Only Child - NEED HELP WITH CHEST THERAPY

[scheesman]

We have a 5 1/2 yr old daughter only child with cf that has never been to daycare or any kind thing like that. She normally does her treatments and therapy pretty good. Last wk she cultured pseudomonas and has a butt load of treatments, about 5-6 hr daily. She is not taking this very well at all. We get it done but is very hard. And to top this she starts school in about 4-5 wks. If anyone has any advice or pointers it would be much appreciated.

 

[JENNYC]

What kind of chest therapy do you use? We have the vest and absolutely love it. My daughter also did not want to sit through all of that so we got her a nintendo ds and some games that she can sit and play while doing her vest. She also loves to play v smile and watch special movies that are saved for vest time. We tried the Wii but its too hard to play with all of the vibrations. <img src="i/expressions/face-icon-small-smile.gif" border="0"> Good Luck!!! Hang in there!!

 

[Mommafirst]

My daughter is less than a year older than yours. She has good days and bad days when it comes to treatments, but works best is just letting her know that treatment time mean she gets to control the tv and games we play during them. We play cards (old maid, uno, crazy 8's are her favorites) or board games, and she is so excited for the uninterrupted time with my DH and me that she's pretty good about treatments. You might consider a sticker reward chart as well...each completed therapy earns a star, so many stars= prize. I know its not ideal to bribe them to do what they need to in order to get their treatments done, but ultimately if they refuse its difficult to make them happen.

 

[Bbedrock]

I have never replied before, but your post prompted me to. Our DS is also an only child. Although some may think it is easier with only one child, it raises many additional challenges which is outside of this thread. In any event, I would encourage you to continue to do manual CPT. We went through a phase where one parent would physically have to hold DS down where the other did CPT, but the phase was short lived and well worth it. We don't have to lug the vest around for overnight stays (which we have a lot of since DS swims competitively at the Jr. Olympic level.

 

[Bbedrock]

I have never replied before, but your post prompted me to. Our DS is also an only child. Although some may think it is easier with only one child, it raises many additional challenges which is outside of this thread. In any event, I would encourage you to continue to do manual CPT. We went through a phase where one parent would physically have to hold DS down where the other did CPT, but the phase was short lived and well worth it. We don't have to lug the vest around for overnight stays (which we have a lot of since DS swims competitively at the Jr. Olympic level.

 

[Bbedrock]

Hit a wrong button. Posted too fast.

Anyway, as to school, we have aways made arrangements to do CPT at school and the school was quite accomodating. Our clinic tells us we are the anomaly; once most parents get the vest that is what they do. We do both, and, again, it is much more convenient if you have to go to school or a one night trip to be able to do manual CPT.

When DS was very young, we indulged - whatever videos or games he wanted - it was his time. Now, (just turned 13), it's no big deal. The key is, we were very, very, very consistent when he was young and never gave in and that is key. We can honestly say since the date of his diagnosis 13 years ago, he has never missed a treatment.

 

[Ratatosk]

DS does 3, 30 minute vest treatments a day. I wake up before 6 and strap the vest on him and he nebs duo neb at the same time. We're fortunate that he sleeps thru that treatments. When he's done vesting, then he gets his tobi. When we get home from school he does another vest treatment, followed by tobi. Usually plays video games, ipad or watches tv. He does a final treatment before bed and also gets pulmozyme.

He's always been able to do whatever he wants during his vest treatments. That's his time and one of us usually hangs out with him. Recently he's been playing Xbox Kinect games at the same time.