Breast is best … except when it isn’t.
Milk soy protein allergy (MSPA) is all it took for me to understand this statement.
My son was the sweetest little infant who never cried … unless he was laying on his back. Right. I couldn’t put my son on his back flat or even slightly inclined without hearing that newborn cry and seeing the little red face for hours upon hours. I knew he wasn’t feeling well, but I didn’t know what was wrong. He was eating; I was sure of that. A week into blissful motherhood, I developed thrush, so I started exclusively pumping and feeding him bottles. He had bad reflux but was gaining weight.
Our society has evolved enough to realize that crying is a communication tool for babies. Sure, babies are supposed to cry. But not all the time. When a newborn cries, they either are hungry, need to be changed or need to burp. I quickly learned that once I went through that quick checklist, if none of those options satisfied his crying, something had to be wrong. Luckily, his pediatrician didn’t think I was crazy for saying that my newborn wouldn’t stop crying. She listened to me and didn’t settle until we had an answer.
The Diagnosis – Milk Soy Protein Allergy
When he was one month old, we found out that my son had a severe milk soy protein allergy. My dairy intake was being passed to him through the milk and caused his intestines to become irritated, inflamed and eventually bleed. Hence, the red face cries constantly.
The specialty formula that his pediatrician recommended cost more than a pretty penny. So, with her encouragement as well as my husband’s, I adjusted my diet to cut out all dairy and soy. I lasted for about two weeks. We were planning to head to Destin, and my husband started saying how excited he was to visit our staple ice cream stand in Destin. My eyes immediately welled up with tears and I cried. That was the moment I decided to no longer breastfeed.
Making the decision to switch to the specialty formula was mentally and financially a challenge, but it’s a decision I don’t regret one bit. I am hearing about MSPA more commonly now. I’m not sure if this is because I’m now aware of it or if more babies are developing this allergy now than 10, 20 years ago. Regardless, here are a few things we learned along the way that will hopefully help another parent whose child has MSPA.
Don’t Drive Yourself Crazy
Because of thrush, I needed to cut back on foods and drink that contained yeast – goodbye bread, pasta, cake, and beer. I was also on an antibiotic, so no alcohol or wine. Then you have all the foods and caffeine that you shouldn’t have when breastfeeding because it makes the baby’s tummy upset. And then came no dairy and soy. Unfortunately, pump and dump isn’t a solution when your baby has MSPA. I was miserable and tired; I couldn’t eat cheese or ice cream or even drink a normal non-caffeinated coffee. Don’t drive yourself crazy. If you can swing the diet, awesome. If you can’t, go fix yourself a giant bowl of ice cream and know that there is help out there to afford the formula your baby needs.
Plan In Advance
Some specialty formulas can only be ordered from a pharmacy, online or through the manufacturer. Yep. That’s right. I was low on formula, so I packed my boy up, and we drove around for a few hours trying to find this very specific formula. I tell my husband I can’t find it anywhere and he informs me that there are no stores in the area that sell it. Noted … a little late, but noted nonetheless. Lesson learned: always have extra on hand.
Save Where You Can
I sometimes placed an order for a case of formula through the manufacturer. I learned that if I gave reviews, answered surveys, or spoke to several reps and told them my son’s story, those reps were sort of empathetic. Or they were just being salespeople, but whatever – I was able to get a few sample cans for answering questions about my family’s experience with the formula. I was also able to secure a $10 discount on every order I placed with the manufacturer. At $45 a can and 2.5-3 cans a week, I was thankful for any money we could save.
My son eventually transitioned to a step down in formula at 9.5 months, so we were then able to use manufacturer coupons at Walmart and the grocery. Sign up for those as well!
Some manufacturers even offer assistance programs for family incomes below a certain threshold. We did not qualify for this, but I know that programs like this
Check With The Health Insurance Company
My son needed to be on this specific formula, so with a prescription, I confirmed that with the health coverage we had for our son, we could be reimbursed for a portion of the formula (after we hit our deductible). Unfortunately, with going back to work soon after and needing to order formula every week because that’s all we could afford, I couldn’t keep up with jumping through hoops to get reimbursed. But, know that this is a potentially a thing, depending on your child’s coverage.
Hang in There
Most babies outgrow milk soy protein allergy by their first birthday. Just this week, we were given the go-ahead to test whole milk with my boy. So far, so good. There is a light at the end of the tunnel. And once you reach that light, treat yourself to a nice meal with some of that money you’ll be saving on not needing formula anymore … because you owe it to yourself.