Tuesday, September 20, 2011

Our Other Story { MSPI take two }


When our second son was born I decided to go ahead and eat normally and just "see" if he had the same intolerance's as our first son.  I knew that a large percentage of siblings, if one had milk/soy protein intolerance, the others would as well, but I honestly thought it was a complete fluke that our first son had it (he was six weeks early, so I figured that had something to do with it) so I decided to just wait and see. Plus, there's really no way to tell if a baby has MSPI without exposing them to the proteins and seeing if they have problems...

{{Be prepared for some heiny and poopy talk here...}}

From the day we brought him home from the hospital, I noticed that every time I changed his diaper, he seemed to have a little bit of poopy.  Not a ton, sometimes just a little line in the diaper, but there was never a time that I changed his diaper without there being SOME poopy in it.  I really figured that it was just a case of normal "breastfed poop."  It's kinda soft and watery, right?

I noticed, as the days went on, that when I lifted his legs to put a new diaper under him, that he would poop a little more.  It wasn't uncommon for us to go through five or six diapers in ONE diaper change.  And if I would have opened his diaper five minutes later, I could have changed it again.  It was impossible to keep his bottom clean. 

He also had a TERRIBLE diaper rash.  Our first son never had any sort of diaper rash at all, so I wasn't quite sure what to think of it.  I bought about ten different diaper rash creams and got three different prescriptions trying to clear up his excoriated bottom.  It had bleeding sores all in his little crack. 

When we was three weeks old, we were letting his raw bottom air out outside (with no diaper on) and realized, as he sat there, that there was a constant flow of poopy almost oozing out of his heiny.  This wasn't normal breastfed poop. This was baby diarrhea.  Each time I opened his diaper and it was dirty, I had just assumed that he had pooped once, but in actuality, what I was seeing was just a collection of poopy that had been seeping out over time. 

We made an appointment with the pediatrician.

At that point, he was gaining weight like a champ and even though I thought at the time that he must have his days and nights mixed up (because he did terrible when we put him down at night) he was a pretty content baby. 

While we were in the doctors office I changed his poopy diaper five times... in a thirty minute span of time.  I requested that the doctor perform a hemoccult on one of the diapers, to see if maybe the diarrhea was coming from an intolerance to milk or soy.  The diaper came back negative for the presence of microscopic blood. 

The doctor suggested that I cut out dairy and soy just to "see" if it would clear up.  After two weeks of eating dairy and soy free, his bottom cleared up, he started having normal bowel movements and he started sleeping through the night. (Up to TEN HOURS!)


Because I had in my head that there HAD to be blood in the diaper in order for my baby to be "officially" milk/soy protein intolerant, I decided, four weeks into the diet,  after he was doing GREAT sleeping, eating and pooping, that maaaaybe his little gut had matured and that either he had outgrown the intolerance or never actually had it to begin with.  I really felt like maybe I was a little quick to decide that MSPI had to be the root of our issues.  Maybe this was just him being a baby. 

We were going out of town on vacation throughout the summer, so I decided to do a challenge.  I started out eating some foods with soy and when I didn't notice a reaction, I added back in dairy. 
I didn't notice any major changes in him at all. 

Over the next six weeks, I continued eating normally, enjoying my ice cream and cereal with milk and Fettuccine Alfredo.  He went from sleeping ten hours at night, to eight, to six, five, THREE and then waking up every hour.  He would arch his back when we held him and he didn't want to sit on our lap, bending at the waist... he made us hold him straight up.  He started doing this strange thing when he ate, where he would eat for three minutes or so, pull off, then suck, suck, pull off again... never nursing contentedly.  I noticed his stools getting more runny... but again... (and now that we're on the other side of it, I feel so dense for it taking me so long to realize what it was) I just thought that maybe this was just "how he was." I didn't want to be overly "dramatic."

Finally, when he was about 3 and a half months old, I changed a diaper and saw a speck of blood and I knew.  I immediately stopped eating dairy and soy, but over the next few days, his diapers went from poopy with a little blood to blood with a little poopy.  And he screamed and screamed.  He was in extreme pain and we literally could not put him down for three straight days without him writhing in pain.  He quit sucking on his paci and would just bite on it and cry.  He didn't sleep.

We took him in to the pediatrician and after testing his diaper (even though the said there was no real NEED to test for blood, because we could clearly SEE blood) he was diagnosed with Milk/Soy Protein Intolerance.  He also had severe reflux as a result of the severe situation in his gut and was put on zantac and later prevacid to combat his acid reflux and discomfort. 

I started eating dairy and soy free, but for 18 long days, he was miserable.  He did not sleep at all, he cried all day long and wanted to be walked at night.  On day 18, even though I knew that the most elemental formula was tougher on babies tummies than breast milk, I decided that he must either have had some other intolerance that I didn't know about in addition to the milk and soy, or that it wasn't MSPI at all, but some other terrible condition that couldn't be helped by me changing my diet.  This just wasn't working and I was exhausted and at the end of my rope. And I had all sorts of very well meaning people tell me to just "put him on formula."  Which, when you're doing everything you can to try to AVOID that, doesn't really help matters...

But on day 18, at my wits end, I called both the CVS and the Walgreens in our town, asking for neocate, the elemental formula recommended for protein intolerant babies.  We had to do something.

By the grace of God, they were both out of the formula. 

That very night, he slept five straight hours.  I guess the Lord never gives us more than we can, in His strength, handle. 

It took 18 days for his little intestines to heal for him to get some relief. 

When we took him back to the pediatrician, three weeks after his initial diaper tested positive for blood, we tested another diaper and it was NEGATIVE!  He had healed and by avoiding all dairy and soy, I was protecting his intestines from any further damage. 

It's been quite the interesting ride this go 'round.  I wish so badly that I could take back those six weeks of eating "normal."  Absolutely no food is worth what we had to go through to get him back to health.  My fear is that there was permanent damage done during that time that I didn't know he was being hurt by the milk and soy proteins.  I have to remind myself that breastfed babies have a LESS likely chance of becoming MSPI than formula fed babies and that if we had been giving him milk or soy based formulas during those six weeks, the same thing would have happened.  I just wish that he wouldn't have had to go through so much pain for us to get a definitive answer and diagnosis.  I wish I could have protected him better.  There was just no way to know.  Looking back on it, I wish I'd have requested a diaper check every couple of weeks after starting to eat normal again.  At some point, the microscopic blood would have been able to be an indicator to me instead of having to get his intestines so raw that I could actually SEE the blood. 

The MSPI presented itself so differently this time, that it threw me for a loop, but I definitely learned some valuable lessons, namely, that while blood in the stool IS an indicator of MSPI, it is not the only way to tell that a baby has an intolerance.

We are on the mend again, but man, I'm missing those ten hours nights!!! 



Betsy said...

Thanks for your blog. I am currently nursing my 5 month old, who is MSPI, and also can't tolerate wheat or nuts- ugh. It is hard and frustrating to stick to this diet, but it has majorly improved her symptoms. The hardest thing is that she will still occasionally have a few bad days (not terrible, like she was before), and it makes me wonder if she is intolerant to something else, or if I made a mistake and ate something on the "no" list. I also nursed our twins, who are now 3. Their symptoms were never bad enough that I changed my diet, but looking back, I know something wasn't right. They had the constant runny stools that your second had, and a horrible bleeding diaper rash. We never saw visible blood, but they also had green slimy stools as they got a little older. And they were really fussy and terrible sleepers. Being a first-timer, I just thought that that's how babies were. Fortunately, they are healthy and doing great now, and can eat everything. Anyway, thanks for your blog. It's nice not to feel like the only one going through this.

Ma passion: L'allaitment said...

OMG!! I cried in the first half of your post, before I evengot to the bloody part. I feel SO grateful for your post. I went to the doc 3x and they told me to change his diaper!!! THEY DONT UNDERSTAND!!! That's ALL I do, I have 2 other toddlers at home. His bloody buttom and post partum was geting to me!
Now I stopped soy and dairy 1 month agao and 2 week ago I stopped everything that contained traved like lecithine. His bottom is completely healed and poo smells better but still great and slimy. Should I wait or cut down on wheat and nut...what do you suggest with your experience?

Thank you!


Lily's Mommy said...

This sounds just like my guy. He is six weeks old, and was diagnosed with reflux at 2 weeks, but I also noticed he was stuffy and struggled to breathe at night. A friend of mine tod me her son had this and bloody poops and was milk intolerant, so I decided to give dairy elimination a try. The massive spit ups stopped within a week. Then one Sunday my brother in law got me a soy latte since i was dairy free and by that night, he was completely un settled and slept horribly (up until then he was slowly spacing feeds in the day and night - got up to 5 hours a couple times), but wanted to eat small amounts every 1.5-2.5 hours and pooped just like you described while I changed him, it just kept pouring out and it was green and watery. I have eliminated soy now, hoping that starts to help... Seeing his ped tomorrow to discuss, but glad to read this as it is so familiar...

Brittany said...

My little one is in the same situation, he was born in March at 8 pounds and when we went to the doctor at 2 weeks he was 6 lb 12 oz. They originally thought he was having issues with expending too many calories when eating due to his trachea not being rigid enough. So we were sent to several specialist where the final diagnosis was: reflux, we were given alimentum to supplement with my nursing because I wasn't producing quite enough. He was doing well when we came home from the hospital but we didn't know he had the MSPI until weeks later. We went to the doctor and she put him on EleCare an amino acid based formula and I am on a dairy and soy free diet. So far it has been working well for him. I am so thankful there are other mom's that have gone through this and are so willing to share their experience with others.

Rachel Mefford said...

When/why did u switch to Prevacid?

mommy of M&M said...

My LO, 4 weeks old, pooped a lot at first, still does just not as much. Great weight gain, fussy but consoleable, seems congested at night but never anything to wipe, no set sleep pattern but typically will go 5-6hours a night between feedings. Eats great....poop does seem slimy, never any blood. I just cut out dairy about 4 days ago but see no difference in her. Never had any problems with my older one and allergies. I can't decide if I am paranoid or if she may really have an allergy.

Katie Beauchene said...

My oldest daughter had mspi with the mucusy stools, reflux and projectile vomiting. I am currently in my 28th week of pregnancy with our second daughter and have stopped eating
dairy and soy do I need to avoid soy oil and lechithan even though they are fats not proteins?

Natachele Denaud said...

Thank you so much for this! you have given me hope. I'm going through this stressful journey now with my little man, and my Drs are telling me to stop breastfeeding. I have been on the top allergens diet, not just dairy/soy for 2 weeks now and I was about to cave in to alimentum because I get so discouraged when I see the specks of blood when I change him. I just read your post and saw that @ day 18 you noticed a change. I am hoping and praying for a miracle by the end of the week!
thank you!

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