Treating My Son’s Mild Hearing Loss With New Ear Tubes

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During my 4-year-old son Cayden’s last appointment with the otolaryngologist (ear, nose, and throat, or ENT doctor), the doctor and I decided we needed to consider get a new set of ear tubes from Cayden.

Cayden, who has infantile Pompe disease, showed signs of mild hearing loss during a test and had fluid in his ears. I decided that getting new hits was the right move for him.

He recently had the surgery, which went as planned, for the most part. Putting the ear tubes on wasn’t a problem, but we had issues with wearing Cayden around the same time. Because we couldn’t get to his hole, the anesthesia team had to place an IV before the operation. Once that was placed, things went according to plan.

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Cayden once had ear tubes due to recurrent ear infections and mild hearing loss, a common symptom in children with infantile Pompe disease. Although we were familiar with the tubes, the procedure was performed by a new doctor, as we had changed ENT.

I was a little nervous about having a new person perform the operation, but at the same time I knew it was a common procedure, which helped alleviate some of the stress. Plus, I ended up really liking the new doctor.

After the tubes were put in, my grandma, who was with us, and I had a long talk with the doctor, who said that Cayden had a ton of thick fluid in his ears that wouldn’t have drained without them. tubing.

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He also told us that one of Cayden’s eardrums was retracted or “aspirated”. Apparently, this is common in children with glycogen storage diseases and may be caused by the characteristic facial structure of Pompe disease. Children with Pompe can sometimes have sunken or pushed back cheekbones, which can cause ear problems. This can eventually lead to permanent hearing loss.

I didn’t know that could happen. However, the more I think about it, the more I think about it. I’m glad the new doctor mentioned it. Even though we’re over four years into this Pompe disease journey, I’m still learning over time.

The last thing Cayden’s ENT doctor mentioned is that the ear tubes may be a more permanent thing for Cayden, due to the retracted eardrum and chronic fluid buildup that makes it difficult for him to hear. We can consider something that lasts longer, like a pair of long-term ear tubes. There are pros and cons to these types of tubes, but that’s a discussion for another day.

All in all, I think the procedure was worth it. I noticed that Cayden hears a lot better now. He doesn’t ask, “Huh?” or “What did you say?” so much more. I can’t wait to see how he does in an upcoming hearing test at the end of the month, where I’m sure we’ll get some good news.


Note: Pompe Disease News is strictly a disease news and information website. It does not provide medical advice, diagnosis or treatment. This content is not intended to replace professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The views expressed in this column are not those of Pompe Disease News or its parent company, BioNews, and are intended to stimulate discussion of issues relating to Pompe disease.

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