Investigating the cause of my son’s recent weight loss
Weight is already a concern for my 6-year-old with Pompe disease
Weight gain is something my 6-year-old son, Cayden, has struggled with his whole life. He had difficulty eating as a newborn because of his weak sucking and swallowing muscles — a direct result of his infantile-onset Pompe disease.
When he was a month old, his medical team decided it would be best to place a feeding tube. He started out with a nasogastric tube and eventually had a gastrostomy tube (G-tube) surgically placed when he was 6 months old.
The feeding tubes helped Cayden gain enough weight that he was no longer labeled as “failure to thrive.” However, even with his G-tube, Cayden has always remained on the lower end of the growth chart when it comes to weight. He’s fed a blended diet through his tube, and all calories are carefully calculated and tracked.
Recent weight loss is cause for concern
At a recent appointment with his metabolic disease specialist, we discovered that Cayden had lost a pound, despite his caloric intake and feeds remaining the same. The doctors didn’t seem overly concerned, as it was only one pound. But every pound counts when it comes to a child who’s already on the lower end of the growth charts.
This change also is significant because the enzyme replacement therapy that Cayden receives to treat his Pompe disease is weight-based. This means that the specialist must carefully track Cayden’s weight to ensure he receives an accurate dose.
While I’m concerned about Cayden’s weight loss, I think there may be an alternate explanation for the scale’s reading. Because Cayden uses a wheelchair, it’s hard to get an accurate weight for him. He can’t stand up at all, so standing on the scale just isn’t an option for him.
Instead, someone has to stand on the scale alone, and then while holding Cayden. The difference between the two numbers gives us Cayden’s weight. At other times, staff members have put a pad down on the scale, and then placed Cayden on it in a sitting position. They’ve also weighed his chair with and without him in it, and then calculated the difference.
Switching the methods used to weigh Cayden can lead to inaccurate results. Personally, I think we should be using one method and sticking to it, which I made sure to voice at the appointment. How are we supposed to get accurate results when we’re using different methods? It just doesn’t make sense!
Cayden’s specialist agreed and plans to watch my son’s weight closely. Cayden has another appointment in two months with his pulmonologist, and we can get another weight check then. In the meantime, we’ll have a telehealth visit with Cayden’s nutritionist to see if there’s anything she recommends or wants to change.
I appreciate our metabolic disease specialist coming up with a plan and getting to the bottom of Cayden’s weight loss. Whether it’s true weight loss or just a fluke, it’s best that we find out sooner rather than later.
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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