We’ve Found the Right Dentist

Keara Engle avatar

by Keara Engle |

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Last week, we again had to take my son, Cayden, on the dreaded 2.5-hour drive to Philadelphia. We usually make this trip to see all of Cayden’s specialists, but this time we went to the dentist. Plenty of pediatric dental offices are in our area, but none are very familiar with medically complex kids.

Even though Cayden is fed via a gastrostomy tube (G-tube), he still has to brush his teeth every day. You would think that someone who doesn’t eat through his mouth wouldn’t have to brush as much, but that’s not the case. Although Cayden doesn’t eat orally, he is allowed to lick and taste things for pleasure. Most of these food items are sweets, such as lollipops and Popsicles. He also enjoys tasting salty things, like chips and pretzels.

Aside from tasting things, Cayden also has a hard time managing his oral secretions. We address this with speech therapy, but it’s still a work in progress. He cannot swallow properly because of his weak muscles, which are a symptom of infantile-onset Pompe disease. Instead, he aspirates. This is scary because it can lead to pneumonia. Because he has a hard time managing his secretions, most of Cayden’s saliva just pools until he gets a mouthful and has to spit it out.

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Between the licks of food and all of his saliva, we have to be adamant about staying on top of his oral hygiene. The dentist informed me that a lot of children who are fed via G-tube have poor oral health because their caregivers don’t stay on top of good oral practices.

This was only Cayden’s second time at the dentist, so he was a bit scared. He expressed his fears by screaming and crying, although that’s pretty common for children when they go to the dentist.

Despite his behavior, the dentist and her assistant were both very patient. They had Cayden sit on my lap for the entire visit. They also allowed us to take breaks to try to calm him down and also stopped to suction his mouth more times than normal to ensure he wouldn’t choke and aspirate.

The dentist was pleased with Cayden’s teeth, which made me happy. He had no plaque or cavities. This was like music to my ears, because Cayden usually puts up a fight when I try to brush his teeth. But I know how important it is, so I stick to it.

The dentist also pointed out that Cayden has an underbite. I was already aware of this, but I’m glad she made a note of it. Children affected by infantile-onset Pompe disease can develop an underbite because often their mouth hangs open due to the weak oral muscles. Cayden is only 4, however, so we don’t have to be concerned about this yet.

All in all, we had a pretty positive experience at the dentist. I hate that it’s far away from home, but I think the trip is worth it in the end. I’d rather drive far and have my child seen by someone familiar with special needs and medically complex children than miss that extra help.


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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