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

[kc]

Stacy,

Thank you so much for your information on this subject!! 

The more info I get though, the more I panic  :?

My lo does not show any signs of the allergy with the foods I eat thankfully but I have just come to realise that I do not drink milk only in tea (probably at most twice a day) My downfall would be cheese though I dread having to give that up  :?

We received Nutramigen last week, it is the most foul smelling thing ever, I have not yet brought myself to try Sarah with it  :!:

[GraceKellysmom]

From what I have read, I think that the increased   can lead to total intolerance or food allergy as an adult. It can be SOOOOOO hard to follow the MSPI diet, especially if you don't have support of your spouse and/or family. I worked really hard to find suitable substitutes so now I actually enjoy what I eat and I eat a big variety of foods. It is all about finding the safe foods (these can be easy foods - frozen and processed ones are out there) and sticking to them, it doesn't have to be about veggies and beans!  :wink:  I love to bake and cook, too, and my crock pot does the work for me several nights a week.

Those predigested formulas like Nutramigen, Alimentum, Carnation, they only work for some babies. I tried searching the message forum at  http://www.mspiguide.com/  and came up with a couple formulas that you could try. One seems quite popular, Neocate, but some babies react because it is made from corn. Another is Elicare or maybe Elecare. I think they might be available by prescription or from your doctor. Do you have a supportive doctor?

A bit of rice milk in tea really doesn't taste too bad. I found that the first weeks of the diet were the hardest. Giving up cheese was hard. But each week it gets easier, especially as my pregnancy weight rolled off  ! I guess I figure that in the grand scheme of things, this period of time that I nurse and have to eat this way is so short compared to a lifetime of health for my kids. I can't imagine my baby never, ever being able to eat something like ice cream some day, so for now I am willing to do what it takes to make that happen for him. I am not willing to give up nursing though, so it's this or he starves!

[lulah'smum]

Stacy, I want to thank you for putting a name to what I think my DD is experiencing.  She has been diagnosed with reflux - I don't know if this is linked to MSPI in any way?  In any case, here's a story I posted on the reflux board:

After reading the MSPI (Milk/Soy Protein Intolerance) announcement on the breastfeeding board something has just suddenly occured to me!    :!: :idea: During my entire pregnancy, any time I had dairy (milk in particular) I would vomit uncontrollably.  I was 20 weeks by the time I linked my sickness to dairy, so I stopped drinking milk and eating cheese and felt much better.  I still vomited at least once or twice a week for the remainder of my pregnancy, so I'm now thinking that it may have been the soy.  I occasionally had soy milk on my cereal in the morning.  :shock:

Also, from 30 weeks onwards, the baby had hiccups in my tummy about 7-8 times each day and usually after I ate!!!  It was really annoying, especially when I was trying to sleep.  She still has "wet" hiccups a few times each day now, which is a reflux symptom.

Well, to all those Doctors and Midwives who told me my diet had nothing to do with Tallulah's reflux, wake up  :evil: !!  I'm obviously intolerant to dairy/soy and so is she!

[GraceKellysmom]

Oh I am so glad it has helped! (hee, hee, I am a touch reflux libra too!  :wink: ) Isn't it wonderful when we finally figure out what is "wrong" with our babies and can help them feel better? Do YOU feel better eating the MSPI diet too? I sure do!

[luv2savelives]

I wanted to get this information out there to those parents with mspi kids. If you are willing to try an alternative therapy, your child may be able to be "cured". I was very skeptical when I was told about acupressure by a friend. It sounded like voodoo and it sounded like a hoax. But after 5 months of dd#1 having bloody stools, exzema, and tummy aches from mspi, I took the chance and took her to an NAET doctor. She was treated ONE time for her milk allergy and has never had a problem with it since. In fact milk is her favorite drink today at 2yrs old! When dd#2 was born, I prayed she wouldn't have mspi, but alas she did. After dealing with her tummy aches, I again took her to the same doctor. After 2 treatments for her milk allergy, she too is now tolerating it when I eat/drink dairy. I loved saying goodbye to the mspi diet! Here is the quick breakdown of how it works. It is based on the idea that there are meridians in the body that when they get out of balance, can cause allergies. If treated for that allergen, the meridians realign and no longer recognize that food as an allergen. This is what happen, you hold a vial containing (milk if that is what you are allergic to) and they treat you with acupressure on your back. Then for 25 hours after the treatment you must avoid that particular food. In my case, I pumped to keep my supply up while I gave both dd's Sililac Alimentum. After the 25 hours, the meridians should have "fixed themselves" and in my case, you no longer are allergic!! I know it sounds crazy but I have seen it work twice and know of several others that it has worked for. This would work for any kind of allergy...milk, soy, wheat, etc. Insurance usually doesn't pay for it and it can be a little pricey, but it was worth it for me. If you have ANY questions at all about this treatment, feel free to pm me. The website is NAET.com and you can locate a doctor there as well. Don't just rool your eyes and ignore this info like  I did at first....My girls are proof it works. I praise God daily for their healing. Good Luck!!

[GraceKellysmom]

Wow, I am so glad that you found something that worked for your situation.

Unfortunately, I do not believe in that type of "healing."

But thanks for sharing, it may help someone else.

[lulah'smum]

Well, if I can find a reputable therapist in Sydney I'll definitely give it a try!  I'm willing to try anything at this point as avoiding milk and soy is extremely difficult as I'm finding out.  I also have to avoid sugar, eggs and citrus and they also upset dd.  I'm losing quite a bit of weight (I weigh less now than I did on my wedding day) and I have had two blackouts which is quite alarming to say the least.  So to go back to eating "normally" again would be a dream come true as I definitely want to continue breastfeeding.

Thanks for your advice.

[grahamsmama]

If it says it's "dairy free" is that ok?  I have the Light Smart balance spread, but it says it has natural flavorings.  Isnt that one of the things to avoid?  I'm so stressed out that I'll miss something and cause her problems to worsen!

[GraceKellysmom]

Lyn, if I were you, I would avoid anything that says "natural flavorings" for at least a couple weeks. Then try to add something like your margarine back in, one thing at a time, and check for a reaction. If it's just an intolerance that she has, she may be able to tolerate certain things. I've found that to be true with ds.

The more you can avoid, the better chance they have to heal. I'm happy to say that I've found substitutes for nearly every food that I love, and eating this way has just become a way of life. I do miss pizza though!

[luv2savelives]

Lyn,
"Dairy free" doesn't actually mean dairy free in all cases. Check the ingredients for milk, whey, caseinate, lecithin. As Gracekellys mom said, not all kids react to all types but if your lo has a reaction you can see if it was to the caseinate and/or lecithin. Mine was severe reaction even if no milk...just the caseinate or lecithin. Hopes yours tolerates it better!

[grahamsmama]

"Dairy free" doesn't actually mean dairy free in all cases.

How confusing is that?!!!  :?
I must admit this whole thing is really stressing me out.  I went to the store yesterday and got things I think will be ok.  I guess the trick is to only eat things that aren't very processed.  I got bread, pita, pasta, and rice cakes that don't have many ingredients. Nothing I don't recognize at least! 
I did get some wasa Multi Grain crackers.  There are two ingredients I'm not sure about, Malt extract and monoglycerides.  Are those fine? 
Gosh, I feel clueless. 
I'm sure it will get easier with time.

[Oskarsmum]

Hi
I'm wondering whether my ds has an allergy to milk. He doesn't feed well during the day (I start my day with porridge (oats) with 250 mls of milk). His poo is very green, runny, mucousy and smelly. He has also started fussing at the breast and crying after a few mouthfuls then rejecting the breast. We tried formula the other day for the df and in the morning he was covered in a rash and had a puffy face, especially around the eyes. He doesn't have any blood in his stools though. Your opinion is very valued. Thanks!

[GraceKellysmom]

Oskarsmom, that reaction to formula is really scary. I wouldn't give it to him ever again, and he needs to be seen by a doctor. The blood in the stool is often microscopic. Let us know what the doctor says.

Lyn ->Malt extract can contain traces of milk protein. It is hard to find bread without it. I had a local bakery (through a natural foods store) that made all their bread milk-free. It is actually pretty easy to make your own bread, which is what I do now, in a bread maker every couple days. Do you own one or have one you could borrow? Or if you like bagels, I have had success with a brand I get at Walmart that doesn't have dairy or soy in it. They are fine for toast and sandwiches.

I know you're in the states, so I can be of help with some brands.

[grahamsmama]

Thanks Stacy, I'll avoid those crackers then. 
Oskarsmum- I definitely agree, take him to your pediatrician ASAP.  I couldn't see the blood in E's stool, but they found it when they tested for it.  Sounds like something is going on with your lo.  He sounds so much like my dd!  Good  luck, I hope a diet change will make things much better for you guys.

[Mommy_Christine]

Thank you Stacy for all the information!  I have a 6 month old with a milk and egg allergy, so I am trying my best to avoid those products.  I have two questions and haven't had much luck finding answers....

1.  I have read that Junior Mints do not have milk, but one of the ingredients is cocoa butter.... doesn't that have milk in it?

2.  I have also read that Bisquick is milk free, mine seems to have buttermilk listed as an ingredient... doesn't that have milk in it?  (I do have the generic brand, so that may be the difference)

Thanks in advance for any replies!

Christine