Saturday, May 8, 2010

Teens and Cystic Fibrosis

I found this post online and thought I would share. What do you guys think, does he make some good points?

Infants born and diagnosed early with cystic fibrosis are now growing up, going through puberty, and eventually, most are becoming mature adults with families of their own. The teen years are a challenge both to the parents and the teens. Teens are beginning to assert their independence, trying to be grown up, and rebellion is a stage most teens will go through.

Teenagers feel awkward and uncertain and often lose confidence in their abilities and skills. They may feel frustrated at the drugs they need to take or the time spent having physiotherapy. They may want to pretend they are normal when they are out with their friends. They may not eat healthy, take their digestive enzymes, and teenagers often start smoking at this age. Rebellion may be a perfectly normal part of going through puberty but teenagers with rebellious habits could lead to their death.

Start when your children are small to help them understand their disease. Talk about it openly and encourage them to talk about it. Help them to be educated about cystic fibrosis. You can encourage them to be normal and still impress on them the urgency of keeping up with their treatments. Teens are easily embarrassed but if they have a good self-esteem it will be easier for them to talk about their disease with their friends. If you find your teenager is not taking care of their health, have started smoking, or are not taking their medications get them in to their doctor or a good psychologist.

Teenagers can make it through this difficult time in their life. They need a good support system that should include parents, teachers, spiritual leaders, and a peer support group. If they are comfortable enough to talk about their disease and explain it to their circle of friends, they should be better about having treatments and taking medications.

You can help your teenager by offering healthy meals, being able to listen to them and understand their frustration and fear. They should be treated normally and a parent should not become overprotective. Parents can be a tremendous help to their teen by allowing them the freedom to make decisions, fall down, get hurt, and learn from their mistakes. You should step in if they are neglecting their health and not taking their medications, as they should.

Encourage your teen to be frank with their friends. To other people it may seem strange to take a handful of pills before each meal or snack; for cystic fibrosis teens it is a necessity.

Complications for teens are nearly the same as for a younger child. The danger is they will take unnecessary chances and forget to take care of their health. Repeated infections that linger may cause serious damage to their lungs. There is a danger of a lung collapsing, coughing up blood, and even stroke or heart damage. Encourage your teen to take care of their health especially if they have the potential life-threatening disease called cystic fibrosis.

Posted by David Hobson

Original article can be found at http://www.pressdistribution.net/8159/helping-teens-with-cystic-fibrosis

Comments (10)

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I think that's so true it takes me straight back to being in school! I remember not taking any meds for years, apart from the creon when I was at home, I remember going to parties and smoking because everyone else was smoking and I wanted to be "normal". I remember only being able to talk about my CF when I'd been drinking.

My parents were great, and really tried to encourage me, but I was rebellious at heart and just did what I wanted. I visited a psychologist once but really didn't want to be there so it didn't go any further.

It's definitely a time in our lives where we should be well educated in the disease and have a solid network of support, even if that means sitting back and letting us make the decision to rebel...within reason. I've been lucky and still have a high lung function and haven't had IVs for over 10 years, but it's all starting to catch up on me now and so far this year has been the worst since I started secondary school.

Thanks for posting this Ronnie! It's good to know I wasn't the only person who refused to make meds! :)
As a parent of an 18yr old who is 100% compliant on some bits of treatment and 0% compliant on others - I know exactly what this is about... She also smokes - but then so do I and so can't be too hypocritical on that subject...
She says it is a 'control' thing... If she does everything she is supposed to do then that is just doing what people tell her - if she wants to be in control then the only way to exercise this is by not doing her treatment... I think saying that it is just down to self esteem and not wanting to be 'different' is far too simplistic. Also suggesting that if your child is 'self-harming' by not doing treatment - for that's what it is, in the same self-harm bracket as eating disorders or cutting, - then just report them to their docs or a psychologist is not necessarily helpful... It needs to be THEIR choice to do their treatment... NOT parents and medical team ganging up on them telling them what to do... They need support, information and the room to make their own decision... It's so hard as a parent to watch them take control and responsibility for their lives - but it has to be done...
I agree with this article for the most part. The intensity of the backlash will depend on the individual and the environment, but it's a pretty good representation of being a teen with CF. Parents need to start involving their kids in some of their healthcare needs- med prepping for example - at a younger age and empower them to be self-reliant. That way the chances of an intense backlash are minimized.

Like Ruth, I was not a perfect CF patient in my teen years. Many of us went through that rebellious faze. It's such a tough road to travel for a parent though. I posed a question like this on CL that Ronnie ended up posting on his blog because it is a relevant overwhelming situation. There were some great answers on CL and on Ronnie's post.

Diesel - Perhaps you could add a link to that blog post on here? It seems to go hand and hand with this article.

Later Dude.
I am so not looking forward to the teen age years but then hopefully there will be a CURE!!!! I am the mom that lets Courtney help me with her meds when we go to the doctors and she is getting asked questions I let her answer them and then if she forgets something then I add to it. Courtney is only 6.5 years and yes at times feels like she has no control so she will fight with me on eating and at times treatments but more with food. Thanks for sharing this Ronnie
I think basically people should live like this:
You have cf.. yeah be cautious.. do your meds as much as you can.. but cf is your life so don't be embarrassed about it.
I think the article sort of made it sound like we need too much additional help though.. it depends on everyone's own different needs and it shouldn't be a "set" thing that everyone should live by.
I'm always available if he would ever want to talk to someone that's "been there".
I'm here to help as well, Jennifer. I'm 31 and have been through it too. Not easy for a parent or a teen. Peaceful things.
Hey guys, Just thought I'd add, as a teenager I never really rebelled on doing my meds at all, although did struggle to eat to the point of developing a slight control issue with it. I also told me friends from day one that i had CF, which although did have result in some stressful situations initially, helped me be open with my friends from day one. Obviously the big difference between then and now is that there wasn't the internet so my mates only knew what I told them about CF - so i down played its seriousness. On the plus side, I if ever dared to try smoking my friends would go mental at me, so actually it helped create positive peer pressure!
What I would say to parents with CF kids is that be tough on them when it comes to compliance but easier on them when it comes to social activities. I was out clubbing and going to bars when I was 16, with the full knowledge of my parents. The fact I knew they were reasonable about giving me freedom socially made me realise that they weren't being unreasonable asking me to do my meds - plus the more fun things you've got lined up the more you realise that doing your meds and staying healthy just helps you lead your life to the full - so in a way you get to rebel more by staying healthy! Hope that helps a little...
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Good advice Sharon!!!

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