urban pacifier – fighting feeding and milk protein intolerance – Max’s Story

Max’s Story

I thought the second child was supposed to be a slam dunk after having a bit of a nightmare for my first child. Isn’t that how it goes? You get one tough one and one easy one? Well until Max was two months old, that was the case, but then our world went into a tailspin.

My baby, who was able to put himself to sleep in his crib at eight weeks old, started what I thought was a sleep regression cycle. His sleep stretches went from seven hours to four. He no longer settled in to nurse quietly and routinely every three hours. He began to fight with my boobs. I dug deep in my memory bank. The only time my oldest fought feeding was when he grew teeth and bit me.

I started to really pay attention to the signs he was giving me. I made mental notes of everything: poop schedule, color and texture, his skin, the different types of crying he exhibited and when, how much and how often he ate, how long and when he slept. I noticed a few things, and be warned, this section could be considered over sharing, but what’s a little poop between moms? His poop was no longer golden, odorless recycled breast milk. It started changing colors from yellow to a deep green patina. I wondered if it was a foremilk/hindmilk imbalance. His skin started to develop patches on the outsides of his knees and elbows, his cheeks also had rashy patches that came and went. Clearly that was eczema. Right?  When he nursed, he arched his back, pulled off the breast and groaned with discomfort. After he nursed he often spit up, and I don’t just mean a few drops, I mean I had to change my and his clothing several times a day, otherwise we’d be soaked and reek of vomit.

Max’s symptoms gradually got worse over the next two months to the point where it was unbearable. Unfortunately, because it was gradual and I had become so sleep deprived, it took me a while to pick up on what was actually going on. I hadn’t been able to resolve anything by this point. I thought back to when my oldest was an infant and we were ruling out a dairy issue (he was colicky). Something in my brain just clicked when I thought about that experience. So, I cut dairy out, and I don’t mean I cut dairy out, I mean I cut out everything made with anything or near anything that remotely involved dairy.

I took Max to the pediatrician after his sleeping habits became unbearable. He was up every hour at night at this point and was not improving.  I was hopeful that he had an ear infection and hopeful that the doctor would be able to give me some answers about the dairy thing. You might ask why was I hopeful that my child was experiencing pain from an ear infection. Well, if it could be diagnosed, it could be fixed. That’s what we learn to do throughout our lives and especially as mothers: fix things.

On my way home from the pediatrician my mind raced. No ear infection. The doctor kind of rolled his eyes at me about the milk protein intolerance suggestion. Apparently a lot of mom’s come in thinking that their child has a milk protein intolerance when it supposedly only affects 2.8% of the population (Source: National Institute of Health) . Nothing was obviously wrong, but something was clearly not right. The pediatrician even agreed that at this age babies usually get easier, and clearly, Max was miserable. He advised me to keep dairy free for a minimum of three weeks to see if there was an improvement.

Days passed with no improvement. I took him back to the pediatrician, I needed help. I was advised to try him on Alimentum to rule out the milk protein intolerance. I was sent home with a case of canned formula. At the very least, this time the doctor acknowledged that milk protein intolerance might be the cause.

Max only had a few bottles in his short life because, as a stay at home mom, I thought I’d save myself the hassle of doing the whole bottle washing, breast pumping, formula buying thing this time around. After pleading with Max to take a bottle, I fed him the Alimentum through a syringe and pumped and stored my milk every 3 hours (day and night!). For 2 days he refused to eat from a bottle. I called the pediatrician’s office. The nurse flippantly told me that the only way to rule out the intolerance was to get him to eat the formula and that I had to hang in there. This was exhausting, frustrating and emotionally depleting. I gave up. I was close to the 3 week dairy-free mark – we had to see some improvement soon!

Finally, we saw the pediatric gastroenterologist. Finally, without hesitation, a doctor agreed with my instinct. Finally, we were getting somewhere! Max was absolutely reacting to milk proteins. Not only was the doctor helpful, he wanted me to do what I thought was best. If I thought going dairy-free and continuing to nurse was working, he encouraged it. If I wanted to go the formula route, he was good with that too. He understood the struggle we had moving from breast to bottle, and he didn’t put any pressure on me to make the switch. His knowledge, experience, and demeanor made me want to do whatever he thought was best.

We continued to work on bottle feeding, and finally Max got it. The day he figured it out was the last day I nursed. That night, after a full day of Nutramigen, Max slept 6 hours straight. After 6 weeks of one hour stretches at night, we were finally getting somewhere! The decision to stop nursing and move to formula is a decision that is emotional and laden with guilt. While I was sad that my child couldn’t tolerate my milk (offended, embarrassed, frustrated, I could go on…), I was happy that an option existed that would make my child feel better.

Each day got better for about a week, and then Max regressed to feeling worse than when he was nursing. I called the GI doctor in a fit. There were no appointments in our town for a month. The tears came blubbering out of me while I was on the phone with the scheduling department. Apparently my despair was obvious; the scheduling lady got us in the next day. I have never been so thankful in my life.

Although Nutramigen is made from pre-digested milk proteins, and, according to my pediatric gastro doctor, works for about 98% of milk protein intolerant babies, it doesn’t work for all babies. As it turns out, Max is one of those babies. We moved Max onto Elecare, and put him on Prevacid. Gradually, the spitting up stopped, the rash disappeared, sleep improved, he ate comfortably and routinely. My once happy and easy baby resurfaced!

Max is now ten months old. We are still working on figuring out this milk intolerance thing because he still isn’t able to handle Nutramigen or anything containing milk or soy proteins. Having journeyed through the world of milk intolerance with Max, I learned a few things. Never assume anything. Sometimes there are no easy answers. There is no such thing as an easy baby. Or maybe there is, but I wasn’t lucky enough to get one. Breastfeeding, while considered the “best” option worldwide, is not the “best” option for every person. So let the guilt go, and do what you believe and feel is the best option for you and your baby. Lastly, if your gut is telling you something, LISTEN. Sometimes as mothers we overreact, but never let a doctor’s or anyone else’s rolling eyes discourage you from further investigation. You are your child’s voice, so speak up!

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