When CF Treatments Become a Hassle
When our son was young, getting him to do his treatments was as simple as putting on YouTube for the 20 minutes of vest and 10 minutes of nebulized medicine. He knew he needed to take his enzymes (or his BB's as he always called them) every time he ate something. We thought he would never give us an issue with having to do his treatments. He never showed a moment of aggravation or frustration with his treatments and medications. None of it seemed to ever bother him in the least.
Then he turned 12.
I don’t know if it was because of the onset of puberty or because he was just over having to deal with his CF but out of nowhere, but medications and treatments became a big hassle for him. He suddenly "forgot" to take his BB's every time he ate. Having him do his vest was like asking him to give us an arm. He went from 100% compliant to not so much.
Inside I was a little scared. I knew what would happen if he began to resent his treatments and medications. When he becomes an adult and has little to no supervision, would he understand the incredible necessity of staying on top of his meds and treatments? Would he become defiant and not take care of himself?
Talking it out
So, we sat him down to talk about it. He was the one who had the answers and we couldn't get upset over something that we didn't understand.
We knew that it must have had a lot to do with not understanding the severity of being non-adherent with his treatment plan, but I wanted to hear what he had to say. We let him know that he wasn’t in any trouble but that we only wanted to know what was going on in his head and why the sudden kick-back to doing what he had been doing his entire life. And we asked him why.
He said he felt aggravated with all of it and was tired of having to do it. He said he thought that by now he wouldn’t have to do any of it anymore. He felt frustrated and didn’t see the point of it, he told us. No one else he knew had to do any of that stuff, so why should he?
He was getting to an age where he was starting to question everything. He noticed more now. Instead of liking the attention that being able to go to the school nurse every day to take medication, he no longer wanted that. He wanted to not have to think about it or do anything that his friends weren't doing. We understood that and honestly, we were kind of expecting it at some point.
Finding a solution
We stressed to him the importance of continuing his treatment plan. We talked about how doing it now will likely decrease his chances of having to do more in the future because he is taking care of himself. If he didn't like going to the school nurse, would he rather go see someone else to give him his meds? We talked about choices he could make and that we could offer instead of us telling him to do it right then.
Instead of saying he needed to do treatments right away, he got a choice: now or in 10 minutes.
If he took his medication on his own, we noticed and we praised him.
He could do his vest anywhere he wanted, as long as he did it. He didn't have to be trapped in the living room to do it. He could do it in his room or wherever he wanted to. It was up to him.
He is growing up and feeling more and more out of place among his peers. I don't blame him for wanting some space from his disease. However, we needed to make him realize that he would only be setting himself up for more doctor visits, medications, and being admitted in the future. He is still young and trying to figure all of this out. He will help him get there.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?