CF teenagers and rebellion

[tammykrumrey]

My nephew is 15, and has CF. And he is making life so difficult for my sister and her husband. He is very bright, but just won't do his homework. And when it comes to treatments, and compliance, he just doesn't do what needs to get done. He has had some tough things to deal with at a young age, but so do a lot of CFers, or other kids at that. He cultures positive for everything practically under the sun, including B.Cepacia (which he has had for 5 years now). His PFT base line has dropped from the 80's last year, to the 60's this year. He is in the 40's when he is fighting off an active infection.
When I talked with him regarding his compliance and negative attitude, he says that if he thinks the worst, then he will never be disappointed. He feels like he isn't going to live long anyways. He feels like he is always dealt crappy hands, and I know that he does get the bad deal a lot. It just breaks our hearts. We know that the damage that his lungs suffer know will not be able to be repaired.
He already sees a therapist.
What can be done or said to help? Were any of you in this situation at this age? I worry that if he gets too bad that he won't be a good canidate for a lung transplant due to the Cepacia, his non-compliance, and his very poor weight gain (he is highly allergic to milk and therefor has a difficult time with weight gain, even with night feedings). Is there anything that can be said?
I had always hoped he be a good 'CF' role model for my two daughters with CF, but unfortunately he has really turned for the worst in regards to his attitude and his health<img src="i/expressions/face-icon-small-sad.gif" border="0"> I love him so much...he is my first born nephew as well as my godson. And I hate seeing my sister at a lost. She is a nurse at the Childrens Hospital that he goes to for clinic and where he is hospitalized. She deals with sick children all the time, she just can't get through to her own son.
Thanks for any advice, and sorry so long. It's weighing on my heart.

 

[EnergyGal]

I understand your frustration. CF is tough but much more difficult to fight when you have a defeated attitude.

This is what I would do. I would send him this link to read below. This young man turned his life around in one year. Very inspiring. Positive Energy in motion either in the mind or body is the only way out of any problem.

If this does not work, a real heart to heart talk is the only solution. I would say that there are always options to improve your health as long as you are alive and if you train your mind not to win you are going to lose. One needs to realize that as long as their is a quality of life and hope for your future either living longer with CF or a transplant one needs to take the bull by the horns.


Here is another inspirational story
<a target=_blank class=ftalternatingbarlinklarge href="http://www.bodybuilding.com/fun/cystic.htm">http://www.bodybuilding.com/fun/cystic.htm</a>

 

[Rokiss12]

could he get a screen name on here? it might help to talk to other teens/adults with CF? im 16 and have found this site very helpful not only physically and educationally, but especially emotionally! good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[tammykrumrey]

Risa,
Thank you for the advice. I will send him the link and hope he goes with it<img src="i/expressions/face-icon-small-smile.gif" border="0">
And Kate, I did actually come sit with me about two weeks ago and show him some of the information that is being passed along in this forum. I urged him to take some time and sit down and just see what others are saying that are in the same boat as him. I am fairly sure that he was just letting the information go in one ear and out the other and just trying to make me happy...did I mention that my nephew is incredibly strong willed, ughhh!!!!!!!! I really hope we can get him motivated. Thank you for all of the suggestions.

 

[EnergyGal]

Even though you do not have CF yourself you can pass cepacia along to your children that do not have cepacia. I would be careful around your nephew.

Hopefully soon your nephew will turn around his stubborness in a positive light.

 

[Allie]

THis may not be for all tastes, but I'm going to throw it out there anyhow. When Ry started being a pill about his treatments, at around the same age, Michael and Hannah were just very real and straightforward with him. They told him that CF was going to kill him, and if he was so stupid that he wanted it to kill him even sooner that was his business, but he had better think long and hard about the consequences of his actions, because he would only have himself to blame when the time came, and they would NOT feel sorry for him. THey left him to reflect upon this, and by the next morning, Ry was all sorts of compliant.

 

[tammykrumrey]

You're kidding????!!!!!!!!! Our CF doctor has never told me to be careful around him as to being able to pass it on to my girls<img src="i/expressions/face-icon-small-sad.gif" border="0"> He is all three of the kids doctor and has had meetings with all of us, immediate family, when we found out about Dalton and the B.Cepacia. He has always had us keep at least the 3 feet rule, but we always stay further away. And honestly, we just had a situation where the kiddos were in the same house, and Dalton (who has been in the hosp. now for a week) had a bad cough and was coughing every where. I freaked out! Even though the kids stay away from each other, I was worried about the contaiminated surfaces. I was cleaning everything in sight, even though I know B.Cepacia is tough to kill! And I will never let that type of situation happen again. It scared the daylights out of me! Its not worth the risk of my girls health, and the stress it caused. But, I have never been worried about giving it to my girls<img src="i/expressions/face-icon-small-sad.gif" border="0"> after hugs from my nephew...I just hate CF!!!!!!

 

[Rokiss12]

maybe just let him go on the site, not tell him information or sit with him, let him do his own thing on here. just encourage him enough to get a screen name, but dont nag.

 

[tammykrumrey]

Allie,
It sounds like Ry was a very smart and level headed young man! My sister is straightforward with him. I think she always has been. And I do know that she has told him that if he wants to live past his teenage years, that it was up to him. I actually tell my daughters that already even at 8 and 7! If they fight about the vest or enzymes or whatever, I just tell them that it's their life they are messing with and that I cannot always be there to make them do what they need to do. Maybe they are too young for that type of directness, but I don't really know how else to put it. I don't think it does any good to sugar coat things when it comes to the reality of CF. I do think my sister is the same with my nephew. If only he was more open-minded. Maybe with time he will come around if we all keep having heart to heart discussions regarding his health and the consequences of his (lack of) actions.
Thank you for your advice! Everyone is giving me more food for thought<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[thelizardqueen]

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

You're kidding????!!!!!!!!! Our CF doctor has never told me to be careful around him as to being able to pass it on to my girls<img src="i/expressions/face-icon-small-sad.gif" border="0"> He is all three of the kids doctor and has had meetings with all of us, immediate family, when we found out about Dalton and the B.Cepacia.</end quote></div>

They should not be going to clinic together. My understanding is that Cepacia patients have seperate clinic then non-cepacia patients. Even with the 3 foot rule, think about a patient with cepacia coughing and then touching something. That bacteria can stay on surfaces for days!

 

[tammykrumrey]

Thanks Kate. Maybe we do nag too much. It's just so darned hard not too when you are trying to get someone to fight for life. Maybe we need to do more encouraging...not nagging?!

 

[tammykrumrey]

Liz, I do not think Dalton goes into the same clinic area that the rest of the CF kids do. When we met witht he family, it was minus all the kids. I do know that he is always the last appt for PFT's and he goes on a completely different day than that of the other CFers. I have been told that he is there is only him and maybe one other Cepacia patient at our clinic, and they do not carry the same strain of it. Thanks for reminding me of how long it lives!

 

[Rokiss12]

i think youve got the message (haha sorry if that sounded rude, wasnt supposed to be, jsut don tno how to say it otherwise)

but sometimes, like for me, it took a life changing experience to get my butt into gear.. sounds like he might not have had that yet (or atleast enough) sometimes thats just the way it works. but maybe if he can get on here, he can see other poeples suffereings, and not need that'experience'

good luck with everything, tell him to PM me if he gets a screen name, would love to talk to him!

 

[tammykrumrey]

Oh Kate, you are cute!!! You weren't rude at all<img src="i/expressions/face-icon-small-smile.gif" border="0">
Dalton had a bad experience in January with a collapsed lung and when they put the chest tubes in, one of the tubes had a hole in it and air was escaping into his body. The poor guy swelled up with air and was in the worst pain that he can remember. (even more than when he had his right upper lobe removed) He ended up in the PICU for two days after they were worried that the swelling was causing problems with his heart. They thought that would be enough to kick him into gear, but after about 1 week it was back to normal...
Maybe you are right though. Maybe it is going to take a 'bigger' life changing experience than that. Unfortunately.

 

[anonymous]

I was a total turd about taking my treatments when I was a teen. I had my head up my bum and wandered around wondering why it was dark all day. I even ran away from home at one point because I felt like I was a burden to my family. Evenutally I shaped up.

Bottom line is that rebellion is part of the deal whether you have CF or not. Each of us is responsible for our own actions. Sadly, with CF the consequences are much more dire than other forms of teen "acting out".

One of my friends when I was a teen who went to the same doctor I did, didn't take care of himself at all. He didn't eat right, didn't keep his appointments, didn't do his treatments, etc. Eventually, the doctor refused to see him any more because it was a waste of time for both of them. Jeff died before he was a senior in high school and boy oh boy did my parents use that as an object lesson for me!

I am not a parent, so my parenting tips are unproven, but I think I benefitted greatly from how my parents raised me to manage my CF. They never let up. They let me have the freedom to choose whether I was going to be compliant or not, but they rode me pretty hard to make sure I made the right choice. They helped me get the medical attention I needed when my bad choices affected my health, they were supportive, but they didn't cater to me or coddle me. CF is MY disease and my responsibility.

I hope your nephew shapes up and that his parents don't let up.

 

[tammykrumrey]

Anonymous,
Thank you for your story. I will pass this information on to my sister and her husband. And I need to store it in my brain for when my own girls are teenagers...scary!!!!!!!!!!! Maybe I will be ahead of the game by listening to all of the suggestions. I know what I think, but I am not the one with CF. Although at times I feel like it is all of us in my family that have it because it affects us all so much!

 

[anonymous]

I think your girls are seeing what non compliance is all about. For some teens with CF can get away with skipping treatments etc...but I am sure your girls will be compliant just seeing their cousin present the ugly side of non compliance. Do not worry.

 

[anonymous]

That was me, Risa

 

[Scarlett81]

It's such a difficult thing for the kid and the whole family. My heart goes out to you.

You'll get lots of opionions here on this one, everyone has had a different experience with this. I doubt that anyone grew up with disease and says, from 5 I always took my pancrease, and always did this and that, and never drank soda.... almost everyone deals with this. So firstly I would try to remember that he is being a normal 15 year old! Esp for a boy. The problem is, whether he wants to face this or not, he can't be a normal 15 year old. (at least in this respect) He can't afford to stop doing his treatments and stuff, like the other boys his age stop doing their homework.

I'm very glad to hear he is seeing a therapist for these issues. I think its wonderful that his parents at least do not want to run away from this issue, and are trying to face it.

For me, this may sound funny, but I feel I was given too much pity. Combined with not enough non-Cf related love and attention from my family, mostly parents.
Since I was given too much pity, it think it made me expect to be treated a certain way, and in my mind at least-it lowered what people expected of me. For example, in my mind, I deserved to get out of my homework assignments. I deserved to skip a therapy b/c I was too tired. I deserved to stay out too much and run myself ragged b/c I was "different". Poor me. For me, it was a pity party. And the pity party ran all night long! That was the root cause of my rebllion, at least the part related to Cf.

I don't know if that sounds like him-oh, well I'll die anyway, so I can do this....? Maybe it doesn't sound like him, but that was just my experience.

My mom tried everything. But it alot of ways, she did many things wrong. She did her best though. She tried grounding, she would take away privledges if I skipped too many therapies. She tried guilt. She tried ignoring the problem. I wish I could say all that worked-but it didn't. I had to learn on my own.

As a parent I'm sure you don't care what you have to do to save your kids life-of course,, thats understandable. But I don't know if you can do anything.

As I got older, I met the guy I wanted to marry. He didn't care about my Cf. We got married, and that's what really changed me. I wanted to be here for him, and I wanted to be a mom. But mostly, he never defined me by my Cf. Its never been-this is my wife, who has cf. He pushes me to expect more of myself. That's really been the key for me.

I hope your nephew can find his key to success. There's no secret to success with Cf-just hard work. But he needs to find his own path there probably.

Wishing you the very best.

 

[anonymous]

Didn't read the replies so forgive me if I repeat anything already said. I was the exact same way and always felt like "<u>what's the point if I'll die anyway</u>". I always felt alone even when surrounded by supporters. Eventually I changed my way of thinking but not due to the bombardment I recieved from parents and teachers. I needed to be informed back then.....not attacked which was what it felt like. He should definitily browse this site and maybe even join. He needs to come to this CF stuff himself and not be forced to it even though he's jeopardizing his health right now. He needs real info and a little time. Just my opinion though, hope it helps.<img src="i/expressions/face-icon-small-cool.gif" border="0">