Milk/Soy Protein Intolerance (MSPI) Part 2

[arjemdo06]

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[anielasmommy]

agreed

[kittycase]

I have been trying to find out information on the likelyhood of repeat babies w/MSPI, but have not found any information yet.  DD#1 no allergies, DD#2 MSPI and silent reflux (had to go hyperallergenic formula), DD#3 MPI and silent reflux (did just fine w/soy formula).  With DS #1 on the way, I am really starting to wonder if this milk protein intollerance business thing should be expected.  I would like to try breastfeeding again this go around, but I'm not sure if I should take milk out of my diet as a precaution, or wait to see what happens.  I am a huge dairy lover.  Taking dairy and soy out w/DD#2 made me miserable and I think I'd have to switch to formula if it appeared to be the case again.  It just puzzles me..why did DD#1 have no allergies (intollerances) nor did she have reflux...what would cause DD#2 &3 to develp these things.  It's almost like something happened that made me forever have babies w/allergies and reflux.  Which is just odd to me. 

Anyone experience multiple children with protein intollerance and or reflux?  Anyone have a mixture of children w/and w/out...if so was it from a certain point on w/all subsequent children?  Anyone have younger children w/out intollerance and older children w/it?

Thanks,
Krista

[EloysH]

There are 5 of us who becamwe friends in  birthclubs on here, our first borns are all around 2.5 yrs old.  4 out of 5 of the firstborns had relfux.  We all got pregnant around teh same time, and have had the second bubs, I was last, mine is 3 months old.  Anyway, ALL the second bubs had relfux except one. The one wh didnt have relfux thinks in retrospect her first born had relfux.   

So that's 4 mummies with two kids each, all with reflux, then one mummy with one of each.     All of our bubs also have MSPI.  Mine also is intolerant to gluten.
  My husband also had colic - he was the one who has passed on the gene to our kids I guess.

I know its genetic and the genes for reflux are linked to genes for allergies and intolerances. 

[Stargrl]

I've had it with #1 & #2.  Both reflux-y but not enough to warrant meds.  My theory: some moms tend to pass more proteins through their breastmilk, some babies genetically have a more open/susceptible gut.  I think we're an unfortunate combo.  But I will say, it was a LOT easier cutting out dairy & soy out of my diet the 2nd time around.  The first time was just such a shock, I felt like I couldn't eat ANYTHING, but 2nd time I was like, eh, it's not so bad.  Helps lose the baby weight for sure!  So I'd encourage you to breastfeed; you may want to go at least the first few weeks and maybe just avoid large amounts of obvious dairy? Just a thought.  I wish I knew "why me"... I'm the only one I know (excluding internet friends!) who has had to deal with this.

[EloysH]

I took dairy out of my diet as a precaution as soon as Ds2 was born and it was the best thing I ever did, I didn't regret it when Ds2 was born.  It was alot easier to do it second time round. He ended up having multiple food intolerances and I am so happy I didn't have to let him go through all that extra pain  of having  a gut sensitive to the dairy. I wish thoguh that I modified my diet whilst pregnant, I drank sooo much milk and ate so much gluten, I really think that was a mistake 

There is new research showing that if you take obvious allergins out of your diet when pregnant in the last trimester you are less likely to have a child with intolerances.  A study was done on mothers who had a first born with multiple food intolerances in conjuction with the allergy unit at royal prince alfred hospital in sydney, Australia.

[Gypsymom]

The one wh didnt have relfux thinks in retrospect her first born had relfux.   

So that's 4 mummies with two kids each, all with reflux, then one mummy with one of each.     All of our bubs also have MSPI.  Mine also is intolerant to gluten.
  My husband also had colic - he was the one who has passed on the gene to our kids I guess.

My two are slightly younger, but I too think in retrospect DS1 also had issues. MIL says DH was the only one of her 3 that "needed ovol" - he was EFF (and it was regular/cow's milk formula!). Now (after 10 years of thinking he had IBS or colitis or chrohns) he cut out all obvious dairy and feels like a new man!

For those that did this before, when did you start re-introducing stuff? I'm thinking no sooner than six months (although might try a wee bit of hidden before then) and not for real until after a year?? I'm with you, Eloise in thinking that the sacrifice now is easily worth it if it can save DS grief later (and permanently) in life.

[EloysH]

yes I agree Shannon about the prevention stuff. as for introducing intolerant foods I would do it first through the breastmilk which is such a milder way to go.  I personally am going to try when I notice a marked improvement with the reflux. Hopefully at 6 months point.    Last time Ds1's relfux was nearly gone by 8 months,  I started eating dairy again at 7 months, everything except milk that is.  Then at 9 months he wasn't showing any issue with my breastmilk, so I gave him a few spoons of yoghurt, no problem, then cheese not problem.  We successfully weaned him off his meds by 9 months too.   I didn't give him cows milk until 18 months, at 12 motnhs I gave him goats milk and rice milk, which he tolerated well.  This time round I will give A2 milk after 18 months, or else just stick with the goat.

[kittycase]

Well I was *hoping* to hear that it was hit or miss, but kind of expected it to be a consistant thing for parents having multiple children w/reflux and or MSPI.  DD#3 is only MPI, but I do wonder about her.  She just hit 1 year and I tried mixing regular milk in w/her bottle and there was instant fussiness (doesn't help she's teething too, so some could be from that), but she started have more loose bowels.  Didn't think much of it until we got to about 1/4 soy formula & 3/4 milk...the bowels became even more loose.  So it confirmed that she was not ready to switch yet.  The reason I wonder about her is because she started having her stools transition way before normal.  They started becoming loose and not the black tar before we even left the hospital!  How can you tell the difference between MPI and lactose intollerance?  I know lactose had been misdiagnosed for so long since they didn't really understand MPI, but I thought that lactose intollerance does exist and shows signs at birth vs. a few weeks later.  DH had and still has lots of stomach issues.  His mom said he was "allergic to her breast milk", lol, love that old time thinking.  Not sure what she ended up feeding him.  He couldn't drink cows milk for a time, has had IBS and confirmed thyroid disease.  I do drink a lot of milk (at least a full glass every morning) and lots of cheese.  I also had been very sick and could only drink rice water for a while when I was around a year old.  Family says it was bad water they were informed of after the fact, but I've questioned that with our kiddos having issues w/milk.  Not sure I'm willing to try breastfeeding again since the odds are really against me...kiddos w/MSPI, insufficent gladular tissue resulting in low milk supply.  Going to try switching DD#3 to soy milk (since she can handle soy formula) sometime soon, hopefully all will work out.  Going to be difficult to avoid cooking w/milk/cheese for her over the next 6 months since she's on solid foods.

[Stargrl]

Krista, with your DD#3, have you tried cooking with milk? My pedi GI said that when milk has been cooked, it alters the protein.  Also, how about yogurt & cheese?  I think that straight cow milk can be difficult even if you don't have a problem with dairy, but you can get the calcium & calories in with cheese/yogurt, etc., if she can tolerate it.  Just a thought. 

If I have another kid, I think I will go dairy free maybe starting a few weeks before my due date, but definitely start out dairy free & really not much soy either, and perhaps try adding it in after 2-3 months.  I wonder if giving them a break from the beginning would help?

[kittycase]

Cheese is a problem as well.  Even stuff that is questionable if it's really cheese or just flavoring (guess it was really cheese), such as scalloped potatoes or mac-n-cheese.  She was not able to tollerate any meat for a while too.  We waited about 3 months and she appears to be doing fine with meat now.  Although, I can't confirm that until her teething is done (getting the first set of molars in...ouch).  So due to teething she's been having some loose stools.

[my3girlsjde]

I've finally had the time to get on this thread, but was hoping against all hope that this wasn't what I was dealing with

E is a 14 week old angel/textbook and has been almost exclusively bf since birth. I've gone through what seems to be a million bfing problems, but when the feeding got back on track the weight gain was still low. Then E started to lose weight. E started month 2 at the 90th percentile for her weight and at the end of month 3 was at the 7th. We've been to a paediatrician who made me feel like I was starving her, and I've practically lived at the bf clinic where my LC said from day one MSPI. I should have listened to her from the start.

The second time E lost weight dh and I were quite worried and we decided to top her off with formula. It was milk based, and the second 3 ounces had her in the emergency room with a scarlet rash and eczema all over her chest. There was a little blood in her poo a couple days later, and then the eczema finally dissappeared. So at that point we knew major MPI or allergy but not 100% sure yet but I'm leaning towards allergy due to the weight loss. The docs and paed said to try soy while the LC wasn't keen on it. I think I should have listened to her again.  My angel baby is quite grumpy on the soy this is the only time she screams. I was giving her one 6oz bottle per day to see if that helped with the weight gain. Right after the feed she's great, but within 4 hours very fussy, gassy, and has a mucousy brown bm. Then she's fine.

 Now in the last 12 hrs she's either developed a cold because she's incredibly mucousy from the nose and quite congested. I've heard that this can be a sign of allergy, but since going completely dairy free for 3 weeks (hidden dairy too) the only culprit could be the bottle she had yesterday. Or here's to hoping she has a cold.

We had a really great week where she gained a whole pound after the dairy was out of my system, but this past week it was only 2oz. The little turkey has also decided she liked the forceful letdown we were dealing with so I'm gradually bumping my supply up so she feeds better. The popping off and on is starting to hurt but she's getting enough I think, so I think the bfing is going ok. Oh - I also don't let down for a pump so it's really hard to get enough bm to top her off with that if she has a bad feed.

So now I'm on weekly weight checks, and dh goes back to work tomorrow. He's going to see if he can get another 6 mos off but the military stipulates that your 9 month entitlement has to be taken all at once. I'm also feeling like I'm neglecting my twins a bit, although I was told that's normal for when you bring a new lo home.

Sorry for the long saga but that's what it's been. We're back at the doc early next month for the 4 month jabs so going to get a script for Alimentum just to give me a break if I need it. I'm happy to continue bfing on the dairy free but soy free scares me. Hopefully it's just the soy formula I need to avoid, and I can go from there.

[MLK]

I foudn I was makign most stuff from scratch because of the dairy intoelrance, so going soy free wasn't such an extra bother. Once I'd worked out soy-free sources of bread, it just became another part of life.

[my3girlsjde]

Good point! Breads and french fries are my downfall lol.

[~Sarah~]

Hi all I honestly thought I had come by here before, but guess not!

We too have slowly figured out DD is MSPI with reflux as well.  DS had reflux as well.  He was off meds at 6mo.
DD is now 6mo and she is on half the dose I was giving her.  I am not ready to even try milk for me yet as we were on vacation and figured out soy was bothering her just as much !  That was a week or so ago. 

I did like to hear though about the time frame you have tried to introduce dairy to your LO's. 

I grew up in Wisconsin...America's Dairy Land...so I am having a hard time even thinking of having a child who can not eat cheese or drink milk!  Plus, I am missing it soooooo much!!  I have enjoyed the few pound weight loss, but still would rather have dairy!