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

[First Time Mom]

Too late, we just got back from our 4 hour milk challenge!

The allergist explained things more to me today, he said he was watching for reactions (skin rash, etc.) but nothing would probably show up. He said to continue giving her milk every day, small amounts and to watch for reaction. He explained that in protein allergies the typical reaction is blood in the stool (which she had when she was young) and that since it wouldn't necessarily show up visable to the eye we do the blood work again in one month, they check for various things including the level of protein and do a comparison to the original blood work we had done 2 weeks ago when she was milk free.

Yippy yippy yay!!!!! This means I can now have cheescake, cheese, pizza, butter, and every other forbidden food as of today!!!!!!!!!

Well, gotta go, I'm on my way first to Starbucks to have a real coffee drink (decaf of course due to bfing) made with real milk and a desert! May even have a piece of cheese later! I'm going to take it slow first, just in case but at least now we can have some of dd's birthday cake this Saturday during her party.

[SAHNE]

Marian!!

Congrats!!! You did it!! That is so awesome and inspiring!!  Enjoy all that yummy food!!  Happy first Birthday Milena!!

Steph

[First Time Mom]

Bummer, it's been about 8 hours since Milena was given her cow's milk and she had a runny stool. Wish I could blame it on something new she ate but not so, it has to be from the milk. I am supposed to continue giving her the milk products for a month and then go for the blood work but I am afraid to now, I think a runny bm is enough to say that the allergy is still there, thoughts? I think I'll totally lay off any milk products for both of us for the next day or two and see how her stool is, then try one more day to see again. Oh well, at least she got to taste milk and I got to have a coffee with milk and desert today. Aside from the bm she had no other changes, no bloating, fussing, nothing so that's good.

[GraceKellysmom]

Aw, shucks. Take it slow and you know best, not the allergist. If you think she's reacting, I agree, take her off and try again for confirmation.

Hope the coffee/dessert sits good with you. I'm having a heck of a time tolerating dairy again, myself.

[First Time Mom]

Coffee and desert sat fine with me but then I only put about 5 drops of milk in the coffee. I could see having a problem when I eventually eat cheese again, I would think it would sit heavy in my stomach, I can't imagine ever eating the amounts I ate in the past.

[Cassie]

Hi ladies!! 

I tried a trial of soy yogurt with Palmer twice in the past 2 weeks, but both times he started getting really crabby and his sleep decreased (shorter naps and waking up alot earlier) after the second day.  He did have a cold at the time so I am trying to convince myself that was it instead of soy intolerance.  I am way to scared to even try dairy. 

I am going to try again after the Thanksgiving as we are going out of town.  However I have been able to have some soy without seeing any change in his behavior.  I had a soy mocha this morning, so I guess we will see how tomorrow goes.

On a brighter note, I have weaned Palmer down to morning and night only.  I am going to drop the morning feeding after Thanksgiving and hopefully have him weaned entirely by Christmas.  He is drinking rice milk fine, so I ordered some rice protein to put in his sippy cup after I wean him to make sure he gets enough protein.

I was so hopeful that he would tolerate the soy.  Hopefully the next trial will go better.

[hayleysmum]

Hi Marian,

Did she consume the same amount of milk as my LO did in her challenge?  We had a total of 130ml which is a fair amount of milk to have on their first go after a dairy free life!  It could just be a shock to her little system or it could be that the intolerance is still there.  I think you're right to eliminate it for a couple of days and wait for BM to return to normal.  And then start over with very small amounts - a couple spoonfuls of yoghurt per day and see what happens. 

Good luck!

We are still suffering through this gastro bug and DD is refusing to eat and drink (with good reason as it seems she vomits everytime she has anything...) It may be a while before we can resume our dairy challenge...

Steph

[ashti]

Hello,
My daugher cannot tolerate soy or milk.  When she was a couple months old, she had unpleasant reactions when I fed her a bottle of soy formula, then later a bottle of milk formula.  I called her pediatrician when it happened and was advised not to feed her any more formula.  That was the extent of her diagnosis.  Later, when she was five months old and we were still struggling I stumbled onto this website and read this entire thread.  I had no clue that if I stopped eating milk and soy while I was BFing, my lo's symptoms would completely go away.  So I started the mspi diet right away.  Things have been going perfectly ever since.
At lo's 1 year well-baby, I asked about weaning options.  All of a sudden her ped wants to get her officially tested and diagnosed.  She is sending us to an allergist.  I'm nervous, just because I know she has such negative reactions.  Her most recent reaction was to a trial of milk products her ped requested I give, just last week. 
On one side I'm relieved to be getting an official diagnosis, but on the other hand, we've made it this far without one and I already know what I need to know: keep her milk and soy free!   
Any opinions?

[First Time Mom]

Steph, I don't know how much she actually took as we used a cup and she dribbled so much out, we then used a syringe so in total for the morning she had maybe 6 full syringes, it did seem like a lot to me. Never even occured to me that it might have been too much for an initial start! She had one loose bm tonight and that was with no milk today. I'm going to wait until her bm's firm up and then I'm going to give her plain yogurt to try, it'll be easier on her than milk I think. Hopefully it will be within a few days.

Cassie, I noticed Palmer is around Milena's age, I'm bfing 4x a day because I was worried about the calcium, not the protein, does Palmer eat enough meats? How are you getting the calcium into him? I bought a soy milk that's calcium enriched (Milena is fine when I have soy), it has sodium in it, should I be concerned with this? She has zero salt in her diet because I make all her foods.

Ashti, I would go ahead and get her tested as long as they are doing it properly (not just the skin prick test as this is not valid for a protein allergy). They do supposedly get over the allergy after the first year so it wouldn't hurt to check. What was her reaction to the milk products you gave last week?

 

[ashti]

Marian- My daughter's ped told me to try milk.  I was really skeptical, but the ped insisted, saying I didn't know for sure she was allergic to milk unless I tried her on milk.  She said that her reacting to milk based formulas didn't count.  I boiled the milk first to try to break down some of the proteins.  I fed her a tiny bit, LESS than 5cc's.  She went down for her nap and when she woke up, she was covered in a rash.  Her next poopy diaper was super runny and smelt like it was straight acid.  I am just nervous about the allergy testing, because I don't know what kind of testing they will do yet. 

Cassie-My lo's ped and gi doc will not let me give my lo rice milk.  Not even for lunch in a sippy instead of water.  I really think I should be able to.  Did you have any problems getting an ok from your lo's ped?  I would love to present the idea to them again, but this time with supporting evidence of why it would work well for my daughter.  Although, she refuses to drink it.    Not that I'm admitting I tried it against her ped's advise.  Hehe.

Also, today was a 1 nap day for my lo.  She is still just a year, but has started to refuse to take 2 naps.  Well, she will only nurse after she wakes up, so usually at 7am, 11am, and 4pm.  But when she only takes 1 nap a day, I can't get her to nurse more than twice, at 7am and 3pm.  It just worries me that I'm not getting enough calcium in her.  Especially since her ped won't let me feed her calcium enriched rice milk in a sippy.  Ok, I'm done dwelling on the rice milk now.  I know there are other forms of calcium, like in leafy greens.  I'm meeting with a nutritionist soon to help me learn more about how to get calcium rich foods into my lo's diet.  If you all have any ideas on calcium rich foods, and ways to get a toddler to eat them, please share.

[hayleysmum]

Hi Marian & Ashti,

My LO is the same age as well - just coming up to her 1st birthday in a couple of weeks.  We've been on a liquid calcium supplement prescribed by our GP for several months now as there's no way she's getting enough through her diet alone.  I'm suprised that your ped hasn't suggested the same thing?

The best sources of calcium are tinned salmon (vs fresh because they include the calcified bones in the tinned variety), sardines, watercress (I add it to mashed potatoes which disguises the strong flavour), spinach, kale, etc.  I'm lucky because my LO loves salmon so she's happy to eat it several times per week.  I also give her the calcium fortified orange juice for breakfast (watered down).

Ashti - I wouldn't worry about the allergy test.  Best to have them see her reaction first hand.  The immediate rash (vs eczema) doesn't really seem consistent from what I've seen of MSPI or MFPI so I'm wondering if it's something else that's triggering the rash?

You can also use Neocate formula as an alternative to milk (that's what we use) - it's corn-based and specifically designed for MSPI/MFPI children.  I don't think that rice milk is very nutritional (which may be why your ped doesn't advise it).

[ashti]

Steph-  Thanks for the advice on the calcium.  That's good to know about salmon.  I haven't tried lo on fish yet, but it sounds like it might be a good idea to try for the protein and calcium.

She has eczema too.  It's always there, no matter what I do.  But the rash she gets when she eats milk is very different.  It's similar to a rash a person would get if they took an antibiotic they were allergic too.  It's usually all over her body, but heaviest on her trunk.  I am certain it's the milk, because the first incidence was when she a was a baby, and wasn't eating any other foods.  And the reaction comes fairly quickly after she eats the milk.
 
I'm agreeing with you that the skin rash isn't a usual MSPI reaction.  She hasn't ever been diagnosed as MSPI.  If I had to guess, based on my own research, I would say she has a true allergy to  milk.  That's just a guess though.  The reactions she has to soy seem all gi based, so that seems like an intolerance to me. 

I just got the referral to the allergist today, so I'll call and see how long I have to wait to get her in for a consultation.  I hope not too long, I'd like to get it done soon.

[Cassie]

My pedi is aware that I am giving Palmer rice milk; however, I didn't really discuss it with her first because I am a registered dietitian.  I figure I probably know more than she does in this particular area (and she agrees... hahaha).  

I have no idea why giving rice milk to a child close to or over a year would be a problem as long as the child was eating solid foods well.  As far a calcium goes, 8oz of enriched rice milk provides 30% of an ADULT'S calcium needs.  Palmer nurses twice and gets 8-9oz of enriched rice milk/day.  That should be enough to meet his needs.  Plus what is really the other option?  I have tried Neocate/Elecare... P refuses to drink it because honestly it tastes nasty.  I really need to wean him for my own sanity.  I don't think he is quite ready for soy (lets hope he tolerates it better soon!).  So rice or some other (oat, potato) milk are my only choices.  Check out this thread ... RICE MILK.  Hopefully it will set your mind at ease!

I have used rice milk with many of my allergic/intolerant patients without problems.  Just my 2 cents of course.  You should definitely clear it with your pedi.

I got the rice protein in the mail today.  I am going to try it tomorrow.  Hope he does ok with it.  Yes, Palmer does eat some meat.  What I am mostly concerned about is the night time bottle.  I don't know that rice milk alone will be enough to hold him throughout the night.  So I would like to add some rice protein and maybe some Flax oil.  I also have a liquid vitamin I am going to start giving him.

[ashti]

Hello-
Are any of your MSPI babies allergic to other proteins too?  I am starting to see a lot of reactions in my dd that I didn't notice before.  I'm seeing eczema flare-ups on the days I feed her meat.  I don't feed her meat everyday, because I don't eat meat everyday, but she eats beans everyday and does fine with those.  On the days I feed her meat, her eczema flares up within a few hours.  Tonight she was so red and itchy all over.  Poor thing. 
Hope you are all doing well.

[hayleysmum]

Hi Ashti,

When DD was born she was diagnosed with MFPI (multiple food protein intolerance) as she was extremely sensitive to my breastmilk eventhough I eliminated heaps of things from my diet including dairy, soy, wheat and egg.  In the end, we had to give her Neocate as I couldn't get rid of the blood in her poop from changes to my diet alone.  Our gastro told us that children are typically intolerant along a continuum of foods listed below in order of those most likely to trigger a reaction.  Most kids with MFPI are only affected by milk and soy (hence MSPI):

1.  Milk
2.  Soy
3.  Wheat
4.  Eggs (egg whites because that contains the protein)
5.  Fish (in particular white fish & shellfish, oily fish like salmon are less likely to invoke a reaction)
6.  Nuts
7.  Legumes

My understanding of MFPI is that the problem is with the body's ability to break down protein.  The protein structure in milk (and soy which is almost identical to milk) is complex and contains numerous fractions.  This presumably makes it harder for the body to break down the protein and hence why they are the top triggers for MFPI.  I think that meat, on the other hand, is not very fragmented and is easier to digest.

So while I wouldn't rule out the possibility of your DD having MFPI, I'm wondering if there's something other than protein intolerance that's the root cause?