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Replies: 8 Pages: 1

scartissuemark

Posts: 19
From: London
Registered: 08-Nov-2006

My son doesn't do his treatments, advice please?
Posted: 06-Dec-2006 12:58

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My son doesn't do his nebs unless i get them ready and argue with him to do them. He doesn't do much excercise and isn't that pro-active in doing anything to help his lungs.
He's 21, and is in and out of hospital every 2 months or so because of chest infections. usually he's not that ill when inside and always recovers well after the infection has cleared

Do other mothers have CF kids who act like this, sometimes i think he's the only one and other pwcf are do everything they're supposed too??

thanks

Mary

justme

Posts: 188
Registered: 06-Feb-2004

Re: My son doesn't do his treatments, advice please?
Posted: 06-Dec-2006 13:06

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I'm not a parent but a pwcf. Just thought I would let you know that i'm very much like your son (please dont all hate me on the boards). I rarely do my nebs or my physio. I dont know why I dont, I know it would help me but I dont. I have slipped into a very bad cycle of not doing them and find it hard to get back into the habit of doing them. I think one of my main problems over this is i show no signs of getting worse by not doing them. my lung function stays at the same stable place which is higher than when i was doing my nebs and physio every day. I should have more motivation to do them as my sister has cf and she is alot worse than me and I can see how badly it affects her if she misses just one dose, and ive sadly had friends die young who always did all of their nebs and physio. But yet i still seem to have no motivation.

Just wanted to let you know your son is not the only one who doesnt do nebs or physio. Something that may help though is a talk with him and agree to not argue with him about his nebs. and set a time in which he will have done them by, and only after that time will you give him reminders that he still needs to do them. That helped me at one point with my mum about my nebs.

softie

Posts: 1,070
From: Croydon, Surrey
Registered: 07-Feb-2004

Re: My son doesn't do his treatments, advice please?
Posted: 06-Dec-2006 13:28

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I am afraid that this is very common, we get threads on this subject quite routinely.

Even now, aged 44, I still get intervals when I don't comply. And, being as old as I am, I don't have a Mummy to force me to take them! (That is I do, but she doesn't. She leaves it to me.)

However, despite my lapses I comply a lot better now that I am a) a lot older and b) left to take responsibility for it. My lapses are an adult cost/benefit playoff - how much time will it take, against how much worse will I feel later for neglecting it?

At times when I was being treated as a less mature person there was no such mature consideration. It was "am I under my mother's thumb, or am I not?" And so, if she was tired or I was cunning (getting out before she could intervene) I didn't get to do the treatment.

However, your son seems to be acting extremely childishly, and I don't know if he will grow up enough to take responsibility should you step back and let him get on with it. Can I suggest a compromise? If he does his nebs, wash the equipment out for him so should he come back to them next time he doesn't end up having to deal with stale, unwashed equipment; and apart from that take no hand in it. Don't TELL him you are doing this, just do it.

Then after two months, see what has happened. It might then work to give him one, big, you-and-the-rest-of-the-family bollocking.

BTW, what equipment does your son use? Old-fashioned nebuliser or one of the new ones like the i-Neb? A faster-acting nebuliser may make a difference.

Richard.

Dawn

Posts: 29
From: Worcestershire
Registered: 06-Nov-2006

Re: My son doesn't do his treatments, advice please?
Posted: 06-Dec-2006 14:30

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Hi Mary,
I have a 21 year old son with CF. He is exactly the same. He works full-time,his excuse is ''I dont have time'' He has a car, yet he walks to work when its raining and freezing, thats not going to do him much good is it!He goes to clinic once a year, he has not had his Colomycin neb for months!!!! He has Pseudomonus, and has had it for a long time now. He claims he is well, but I know better when I hear him first thing in the morning coughing and choking in the bathroom!
His sister (19) CF moved out 8 months ago, she had Pseudomonus and has had it for 4 years now. She takes all her medication, she used to moan at him and tell him that she would never get rid of her Pseudomonus. Its a nightmare, she comes over to see me and her dad and other brother, but knows that the Pseudomonus is ''Hanging around in our house' Really, she should not come round awful as it sounds! She dreads it when her brother goes over to her house, she thinks ''Pseudo''
She also has Asergillosis asthma and diabetes!
I feel that 15 years of taking him to clinic appointments were wasted (he was diagnosed at 3) My son seems to think he knows best! but truthfully, he is shortening his life by not taking antibiotics when he has a chronic chest infection,I have said, ''you coughing like that all the time is damaging your lung tissue'' He thinks im nagging!
dawn_box_1962@hotmail.com

Angel

Posts: 491
From: London
Registered: 17-Feb-2004

Re: My son doesn't do his treatments, advice please?
Posted: 06-Dec-2006 17:04

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Hi Mary

It can be so very hard to keep going with all your treatments rigorously, and sometimes seems so much easier to just not do them. Whenever I am struggling, or have struggled in the past, I make sure I tell everyone around me that I am having difficulty, as I know then they will keep an eye on me! This doesn't help everyone but it definitely helps me. Also I create little reward systems for myself, for example I cannot go online (am an absolute internet addict) until I have set up and started my nebs, then I am free to browse whilst I do them all (it also helps kill time and make them less boring and frustrating to do).

If it is your son's profile you are using I notice he is on the transplant list? This is quite important as non-compliance is a listed contraindication to transplant. I don't know if he knows this but it might help him have focus if he does and he really wants to get that transplant. Best of luck

tracie

Posts: 148
From: west midlands
Registered: 06-Nov-2006

Re: My son doesn't do his treatments, advice please?
Posted: 06-Dec-2006 17:56

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when I first posted here last August i was having probs with my son he is 20, his attitude towards anything to do with cf stank, and all i can say is be patient, i just kept my mouth shut and did the usual, meds out nebs mixed, i would then just shout "all done now down to you" he was going out not coming home till late and just a constant worry, and i don't know what happened but suddenly it stopped, he now does everything to the letter, i still have not questioned him, i think you should just show him you are there for him anytime and hope he rides through it
wishing you all the best
Tracie

Karen D

Posts: 6
From: Scotland
Registered: 06-Dec-2006

Re: My son doesn't do his treatments, advice please?
Posted: 06-Dec-2006 21:34

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My son is 21 and just the same...He is in hospital regularly, has diabetes, and a liver transplant...He does all his treatments when he is ill...but neglects it until the next infection...and does absolutely no physio at all...but he lives life to the full in between times... It is so hard for us as mums, but we just have to stand back, and let them work it out for themselves.

munrocket

Posts: 5
From: aberdeen
Registered: 14-Nov-2006

Re: My son doesn't do his treatments, advice please?
Posted: 06-Dec-2006 22:01

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Hi Mary,
My 18 year old is just the same, but he has started to take a bit more responsibility for his own health (eg phoning the cf nurse when he wasn't feeling well and getting himself up to the hospital). I still look out his tablets, but have given up on the nebs for now. will probably have a word with him in the new year again. He works full time and his excuse is that he's too busy or too tired. To be honest I don't think he does his nebs because he doesn't feel any effects, good or bad. It hasn't helped with all the news about Gordon Browns baby. Iain says if sees another article which says average life expectancy is 31 he will scream. He's using it as a bit of an excuse to say whats the point.
Easy for me to say he should be more positive. I'm not the one having to do everything.
In the end though, I'm his mum and I'll carry on caring for him the best I can even though it drives me crazy sometimes.
Good luck and remember, you are not alone.
Cath

scartissuemark

Posts: 19
From: London
Registered: 08-Nov-2006

Re: My son doesn't do his treatments, advice please?
Posted: 07-Dec-2006 10:35

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It's a relief that i'm not the only one with a rebellious son, I find it so annoying trying to get him to take care of himself, but i guess that i'm not the one with all the medicines and they must frustrate him too.

Like Karen D's son, Mark at leasts gets to a point when he knows his body and fights to get rid of the infections, that's better than nothing.

Thanks for all you're reasuring comments, i guess i'll just keep trying and try not to get angry, and advise him instead of nagging.

Mary