I’m Anxious to Meet My Son’s New ENT Specialist

Visiting new doctors can be stressful for rare disease parents

Keara Engle avatar

by Keara Engle |

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breathing issues | Pompe Disease News | main graphic for the column

While my 4-year-old son, Cayden, is no stranger to specialists, it’s always a bit nerve-wracking to meet a new doctor. No matter how many doctors we see, I always worry that Cayden will be too much for them to take on, due to his infantile-onset Pompe disease.

We have plans to see a new otolaryngologist (ears, nose, and throat doctor, or ENT) soon, as I wanted to find one closer to where we live. Cayden’s current specialists are at the Children’s Hospital of Philadelphia (CHOP). While it’s a great hospital with excellent doctors, the commute is just short of three hours for us.

Because of the distance, I decided to reach out to an ENT that’s only about 40 minutes away. Thankfully, they were more than happy to take Cayden on as a patient. We are nervous to meet them, but I’m sure the new ENT will be just as great as our last one.

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Cayden needs to see an ENT due to chronic fluid buildup in his ears, which can result in recurring ear infections and mild hearing loss. This is common in children with Pompe disease.

Cayden has already had one set of tubes placed in his ears, which resolved the hearing loss, but he’s now due for another set since the first tubes fell out on their own. He was scheduled to have this procedure done last May after a visit with his ENT at CHOP, but it was canceled because Cayden got sick.

Getting tubes placed is an easy procedure that takes 10-15 minutes. The longest part involves putting the patient to sleep with anesthesia. While anesthesia is typically nothing to fear, I still get a bit nervous. Cayden has a difficult airway, which makes it harder to insert the breathing tube that needs to be placed while he is asleep.

Despite my fears, I have no doubt that the team at the new hospital knows what they’re doing. It’s where I take Cayden when he’s sick, since it’s a bit closer. They’ve placed a breathing tube for him before, but never for a procedure — only in an emergency situation. But hopefully a scheduled procedure will make things easier for them.

It’s hard to trust someone new, especially when your child has a rare disease. But I know this won’t be the last time Cayden sees a new doctor, so I might as well get used 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.


Coastal Ear, Nose and Throat avatar

Coastal Ear, Nose and Throat

Great piece of writing with immensely informative contents! I really liked the writing style and the whole process of the story building. Waiting for more posts! Cheers!!


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