The pros and cons of no longer needing a gastrointestinal specialist
While nutrition remains a concern, my son is doing well with his G-tube
My 7-year-old son, Cayden, started seeing a gastroenterologist (gastrointestinal, or GI, specialist) when he was just a baby. Cayden was diagnosed with infantile-onset Pompe disease when he was 1 month old, becoming the first baby in Pennsylvania to be diagnosed with the condition via newborn screening.
After the diagnosis, Cayden started to see a multitude of specialists. GI was one of the first because he was struggling to eat and gain weight. It was determined that Cayden’s Pompe disease had already affected his muscles greatly, and he’d need a feeding tube to meet his caloric needs.
He started out with a nasogastric tube, which was inserted through his nose and ended in his stomach. These kinds of feeding tubes are meant for short-term use and are not a permanent solution. Once he turned 6 months old, Cayden underwent surgery to have a gastrostomy tube (G-tube) placed.
Over the years, Cayden has continued to struggle with his weight; at age 7, he’s only about 40 pounds. However, his G-tube has been amazing. Because he hasn’t had any issues with the tube itself, the GI specialist said an annual visit is no longer necessary, but advised us to continue working with Cayden’s nutritionist regarding his weight. We currently visit the nutritionist every six months or so, and I’m certain we’ll continue to do so for some time, if not forever.
While I’m ecstatic that we don’t have to make the long, dreaded drive to the GI specialist anymore, this change doesn’t necessarily mean that we’ll have fewer doctor appointments. Because we’re no longer seeing the GI doctor, she can’t write prescriptions for Cayden’s feeds that he gets through his G-tube. Now, our pediatrician will write the prescription for his daily blended feeds. That requires a visit with her every six months.
Cayden’s pediatrician was more than happy to help us. Her only concern was that he still needed to see a nutritionist, but since we have this covered, there’s nothing to worry about.
I appreciate our GI specialist and pediatrician working together to make the transition smooth and easy. There’s so much that goes on behind the scenes for children with complex medical issues. I’ll miss our annual check-in with the GI specialist, but it’s nice to be able to manage some of Cayden’s medical issues with a doctor closer to home.
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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