My son, who requires tube feeding, is upset he can’t eat orally

I worry my child with Pompe disease will always feel left out at mealtimes

Keara Engle avatar

by Keara Engle |

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Because of his infantile-onset Pompe disease, my 5-year-old son, Cayden, has always relied on a feeding tube for nutrition. For the first six months of his life, he used a nasogastric, or NG, tube. After that, he needed something more permanent, so he underwent surgery to have a gastrostomy tube (G-tube) placed.

Over the years, Cayden has gotten to enjoy foods and drinks orally, but typically only for pleasure. He’s never eaten anything by mouth for nutrition. However, earlier this year, Cayden failed his swallow study. The doctors told us to stop letting him eat and drink because he’s at a high risk for aspiration pneumonia.

He still licks foods like chips, lollipops, and pretzels. However, that’s the most he’s allowed to do.

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Feeling left out

Cayden was fine with these few options until recently. I usually try not to eat in front of him, but sometimes it’s hard to avoid. He saw me eating tacos and became extremely upset that he couldn’t have any.

This was a hard time for both of us. It breaks my heart to see my son upset, simply because he wants to eat like everyone around him. There’s no easy way to help such a young child understand that it’s unsafe for him to enjoy food. Cayden thinks I’m being mean because he sees his little brother, Kyree, eating meals with me. This jealousy arose recently because Kyree has been eating more solids now that he’s almost a year old.

I try to explain the situation to Cayden in a way that he’ll understand, but it’s not easy. I also try to make him feel included, especially when it comes to holiday meals. I let him lick any foods that are safe for him, and then I take a to-go plate and blend it up for him at home. That way, he’s still getting the same meal as the rest of us; his just gets pushed through his G-tube.

This is the ugly side of Pompe disease. It feels like my child has been robbed of normal daily activities that everyone else takes for granted. Most people don’t think twice about eating, walking, or showering. But for people like Cayden, most of these activities require help.

As he gets older, Cayden is realizing that he’s a bit different from most people. He doesn’t let it get to him too much, as we still make the most out of life for him. But when it comes to eating, I’m concerned that he’ll always feel left out.

For now, I hope that the more we explain why he can’t eat orally, the more he will understand. Mommy isn’t doing it to be mean; I’m doing it because his health is the top priority.

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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