HELP! My 10yr old is refusing to do airway clearance

[shellbuggy]

My 10 yr old is refusing todo her airway clearance. She has always been healthy and her PFT's have always been in the upper 90's until last year. March 2010 was her firstEVER tune up and since then she has beenhospitalized a total of 3 times. I have tried everything to get her back on track but nothing is working. I can not let myself believe she is the only one that has ever done this so if anyone has any advise I would be very grateful!!!!!!

 

[shellbuggy]

My 10 yr old is refusing todo her airway clearance. She has always been healthy and her PFT's have always been in the upper 90's until last year. March 2010 was her firstEVER tune up and since then she has beenhospitalized a total of 3 times. I have tried everything to get her back on track but nothing is working. I can not let myself believe she is the only one that has ever done this so if anyone has any advise I would be very grateful!!!!!!

 

[JenWren]

oh boy, right on time as far as age appropriate. This is all about independence as far as her age goes. Needing to feel like she has a bit of it. Especially where having a disease like CF can make you feel powerless as you grow up. It is just part of that process. If she wasn't doing this and was submissive and spirit less I would worry more. She is showing you that feeling in control is important to her. Perhaps giving her healthy choices or having treatments either follow something she chooses to do or visa versa, with the verbal promise to do the treatment if they are done then she gets a treat. Food is not a good thing to use as a bargaining tool. Let her make the choice. As corny as it sounds hugs work too. Perhaps sitting with the your 10 yr old during treatment and playing a card game. It is time well spent. The extra attention may be just what she needs. With the reward give a great big hug and watch eventually they will choose the hug without a treat. Good luck<br><br>JenWren, CF 51 yrs. , Child Life Professional, <br><br>

 

[JenWren]

oh boy, right on time as far as age appropriate. This is all about independence as far as her age goes. Needing to feel like she has a bit of it. Especially where having a disease like CF can make you feel powerless as you grow up. It is just part of that process. If she wasn't doing this and was submissive and spirit less I would worry more. She is showing you that feeling in control is important to her. Perhaps giving her healthy choices or having treatments either follow something she chooses to do or visa versa, with the verbal promise to do the treatment if they are done then she gets a treat. Food is not a good thing to use as a bargaining tool. Let her make the choice. As corny as it sounds hugs work too. Perhaps sitting with the your 10 yr old during treatment and playing a card game. It is time well spent. The extra attention may be just what she needs. With the reward give a great big hug and watch eventually they will choose the hug without a treat. Good luck<br><br>JenWren, CF 51 yrs. , Child Life Professional, <br><br>

 

[Tisha]

In Sweden, they make it a game. For instance:
- Jumping on an elastic table (trampoline?)
- Blowing bubbles in a bottle through a small tube (= positive expiratory pressure!)
- Teaming up to play racing horses by blowing small paper balls on the floor to see which one gets to the goal first
- Swimming and playing games in the water
- Horse riding
- Blowing soap bubbles
- Tickle her!!
- Anything that makes you jump / laugh -> cough

You have to make it fun! If it's imposed and boring, for sure nobody wants to do it! Have fun with your kid! Find sports and games to do that she likes! I can totally relate because I was the same, I've always been kinda free-minded and never wanted to do what I was told/forced to do...

 

[Tisha]

In Sweden, they make it a game. For instance:
- Jumping on an elastic table (trampoline?)
- Blowing bubbles in a bottle through a small tube (= positive expiratory pressure!)
- Teaming up to play racing horses by blowing small paper balls on the floor to see which one gets to the goal first
- Swimming and playing games in the water
- Horse riding
- Blowing soap bubbles
- Tickle her!!
- Anything that makes you jump / laugh -> cough

You have to make it fun! If it's imposed and boring, for sure nobody wants to do it! Have fun with your kid! Find sports and games to do that she likes! I can totally relate because I was the same, I've always been kinda free-minded and never wanted to do what I was told/forced to do...

 

[imported_Momto2]

umm, she is ten right? not an adult? I would very sweetly explain to her that she has no choice int he matter. End of discussion. And yes, my daughter is ten, I know how ten can be, and my eldest is about as stuborn as they come (just like her mom!) When it comes to her health, I would be crystal clear thatmom and dad call the shots. Children need parents/leadership, we have the experience and knowledge to make the intelligent choices, she does not. Why else would kids have parents if not to love them enough to make the tough decisions and follow through even when the kid hates it? Good habits are learned NOW. She'll be thanking you later in life....I know I did with my parents because now I am 40, in decent shape, and have a family of my own to love and protect. I would comprimise "control" in other areas where she can make choices that wont decide the rest of her life. Her showing spirit is great, but redirect it.

 

[imported_Momto2]

umm, she is ten right? not an adult? I would very sweetly explain to her that she has no choice int he matter. End of discussion. And yes, my daughter is ten, I know how ten can be, and my eldest is about as stuborn as they come (just like her mom!) When it comes to her health, I would be crystal clear thatmom and dad call the shots. Children need parents/leadership, we have the experience and knowledge to make the intelligent choices, she does not. Why else would kids have parents if not to love them enough to make the tough decisions and follow through even when the kid hates it? Good habits are learned NOW. She'll be thanking you later in life....I know I did with my parents because now I am 40, in decent shape, and have a family of my own to love and protect. I would comprimise "control" in other areas where she can make choices that wont decide the rest of her life. Her showing spirit is great, but redirect it.

 

[ryry11]

I'm wondering if it would be more effective to have her doctor talk to her about how important it is, and explain to her what will happen if she doesn't do CPT. You might also remind her how unenjoyable the hospital was and explain to her that she will spend more and more time in the hospital if she won't do her CPT. Also, even for me (19 years), I bribe myself to do the vest by using it to do something like check Tumblr, watch The Office, et cetera; that is to say that I don't use the time to do homework because I know that if I don't have a reason to look forward to it, I won't do it.

 

[ryry11]

I'm wondering if it would be more effective to have her doctor talk to her about how important it is, and explain to her what will happen if she doesn't do CPT. You might also remind her how unenjoyable the hospital was and explain to her that she will spend more and more time in the hospital if she won't do her CPT. Also, even for me (19 years), I bribe myself to do the vest by using it to do something like check Tumblr, watch The Office, et cetera; that is to say that I don't use the time to do homework because I know that if I don't have a reason to look forward to it, I won't do it.

 

[Printer]

WOW!!! She is 10 years old and she is telling you what she will and will not do. What will she decide tomorrow or a year from now. Will she decide that she has had enough of school?

As the branch is bent, so shall thr tree grow.

You need to take charge before it is too late. Give her a KICK IN THE ASS, literaly or otherwise.

Bill

 

[Printer]

WOW!!! She is 10 years old and she is telling you what she will and will not do. What will she decide tomorrow or a year from now. Will she decide that she has had enough of school?

As the branch is bent, so shall thr tree grow.

You need to take charge before it is too late. Give her a KICK IN THE ASS, literaly or otherwise.

Bill

 

[Ratatosk]

With DS, it's never been an option to miss treatments just because he doesn't want to do them. He's always gotten a choice as to what he can do during vest times. So it's phrased "It's time to do your vest, do you want to play video games, watch tv, play on the Ipad....?" Those are his times to do what he wants. He has to do his vest, but has some control over what he does during this time. And usually one of us hangs out with him to keep him company.

 

[Ratatosk]

With DS, it's never been an option to miss treatments just because he doesn't want to do them. He's always gotten a choice as to what he can do during vest times. So it's phrased "It's time to do your vest, do you want to play video games, watch tv, play on the Ipad....?" Those are his times to do what he wants. He has to do his vest, but has some control over what he does during this time. And usually one of us hangs out with him to keep him company.

 

[LisaGreene]

There is alot you can do about this and it is typical for the age. We have a whole book about how to deal with this exact issue called "Parenting Children with Health Issues" by Cline/Greene. There is also a new DVD; all based on the Love and Logic parenting approach. I have two kids with CF so that's why I helped create these resources along with a child psychiatrist. <a href="http://www.PCWHI.com">www.PCWHI.com</a>
First of all, try choices. They work like magic with many kids. You need to share control rather than being a drill sergeant or helicopter parent. Instead, be a consultant. Here's an article about the differences: <a href="http://www.loveandlogic.com/pdfs/threetypes.pdf">http://www.loveandlogic.com/pdfs/threetypes.pdf</a>
The biggest thing is not to get mad about it but instead show empathy to your child for her frustration. Then, be sure to follow through with some kind of consequences because "treaments are not optional." Love and Logic teaches a wonderful parenting tool called the "Energy Drain." Very effective. <a href="http://www.loveandlogic.com/pdfs/genericconsequence.pdf">http://www.loveandlogic.com/pdfs/genericconsequence.pdf</a>
Be sure to notice what she does right more often than what she is doing wrong at a rate of 5 to 1. This also works like magic for many kids.
Also, visit my website at <a href="http://www.tipsforcfparents.com/">www.TipsForCFParents.com</a>. I have lots of articles there that will help.
With a few simple parenting tools, you can turn this around in a firm and loving way. This is very important now because in a couple of years (teens), it is much, much more difficult.
Good luck and feel free to contact me privately if you have any questions.

 

[LisaGreene]

There is alot you can do about this and it is typical for the age. We have a whole book about how to deal with this exact issue called "Parenting Children with Health Issues" by Cline/Greene. There is also a new DVD; all based on the Love and Logic parenting approach. I have two kids with CF so that's why I helped create these resources along with a child psychiatrist. <a href="http://www.PCWHI.com">www.PCWHI.com</a>
First of all, try choices. They work like magic with many kids. You need to share control rather than being a drill sergeant or helicopter parent. Instead, be a consultant. Here's an article about the differences: <a href="http://www.loveandlogic.com/pdfs/threetypes.pdf">http://www.loveandlogic.com/pdfs/threetypes.pdf</a>
The biggest thing is not to get mad about it but instead show empathy to your child for her frustration. Then, be sure to follow through with some kind of consequences because "treaments are not optional." Love and Logic teaches a wonderful parenting tool called the "Energy Drain." Very effective. <a href="http://www.loveandlogic.com/pdfs/genericconsequence.pdf">http://www.loveandlogic.com/pdfs/genericconsequence.pdf</a>
Be sure to notice what she does right more often than what she is doing wrong at a rate of 5 to 1. This also works like magic for many kids.
Also, visit my website at <a href="http://www.tipsforcfparents.com/">www.TipsForCFParents.com</a>. I have lots of articles there that will help.
With a few simple parenting tools, you can turn this around in a firm and loving way. This is very important now because in a couple of years (teens), it is much, much more difficult.
Good luck and feel free to contact me privately if you have any questions.

 

[CyrilCrodius]

Don't listen to people telling you that it's a lack of discipline. It can be something completely different. For example, my mom has always been so obsessive with my CF, everything was always about my CF, she saw me more for my disease than for who I was as a person. It was oppressive. She was very controlling. It was very hard and had a devastating effect on my psych. I can't bear anything like that anymore and I am pretty sure that it's why I kind of "run away from my therapies" while I live with her, yet am right on them when I live on my own. There are strongly negative emotions attached to my therapies, emotions that make me want to escape, run away, emotions that make me feel like I have had enough of it for my whole life, that I was nothing to do with all of this anymore, that I <em>just can't do them for better, more important, life saving reasons : to protect my sanity</em>. As long as I don't feel that I am left alone in PEACE, in full control, I can't. As if not doing them was a defense mechanism against an overcontrolling obsessive mother. Yeah, I think that's exactly it. A defense mechanism against an overcontrolling obsessive mother. 17 years of psychologists never figured that out. No wait... one did... but my mom didn't listen. Anyway... just to say that it can be something completely different than what it looks like. In any case, don't worry, she KNOWS it's important (oh, how my mom, the doctors, psychologists, physical therapists, dieticians, nurses loved to remind me that it was important to do my therapies, as if I was a full blown retard and didn't know about it. You have no idea how frustrating that was). It's something else.

 

[Aboveallislove]

I am so sorry you are facing this. You must be so frustrated, scared, even angry. I cannot recommend highly enough Lisa Greene's book. I've probably read it 10 times. Our son is only 3, but I try to implement as much as possible. The key for me is it isn't just a book that helps you parent, but it helps you feel like you can parent--it gives you strength and confidence to handle what you have no control over. Hugs

 

[luv2run]

I was just like your daughter at that age, but my parents were in control. I'd throw a fit, and it didn't matter. Sometimes my parents would allow me to run, swim or do some other intense cardio as a sub. Best wishes - gain control of your little one in these important years! Her body is growing, her lungs and everything else need to reach their full potential.

 

[Gammaw]

I have found Lisa Greenes book and Love and Logic very helpful. As you see from her response above, she is a member of this forum, is very helpful, and provides ways of interacting with your children and in particular your CFer that are not as stressful to either of you than the traditional threats and control attempts. Think about it, when you were a teenager, what did you do when your parents demanded things they couldn't really enforce? You told them to stick it, and did as you pleased, and things just escalated, much to everyone's frustration. There are better ways. . . Relax. My 7 year old says he's refusing TOBI. HATES IT. SAYS IT SMELLS AND TASTES BAD. NO TOBI MOM! "You dont like TOBI, huh? It tastes funny. How about some chocolate milk after TOBI? Would that help? Would you like to play on the iPad while you do TOBI? Or watch Pokemon? How about if I sit with you.". Explore the book, Parenting Children With Health Issues. One step at a time.