Being The Parent to a Teenager (With Cystic Fibrosis) Is Hard

It's been awhile since I've answered a question through the blog, or written anything for that matter, so hopefully this spurs me into writing more blogs!

Hey Ronnie. Hope you have been doing well! Question for u. I'm hoping u can give me some insight as to whether or not I'm being too nagging of a mom or not, and to see if you went through some of the feelings/emotions ______ is dealing with right now. . 

First, please understand that it is essentially impossible to be a parent and not a nag. I can't imagine a world in which a caring and loving parent doesn't nag once in a while. Now, an apathetic parent won't nag, but if you're an apathetic parent and your child has cystic fibrosis, he or she is probably screwed.

He is 14 yo BTW. 

Say no more! I have known very few, if any, unemotional, or frankly, level-headed 14 year-olds. Certainly some of his response can be as an indirect result of having cystic fibrosis, but it is more likely due to many of the same issues most 14 year-olds go through socially, physically and mentally.

Anyway, he had his clinic visit last week. Not a great visit for him, as his weight and BMI continue to drol, along with the fact he has this lingering cough that reoccur after being off oral antibiotics for a week or 2. Anyway, since that visit he has been not himself. He is usually a pretty laid back, go with the flow, happy...and compliant....kid. But something changed in him after that appt. 

We all like to feel like we're in control and doing a "good job". My guess is that he felt like he had lost some control over his body and as a result "failing". With many CF patients I've known over the years a common response is, "What's the point of taking such good care of myself if it doesn't really matter anyway?". With this, they are saying that death is inevitable and taking good care of themselves doesn't seem worth it. In my opinion of course, they are missing the point. Yup, we're all going to die. I'm not concerned about that. I'm much more concerned about being at the top of my game while I'm alive. It would really suck to feel terrible, hate life and then die. I like the prospect of feeling good, loving life and then dying much better.

I've really been on his case about him taking over more responsibility when it comes to remembering to take his pills, especially his appetite stimulant. I've also been on his case that he needs to be eating more, as I'm afraid if his BMI drops anymore they'll want to do a feeding tube for nighttime.

I'm sure that he is more than aware of the possible consequence of not maintaining a healthy weight. You'd think that'd be a deterrent wouldn't you? Now, who has the ultimate decision to make whether or not he would get a feeding tube if he were to drop below a satisfactory weight? Are you going to make the decision? Will he?

Last night I saw a side of _____ I've never seen. After having a lengthy discussion about him just eating fries for lunch and not taking his pill, he freaked out. Went up to his room and was so angry he kicked the wall putting a hole in it. 

First, I hope that he will be paying to fix the wall. Second, sounds like a teenager. Third, he sounds ripe for natural consequences of his choices. Just as the consequence for kicking a hole in the wall is figuring out how to pay to repair it, the natural consequence of not taking your appetite stimulant and maintaining a healthy weight is medical intervention. It's not a punishment, it's just the result of his choice. Now, if he's making the decision and elects not to get a g-tube, he'll have to deal with those consequences as well.

On a personal note, my mom made basically every medical decision for me until I moved out of the house at 20 years of age. If I lived under her roof, I went by her rules. Her number 1 rule for me was to do what was best for my health. Missing treatments wasn't a option and I often had a tune-up if my numbers slipped just a bit.

Mind you, this is sooooo out of character for him. I tried getting him to talk about what he was feeling, but couldn't get him to open up. I'm guessing he's annoyed as heck with me nagging him about all this CF stuff, and I think he's just plain pissed he can't be a "normal" kid and not have all the worries/responsibilities that CF brings. 

So, is his big issue the appetite stimulant? If he does all his other therapies, which require a lot more time, but has an issue with a pill, I feel like there is something bigger going on. Does he take it at home? Id his issue taking it at school?

My heart is sad for him. I explained to him I don't mean to be a nag....that I am just trying the best I know how to prepare him for taking care of himself when he goes off to college. 

I'm sorry. Being a parent is sooooo hard. Being a parent to someone with a chronic illness can be even tougher.

Do you remember getting upset with your folks like this when it came to CF stuff? 

I'm sure I had my moments, but honestly, my mom established early that it was her way or the highway. I got upset about plenty of stuff, but generally speaking, it wasn't CF related. Maybe it was because the burden of treatment time wasn't as lengthy for me when growing up? Remember, I didn't have a Vest until I was 19 and Pulmozyme came out when I was 14 or so. Until I was 14, I only got pounded by hand twice a day, did albuterol and of course the various pills.

Any words of wisdom or advice you could give me would be appreciated more than you know. Sorry to ramble on, bit I thought you'd be a great person for me to get some input from. Thanks.

I don't have many regrets, but one of them makes since to share here. I made some very bad decisions when I thought life was all about me, friends, school/work, sports and having fun. I've ALWAYS loved my life, but I definitely made decisions in spite of CF and far too often ignored my CF to "be one of the guys" and not let CF or my treatments get in the way. I always felt like a fit in, that wasn't it, but I was too stubborn to let CF cause me to "miss out" on something. If it were a choice between doing a treatment or getting ready to hang with friends, guess what I would do? Deciding to get to the bar early or do my nighttime treatment often resulted in me getting to the bar early. Getting a mid-day treatment in was often trumped by working as much as I could during the day.

Looking back, none of that mattered. Did I have fun? YUP! Was I helping people and making the world a better place? I hope. Would I take it all back to not have to do so many treatments now and miss time with my family? In a heartbeat. I can't tell you how many Valentine Days and anniversaries I've missed because I was in the hospital. It sucks. I feel guilty. I feel completely selfish for the decisions I made in my 20's that lead to a huge drop in my health.

I wish I wouldn't have "lived" so much then so I could live with my family more now. I wasn't nearly mature enough to realize that then and honestly, I don't know what someone could have said or done to change those decisions.

As a parent, I think you need to try and picture yourself 10 years from now and look back and make decisions now that you'll be comfortable with. Make sense?

My mom was tough. There were a lot of times that she wasn't nice. I certainly "hated" her in some moments. But I know she can look back with confidence in the decisions she made with me knowing that they were the best at that time and with the son she had. I love her to pieces and am so thankful for the mom that she was.

Question from a Reader: What can I say?

Another great question and I'm sure far too often occurring situation in the CF community. I can understand his frustration and confusion during these events and with the "CF Life" in general:

My problem is my son, who is now 10, and has had a lot of horrible experiences with lab draws but of course needs to get them at least once a year if not more. Beyond being a hard stick he gets anxious so the more time drawn out looking for veins the more he fights. Our regular lab flat out refused to draw his blood work today because 4 technicians couldn't find a vein and when one went in to attempt to do a draw on what he though was a vein [Child's name] refused to hold still. The day pretty much left both of us in frustrating tears. 

He argues the point of "Why do I need to have all these sticks if I don't feel sick?" I don't know whether to say "CF is doing more damage than you realize and watching it now may prevent major problems later" or "While we are responsible for you , you'll get the tests we feel will benefit your health". Both sound harsh but I don't know where else to go with it.

"While we are responsible for you , you'll get the tests we feel will benefit your health". That was pretty much my mom's response while growing up. My roof, my rules and under my roof, your health is number one. We can choose to be proactive, reactive or non active. And under my roof, we're proactive. Also, there is nothing wrong with rewarding good behavior and not rewarding behavior that isn't acceptable.

[Child's name], when you hold still and are brave for the blood draws today, you can pick the restaurant that we go to afterwards.

With that said, next time 3 technicians can't find a vein, you can feel free to "protect" your son and step in and say "I'm sorry, but 3 different techs not being successful is good for today. We'll reschedule and hopefully have better luck next time"

Be sure he is drinking a TON of water on the days he's going to get a stick to really pump up those veins.

And last, nobody walking the earth with CF was perfect as a teen/pre-teen. We'll all make mistakes. Make stupid decisions, etc. What we love though, without saying it, is when our parents put our health number one and love up on us 24 hours a day.

There is no greater love in my opinion than a CF mom holding the line and doing what's best for her CF child and other children of course!!

Treatment Fights

Here's another great question by a momma in the community. This one is of course VERY common and a struggle that nearly every parent faces. If you don't face it now, more likely than not, you will in the future. Hopefully this helps at least just a little bit.

Thank you ronnie for taken the time to get back to me .Well here it is how did your mother dill with you not taken your medication ,and treatment and when did the crying stop and when did she move on and let you do it on your own ? there is some days i just want to give up and move on with my life ,but he is my life and well your a father you no that your child is your world what are you going to do if they not here ? Hope that doesn't happen but he isn't do the thing he needs to do . And on the idea's i would love to help the next child with cf get it that they need to do they treatments and medication before it to later thats all ,if i could make a different in someone , help them understand that they mother is doing what is best for them .Thank you so much for taken the time to talk with me.

My mom instilled rules and stuck to them at a very early age. I literally had no other choice but to do my treatments. My life really sucked when I refused to do them. After a couple times of my life sucking, I decided that it wasn't worth fighting.

He lives with you right? The only thing you owe him as a mom is food, shelter and clothing. Everything else is a privilege and not a right. If I remember correctly, he plays video games? Well I can assure you that there would have been no video game playing in my mom's house if I didn't do my treatments. If she caught me sneaking them in at night, she would have cut the power cord. 


In fact, I've told a story many times that has to do with just that - treatments and video games. I was feeling brave one day and I refused to do my treatments. I was "too busy" playing video games with my friends. My mom had just the solution. She walked to the kitchen drawer, pulled out a pair of scissors, came into my room, picked up the power cord to my gaming system, and proceeded to cut the cord (or so I thought). Obviously it got my attention and I believed 100% that she was going to do it. From then on, I remember much fewer fights over treatments :)

As a parent, you have to be willing to endure short-term pain, for long-term reward. He'll say all sorts of nasty things to you now that you're trying to put your foot down, but I assure you, deep down, he's knows it's out of love. In the long run, it's much more mean to your child NOT to demand treatments. You need to be the voice of reason - through force or love or both - when we're being unreasonable. Refusing to do something that will in fact improve and extend our lives is totally unreasonable.

My mom let go when I moved out of the house as I was no longer her responsibility. Did she still love me? Of course! But at some point she had to let this little bird fly free and make my own stupid decisions. There was no time more perfect than when I moved out and became "a man". Other parents may feel the time is sooner however and each family needs to decide what works for them and their family.



I can tell you this though, and I mean it from the bottom of my heart - Parents of CFers have ONE job as it relates to CF; You must make us do our treatments come hell or high water.

Teenagers and Cystic Fibrosis

Question: My 15 yr old granddaughter. She has rebelled at times on treatments.Drs say it is age she will get better as she gets older. Were you always as good about it? Any feed back on this will help.

The doctors are correct in saying that it will get better with age. Teenagers in general are rebellious with or without CF. CF only exacerbates the problem as there is nothing more important in a teen's life than status and friends. Having CF and doing treatments can unfortunately at times interfere with these two things. I'm guessing that she has said more than once "I just want to be like my friends," or "I hate CF". Both of these are very common and very valid responses to having CF as a teenager. What she's going through is tough and is not at all fun.

What we must realize however that, "being like our friends", includes having the ability to do what they do. Whether we like it or not, this is made possible by our health. Not being at a good place with our health inhibits our ability to just be "one of the guys" (or in this case girls), but it's hard to see that as a teen.

We often think about treatments as a means to an end when we're sick. I encourage people to think about treatments as a means to an end when we're healthy. What I mean is this - we must be willing to do everything necessary when we're healthy to put ourselves in the best position not to be sick. Treatments need not be a response to sickness, but used in conjunction with wellness.

I use the analogy of a scale. On one side we have someone "sick" with CF and on one side we have someone "healthy" with CF. Now, if you had a rock that represented doing treatments, which side of the scale would you put the rock? Who do we as a community instinctively think about as "doing more treatments" than the other person? I would put forth that most of us would put the rock on the side of the scale with the sick CFer. This certainly isn't true for everyone, but from my experience, that would be my hunch. Now, each one of us must answer why we put the rock where we did and that will generally tell us about our view of CF, control and treatments.

As for me, I put the rock on the side of the healthy CFer. When I was a teen? Not so much. I thought only "sick people" did a bunch of treatments. Granted, I was doing two a day, but it was rarely willingly and not something that I looked forward to. In many ways, I fell into the trap of being "too healthy" with CF. See, in high school; my FEV1% was around 110. I felt and acted just like everyone else. The only time I thought about CF was during said treatment times and when I required a hospital stay due to an exacerbation (about twice a year). Apart from those times, CF never entered my mind. I felt some relief from my treatments, but I didn't feel THAT much.

What really made my lungs feel like a hundred bucks was football practice, or any other physical activity like basketball, baseball, running etc. That's another thing to point out - until I started playing sports year round, my FEV1% was nowhere near that 110% that I mentioned earlier. So in essence, I was doing a ton of treatments, 2-3 hours per day to be exact, just not the traditional treatments (nebs, vest) that we think about. I was doing additional treatments in the form of sports and exercise. To this day, nothing makes me cough more or produce more mucus than running, be it on the treadmill, street or football field.

My family supported me in many ways regarding treatments and CF care. I think a lot of the credit has to go to my mom for being quite possibly the biggest reason that I took such good care of myself growing up. She had quite a “unique” strategy – My house, my rules (I’m of course kidding when I say that it was unique). One thing I’ll say however is she delivered this strategy with complete love. I never doubted for a second that I, and in turn my health, was the single most important thing to my mom when I was growing up. I was an only child for quite some time, so my mom was able to focus all of her energy and time on making sure she did everything necessary to put me in the best position to succeed. This included running me around to practice, supporting me when I wanted to try a new sport and most of all, holding her line when it came to treatments. 

Here’s the deal though, she balanced that with great freedom. I had a very normal childhood. I could do just about anything I wanted to do in terms of sleepovers, extra curricular activities, etc AS LONG AS my treatments were done. And when I stepped out of line, she didn’t waffle or give me another chance; I faced consequences for not following the rules. She only had to keep me out of football practice one time to show me she was serious after I chose to rebel against treatments that particular morning.

All teens have something important to them. All parents find their children, including teens believe it or not, important. In my opinion, effective parents mesh what’s important to them with what’s important to their teen. There is one key thing to remember though – one is the parent and one is the teen. In a perfect scenario the parent and the teen can come to a mutual agreement about treatments and expectations. But, and this is a big but, perfect scenarios aren’t the majority. At some point, the parent must decide what’s more important to them, a perfect scenario or their teen doing his or her treatments.

There is hardly a fool-proof strategy when it comes to convincing teens that treatments are important or implementing a system that results in few missed treatments, there is however a great reward for parents, and teens, that manage to do so.

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

Can CF Teens and Parents Find Common Ground??

A good friend of the CF community and puppet master Josh Mogren, brought up a great "debate" question over on CysticLife.org that I wanted to get the RSR reader's take on:

I have spoken with a few teenagers who claim that their parents are too overwhelming of a presence in their lives. While this is common place among most teenagers across the globe, what happens when you add Cystic Fibrosis to the equation? Teens feel trapped by their parents because they don't feel like they are allowed to make their own choices about their lives and learn from their mistakes. Most parents I have talked to say the reason that they are so concerned for their children is because they don't see their children doing the best they can with their healthcare and daily routines that would improve their lives. Some have seen other people's children pass away from CF and fear the possibility that this might happen to their child. So they refocus their energy toward making sure their child thrives. The parents feel (rightfully so in some respects) that they have given their blood, sweat, and tears to their children and that CF lives are too precious to learn from mistakes because the results are far too costly. CFer's and Parents....let's honestly discuss...where can we meet in the middle? How can teens understand their parents point of view and earn their trust? How can parents learn to start letting go and trusting their children? Positivity and respectful responses are a must! This is thin ice territory, but it must be traveled on...

Parents, what do you think? What is your responsibility to your child and at want point does that responsibility shift? Teens, when can you begin to shoulder some of the burden for your "cystic life"? What's the best way for your parents to handle this transition?

If you'd like to view the answers over on CysticLife please click here.