Needing to know this on CPT's ????

[anonymous]

I have a 3 yr old (delta F508 x2) whos lungs sound great and always clear at her check-ups even when she has sinus problems. Also x-rays show no infections or other complications. I'm always told I'm doing a good job and keep it up. My question is that I hardly ever get to do CPT's. Will this hurt her in the long run? Is there anyone out there that does not have to do CPT's as often as you are told by the CF doc, especially having delta F508 x2 (suppose to be the most severe)? I use a hand-held wand when we do them but not for 30 min. At times when we are playing I will clap in the areas needed. She never coughs and when we do CPT she never coughs after or spits anything up. Is this a good sign?? Her sinuses infections have gotten a whole lot better and has hardly been on anti's from some time now. She is a VERY active child with LOTS of energy and with this never has any wheezing from running or playing. Just very curious on how serious I should be. Now when she starts getting sinuses problems then I really crack down on the CPT's to keep everything moving freely.

Sorry for going on so much,
AM

 

[anonymous]

I was diagnosed at 18 months old, I am now 27. My parents didn't do any therapy on me, and I didn't do any until I was 16. I was an active child, running, and playing as many do. My doc at the time said do what my parents felt best, of course at my diagnosis, 18 was life expectancy. Anyway, I am also double Delta F-508 and I don't believe I was hindered in anyway by not having therapy - however each case is different. I don't know how a parent determines whether it is good or bad to do too much or too little. My question has been in the last few years, whether doing therapy creates the need to do more therapy. I went from no therapy at 15 to doing it now three times a day. I just wonder if we create more by coughing. Crazy thought, maybe - but it has crossed my mind. I wonder where the balance is. Oh, I am also currently working, having just graduated college and my lung function is in the 60%. If that helps any. I feel as far as life goes - I am doing pretty good.

Sarah
27 with CF

 

[lovemygirl]

I have a 4 yr old that is doing really well but we do CPT's twice a day, even though the cf team says once a day is fine. There are times when we will miss and the clinic team said it was ok to miss occasionally because she is doing well. The reason you should do it everyday is to get them used to it.....so when they are sick it is just part of what they do. Whe our daughter gets a bad cold she is miserable and doesn't want to do therapy but realizes it is just part of her daily routine, like brushing her teeth.
I may be out of line a bit here as well but, I think by not doing them that you are sending the message to your child that it is not important. If they are taught from an early age that they need to do it, then it will never be an issue down the line. You may also be surprised to find that it is not that bad. We use this time to bond with our child and talk about her day, watch tv, listen to music, or make up stories. If you suddenly start doing it daily when she is older she may think that her condition is worse and that she is really sick....depending on the age this might scare her.
My question to you is.......If the CF team says you should take 30 mins per day to keep your CF child healthy why aren't you listening to them?

 

[anonymous]

If you find it hard to do CPT, why don't you look into using the vest. I found it very difficult to do CPT on my child. She had to be very patient, sit still, and I never felt sure I was doing it effectively. The vest is very effective. I don't know if it is available for very young kids, but I think saw another message on this board on that subject. Take a look!

 

[anonymous]

I know that I feel sooo much better when I do CPT. Your daughter is much younger than I am and proabably has clearer healthier lungs, but the reason we do CPT is as a preventative measure...it keeps us from getting sick. I think its better to do it now even though she is healthy so she will stay healthier longer rather than wait for her to get sick. I also agree with lovemygirl...if she gets into routine it will be much easier on her rather than suddenly having to do it when she is sick. I think its probably a good idea to get into the habit of it and even if you miss once in a while it is better than never doing it at all.

 

[anonymous]

I was like your daughter as recent as a few years ago. I didn't ever cough as a result of CPT and when I went to the CF Clinic & they would ask how often I was doing CPT, I would say never because it didn't seem to be doing any good. Their answer was, just because you don't cough right at that moment doesn't mean it didn't do any good, they said it may be 15 minutes, 30 minutes or an hour later before I would cough as a result of the CPT. So now I just do my Acapella twice a day, regardless. I also have my husband do the clapping when he is home in the evenings.
Also, like someone else mentioned...getting into the habit now is a good idea.

 

[anonymous]

Thanks for everyone's input. I will make sure to buckle down more on the CPT's. Its not that I don't ever do CPTs', I just don't do them like I should. And as for the vest, she is to small and I was told unless your condition is serious the insurance company would not pay, and she also had to be over the age of 4 or weight a certain weight (who knows?). We go back in 3 months will ask about it again and maybe push harder to get a vest. Can anyone shed some information on the vest? Do you have to weight so much due to it being heavy? Is the vibration to much or can it be adjusted?

Thanks again,
AM

 

[swingswing]

Ive been on the vest for quit some time now, and when i first began i thought it was cool....anyways the viabration can be adjusted as well as the pressure that is put into the vest (the vest goes around the body and puffs up to be tight on the body)...im sure if u ask you doctor they will tell you what to place the frequency and pressure controls on for a young child....sometimes i think it doesnt work (more often nowadays bc i think excersise is a lot more effective, for me)...but when your not feeling well, the vest is the best!....also just so u know, being a women and all...as a child i didnt always like doing CPT, and as you get older, and start maturing, u REALLY hate it, which is GREAT about the vest!! no one is touching you and you can change the pressure and frequency to as much as you think is good for you, sometimes you might want more frequency is your not feeling well, to help you cough.....but you can look into it more, im sure!...good luck! maybe u can try it out, have your daughter try it first, the vest, and then she can do the vest once a day and CPT the other time!!....but also excersise helps a lot! you might want to look into getting her a trampoline! as a kid, and even today i find th trampoline to be sooo much fun!, as well as the jumping up and down helps you loosen the mucus in your lungs and cough!...im sure she would love it! and just think its fun to jump around and it will feel less like shes 'sick' and more like shes just having fun!...Good luck!
Gabby 19 w CF