My son’s ongoing battle with ear infections means getting tubes

Ear tubes helped for a while, but then a setback happened

by Keara Engle | April 2, 2024

My 6-year-old son, Cayden, is no stranger to ear infections. When he was 2, we decided it was time to solve the problem of recurring ear infections once and for all. His otolaryngologist recommended implanting ear tubes.

Tubes are pretty common, so I wasn’t overly concerned about the procedure. In fact, I wish we would’ve gotten them for Cayden sooner.

The first set of tubes lasted a little over a year. Then we had new ones placed because Cayden had fluid in his ears that was causing mild hearing loss. Hearing loss is common in infantile-onset Pompe disease, but fortunately, Cayden hasn’t had any trouble passing his hearing tests when the tubes are in his ears and functioning properly.

Now I’m Hearing My Son’s Voice

Not again!

A 6-year-old boy sits in a chair in the office of an ear, nose, and throat specialist. He's wearing a sporty navy blue jumper and eagerly leans forward in the chair toward the camera, supporting himself with two hands on the arm rests of the chair. He looks at the camera with a coy expression.

Cayden Engle attends a recent appointment with the otolaryngologist, where he had an ear tube removed. (Photo by Keara Engle)

However, we recently discovered that the tube in Cayden’s right ear wasn’t functioning properly. His otolaryngologist was also having trouble removing a large chunk of wax in his ear that she had noticed. She asked us to put drops in the ear three times a day for a few weeks. After that, Cayden returned for a checkup.

The drops did their job and softened up the wax inside of his ear, which the doctor successfully removed. She also extracted a piece of Play-Doh that she had discovered. After that was out of the way, she could see that the tube in Cayden’s right ear had loosened and was just sitting in his ear canal. She removed it, and we’ll have to return in the summer for another hearing test.

Not even a week after the latest appointment, Cayden developed another painful ear infection. He had a mild fever, ear pain, drainage, and extreme fatigue. I quickly took him to his pediatrician, who confirmed the ear infection and prescribed antibiotics for 10 days.

This has me worried, because it’s the first time in years that Cayden has had an ear infection. He had to miss a day of school to go to the doctor, and when he returned, his nurse at school said he wasn’t his normal chipper self. We noticed the same thing when he was at home. It took about two days for the antibiotics to start working fully to help with the pain.

If Cayden develops another ear infection before his next follow-up appointment with the otolaryngologist in July, I’ll have to call to see if we can schedule an earlier appointment. It saddens me to see my child in pain, especially when I know that a new set of ear tubes could solve the issue.

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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About the Author

Keara Engle Keara Engle is located in south-central Pennsylvania and has lived there her whole life. Keara is a single mother and has two little boys, Cayden and Kyree. Her oldest, Cayden, was born in February 2018 and was diagnosed with infantile-onset Pompe disease shortly after. He was the first baby in Pennsylvania diagnosed via newborn screening. She hopes that her column, “Powering Through Pompe,” will bring comfort to those that are also dealing with Pompe disease. She remembers how scary it was when her son was first diagnosed and wants to help guide others through their journey.

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