Tuesday, July 3, 2012

Treatment Time Support

I feel so blessed that parents and patients in the community actually think enough about my opinion that they continue to send questions my way. Some questions that I get are pretty common, but I've got to say, I've never had this one before. It's kind of surprising though because this is actually a GREAT question!! I want to hear from you guys though, what do you think??


I just have a quick question for you. When you were growing up, did your Mom spend time with you each time you did your treatments? I am feeling a TREMENDOUS amount of guilt since I am not able to spend time doing something with ____ when he does his treatments lately, especially the 5 nebs a day he's now having to do. He seems totally content playing his video games when he does his nebs and vest and said it doesn't bother him that I'm not hanging out with him. But I can't help but feel guilty. I don't want him to think he's dealing with this all by himself. Life just has been so flippin' busy lately, and my daughter has been a bit more needy too, which makes it that much harder. I guess I was just wondering if you would ever get mad at your mom and disappointed with her if she didn't have the time to sit with you during treatments. Any input or suggestions you could give me would be very much appreciated! 
Thanks for letting me vent. I couldn't think of a better person to ask this question to since you seem to credit your mom a ton for your compliance and good health as an adult! I just want _____ to feel that same way towards me when he's an adult, and I don't want to let him down. Thanks again, Ronnie! Hope you and your family are doing well and enjoying summer!
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We have to keep in mind that treatment time as I was growing was completely different. Until I was 14, I had one neb (albuterol) and I was hand pounded by my mom or step-dad as I didn't have a vest until the age of 20. So, our situations were very different. My mom and I certainly bonded during treatment time, but that's because she was beating me and we had no choice but to connect during that time 

When it comes to you and Tuck, I'd take him at his word. I know when I was playing my video games, the last thing I wanted was for my mom to bother me. There are certainly ways you can show him you're thinking about him during that time without being within arms length. From time to time maybe you make him his favorite snack and bring it to him? Maybe you surprise him with a trip to the ice cream shop after his treatment because "it means a lot to you when he takes such good care of himself"?

I would focus more on what you say and what you do for him outside of treatment time. Love up on him. Let him know how special he is. Be sure to tell him how much you appreciate his hard work. Be there to facilitate the great life that happens after treatment time. Most of all, let him know that he is taking care of himself for all of you, so you can enjoy time as one big happy family!

I think it's great that he is showing some autonomy already with his treatments. I'd stay out of the way and do what you can to positively reinforce that behavior.

Comments (6)

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I agree Ronnie! Up until age 7, my dad was mainly the one who did Chest PT so yes, he was spending time with me. However, after that, I had the vest and I was always content just watching TV or whatever I did during my vest. Sometimes my parents would play a card game with me if they were around. But you're right, it matters what you say and do before and after treatments most, being there for support, etc. Doing my treatments without my parents close by taught me independence (but I was also sneaky and turned the timer ahead when Mom wasn't looking) Of course, you should trust your child to not "cheat" but I'm not going to lie and say I didn't! I'm not sure the newer version of the vest really has the option to cheat as much as the older ones did though!
1 reply · active 665 weeks ago
Oh yes, the days of turing down the timer ever so slightly - I remember those!!
My seven-year-old CF kid is one of four. When he was younger, I liked to sit with him when he did treatment, looking at books, or whatever. Then, he wanted his siblings around, well, his brothers, not so much his sister. Now, when he does treatment, he wants to play with Star Wars toys, or Legos, or watch Indiana Jones. If I linger, watching him, he usually tells me to get out. He's only doing 20 minutes twice a day on the vest, with Albuterol for the first 10 minutes and hypertonic saline for the second half. He seems to go with it easily enough. The only trouble we sometimes have is if he's doing something with the other kids and he doesn't want to head to his room. But, once he's in there, he's always okay with the treatment time, and generally prefers it solo. In our case, we have a house full of rowdy kids, so maybe it's a welcome break. That said, I think the time you spend with your son making him feel loved and as "normal" as possible is important, probably more so than doting on him during treatment time.
Our general rule is that our 6 yr old son only gets to play computer/video games and watch movies while he's doing his treatment, so he's totally content to do that by himself. Occasionally he asks me to read him a book instead, and I try my best to take the time to do it. But I also agree about making the time count outside of treatments. If possible, try to set a time each day that is just for the two of you-even if it's 15 mins. Maybe before bed or first thing in the morning? I have two other children under the age of 3, so I know it's not always possible! But making the effort to connect with him will be the lasting impression that he walks away with. : )
mom guilt yuck!! YOU are truely the only one whose memory will be the, "feeling guilt" part. I say set your mind to be positive and if you feel guilt say.(literally OUT LOUD--" no way I will NOT allow it (the guilt) I choose to spend this moment praying for my CFer" and send up a prayer for thanks for their life and your part in it. Do this 21 times and it will become habit AND you'll feel better...then your memories can become good ones for you too. Take captive your thought life and remember you deserve to feel happy and not guilty God picked your cfer for you and you for them. HE knows what he's doing, when we don't.
Michelle M's avatar

Michelle M · 665 weeks ago

We actually get the whole family involved in treatment time. Since my kiddo was young I wanted it to feel "normal" to try to lessen the fights about taking meds so whoever is home will play cards or a video game with him. Before we got a vest my husband and I and my mom would take turns doing the beating which got harder and harder so now we are glad we have a vest! His baby sister who is 4 will cuddle up on his lap sometimes and lean against him during vest treatments too. Once in a while though, especially when he is in the hospital, he just wants to be left alone and we will all respect it and back off. We take our cues from him.

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