My son is starting to despise his breathing treatments

His frequent respiratory infections require an intensive treatment regimen

Keara Engle avatar

by Keara Engle |

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My soon to be 5-year-old son, Cayden, goes through a lot at his young age. Due to his infantile-onset Pompe disease, he has experienced many hardships. One of our current struggles is getting him to let me administer his breathing treatments.

One symptom of Pompe disease is breathing problems. Cayden frequently gets sick with respiratory infections, which can lead to pneumonia. Last week, he was battling yet another case of it. While this is nothing new for us, it’s still not easy for me to see him so sick.

In the past, Cayden would need to be hospitalized every time he had pneumonia. Thankfully, we were able to deal with it at home this time, but it’s still so much for his little body to handle.

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Last week, I spent lots of time administering breathing treatments. Cayden’s regimen includes using a cough assist machine, a suction machine, a nebulizer, and a few puffs from his inhaler. Aside from the breathing treatments, he also required a 10-day course of antibiotics to fight off the infection in his lungs.

Every time I go to use his cough assist machine, especially when he’s sick, Cayden puts up a fight. He tells me, “No, Mama, no!” over and over again while shaking his head. It breaks my heart to see him express these kinds of emotions, but I have to remind both of us that he needs the treatment to get better. However, it’s not easy explaining this to a young child.

I have to agree that the cough assist machine isn’t the most comfortable experience. It pushes air into the lungs, then sucks it back out, imitating a cough. I’ve tried it on myself before, and it almost feels like falling hard on your back and getting the wind knocked out of you. The machine helps those who have a weak cough or are unable to cough on their own. Cayden can cough, but it’s not strong enough to bring up mucus from his lungs.

He also isn’t too fond of his suction machine. He’s perfectly fine with us suctioning out his mouth, but when he’s sick, we have to insert a long suction catheter up his nose so that it can go down his airway and reach the back of his throat. He gets mucus caught back there that we just can’t reach with the suction piece we use on his mouth.

It breaks my heart to see the fear on his face and hear it in his voice. But I’m only doing what’s necessary. There’s no good way to help Cayden understand why he needs to endure these things when most other children his age can typically fight off a cold with some rest, medication, and extra fluids. I do my best to reassure him that this is what he needs to feel better, but he still doesn’t enjoy it, and I don’t blame him.

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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