~*~*MSPI Moms Weekly Check-In*~*~ 07/14

RingOfFire11

~*~*MSPI Moms Weekly Check-In*~*~

Welcome! This is a check-in for moms who are/were on a dairy free and/or soy free diet due to their LO's intolerance. The check-ins will be posted every Monday on the Breastfeeding board and XP'd to the Food Allergy board. If you'd like to join the group, just post an intro here and dive in! To check out the archive of our previous check-ins, please see the MSPI Moms Blog (www.mspimoms.blogspot.com).

1. How are you doing? How is your LO doing?

2. How long have you been on the diet? Are you avoiding any other food(s)?

3. Any other burning questions you'd like answered or experiences to share?

4. Had you heard of MSPI prior to going through this with your LO(s)?

RingOfFire11

1. How are you doing? How is your LO doing? We are both doing good! Her diapers have been surprisingly great this week with minimal mucous and no blood!!

2. How long have you been on the diet? Are you avoiding any other food(s)? I started when DD2 was 6 weeks old (she'll be 6 months next week). I'm currently avoiding dairy, soy, eggs, nuts, beef, corn, wheat and black beans. I'm recently staying away from pineapple too.

3. Any other burning questions you'd like answered or experiences to share? Introducing solids is going good so far! Banana and oatmeal (Happy Bellies) were both successful. Yay!!  

4. Had you heard of MSPI prior to going through this with your LO(s)? No. I was aware that dairy/soy allergies existed but never knew it had a name or ever considered the impact to BF'ing. This board is how I figured out what was going on the week before my DD was diagnosed.

amichelle723

1. How are you doing? How is your LO doing?

DD is recovering from bronchitis, and I'm recovering from a sinus infection, but I think we're on the upswing. I was concerned that her diapers may get mucusy with all her congestion, but they've stayed normal so far.

2. How long have you been on the diet? Are you avoiding any other food(s)?

We have been on the diet for 8 months...sheesh that sounds like a long time. I am also avoiding tree nuts and beef. I may be reintroducing beef soon. I gave beef directly to DD for the first time this weekend and she did fine. I'm pretty certain that she reacted to it with a prior challenge a few months ago when I ate beef, so maybe she's outgrowing some of her food intolerances?

3. Any other burning questions you'd like answered or experiences to share?

I've talked before about how with some foods, DD doesn't react until 3-4 days of consecutive exposure through breastmilk. Now that she is eating solids, I am planning to do food trials by giving the food directly to her so that if she reacts my supply isn't contaminated. I'm wondering if the same time course will be true with her eating the food directly- will she do ok the first few days then react? She had one piece of beef this weekend and I'm not sure if that's enough to say she's ok with beef or if I need to be giving it to her for several days in a row to be sure. I know with true allergies (not intolerance) the reaction is typically with the second exposure, but don't know about intolerances.

4. Had you heard of MSPI prior to going through this with your LO(s)?

I have a friend whose baby was MPI only and she switched to a soy-based formula. No one that stuck with breastfeeding though.

chknma

Good morning!

1. How are you doing? How is your LO doing?
DD2 is doing well! She had a few mucusy diapers over the weekend, but they are looking better the past day or so.

I've been doing pretty good, but being back to work full time I really need to plan ahead fr healthy snacks.

2. How long have you been on the diet? Are you avoiding any other food(s)?
9 weeks in and seem to be doing okay with just all cutting dairy/soy.

3. Any other burning questions you'd like answered or experiences to share?
I cut natural flavoring a few weeks ago after asking about it here. I've seen that other people have to worry about their spices. If they don't list ingredients is it safe to assume that they don't have anything added?

4. Had you heard of MSPI prior to going through this with your LO(s)?
I had read about it on TB before DD1 started with her issues. I think that helped me not freak out when she had her first stool with blood.

amichelle723

@casey78 I did a bit of research a few months ago and from what I recall non-IgE allergies are usually more of intolerances/sensitivities vs. true allergies, and are generally outgrown sooner and less likely to be lifelong. I could be mistaken because it has been awhile since I really reviewed the literature though. Also, I believe that blood in the stool is a key feature that is unique to non-IgE reactions. This article talks about the differences specifically with cows milk allergies, and outlines strategies for reintroducing foods. I know your situation is a bit different, but maybe some of it will be helpful.

Your experience with the testing is interesting. When I asked my pedi about allergy testing, her response was "If you know what foods bother her, what's the point? If the test comes back positive you've confirmed what you already know. If it's negative, you'll still avoid the food because you know she'll have a reaction." I kind of wanted to do testing (if problems are still present at 1 year) to confirm it and see if there are other potential problems. 

[Deleted User]

@casey78 I have also heard that the real test of a food allergy is seeing a reaction from eating the food. The lab tests, especially when they're young, are not entirely reliable. So, if she's reacting to eating a food or you eating a food, avoid that food for awhile. Allergies and intolerances can both be outgrown. That's about the limit of my knowledge  of allergies, so you might try checking in on the Food Allergy board.

@amichelle723 I'm not sure about how much direct exposure might be needed to see a reaction. My DS reacted almost immediately, or within 24 hrs, to new foods that he was intolerant of. He'd usually get a rash on his face and sometimes diaper rash.

@chknma In packaged foods, it's probably safe to assume there's no spices in the food if it's not listed in the ingredients. For prepared foods, like in a deli case, it's a bit more iffy. The food preparer may not necessarily think to list all the spices, and soy oil or other additives could be in the spices used.

camedowncrushing

casey78  Poor you with the banana!   From what I understand intolerances and allergies can both be outgrown.  The RAST isn't completely accurate.  With DD1 we got a clear RAST which was a relief to me, but when I tried to add in dairy a month later (once I worked up the courage) she got really fussy.  Her diapers looked fine, but clearly something wasn't agreeing with her.  I tried again at 10 months, and she was fine.  I *think* her gut was just matured at that point.  If your baby is getting upset I would avoid the dairy, and try again later. 
I have heard that the skin tests are more accurate, but that pediatric allergists do not like to do them on kids because there is a higher risk of having a bad reaction.

CherSomething

1. How are you doing? How is your LO doing? We are hanging in there. Baby's diaper rash has about cleared up, but she still is having mucous diapers.

2. How long have you been on the diet? Are you avoiding any other food(s)?

We've been doing this for about a week and half, but only had a really good elimination for the past few days when I learned more about it. 

3. Any other burning questions you'd like answered or experiences to share? Not at this time. 

4. Had you heard of MSPI prior to going through this with your LO(s)? No. I know mothers have to eliminate foods based on their baby's intolerances, but hadn't specifically heard of MSPI until now. 

camedowncrushing

1. How are you doing? How is your LO doing? We are both good!  We have our allergist appt tomorrow.

2. How long have you been on the diet? Are you avoiding any other food(s)?  This time around 6 months...with DD1 until she was 10 months.  This time I am sairy, soy, wheat, egg and now peanut free. 

3. Any other burning questions you'd like answered or experiences to share?  I am itching to add in dairy....I am thinking of trying to add in some hidden dairy first, but I keep chickening out.  Our RAST was clear for dairy so I keep wanting to try.  Then I realize that even if I can eat dairy it really isn't opening up that many choices for me because I still can't eat wheat or eggs....ehhh...I would kill for a piece of pizza! 

4. Had you heard of MSPI prior to going through this with your LO(s)?  Yes, but I didn't really think too much about it. 

giggler25

1. How are you doing? How is your LO doing?
- Hanging in there. Finally got some MSPI groceries yesterday so at least now I feel a little more normal. Unfortunately Emily still has mucousy diapers with some pink stains.

2. How long have you been on the diet? Are you avoiding any other food(s)?
- I've been avoiding dairy for 2.5 weeks now but have only been doing a good job of avoiding soy for about a week.

3. Any other burning questions you'd like answered or experiences to share?
- For the past week Emily has had what looks like a light pink stain around her poop. This is what I brought in last week when the pedi confirmed she had blood. Its weird though BC it's like watery blood that squirts out when she poops rather than specks of blood in her poop which is what I originally saw. Anyone have the same experience? Everything I've seen online re food allergies seems to be bright red blood smears or flecks in the poop. Hers is like a stain around the poop.

4. Had you heard of MSPI prior to going through this with your LO(s)?
- No, not all all. Still wish I hadn't.

Susiepoo04

1. How are you doing? How is your LO doing?
Soso. Got a lot of fussing and mucousy diarrhea on Sunday. Now we are back to mucousy non diarrhea. Rash is still present and baby is scratching/clawing the face a lot. Does that mean it is very itchy? Is it normal for newborns to rub their face constantly?

Baby writhes around at the breast. Is this a sign of contaminated milk?

2. How long have you been on the diet? Are you avoiding any other food(s)? Avoiding milk and soy since our diagnosis last weekend. I accidentally ate two pieces of gnocchi that probably had butter. Does that small amount lead to the flare? (If so, that could have caused our flare on sundae)

3. Any other burning questions you'd like answered or experiences to share?
Questions peppered throughout above.

I'm hoping this gets better soon. How long did it take for things to get better for your LOs? Sounds like it can take a while...

4. Had you heard of MSPI prior to going through this with your LO(s)?
No.

[Deleted User]

@Susiepoo04‌ yes that small amount could have caused the flare up. Does it look like she has excema, or a rash? That can be another sign of intolerance. The writhing at the breast can be due to forceful letdown. I had oversupply and forceful letdown; those often go together, and oversupply can also cause green/frothy/mucousy stools with occasional flecks of blood. Do you think that could be a problem?
It took a long time (5 mo) for us to figure out all of my LOs intolerances, but he had more than MSPI. It can take 3-5 weeks for the proteins to clear out of your systems, so it will likely take at least that long. But, I did see some improvement almost right away - less gas, spit up, and fussiness as soon as I cut obvious dairy. Things gradually improved as I cut out more foods. I know it's hard to wait, but hang in there! Things should be getting better soon.

giggler25

@RingofFire11 -- Hooray for no blood and minimal mucous!!  Glad you're having a good week!

@casey78 -- Hooray for 1 year!!!  Kudos!  Leah is a CUTIE!

@chknma -- Glad to hear your mucousy diapers are improving!  If you have it handy, can you point me to link about flavorings/spices?  Is it that some LOs are sensitive to that actual spices, or that they may contain something else that could be an allergen?  I had no idea about this!!  {Newb.}

StinaLeigh

1. How are you doing? How is your LO doing?

We're doing good this week.  

2. How long have you been on the diet? Are you avoiding any other food(s)?

I was on the diet for 5 months with my DS years ago but never could figure out all the pieces/he kept reacting to something.  With this baby I started the diet 3 weeks before she was born, so I've been on it for almost 3 months this time.  I am also avoiding nuts after a reaction to peanut butter last week.

3. Any other burning questions you'd like answered or experiences to share?

Vaccinations.  I've read that many MSPI babies react to vax's.  DD has her 2mo ones next week, any advice/experiences?

4. Had you heard of MSPI prior to going through this with your LO(s)?

No.  And it took me forever to really understand (still learning!) what all is involved.  I find myself constantly trying to explain to others why I can't eat this or that when it doesn't appear to be dairy/soy to others.  (and often I feel like others don't *really* believe me that even cross contamination/trace dairy can make my LOs miserable)

RingOfFire11

@StinaLeigh‌ - my DD seems to have issues (blood in her stool) after each set of vaccines. At her 2m appointment, I thought it may have been related to something I was still eating. After her 4m appointment, I wasn't sure if the blood was due to the vaccine or the tylenol I gave her for a high temp after the vaccine. I'm actually not looking forward to the 6m shots. She does react to eggs when I eat them though. I have read some vaccines contain dairy/soy though so I plan to ask this time. Our appointment is next week too. GL!

thatgirlnicki

1. How are you doing? How is your LO doing?

I hope you dont mind if I join you. My girl is 8 weeks and so far im just dairy free for the last two weeks. I haven't given up soy at this point because im really not sure the issues are diet related. She's been fussy since birth and developed a rash in her face and upper body. She's been diagnosed with reflux and I have OALD. Her rash is much better but may be coincudental since it started getting better at day 1. Fussiness is still hit or miss. I am also trying to avoid nuts because I suspect a connection.
So far im ok but it is tough. I am afraid to eat out and mess up.

>2. How long have you been on the diet? Are you avoiding any other food(s)?
2 weeks. Just dairy and nuts.

3. Any other burning questions you'd like answered or experiences to share?
I am supposed to go to a wedding Saturday. What would you do about food? Bring your own? I feel bad bugging the couple so late in the game. We were thinking of asking the couple if they mind if we call the venue. I also figured I could just eat salad. No cake :-(
4. Had you heard of MSPI prior to going through this with your LO(s)?

I only knew about it from this board when I had my son two years ago.


Thanks!

[Deleted User]

@giggler25 The issue with natural flavorings and "spices" listed in processed food is that they could contain ingredients derived from dairy or soy (or anything, really), and usually the manufacturer does not disclose this information. @StinaLeigh My DS only reacted to one vax, I think it was MMR, and it just gave him a fever. He was intolerant of eggs, so we stuck around the Pedi's office for ~20 min after his flu shot the first time to watch for a reaction, but he was fine. Vaccines have all sorts of weird ingredients in them, it's true, but my DS never had an MSPI-reaction to them. @Finnaroo Most mamas here have reported no MSPI-reactions to foods that are processed on the same equipment as dairy or soy. If the label says, "May contain.." that's a different story. @thatgirlnicki Welcome! I would at least bring some snacks to the wedding. I wouldn't even bother asking the couple if you could call the venue, just call! Or you could ask to talk to the caterer or whoever prepared the food while you're at the wedding. I went to a few events like this while I was avoiding things and everyone was always happy to answer my questions. If they didn't know or anything sounded iffy, I just didn't eat it and had my snacks. HTH!

mamagreene

1. How are you doing? How is your LO doing? We are doing good! Diapers are always yellow, free of blood, and occurring normally like 1-3 times everyday or every other day (before he was going 10 or more times a day!!) Still a little slimy though sometimes. 2. How long have you been on the diet? Are you avoiding any other food(s)? 10 weeks ago we tried the top 6 allergen diet and 6 weeks ago I started the total elimination diet, this past week I have added lettuce and sunflower seeds! Right now I'm only eating turkey, rice, potatoes, cooked carrots, squash, blueberries, pears, bananas, grapes, sunflower seeds, lettuce, safflower, sunflower, and canola oils, salt, pepper, basil and mint! 3. Any other burning questions you'd like answered or experiences to share? Trying to decide what to add next week....anyone have an experience with coconut? 4. Had you heard of MSPI prior to going through this with your LO(s)? One of my friends had to do dairy and soy.....I told her that I'd NEVER be able to do that diet. lol

[Deleted User]

@mamagreene My DS was sensitive to coconut. I could eat coconut flakes but not coconut milk.

mamagreene

AmyG* said:

I would probably add chicken or pork, apples,barley maybe. I'd want to add something bread tortilla or cracker like with simple ingredients. There is a chart I've seen somewhere that lists foods in order by most to least likely allergic and is use that to make a plan. There is a world of difference between total elimination and too six list. I prob would have done top ten before total elimination just because it's unlikely to be hundreds of other foods you are avoiding

I did actually do top six, plus corn and beef...not sure what top 10 would include?  Anyway, since I did the TED I found that both oats and avocado bother his tummy....I might have never eliminated those had I not done the TED, because, they are both listed on the least allergenic list.   Based off a few other Mama's I think I'll wait on the coconut....ohhh I was really dreaming of a desert

   The TED isn't really that bad though once you get used to it!  I had been getting so frustrated before with the top 6 plus corn and beef diet, it seemed like I was doing all this and it wasn't working....now I might be on a strict diet....but we are 39 days with no blood in his stool    

Salemkitty13

@mamagreene Congrats on no blood! DS also had issue with coconut. He wasn't allergic to it though on his testing. I'd try pork. I tried the TED and it's hard. DS never had blood and I missed his wheat allergy completely. Good luck to you

Salemkitty13

RingOfFire11 said:

~*~*MSPI Moms Weekly Check-In*~*~

Welcome! This is a check-in for moms who are/were on a dairy free and/or soy free diet due to their LO's intolerance. The check-ins will be posted every Monday on the Breastfeeding board and XP'd to the Food Allergy board. If you'd like to join the group, just post an intro here and dive in! To check out the archive of our previous check-ins, please see the MSPI Moms Blog (www.mspimoms.blogspot.com).

1. How are you doing? Im fine. be. How is your LO doing? DS has a red cheek. i think i have eaten something that has bothered him but i cant think of what it could be.

2. How long have you been on the diet? MSPI + nuts, oats and peanuts since January. 3 weeks adding no wheat and egg. Are you avoiding any other food(s)? I'm looking into this but I'm not sure yet.

3. Any other burning questions you'd like answered or experiences to share? Not today

4. Had you heard of MSPI prior to going through this with your LO(s)? I knew you could have intolerances to milk/formula (my sis was intolerant to milk protein as a baby) but I didn't know of the mspi name.

vszapp

1. How are you doing? How is your LO doing?

First time posting here. Not 100% sure DS has dairy and soy intolerance, but definitely some food intolerance issues. He had silent reflux from birth, then at about 3 weeks he started to become extremely fussy, got eczema on his face, and his poops turned from normal to green, frothy, and mucusy. I was battling oversupply and OALD at the time, so it's been really hard to tell what is the root cause. I thought we were doing better because his temperament improved a lot by 8 weeks and his poops were mostly yellow, though not seedy and still mucusy, However, the pedi found blood in his stool at the 2 month checkup, so I guess we're not very close. I am feeling defeated, like we'll never get a handle on this, and I hate that what I'm eating is causing upheaval to his system. I keep trying to tell myself that as long as he is feeling good (he is a *super* happy baby 90% of the time), then it must not be too bad.

2. How long have you been on the diet? Are you avoiding any other food(s)?

I started by eliminating dairy and soy (about 9 weeks ago), but after a few weeks of no real improvement, I have had stints of being off of the top 10. I am currently off of dairy, soy, wheat, large quantities of eggs, peanuts, oats, and chocolate (boo!). I just reintroduced eggs after being off of them for 3 weeks, and I can't tell if he had a reaction. His poops have been constantly fluctuating, so it's hard to tell. Maybe that's from my supply? He also has lip tie that I haven't dealt with, and his latch is a bit suspect. I have no idea how that might play into this! I am really, really hungry most of the time. I just don't have time to prep good foods very often, as I'm trying to take care of 28 month old DD and DS. I don't know how long I can keep up this very restrictive diet, especially with travel coming up.

3. Any other burning questions you'd like answered or experiences to share?

Yes! When do you feel like you've succeeded with the diet? Like I mentioned, he seems to feel great now, except for a lot of built up gas by about 4am (which doesn't upset him, but makes him squirmy). He used to cry every waking second from about 3-7 weeks. His poops are all over the map these days, and since we never saw the blood, I really don't know when we're heading in the right direction. He did develop a bit of rough skin on his face yesterday  - not sure if that's from the eggs? Don't want to over-analyze every little thing! 

4. Had you heard of MSPI prior to going through this with your LO(s)?

Yep, DD was MSPI too. She was even more miserable and scream inconsolably until about 12 weeks. She was definitely in pain - not colic. 4 weeks off of dairy and soy and her poops improved a lot and she was much happier. Wish it could have been that easy with this guy!

vszapp

Oops, I forgot one other question. Is decreasing frequency of poops a reliable sign that the GI tract is getting happier? DS has days where he goes 5+ times and then other times will go 2 days between poops.

camedowncrushing

vszapp  I think that the decrease in frequency is a good sign.  With DD she went from pooping 10+ times a day to once or even skipping a day once my milk was clean.  When the GI had me try to introduce wheat back in she pooped while I was nursing her, 10 minutes later, and then 10 minutes after that...with blood in the last stool.  We got right back on track after that.

If he is happy 90% of the time I wouldn't feel so defeated! 

StinaLeigh

@vszapp‌ my DD also has a lip tie (and revised tongue tie). Do you know about the lip/tongue tie facebook group? I've learned a ton on there.

giggler25

StinaLeigh said:

@vszapp‌ my DD also has a lip tie (and revised tongue tie). Do you know about the lip/tongue tie facebook group? I've learned a ton on there.

I don't know about this -- could you please share details? Thx!

[Deleted User]

@vszapp Welcome! Are you sure you've corrected the oversupply? I'm guessing you know about hidden dairy and soy since your DD was MSPI too. I did have to cut out several foods for my DS. It takes the same window of time, 3 to 5 weeks, for other proteins to clear your system as well. I would be more systematic about it: cut out eggs for a solid 3 to 5 weeks, if no improvement also cut nuts or peanuts for 3 to 5 weeks, then wheat, etc. It took me until DS was 6 mo old to figure it all out and I ended up cutting dairy, soy, eggs, peanuts, wheat, coconut milk, and cabbage. I would recommend this systematic approach for rather than a TED so you can still get enough to eat. Since your DS is happy I would not beat yourself up too much about it, though I know that's hard to do. You're still doing the best thing for him by nursing. HTH and GL!

StinaLeigh

giggler25 said:

@vszapp‌ my DD also has a lip tie (and revised tongue tie). Do you know about the lip/tongue tie facebook group? I've learned a ton on there.

I don't know about this -- could you please share details? Thx!

@giggler25
I have learned SO much through this group.  People are so knowledgeable and Dr. Ghaheri (who is renowned nation wide) is also very active on the board so there are some professionals answering questions, etc. too.  He lasered my DD tie and consulted on my DS.  Do you suspect ties in your LO?  Folks post lots of pics and there are great discussions about how ties impact breastfeeding.  There seems to be a correlation b/n tongue and lip ties and food sensitivities and reflux as well.
This is the group.  Hope it's helpful!
https://www.facebook.com/groups/tonguetiebabies/

giggler25

Thanks so much @StinaLeigh!!