Our Experience with Milk Protein Intolerance Part 1
I love butter. And cream. And butter and cream together in rich buttery, creamy sauces. My most favorite and comforting foods always call for butter and or cream and I’ve been known to add butter and cream to dishes before just because they weren’t turning out and I figured that the addition of their creamy deliciousness would salvage things. I was usually right.
So fast forward to the day when I realized that for the health of my baby, I had to cut my beloved butter, cream and all other cow’s milk based products from my diet. Queue dramatic music and the image of a hot and cheesy pizza fading slowly into the background.
The truth is, I’m thankful that a cow’s milk protein intolerance was all that was wrong with my baby and that dietary change on my part was all that was required to get him healthy again. So let’s start at the very beginning.
The Pooping Machine
From the moment our 7lb15oz bundle of baby boy was born, he was a pooping machine. He pooped on me immediately after he was born and proceeded to poop around the clock all night his first night in the hospital. The constant pooping continued through his first few weeks with us. It seemed that almost every time we changed his diaper, there was at least a little bit of poop in the diaper. And he pooped during diaper changes on the regular. We very quickly learned to have a dog peepad or 2 under him while we changed him, because more times than not he would poop at least once during changing.
We also noticed that once the meconium passed, his poops were bright green. Not just sort of green. We are talking neon green. Not overly concerned, I mentioned it in passing to one of the midwives we saw in a postpartum care visit. She explained that the most common cause of bright green poop was baby getting too much sugary foremilk and not enough fatty hindmilk - usually due to switching sides too often while breastfeeding. I had been switching sides often in an attempt to keep Jackson awake and alert while nursing, so this seemed like a perfectly reasonable explanation. I started nursing for longer on one side before switching sides, but the green poop continued. I never mentioned it to my midwife team again and eventually just accepted the neon green poop as Jackson’s normal.
His poops were also very loud. We could hear him poop from across the room and they happened with such force that he pooped through to his clothes several times a day. Again, not knowing any different we accepted this as normal and carried on.
The Fussing Begins
When Jackson was about 2 months old, I noticed that he started getting fussier. He had been a fairly content baby for the most part, but the amount of time he spent fussing began to slowly increase. At first I figured that he was just having growth spurts and was growing so quickly that he was hungry all the time. So I nursed him almost constantly. And really, when I say constantly I mean that most days were spent in my bed, never changing out of pyjamas with Jackson nursing almost continuously. If I stopped nursing to get up and get a glass of water or some food, he would cry the entire time I was gone. He would doze off frequently for short periods of time while still latched (usually 15 or 20 minutes) before waking to nurse again.
Around this time, his cradle cap began to flare up and he frequently had a red bumpy rash on his face and chest. The cradle cap covered his scalp and extended down in to his ears and the rash was not helped by moisturizing his skin with coconut oil and other lotions. Assuming that he had inherited my sensitive skin, I started washing all of our laundry in hypoallergenic soap and stopped wearing and using any products with artificial scent, but the rash continued to flare up several times per week.
More Than Just Spit Up
From the time Jackson was a newborn, he had spit up fairly frequently. We went through multiple sleepers every day and even more receiving blankets. Everything I had read and been told said that spitting up was very common and normal, so I just carried on doing a load of his laundry every day. By the time he was 4 months old, he was spitting up at every feed and seemed to be losing most of what I had fed him. I would finish a feed, then he would spit up, soaking both of us. I would often need to change in to new clothes, right down to my underwear due to the volume of fluid that came back up.
Jackson was also getting more miserable by the day. He needed to be held constantly and even when being held and rocked he would cry, arch his back and clench his little fists. I read about colic, I bought the Wonder Weeks book and read it, hoping that a developmental leap was to blame and would soon pass. But things just kept getting worse.
Nighttime sleep and naps were at an all time low. I would rock and nurse him in the darkened nursery, sometimes for 2 hours at a time and then put him down in his swing. Within 10 or 20 minutes he would wake up screaming. Nighttime sleep deteriorated to waking every 45 minutes. I was beyond sleep deprived and Jackson had bags under his eyes all the time. I tried to sleep train him, afraid that I had “spoiled” him and that his not sleeping was all my fault. After listening to an hour of screaming that turned in to short, piercing wails I listened to my mommy instincts that my baby was uncomfortable or in pain and went in to get him. At this point I started co-sleeping with him just so we could both get a few winks of sleep. He still woke up screaming and he still spit up in large volumes, but nursing through the night soothed him enough that we were getting a little more sleep.
The Mommy Guilt is Real
A few weeks before Jackson’s 4 month well-baby checkup and vaccines, my fuzzy sleep deprived brain started telling me that there was something more going on with my baby than just colic. People had been trying to assure me for months that some babies were just fussy and higher needs than other babies. But whenever someone told me that, my gut told me that I actually had a happy, laid back baby but that something was bothering him and causing him to be unhappy. I considered making an appointment to see our doctor, but always convinced myself that it wasn’t necessary.
A few days before the 4 month appointment, I started to regret this decision. I had taken a picture of Jackson, and when I looked at it I noticed the strained look on his face that he often had on his face and again my mommy instincts shouted at me that he was in pain. I also noticed how skinny he looked and how baggy his sleeper was.
On the day of the appointment, I felt nervous but hopeful that we might get an answer to what was troubling Jackson. The nurse weighed Jackson and when she entered his weight and the graph with his weight percentile came up, I knew it wasn’t good. She began to explain that his weight had dropped in to the 3rd percentile and he was considered Failure to Thrive.
Failure. That word pierced my mama heart. I had failed my son. I started to explain the symptoms I had been seeing in Jackson and kept repeating over and over “I should have brought him in sooner”. The doctor soon came in and I repeated my ramble of what the last few months had been like. She prescribed Ranitidine (Zantac) for acid reflux. I walked away from the appointment relieved and confident that with the medication Jackson would return to being the happy baby I knew he was.
After a week on the medication, I noticed that while the spitting up had been reduced, he was still miserable and still acted like he was in pain. I still felt that there was a missing piece of the puzzle. So I did the thing that everyone tells you not to do and I began to Google. I ended up on a website called Reflux Rebels that had information about infant acid reflux and something called MSPI, which I soon found out stood for milk/soy protein intolerance.
I began to read the descriptions and symptoms of MSPI and immediately thought “this is my baby”. I took a quiz on the site that listed various symptoms of MSPI and when I hit submit, the result that my baby almost certainly had MSPI was returned. I knew that a website couldn’t diagnose my baby, but I felt sure that I was on to something.
The MSPI Learning Curve
At first when I read about MSPI in infants, I was confused. How could my baby be reacting to dairy or soy? He was only getting breastmilk at that point. I was shocked when I went on to read that the proteins in the milk and soy get passed on through my breastmilk and that the only way to keep my baby from ingesting the proteins was by eliminating them from my diet.
So then I thought I could just not eat soybeans and that I could use lactose free milk and we’d be all set. Wrong again. I would need to read labels and eliminate anything containing milk ingredients or soy ingredients. Further to that, lactose is milk sugar and I needed to eliminate casein, the milk protein; lactose free products were not going to help me.
After a few days of reading about MSPI, I decided that I needed to try the elimination diet to see if it helped Jackson. I had read that it could take several weeks to see an improvement since the proteins would have to clear out of my milk and then out of his little digestive system in order for him to start feeling better. I chose the following Monday which happened to be the day after Mother’s Day as Day 1 of my elimination diet. On Mother’s Day I had a huge piece of Mother’s Day cake and a scoop of ice cream for dessert, knowing it would be my last, possibly for quite some time.
Life without Dairy and Soy
On day 1 of the elimination diet, I went to the grocery store to buy dairy and soy free foods. I had quickly realized how much cheese I ate and how much I enjoyed cream in my coffee. I would also need milk and butter substitutes. I spent an outrageous amount of money on soy free margarines, non-dairy milks, yogurts, cheeses, salad dressings, bread and frozen desserts (because no mom should be without a stash of emergency ice cream).
I very quickly realized that most of the middle section of the grocery store contained soy. It turns out that soy is a cheap oil, so many products are made using soy oil (and that vegetable oil almost always contains mostly soy oil). I also learned that soy lecithin was used as an emulsifier and was in almost everything. I found soy free products in the Organic or Whole Foods section of the store, but these products tended to contain a pricier oil like Safflower Oil. Since these products used higher quality oil and were usually GMO Free and organic, they were also very expensive. I began to wonder what I was getting myself in to.
Within a few weeks of label reading, learning substitutions for dairy and soy and going through cheddar withdrawal, I began to see improvements. Jackson was happier. He didn’t nurse constantly, he was spitting up even less than with just the Ranitidine and he didn’t cry constantly. His poops were turning mustard-y yellow rather than neon green and they were no longer streaked with mucus. Blowouts were becoming less and less frequent and he no longer had a red rash on his face. And then a miracle happened. Jackson’s sleep had been slowly improving and after a few weeks of long daytime naps and fewer nighttime wakings, Jackson slept through the night in his crib. I was elated.
By the time Jackson was 6 months old, I had been on the elimination diet for 1 month. It was June and I missed ice cream terribly. I complained about the lack of cheese in my taco, and a cup of coffee loaded with cream sounded dreamy. Eating out was basically out of the question because the ever pervasive soy showed up in most restaurant food. Despite all of this, I continued on in the elimination diet as I watched my now happy baby catch up on everything he had missed while he was crying all day.
He started learning to crawl and interacting with us on a level that he hadn’t been able to before. He learned to clap and happily bounced in his Jolly Jumper. He was growing and putting on weight like crazy. I was finally able to enjoy the baby stage, meeting my friends at the park for playdates and enjoying drooly baby smiles and giggles that had been rare in the previous months. In short, it was all worth it.
Going It Alone
At a follow up doctor’s appointment to check on his weight, I told my doctor about what I had learned about MSPI and how I had started an elimination diet that had made a tremendous difference. I was disappointed when I got a blank stare and crickets.
At that point, I knew I wasn’t going to get any “professional” help or support in dealing with the food intolerance and that it would be up to me to educate myself and continue on with the elimination diet.
I say this not to criticize, but to encourage. Mamas, we know our babies. And doctors do not have all the answers. Most family physicians probably aren't equipped to deal with food sensitivities. It's not their fault, but there does seem to be a gap in our health care system where food sensitivites aren't given the consideration that they probably need. My experience has been that doctors don’t know a lot, if anything, about MSPI or milk protein intolerance. If you have a baby who is displaying symptoms of MSPI, it may be up to you to “diagnose” your baby and “treat” with an elimination diet. Don’t wait for a medical professional to suggest it or condone it - it will likely be up to you to take the reigns on this one.
An Encouragement for Moms Who Think Their Baby May Be Milk Protein and/or Soy Intolerant
If you think that your baby may have MSPI, you probably feel a mixture of relief and dread. Relief that it’s something that can be “fixed” by changing your diet. But dread over the inconvenience that will be caused by having to eat a special diet when life is busy enough as it is. And yes, it can be rough. I have been in the trenches figuring it out step by step.
I have screwed up and eaten foods that I assumed were dairy free and then dealt with the guilt and the return of symptoms when it hit Jackson’s digestive system and I realized that I hadn’t read the label and that it in fact did contain dairy or soy. I’ve been the weirdo at a barbeque with my own dairy free / soy free bun in my purse. I’ve turned down the yummy desserts and longingly looked at an ad for pizza with perfect bubbly cheese. I’ve been the pest to ask to read labels before something goes in my mouth. I’m also fortunate to have supportive friends and family who have bent over backwards to be accommodating and even tried new recipes with unfamiliar ingredients so that I could eat what everyone else was eating.
It’s not fun, but it also gets easier. And you aren’t selfish for feeling that way. We would obviously do anything for the sake of our child’s health, but that doesn’t mean we have to be thrilled about not eating foods that we love. No mommy shame or guilt here!
If eliminating dairy and soy don’t work, there are other intolerances that can cause similar symptoms. Dairy and soy are the most common triggers and often go hand in hand. I am still unsure whether or not Jackson was actually intolerant to soy. Due to the severity of his symptoms and the fact that he was Failure to Thrive, I chose to eliminate soy from the get-go. The research I did revealed that about half the time babies who are intolerant to one are intolerant to the other. I didn’t bother trying to add soy back in because I was too afraid of rocking the boat.
I would encourage you to talk to your doctor about it, but if you don’t get any support, then go do your own research. If you decide to do an elimination diet, it may be advisable to talk to a naturopath or nutritionist to make sure you’re still getting enough of the calcium, vitamin D and other vitamins and minerals that you need.
The good news is, there is a good chance your baby will outgrow this. By the time Jackson was 9 months old, I was able to start adding foods containing dairy and soy in to my diet. By 10 months, I was able to eat everything at Thanksgiving dinner and even started giving Jackson small amounts of cheese. By the time he turned a year old, he was able to eat ice cream with no adverse reaction.
The MSPI story doesn’t end here, because it turns out that the damage caused by the protein intolerance doesn’t just go away on it’s own. But that’s a story for another post.
I am by no means an expert. You’ll need to do your own reading and decide what is best for you and your baby. But I have learned a lot and am happy to answer any questions about our experiences or just lend a listening ear to anyone who is dealing with or thinks they may be dealing with MSPI.
Feel free to comment below or send me a message!