Dealing with my baby’s acid reflux after his older brother’s experience
My oldest son, who has Pompe disease, faced the same issues as an infant

The past six months with my newest baby boy, Kylan, have been pure bliss — apart from his acid reflux.
For the first three months, Kylan was strictly breastfed. Everything was going well with my supply, and he was getting plenty of milk. However, he was constantly spitting up.
Kylan also wasn’t making much progress with gaining weight. He fell under the curves of the growth chart, which worried me and his pediatrician. She ordered lab work, which came back fine. But we still needed to do something to help him gain weight.
So, we started fortifying my breast milk with a formula created for babies with a cow’s milk protein allergy, and I cut back on my dairy intake. Eventually, I switched him to just formula, as I’d developed a terrible case of mastitis, which is breast inflammation that can lead to infection. It’s a common issue in lactating women. But even with the special formula, Kylan was still spitting up.
Fast forward to his 6 month well-child checkup, and we saw a new provider who had a different suggestion. Maybe this wasn’t a cow’s milk protein allergy, and Kylan just had a severe case of acid reflux. We were offered a medication to help with any burning sensations, but Kylan didn’t seem to be in pain, so I declined.
The doctor then suggested that we try a new formula with added rice. The rice thickens the formula, helping it to settle and stay in the baby’s stomach. She gave us a sample to try for the next 24 hours, instructing us to immediately switch back to our previous formula if this one wasn’t helping.
To my surprise, the new formula helped tremendously. It was like flipping a light switch! Kylan has still been spitting up tiny amounts, but that’s normal for most babies. Importantly, he’s no longer vomiting up large amounts of formula and has even started to gain some weight, even reaching the 4th percentile for his age.
I’m no stranger to dealing with acid reflux
Kylan’s acid reflux issues have taken me for a trip down memory lane. My oldest son, Cayden, 7, dealt with the same thing as a baby. His reflux was worse, but not by much. The doctors and I attributed the problem to his infantile-onset Pompe disease. Acid reflux is common in babies, and when you add in weakened muscles due to a rare disease, it’s a recipe for disaster.
Cayden received my breast milk fortified with formula until he was about 4.5 months old. By that point, I was stressed out with everything going on and had developed a huge oversupply, which meant I had to be hooked up to a breast pump. I decided to throw in the towel and switch to formula completely.
We tried almost every type of formula out there, but nothing helped. Cayden would vomit violently, milk flooding out of his mouth and nose every time he received a feed through his feeding tube. He ended up needing a surgery called a Nissen fundoplication. It’s often a last resort for people with acid reflux, and it did the trick for Cayden!
I’m thankful for that experience with Cayden because it gave me a better understanding of what was going on with Kylan. Even though each child required a different solution, their battles were almost the same. I’m glad this is now a problem of the past, and I’m so thankful to no longer be walking around in clothes soaked with spit-up!
Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.
Leave a comment
Fill in the required fields to post. Your email address will not be published.