Exploring feeding therapy for my son with Pompe disease
I hope that my 6-year-old, who uses a G-tube, can one day eat orally
I recently attended a meeting for my 6-year-old son, Cayden, at his elementary school. So many people are working with Cayden at school, including his teacher, nurse, and physical, occupational, and speech therapists. Because of this, we felt it was important for all of us to sit down and get on the same page.
It wasn’t a formal Individualized Education Program meeting, which was nice. I was grateful to have the chance to talk with Cayden’s new speech therapist, who’d just returned from maternity leave. We chatted about something that’s been on my mind for quite some time: eating.
You see, Cayden has been fed via a gastrostomy tube (G-tube) since he was 6 months old because of aspiration issues. Because he has infantile-onset Pompe disease, his muscles are weakened — including the ones that are necessary to eat. As a result, he has a difficult time swallowing, which can lead to foods and liquids going into his lungs instead of his stomach.
Although the G-tube has been beneficial, Cayden has been waiting patiently for the day when he can join in on all the yummy meals. I try to make him feel included by blending up some meals for him and feeding them to him through his tube, but it’s just not the same. He wants to enjoy food by mouth like the rest of us and gets upset that he can’t.
A new opportunity
Cayden’s new speech therapist advised me about something called feeding therapy, which helps a child learn how to eat. Because of certain rules and protocols, she’s not allowed to work on this with Cayden at school. However, she did inform me of a facility not too far from us that offers feeding therapy services.
Currently, Cayden is only allowed to lick food. He enjoys things like lollipops, chips, peanut butter crackers, and mac and cheese, but he keeps expressing that he wants to take actual bites of these foods. It feels evil to deny him the opportunity, which is why I’d love to get him into feeding therapy.
I plan to get an appointment scheduled ASAP, as I don’t want to prolong this. The sooner we start feeding therapy, the sooner Cayden may be able to enjoy meals like everyone around him.
If things go well, we can then set up another swallow study to see if Cayden is still aspirating when he tries to eat orally. As always, I will try my best not to get my hopes up. The last few swallow studies didn’t yield the results I’d hoped for, but it’s been a little over two years now, so it’s possible things have changed.
I’m eager to see where this feeding therapy journey will take us. Both Cayden and I are looking forward to it!
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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