What MSPI looks like and how to find out if your fussy baby has an intolerance. MSPI journey from birth to toddler life and see how to really thrive.
by Juliana Martin
I was trying so hard to be quiet, but the tears streaming down my face in the middle of the night and the muffled sobs woke my husband. He came into the nursery where I was feeding our newborn son and knelt next to my chair. “What’s going on?” He asked. Between the middle of the night feedings and the bloodcurdling screaming in the daytime, I was worn out. With the strongest feeling of guilt I’ve ever felt, I replied, “I thought children were supposed to be a blessing. This doesn’t feel like a blessing.”
For the longest time, the only thing I have wanted to be was a wife and mom. So, when we found out that I was pregnant, you can imagine how excited I was. The whole pregnancy I dreamed about what it was going to be like. The joy. The fulfillment. The fun I’d have teaching my baby all about life! I am the youngest of four and never babysat an infant, so I was nervous about having a baby to take care of. I knew there would be challenges, but I’d read a couple of books and was fairly confident that I knew how to care for a baby. Those same books had talked about different issues that could come up and how to deal with them. But nothing could have prepared me for the baby God gave me.
First Signs of Trouble
Only a few days after my son was born, he started behaving in a way that didn’t seem quite right. I called his doctor and explained what was going on but she said, “It sounds like normal baby stuff.” So, we kept on. We took him to a chiropractor a few days after he was born and it did help. He didn’t cry as much at night, which was definitely a blessing, but the daytime was still so hard.
I couldn’t figure out how a newborn could stay awake for several hours and not be upset. All the things I had read said that a baby of that age shouldn’t be awake for more than 60 minutes, possibly less. I tried several things to help him fall asleep, but none of it worked. What really boggled my mind was that for most of those long stretches, he was perfectly content. He wasn’t acting like an overly tired baby should.
But the worst part was the screaming. I don’t mean the normal, “I’m hungry, Mom!” I mean screaming at the top of his lungs, turning purple from not breathing in, arching his back so that he was as stiff as a board, s.c.r.e.a.m.i.n.g. For over an hour. During those times, I would blow in his face to get him to inhale. We tried everything we could think of. Swaddling, not swaddling, walking, rocking, bouncing, laying him down, singing, a swing. Nothing helped. One of us would finally get him to sleep and we’d be enjoying the peaceful baby, but then he would suddenly wake up screaming. He wouldn’t wake up and then scream. He would come out of a deep sleep already screaming.
Again, we talked with his doctor, this time at an appointment. She had weighed, measured and done a physical exam when we finally sat down to talk. We tried to explain to her what was going on, but I don’t think we were doing a good job of it. She pointed out that he was gaining weight, so all was well. She shared with us what gassy babies do. Colicky babies. “Try gas drops and probiotics.” But this information didn’t really encourage us. Those baby issues didn’t seem to fit what he was doing.
My husband and I are not small people. We expected to have a bigger baby and we did, but Ben wasn’t gaining as much weight as the charts indicated he should. He was gaining a little, so his doctor wasn’t concerned, but he was dropping in the weight percentiles at every visit. He was 8lbs 13oz at birth and he regained his birth weight fairly quickly, but it didn’t continue to rise at the rate it should have.
There was a lot of reading done in the middle of the night. I looked for any information that I could find on why my baby wasn’t sleeping as often as he should and why he was screaming so badly. I read many articles and blogs. I’d come across an idea and we’d try it, but it never worked. Then I started to see things about the possibility of what I ate affecting my nursing son. I started to look into what those things might be. I had already stopped eating garlic, onions and all forms of caffeine (including chocolate) but other than that I was lost. I removed the other vegetables that are known to cause gas, but we didn’t notice a difference in our son. I would try to find input or suggestions from anyone with some knowledge of medical issues. Our chiropractor suggested cutting out wheat. It didn’t seem to make a difference.
About that time, I really started looking into reflux. It made sense to me that if my son was burping up acid, he would be in pain. It hurts when I do it, so I can only imagine what it must feel like for a baby to experience that burning sensation. We raised the head of his bed a little bit and kept him in an upright position for a while after each meal. Those things helped with the amount of spit up, but he was still screaming.
One day, my parents came over for a visit. They were loving on Ben, really enjoying him when he started screaming. They tried for a minute to calm him down, but I knew that this was just the beginning. My mom looked at me and said, “I had no idea this is what he was doing!” It’s so hard to explain to someone, even family, just how bad it was. I don’t think they thought we were exaggerating, they just didn’t understand how awful it was to hear a baby so small scream that hard, loud and long. Especially when there’s nothing you can do to help.
I really didn’t want to, as I never want to take advantage of a relationship, but I finally called my Aunt. She has since retired, but she was an RN who worked with babies every day. I figured she would be able to give me some suggestions at least. Ben and I went to her house and she weighed and measured him. We talked for a little while, but we didn’t stay long, as it was close to dinner time.
She reassured me as best she could, telling me that some babies are hard, but it gets better. She did express some concern over how little he had gained since birth, but she said, “Every baby is different. I don’t really care what they weigh as long as they grab a curve on the growth chart and stick with it.” She offered to do regular weight checks, but again, not wanting to take advantage of her, I was hesitant.
About a week later, I decided to give her another call. This time my husband, Chris, went with us. We ended up staying a bit longer, visiting and letting my Aunt cuddle with Ben. At one point she had him laying on her lap and he was all smiles, cooing at her and just being a delightful baby. All of a sudden he burped and started screaming. She looked at me and said, “That’s not right. Getting a burp up should make him feel better, not start him crying.”
You have no idea the feeling that came over me at that very moment! Someone finally saw what I had been seeing. I wasn’t crazy. I wasn’t an overly concerned first-time mom. Something was truly not right with my son and someone else saw it, too.
Milk Soy Protein Intolerance (MSPI) Diagnosis
Because of her connections in the medical community, my Aunt said she was going to make a few calls the next day and get us in to see a Pediatrician. Within a few days, we were sitting in the office explaining what was going on with our son. We told her about the screaming, the spit up, Ben arching his back and being as stiff as a board. It was amazing. She listened to us, understood what was going on and was about to write us a prescription for reflux medication when she said, “I’d like to run a quick test if that’s alright with you.” Of course! She stepped out of the room for a minute and when she returned she grabbed the dirty diaper that I had changed Ben out of when we arrived. She opened a little package, dipped a stick in the middle of the dirty diaper and wiped it into the test area of the kit she had grabbed.
I wasn’t completely sure what she was doing, but she kept talking so I didn’t really have a chance to think about it. A minute later she looked down at the test and she was surprised at the result. She was testing Ben’s stool for blood. None was visible, there were no red spots. But the test came back positive. She said that while Ben appeared to have acid reflux, that was not what was causing his problems. Ben had Milk Soy Protein Intolerance (MSPI). Something that I was eating was literally tearing up his gut, causing him intense pain and the blood in his stool.
Wait, what? In that moment I could not comprehend what she was saying. I was doing this to my son? The very thing that I was doing to give my son the best start in life was causing all of this? I was the cause of all his pain? I started to cry but pushed my guilt and grief down so that I could listen to what she was saying.
How To Help a Baby with MSPI
She shared that she has a lot of patients with MSPI and there are things that we could try. Cut out all dairy, soy and wheat from my diet. If one or more of those things are what Ben was reacting to, we should see a difference within a few days. It would take longer for those foods to clear out of our bodies completely, but we should see an improvement fairly quickly.
She shared that some of her moms are able to cut out one or two things and they have a different baby. Some moms cut out a lot more before they figure out what their baby is reacting to. Some moms immediately switch to a special formula. Nearly all of her patients with MSPI grow out of the food sensitivities that they have at this age and are able to have ice cream with their second birthday cake. She was very encouraging and supportive of whatever we wanted to do. I did not want to give up nursing without at least trying to figure out what Ben was reacting to, but we took the formula samples that she offered, just in case we wanted to try.
I followed her instructions to the letter. I ate no dairy, soy, gluten or any of the other things that had been suggested by others in the weeks before our appointment. There was some improvement, but Ben would still scream in pain. At our follow up appointment, she shared a few more foods to eliminate. She was working down the list of “most common allergens” and each time we visited her, she’d suggest a few more things. No grain other than oats. No nuts. I was too scared to eat any vegetables for fear they’d cause gas (more pain).
She called an allergist to talk with him about our case. She had never seen a baby continue to react when the mom eliminated so many foods, and she wanted his input. He said that it was useless to do an allergy test on a baby less than 6 months of age. None of the tests would be accurate. A blood test wouldn’t be reliable because the mom’s sensitivities would show up or show false negatives. And a skin test would be unreliable simply because a baby’s skin is so sensitive. After she listed off the things that we had already eliminated, he mentioned that he was seeing more allergic reactions to eggs and oats, so those were the last things that were on our list to remove from my diet. I was down to eating meat and fruit.
Christmas day we celebrated at home, and we made an interesting observation. I would nurse, then 1.5 hours later Ben would start screaming. We hadn’t noticed that before and we mentioned it to our pediatrician the following week. She explained that the food begins to leave the stomach 1.5 hours after eating and that is when an allergic reaction occurs. It was one more thing to confirm the MSPI diagnosis.
Moving To Formula
Shortly after that appointment, we decided to give the formula a try. I would give Ben a bottle and then set him in his chair to keep him upright while I pumped. I did not want to lose my supply if the formula wasn’t going to make a difference. We did three days of formula and you’d have thought we exchanged our baby for a new one! It was incredible, we actually had a happy baby! We could go places and not have to leave early due to his screaming.
After those three days, I tried nursing again, hoping that whatever he had been reacting to was clear of my system. But, he began having screaming episodes again. Our decision was made that day. We switched to formula at 10.5 weeks of age.
It was a hard decision. I wanted to give my baby the very best that I could. Every time I started to doubt myself, I would remember what he was like when he was screaming. I could not justify causing him to suffer like that. Nursing was not what was best for my son.
Improvement for the Baby
Having a happier baby was not the only thing that changed. He began gaining weight like crazy! When we first switched doctors, he was in the 10th percentile for weight and 90th percentile for height. He began gaining twice as much weight as other babies his age, trying to catch up to where he wanted to be. He had been working so hard to deal with all the pain that once the pain was gone he was actually able to gain weight. It wasn’t long before his weight and height were both in the 90th percentile. He was never chubby, he only ever had one roll on each thigh, but he was finally where he needed to be.
Baby Schedule and MSPI
There were a few things that we had to work through as we came out of those first three months. Bad habits we had created out of sheer desperation. Ben was not able to fall asleep on his own or stay asleep without assistance. We worked hard to get Ben to fall asleep on his own and it was quite the process. We couldn’t do CIO with him since he had so much experience with screaming, but we finally got there! Also, I would rush to him at the first peep for fear that he was going to start screaming again. I was extremely traumatized, and it took quite a bit of patience, love and encouragement from those closest to me to work through it all.
Solid Foods and MSPI
Ben is now 19 months old and we’ve made quite a bit of progress in what foods he can eat. As you can imagine, I was very hesitant to give him any of the top allergens. We had made it to only having dairy, soy and wheat left on our list of foods to avoid. Our pediatrician said to start at the bottom of that list (wheat) and slowly work our way up. Even though she was encouraging, I put it off for days. Finally, I got up my nerve and gave him a little piece of a soft tortilla. I closely watched the clock and he flew past the 1.5 hour mark with not even a hint of an issue. Hallelujah! One less thing to avoid! I don’t remember what I gave him a couple of weeks later that had soy in it, but he didn’t have any issues with that either.
We were in for our next well check appointment before I had the courage to try any dairy, so she explained how to do that in increments. She said to start with butter and work up from there: cheese, yogurt, and finally milk. Some kids are able to handle the more processed dairy when they’re not able to tolerate the rest.
Shortly after, I made his morning eggs with butter instead of coconut oil. No issues. Hallelujah. Two weeks later we gave him a couple of small bites of cheddar cheese. He loved it, immediately asking for more, and again sailed past the 1.5 hour mark! But, about that time I began to notice offensive odors that had me checking his diaper often. I stopped giving him cheese but it still took awhile before that normalized.
I’ve been giving him some probiotics in the hopes that he simply wasn’t able to digest the cheese properly. We may have a longer lasting food sensitivity, but since he’s not reacting in the same way that he did as a baby, it’s not the MSPI that’s causing it. Nevertheless, we are very happy about the progress that we’ve made!
As we prepare for baby #2 to arrive in a couple months, Chris and I are grateful to have the knowledge and confidence that we gained through this experience. I share with every new mom, “If you feel that something isn’t right, don’t give up. Keep asking questions. Don’t be afraid to see another doctor!”
Looking at my son now, I do see him as a blessing. Yes, we still have our bad days, he’s a toddler after all. But, watching him learn and grow and his personality emerge is a delight and I often find myself laughing at his antics.
Juliana Martin lives in Southern Oregon with her husband and very energetic son. They are anticipating the arrival of Baby #2 in July of 2019. Juliana enjoys being a stay-at-home wife and mom. She is so grateful for the help that she received as a new mom and is eager to encourage and help others in any way that she can, even if only by sharing her own experiences.