I’m celebrating because my son no longer needs to see a GI specialist

Pompe disease treatment includes seeing a multitude of specialists

Keara Engle avatar

by Keara Engle |

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Last week, my 5-year-old son, Cayden, had his annual checkup with the gastroenterologist. It’s been over a year since we last saw her, but he’s been doing so well with GI issues that she told us we no longer have to come back!

This was great news that I looked forward to hearing. Cayden has been seeing a GI doctor since he was just a few months old. As a baby, Cayden had severe acid reflux and trouble eating. His infantile-onset Pompe disease affected the muscles he needs to suck and swallow.

Doctors classified him as “failure to thrive,” a medical term, and he had a nasogastric tube placed for the first six months. After that, he had surgery to place a gastrostomy tube (G-tube). He also had Nissen fundoplication to get his acid reflux under control. We tried medications for the acid reflux, but nothing helped. The surgery was our last resort, and it did end up helping.

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Because of Cayden’s GI issues, he was seeing the specialist every few months. Once things settled down, he had to see her only once a year. And now that has changed! The doctor told us he won’t have to return unless he develops new GI issues or needs to be fitted for a bigger G-tube. Thankfully, we don’t expect that to happen for several years.

I had a feeling this news was coming after his appointment last year, when the doctor instructed us to return in a year so that she could write us an order for his feeding supplies and food. She has to see him in the office at least once a year to do so.

We now are instructed to get in touch with his pediatrician, who can take over the ordering. This will save us a 2.5-hour trip to the children’s hospital, where most of his specialists are located. That’s the part I’m most looking forward to.

It brings joy to my heart to know that my son is thriving and getting better in some aspects of his health. His list of specialists is still lengthy, but it’s a relief to remove one from the list for now. I hope that in time, we’ll be able to do the same with other specialists.

Cayden will always have to see a specialist of some type, which comes with managing Pompe disease. But a shorter list is something I can get on board with!

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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