since I was exclusively breastfeeding, I cut out all forms of dairy x2 months which greatly improved matters, but he still had traces of blood in his bm. From that point til he was 8 months I worked on eliminating one thing or another trying to figure out what else he was intolerant to (i.e., wheat, eggs, gluten, corn, etc.).  Against my better judgment, I did an elimination diet as recommended by some people on an allergy forum.  I only lasted for 2 weeks, then said to heck with it-- I thought just cutting out dairy & soy were bad!!  Later I read an article written for the Journal for American Academy of Pediatrics and it mentioned that milk & soy were the main culprits, with sometimes (quite rarely) egg protein being a problem.  I decided to test it on him directly (egg yolk since he was 8 mo.), and BAMMO! that was the answer!  Once that was established, I was able to add back soy & he had no problems, even with directly ingesting soy milk or tofu.  At a year, I tested dairy on him with no reaction; 2 weeks later I tried eggs again and sadly he's still definitely intolerant.  I am able to eat eggs a few times a week with no reactions from him, and I've decided to try it again when he's 18 months. (he's 15 months now).  So, if anyone has cut out both dairy & soy and still are finding your LO has traces of blood in their bm, try cutting out egg.  Thanks again for all the input and help I've received here!

-regina

[lilypaige]

Wow... this thread is so amazing. Our 2 week old (she's been with us for 6 weeks; she was a month premature) has just been diagnosed with MSPI. The pediatrician told us her symptoms would likely ease up in 8 weeks - does the blood stay in the stools for the duration? Because she wasn't gaining our doctor had us top up with formula. We're trying soy/milk free formulas now. How do we know when a formula is a good fit - does the one week rule apply or will the baby give us queues (sleep more, less pain, less irritability)? Will the blood disappear from her stools? Our plan is to give her breast milk only once she's at a good weight. At the moment she is a very lazy feeder (she's so tired she "falls asleep at the wheel").
Is there anything we can give her for pain?
Thanks in advance. Once again, great to have this resource here to share experiences/info.
Lily Paige, Mum and Dad

[motherof3]

Lilypaige-

When Abby started on Neocate we started to see a really improvement at about 2wks.  I would def give it longer then 1 wk.  It can take a long time to get the milk/soy out of her system.  Are you also doing the milk/soy free diet since you are also breastfeeding?  No by pain...does she also have reflux?  Abby had both reflux and MSPI.  I am not sure about the blood in her stool.  I would ask the dr.  It will probably last until her insides heal.  Not sure how long this can take.    What formula is she on now?

Andrea

[First Time Mom]

Lilypaige, the intestines can take up to 8 weeks to heal so it may take that long for the blood to stop. My dd was diagnosed at 6 weeks of age, she had the blood, I had to go completely milk free. She's now 18.5 months and her milk protein allergy is completely over (started cow's milk last week with complete success). The odd time I'd have trace milk products (in error, at a restaurant) the blood would start again and take her 6-8 weeks to heal.

BTW, my dd was very slow to gain weight (still is), always off the chart, now finally at the 10% for weight, if you want to bf adding the formula may hinder your supply. I would suggest feeding on demand to increase your supply. My first ped told me to stop bfing at 3 months due to slow weight gain, I instead changed peds and the new one said the weight gain was slow but steady for the most part, not to stop bfing or to supplement with formula, but instead we had to monthly monitor her weight gain. Not suggesting in any way that you don't "listen" to your doctor, but instead I'm saying ask him/her if there's anything you can do with bfing so that she gains weight with bfing.

[lilypaige]

Thanks Andrea, Marian 
Interesting that Abby had reflux and MSPI, we have started to watch Lily for symptoms of reflux since reading your reply.
We decided to take Lily right off formula and try to exclusively bf if possible. I am on a soy and milk free diet. Would really like to keep on w/o using formula. We'll see how Lily weighs in next visit with the dr. We have both a GP and a ped (who diagnosed her) and will likely go with ped's suggestions over the dr's since he put us first on formula and then on a soy-based one when Lily reacted to the formula. We will keep Neocate in mind since it's been mentioned to me before.
I've also removed egg from my diet after reading through this thread.
Thanks again for your replies... i'd honestly be lost without this site
Lily's exhausted-but-now-hopeful mum

[fitfamily]

I have to echo your praise about this thread.  For the first 4mos of my DS life we had no idea he was MSPI.  He did have silent reflux and the dr. said "you may want to limit your dairy and soy"  Well, that wasn't a strong enough warning.  I found out from this thread, based upon his symptoms (no blood, but mucous) that he was MSPI.  I also had to cut out peanut butter at 6mo.  He was one of the few that still can't take Nutramigen or Alimentum.  Besides BM the only other option for us is Goat Milk and I'd have to add iron, vit., and folic acid.  So, we stuck with BF.  He has always been lean.  Dropping from the 25% to 3-5%. My Ped. isn't worried and neither am I.  Developmentally, he is on track.  The 2 good things about a clean diet and BF:  you lose weight and your baby is happy.   
Best of luck.  Oh, one last thing.  He really wasn't a good nurser until about 4 mo.  Ironically, that is when I cleaned up my diet totally. 

[Elaine0911]

Hi, I want some advice!! my son Ronan is coming 12 weeks and has been on five different milk combinations since he was born. He has reflux, but the Health visitor now thinks that it could be a cows milk protein intolerance aswell as reflux. He is currently on Lactose free Enfamil with Carobel to thicken the milk.

His milk intake has decreased from 6oz every three hours to 3/4oz every 3hours. He would cough constantly through the feed, and get very stressed and almost not want to suck on the teat and would almost immediately bring about an ounce back up. His stools are green and he would be quite uncomfortable during the night with him passing wind after each feed and spewing in his sleep.

My doctor wants him to be admitted to hospital and he his due to see the dietician next week, but can someone let me know if this sounds like an intolerance, and what I can do or am I just sleep deprived!!!

[motherof3]

It could be an intolerance it is really hard to tell until you try a hypoallergenic formula or Neocate.  I know that Neocate is available in the UK.  Some babies will do fine on a hypo formula but Abby was still bothered by the milk proteins in Nutramigen so her pedi GI switched her to Neocate. 

Is he on any meds for reflux?  Why do they want to admit him to the hospital?

Andrea

[Elaine0911]

he is on carobel, which thickens the milk so it stays down longer or it is supposed to. the only problem he gets terrible wind and you cant put too much in his milk due to the starch in it.

they want to admit him to hospital to observe his feeding due to the amount of changes he has had and that they have only worked in relieving his symptoms for a few days and then he goes back again.

I am just confused and at the end of my nerves

[motherof3]

Sounds like he really needs to be put on a reflux med.  The carobel won't do anything to neutralize the acid that his stomach is producing.  I am suprised that they won't try a med before they hospitalize him.  I would ask about a reflux med and see if you can try a hypoallergenic formula.

Andrea

[marcimommy]

Hi can I join in? I am so happy I have found this thread. DS is 16 weeks old now and we had problems since he was just 3 weeks old. His syptomes are the following: runny greenish poop, first it's always a little bit sticky and mucousy and then it's just watery, he struggles to poop for hours sometimes for days, he is of course very gassy and very fussy especially at night  His aneaus is always very red. When he finally has a BM it is like a blast. He spits up a lot and has a lot of hickups as well. He gets Zantac for reflux and he doesn't seem to be bothered by the spitting up. He never was tested for any allergies or lactase defiancy. Any time we brought him to a doctor we always got the same answer "He's just colicky. There's nothing to do about it, and he will grow out of it." But seeing him suffer so much breaks my heart and I really want to know what causes his discomfort. I have been on a dairy free diet since he was 3 weeks old but noone told me to pay attention to soy protein as well.
Should we insist of getting a test at this age or should we wait until he gets a bit older? Is the test intrusive? They keep telling us by 6 months he will be over it but I don't know, some days it gets better but a few days later we are always back to the same problems. 

[motherof3]

Marcimommy-

Def sounds like it is MSPI.  Yes, I would try to also remove soy from your diet.  Have you checked out the milk free list at the beginning of the thread?  Milk is hidden in so many things you really have to be careful.  I had Abby tested for milk and soy intolerance about 3 months ago.  I had it done through Enterolabs in Dallas, Texas.  I don't know if you are in the Us or not.  It is done through a stool test, it came back positive for both.  It is supposed to more reliable then blood tests.  Abby was tested for milk and soy allergy through blood work and it came back negative.  She has an intolerance not an allergy.  Sometimes even on a milk and soy free diet there are other things that can bother them.  Some moms have had to do a total elimination diet to figure it out.  Here is a link for a message board where there are other breastfeeding moms that have MSPi kiddos and some also have other allergies.  They would be lots of help also!  http://www.quicktopic.com/23/H/aSxbbAkUULVMX

Andrea

[marcimommy]

Thank you for the reply.
We had some tests today. We live in the US, in Florida. I am reading labels and keep an eye out for hidden dairy. Soy would be really hard to eleminate though. I was told today that they had to do an endoscopic test in order to find out if he had protein intolerancy. So you say it can be done with a simple stool test?  What is the test called?