Adding nutrients to my son’s diet led to unexpected issues

How we ensure my son receives proper nutrition through his feeding tube

Keara Engle avatar

by Keara Engle |

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My 5-year-old son, Cayden, has seen a nutritionist his entire life. In his younger years, this was important because Cayden was underweight. Recently, he has gained weight, but the visits are still necessary because he’s tube-fed.

Thankfully, Cayden is able to see his nutritionist at the same time as his pulmonologist. This prevents us from having to make an extra trip to the children’s hospital that’s located two and a half hours away. During these appointments, we talk with the pulmonologist about Cayden’s lung issues, which stem from his infantile-onset Pompe disease. After that, the nutritionist comes in to discuss his weight and feeds.

Because Cayden uses a feeding tube, we have to monitor his nutrition closely. He gets lab work done every couple of months to ensure his body is receiving and absorbing all of the nutrients it needs. Although many children with feeding tubes use formula, Cayden could never tolerate it, even as an infant. He actually ended up needing a surgery called a Nissen fundoplication to prevent him from vomiting up all of the formula we were putting into his body.

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Due to Cayden’s struggles with formula, we transitioned him to a blended food diet as soon as he turned 1. We use Real Food Blends, which offers blended and prepackaged meal options for people with feeding tubes. Sometimes we also blend up meals I make at home, especially during the holidays.

While the Real Food Blends products work well for him, unlike most formulas, they don’t have added vitamins that make the meals a “complete” source of nutrition. Since Cayden doesn’t use formula, we have to give him a calcium and vitamin D supplement. The supplement has been a great help, but it’s no longer enough as Cayden continues to grow.

Finding new sources of nutrition

At his last appointment, the nutritionist and I discussed adding cow’s milk to Cayden’s food to give him some extra calcium and vitamin D. I was OK with this suggestion and decided to give it a go. I didn’t anticipate any issues because Cayden has had dairy before, though never large amounts on a consistent basis.

After a few days, things got bad. Cayden was having terrible diarrhea and kept having blowouts in his diaper. At first, I thought he had a stomach bug, but he just wasn’t getting better. That’s when I remembered we’d started giving him milk, which his body wasn’t used to.

I emailed the nutritionist to explain what was happening and voice my concerns. Together, we decided to switch Cayden to soy milk to see if that would help with his diarrhea. Thankfully, the switch worked. And as it turns out, the soy milk we’re using actually has a bit more calcium and vitamin D than the cow’s milk.

I’m anxious to see if the added milk has any effect on his lab work, but we won’t know until next month. Regardless, Cayden is now diarrhea-free and back to normal, which is all I had hoped for.

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.


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