Navigating MPSI and GERD

I have had three babies with MPSI (Milk Protein and Soy Intolerance) and GERD (Gastroesophageal Reflux Disease). Not only are the diagnoses a mouthful, but caring for a baby with them is a handful, to say the least. While I am only techincally certified to advise on sleep, speech, and feeding, I wanted to write this to share my experience. I hope it makes you feel less alone on this journey and maybe gives you some ideas you haven’t tried yet.

Always consult your Pediatrician or GI (gastroenterologist) before introducing anything new!!

First of all, both of these conditions require a diagnosis by either a Pediatrician or GI. I personally prefer having a GI follow my kids, as they specialize in treating these conditions. So, if you think your baby may have one or both of these diagnoses, don’t be afraid to ask your Pediatrician for a referral to a GI! You won’t regret getting another set of eyes on your situation, I promise.

Robert:

Robert, my firstborn, was the definition of a “colicky” baby. Not only did he cry all the time, but he wouldn’t sleep unless being held, and then he started refusing to eat. I was dismissed every time I voiced my concerns because he was still gaining weight. I don’t know how this was possible since most days I was lucky to get a total of 12 oz into him. My entire day was spent trying to get 1 oz in at a time. I had a process where I would get him sucking on a pacifier, he would start to doze off, and then I would slip the bottle in until he noticed and started screaming. I would replace the pacifier and start all over again. This is how he ate. It was exhausting to say the least! Forget about anyone else feeding him a bottle.. it was an art form only I could do. Which only confounded my anxiety. Babysitters, Grandparents, even my husband couldn’t figure it out, and I would have to come home and feed him.

Since he was still gaining weight, I was told some babies are just “fussy eaters.” I spent so much money trying out every single bottle under the sun, thinking maybe the bottle was the issue… nope. I knew something was wrong, so I asked for a GI and Feeding Therapist referral. In the meantime, I was told to put him on rice cereal and was given an antacid medication just to pacify me. I now know that rice cereal is never a fix for these kids (in fact, it can inflame them more and is an aspiration risk!), but I didn’t know that then! So, we tried the rice cereal and the medicines while I waited to see the GI and Speech Therapist.

Like most first-time moms, I was very anxious about what I put in my baby’s pure little body. If I couldn’t breastfeed, I wanted him to get the purest and cleanest formula out there. So, I was devastated to find out there was no organic hypoallergenic formula when the GI suggested we put him on one. I decided I had to give up the obsession with clean ingredients in order for him to start healing. So, we put him on Alimentum, and he started to improve! By nine months old, I had weaned him off all of the reflux medications (Famotidine and Lansoprazole), and he was tolerating dairy! YAY!

Lucy

Now, my daughters are a different story. I knew from the start that there was a very high likelihood they would develop MPSI and GERD, as there is a strong genetic correlation. I considered breastfeeding and doing the full elimination diet, but I knew my postpartum anxiety would go haywire if I had to read a label every time I ate! So, knowing my second child, Lucy, would most likely have MPSI, I immediately put her on a European brand of formula that was organic and hypoallergenic (yay!). I thought we would be smooth sailing… but nope! After four weeks on that formula, she was officially having visible mucus and blood in her stools (damnit!). So, back to the GI I went. Because she was still reacting to the hypoallergenic formula, she needed to be put on an Amino-Acid based formula (we chose PurAmino). Once again, I hated the ingredients, but I gave in because there was no better option for her. She started to improve, but it took a solid month to really notice a difference. She had all of Robert’s same symptoms of refusing bottles and horrible reflux pain… but she did sleep better than he did!

Hayes

Finally, with my third child, Hayes, I was determined to get it right from the start! A new formula had come out that was organic, dairy-free, soy-free, and didn’t use corn syrup… FINALLY! It was a Pea Protein-based formula by a company called Baby’s Only. The formula is technically only approved for use with toddlers. However, it meets all the nutritional requirements for an infant formula! The FDA has a lot of red tape for getting a formula approved for infants—it can take years! I liked what I saw: the ingredients were amazing, and it was SO much cheaper! So, this was a no brainer. She absolutely thrived on it! She still needed reflux medications, but her symptoms were not nearly as bad as her brother or sister’s.

I wanted to write all of this down to let you know I truly have been there. It’s SO HARD! I am always happy to talk with a MPSI/GERD parent to talk through options! I was that parent desperate for someone to tell me, “I get it, this sucks!” So, while I cannot diagnose or treat these conditions, I can be a sounding board for ideas on how to get through it. Because you WILL GET THROUGH IT! Contact me via email or instagram and let’s chat!

You’ve got this!

xoxo,

Elizabeth