My son’s weight gain calls for more hands on deck

The challenge of transferring a son with infantile-onset Pompe disease

Keara Engle avatar

by Keara Engle |

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My 5-year-old son, Cayden, is on track with most children his age when it comes to height and weight. But we struggled with his weight for years. He was labeled “failure to thrive” when he was just 4 weeks old. It took until about the age of 1 for him to catch up with his weight.

Cayden can’t eat orally due to his weakened muscles. He was born with infantile-onset Pompe disease, which affects all of his muscles, even those used for eating. Because he can’t eat orally, he’s had a feeding tube his entire life.

He started out with a nasogastric tube, and when he was 6 months old, we decided to go through with surgery to place a gastrostomy tube. Although I wish Cayden could eat orally, I’m thankful for his feeding tube, which has given him the opportunity to be nourished and gain weight.

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While weight gain is something we wish for, he’s getting a bit heavy for me. He currently weighs about 38 pounds, which is about the average weight of a child his age. The problem is that it’s getting harder to lift and carry him, as well as perform basic hygiene such as showering him.

When someone weighs about 40 pounds, ideally, transfers would involve two people. But because I’m a single mother to two boys, it isn’t really possible for me to have another person readily available to help me transport and transfer Cayden from place to place. This has me thinking that I need to reach out for help.

I plan to contact his insurance company soon to see about getting an aide for an hour or two a few days a week. The only issue is that I’m not sure how easy that will be. Cayden already has a nurse to attend school with him during the week, for a total of about seven hours. Getting his insurance to pay for more hours outside of school may take some time.

They will need documentation from his doctor about why it is necessary, but I’m hoping they’ll see a need for it. It would be very helpful to have help showering him in the evenings. All this time, I’ve been doing it by myself, and it’s taking a toll on my body. My back and hips ache, but I push through because I know that he needs the help.

Luckily, Cayden’s school hired a personal care assistant for him this school year. She will be available to help the nurse transfer Cayden in and out of his wheelchair and change his diaper. She can also help Cayden in the classroom so that his nurse can focus on the medical side of things.

I’m grateful that he will have all hands on deck for him at school. However, I’m hoping I can get more help with him at home. If I injure myself while lifting him alone, I wouldn’t be able to do it for some time, which would become a big challenge. I’d like to save my back and the rest of my body for as long as I can, which means that something has to change!

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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