writer back for some more help.

[anonymous]

I posted a long time ago, and recieved some really valuable insites about CF. Now I need to clarify a couple of things and hoped that you could help again.


The character in my book is a coming up to 16 years old, has had quite a few stays in hospital with infections, but her Mum's dedication to regular physio (a lot of tapping) has kept her lungs in pretty good shape. Is this realistic?

Does the time spent vary from day to day?
How can you tell how much is needed? Is it possible for the sufferer to be less aware of congestion than for example the Mother, who has been in charge for so long?

At what point does a CF sufferer learn how to manage their own exercises.?
Are there things the daughter could do between physio sessions to improve her breathing, and perhaps fool her mother into thinking she is better than she really is?
And how can anyone tell how much physio is needed?

I can almost hear you all groan, and mutter, how can she not know all this. The truth is that I don't, because I don't have CF, but my imagination is at work, and all I really want is to make sure that what it comes up with is close to reality. And not have people criticising the book for inaccuracies.
If you can help, you could put your answers here, or contact me direct.
Thanks
Caro
greehamhall@btopenworld.com

 

[anonymous]

Assuming this is written in present time, someone would most likely have the vest and or flutter to do their own. Of course this usually depends on if insurance will cover. The vest is approx 15k, which is hard if insurance won't pay. See other threads on this topic. I would say this is an age where the invidual is struggling with the time issue, treatments take time and balancing all this with school activities and friends becomes a challenge.

 

[buggygurl321]

I'm 15 yrs old w/cf. Usually, for me atleast, the time spent doing CPT (I use the vest) is the same each day: 30 min. However, if I feel something coming on, I spend an extra 15-30 minutes on it. Now, my mom always knows when I'm coming down with something, sometimes before I even know. She was fighting like crazy when I was 9 (and diagnosed) b/c she knew what was up (she learns symptoms and she reads up on any possible cause).
I've been doing my own meds/exercises without being told since I was diagnosed, and haven't had to be reminded since I was 10, 11. I don't know how you learn how long to do CPT, the doctor told us how long to do it.
If she wanted to trick her parents, she could always, i don't know, take cough drops to hide her coughing.

I hope this helps.

Katie <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Thank you all for your input, especially Katie. the hint about using those cough drops could come in useful later in my story.

Caro.

 

[thelizardqueen]

Cough drops or cough suppresent cough syrup would do the trick. I know that when I was coughing up blood, the doc told me to take a cough syrup, and I had no cough while taking it.

 

[anonymous]

My do told me not to give my son cough suppressants. Is that not true? I always get an antihistamin with no suppressant in it. Sometimes that doesn't help thou. He has never spit anything up yet. Should I ask Doc again?

Mother of 9 yr old cf boy

 

[Jane]

Using cough supressants routinely is not a good idea, because you should be coughing and bringing up stuff. HOWEVER, sometimes, you just have to sleep. We use Delsym with our kids when they have a bad cold and can't sleep due to coughing. Only one or two nights. We think it helps them more in the long run to have a good night sleep.

 

[thelizardqueen]

I don't think cough syrup would hurt, so long as you're only using it on occasion. Its better for us to cough that stuff up out of our lungs then let it sit. Sometimes though you do need a good nights sleep. I know that there are cough syrups without the cough suppresent. It eases the cough rather then stop it complelty. I know I use Buckley's when I'm having a bad night. It tastes really bad, but it does work.

 

[anonymous]

Thanks Liz & Jane
I kinda felt the same way (about getting sleep-for all of us!) My son hasn't been sick all winter. Now he has a cold. My husband looked at me last night and said"How did he get this cold!!!" I just looked at him and rolled my eyes - it was like I made him get it or something. da I thought we were pretty lucky that he hasn't had the flu or anything going around.

Mother of 9yr old boy wcf

 

[anonymous]

Thanks to everyone for their comments.

And for Karen a special thanks for the suggestion and the link.

I have managed through the paper to get the book. I hadn't realized that it was only available from Chloe's parents, but they sent a copy to the paper, who forwarded it to me. They can be proud of her acheivement, as I am sure the book can and will help others understand some of the problems CF sufferers endure.

The lists of her daily medications etc for the good days was an eyeopener. I knew lots were needed, but not that many.

Are vests used much in the UK? Or is Pysiotherapy more common?


Caro
greenhamhall@btopenworld.com

 

[dyza]

vests are used in the U.K, but not really by CFers.They tend to use
them on severely handicapped poeple,or so my boy's nurse tells me
.Physiotherapy is the preferred method for cfers, it probably comes
down to money ,as here in the uk, although you can go private, the
majority of cfers use the National Health Service,which,
unfortunately is vastly under funded.

 

[anonymous]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dyza</b></i>

vests are used in the U.K, but not really by CFers.They tend to use
them on severely handicapped poeple,or so my boy's nurse tells me
.Physiotherapy is the preferred method for cfers, it probably comes
down to money ,as here in the uk, although you can go private, the
majority of cfers use the National Health Service,which,
unfortunately is vastly under funded.</end quote></div>

I asked my daughter's Consultant about The Vest and he seemed to think that they weren't really being used at the moment also. I reckon though it is because they are so expensive. I dunno. Do you live in the UK by the way?

Charlotte

 

[anonymous]

thanks for the answers to my question about vests.
The book I am writing is set in UK, to the information that the vests are not handed out by the NHS fits in with what I thought.
Caro

 

[anonymous]

If in your story the CFer was diagnosed early (beofre 2 or so) I do not think it would be realistic that anyone would know before her that she was getting worse/sick...even her Mom doing treatments. By about 13 at least I think CFers know themsleves better than anyone, even the most dilligent over involved parent.

Now wether or not we would alert anyone to the fact we were getting sick/need help...we might try to skate by for a while until others noticed and we had to do something. i did that a few times, once I knew i was getting sick but I had concert tickets so you know...and once I had a dance coming up so again i sort of pulled of the "I'm fine, what are you talking about?" routine.

That's just my opinion oh and I also think that by 15 even if you can't get a vest you've at least moved onto a flutter or PEP or something, independance requires you move away from the beatings, or only do that when you're getting sick, again just my opinion.

littledebbie not logged in

Debbie
26wCF (United States - for the purpose of relevancy of my opinion <img src="i/expressions/face-icon-small-happy.gif" border="0">)