Tisha has a point, short of flipping me up side down and beating on me, a good laugh/exorcise does more for clearing my lungs then anything currently on the market as a treatment that doesn't leave my damaged ribs screaming. Get them active and keep them that way, will do more for them with getting though there teens then anything else, looking at me and my sister that's the biggest difference between us and that age range. Here I'm hovoring around 40% with lots of issues and my sister is 50% FEV1's last I known.
S
Shelly43
Guest
My son is 13 1/2 and doesn't want to do his treatments and has fought me every inch of the way since he was 9.. Yeah I can bully and sometimes bribe him to do them at least half the time but it's a constant battle of wills.. I'm not sure what the answer is but ...His dad has even less success when he visits him?... But I doubt he make much effort really...
Abitify helped his attitude towards taking his meds somewhat? Not enough for me to relax or have a free moment at all....Most the time this summer it has come down to me physically putting his vest on him and pushing a neb into his mouth........
Good thing he is small for his age or I would never manage it.........
But I'm not giving up on finding an answer to this, any suggestions are encouraged... and for those of you who think I'm a controlling obsessive mom? I've tried not pushing and he practically quit doing them at all...I would just remind him and let him decide? didn't work out so hot.....
I feel you really and have read the book and still have a problem with him not wanting to be compliant...maybe he should have read the book? I've had consulors and the doctor talk to him very frankly about his illness and even begged his doctor to let him talk to one of her dying patients so he would see what not doing his meds would do to him, but she didn't want to let it happen.....
Any suggestions would be helpful....
Abitify helped his attitude towards taking his meds somewhat? Not enough for me to relax or have a free moment at all....Most the time this summer it has come down to me physically putting his vest on him and pushing a neb into his mouth........
Good thing he is small for his age or I would never manage it.........
But I'm not giving up on finding an answer to this, any suggestions are encouraged... and for those of you who think I'm a controlling obsessive mom? I've tried not pushing and he practically quit doing them at all...I would just remind him and let him decide? didn't work out so hot.....
I feel you really and have read the book and still have a problem with him not wanting to be compliant...maybe he should have read the book? I've had consulors and the doctor talk to him very frankly about his illness and even begged his doctor to let him talk to one of her dying patients so he would see what not doing his meds would do to him, but she didn't want to let it happen.....
Any suggestions would be helpful....
Pay her. I used to pay my daughter to eat. She used to rack up the money and I never actually paid her. Even if you have to pay her, it's better than her not doing it and she'll learn it's valuable to you, worth something! YOu won't have to pay her forever. Eventually she will get back on track and realize she needs to be doing this.
I don't have kids and when I was that age there were no Vests but I ran, climbed trees, rode horses, fed horses, made forts in the loft. If it was my kid I would give them a choice, run a mile or use the vest. Not much difference in the end I don't think. Get him in the habit of getting exercise and he may not need the Vest. Even better would be to run a mile w/ him.
CrisDopher
New member
I'm with Printer. A swift kick in the ass. My mom and dad would not have stood for this. My healthcare was early on placed outside the realm of anything negotiable. I could negotiate curfews, what I would and would not eat at dinner when I didn't like something, etc; but my healthcare was not a negotiable item.
That said, I was not terribly compliant once I left my parents' household - it took starting to get sick regularly to bring me back to full compliance.
That said, I was not terribly compliant once I left my parents' household - it took starting to get sick regularly to bring me back to full compliance.
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Shelly43
Guest
I'll hit our doctor up on the run a mile verses treatments thing next visit, sounds good to me... But then you run into the 105 degree weather we are having as a problem too...the doc says swimming is great too but he isn't doing laps so much as standing in the water talking to girls? So I don't think that counts? He wants, fights, demands a day off? I can see a do all your treatments no fighting and take Sunday off rule, but wouldour doctor go for it? We tried no skipping treatments and get a Monster drink the next morning? it worked for about? two weeks...... I'm willing totry most anything that doesn't compromise his health......In the mean time I'm spending my life in frustration and anger, that he doesn't care enough to help himself.
While you're talking to your doc, I really recommend you grab a copy of Parenting Children With Health Issues. It's a whole different way of interacting. It's taken me awhile cuz I'm a slow learner. . Really. But I can now hear the more useful dialogue in my head when my little ones throw me a curve. I usually have to stop myself from getting and showing anger first. . . . Step back and tell them I have to think about that . . . Then run thru some scenarios in my head and come back calmly to try them out. It works well. It used to be "I'm not doing TOBI . . . Or my vest . . . Or whatever". I would get angry, say "Yes, you have to do (whatever). Do you want to get sick? ". Or "I SAID IT'S TIME FOR TOBI!". Which was followed by "NO!". Anger, frustration, etc. Let's face it, even at only 7, I'm not going to successfully muscle him into it, or catch him when he runs, or overcome any of the craziness that follows. And even if I could, I'm going a long way to ensuring that he NEVER does it on his own when he's old enough to decide for himself! I've made it a control issue. Kids need control. At least shared control. Now, I'm not suggesting that TOBI or the vest, etc. Is optional. It's not. But what you are really trying to do along with the necessary med treatments, is to get him in the habit, and get him to make good decisions about being personally responsible FOR LIFE for taking good medical care of HIMSELF. So I personally don't want to make this a control issue, or a power struggle that he has to eventually win by refusing treatments. I'm not a pro at this, (Lisa Greene is!) but here's what I would try. The first order is to get him to feel that you heard him and understand and empathize - not criticize. "You don't want to do your vest? Would you tell me why?". (I hate it . . . . Etc. . . . The first time I actually asked this I found out that it hurt his belly and after several calls I discovered that the scar tissue from his MI surgery was tearing as the vest vibrated. I had no idea! Glad I asked what I thought was an obvious question. The manufacturer strategically inserted two foam pads that cured the problem. Oh my. Didnt I feel terrible. But that was early on and since then, there have been other occasions where he refused due to the more usual reasons). Now, the occasional reason is something like, "I hate it, or my friends don't have to do it, or I can't draw, or it's boring, etc. Whatever the reason is, repeat it so he knows you heard. Empathize . . . . Yeah, it must be hard to sit still for 30 minutes when you want to draw dragons . . . . SECOND move: for me, this has depended upon the age. When he was smaller, I would give simple choices, like do you want to watch tv or play on the iPad while we do the vest, and then we can draw dragons together. When they say, I dont want to do it at all, I answer that wasn't one of the choices and I repeat the choices. It has always worked surprisingly well. Or give a little more power . . . .which is like magic. . . Such as do you want to do your vest NOW or in 10 minutes? The answer is always 10 minutes, which is fine with me and they now feel like they have total control! When they are older I have found instead that it works well to ask HIM for ways he thinks can cure the problem. This works to help them learn to make good decisions by thinking things thru on their own . . . You're not doing the thinking for them. I often get a response like "I don't know!". Or "I won't do it at all!" I would politely and kindly (remember do not get angry anywhere in here or they will react with defiance!) reiterate that that isn't a choice, or simply ask if they would like to know what some other kids might do to solve the same problem. I almost always get a surprised stare and a weak answer "yes". Then I run thru the choices, including theirs such as "not do it at all". Then ask how they think that would work out? Yes, they might get sick, etc. Then run thru better choices if they don't come up with some in their own. . . Such as search for dragons to draw on the iPad while doing the vest, then we can draw them together when it's done. "how do you think that would work out? My little one always feels much calmer after this, much more tolerant and accepting of the inconvenience of the vest. Any there was no screaming, no fisticuffs, etc. This is all about control. Give them some! Be flexible! Do some exercise or sport of their choice instead of one vest treatment a day. Or move the vest to their bedside so they can do it while still waking up. Or get a set of headphones so they can play video games or watch tv while that loud machine is running. Or. . . Or. . . Or. . . Now I hope Lisa Greene doesn't read this and tell me I'm all wet but I could be! I'm really not an expect. But if I am all wet, I know you can get great pointers from her if you private message her. . . She has heard from me more than once and has always been very very helpful. I can also attest to the effectiveness of the Draining My Energy technique, but I've never needed it for treatments . . . I tend to use that when the children won't help with chores, or are fighting or running around like maniacs and won't stop . . . . Then I simply calmly say uh-oh you are draining my energy! And it stops . . . . They know that means that if I run out of energy, they will have to put it back by extra chores, since I don't have the energy left to do them! It stops them cold! And if they refuse, then I won't have the energy to . . . . Make fudge, take them to get ice cream, drive them to their friends party, let their friend spend the night . . . .etc. It's a great technique. Here's hoping I've been of some help, if only to encourage you to explore different options . . . . Remember the goal is to teach them to make good decisions FOR THEMSELVES when they are adults, not just to get a vest treatment today. HUGS TO YOU FOR CARING SO MUCH!
Aboveallislove
Super Moderator
Gammaw,
You took the words right of out my mouth.
Mom, please, please, please, get a copy of the Love & Logic book. Once you read it and the stories, it will click so much and as I said, not just help you with the actual challenges of parenting a CFer, but feeling like you can. Whenever I start doubting that "I can do this"--I'll pick it up and read and get back my strength. Completely agree with everything Gammaw said for examples, and also remember that when you get a fuss and screaming, fighting etc., you don't fight/argue--the books gives great examples of how to not argue. And you don't get angry--but when he's ready to go to the pool next time and chat up the girls, you might be too tired to take him because you have a headache from all the carrying on.
Good luck, hugs and prayers.
You took the words right of out my mouth.
Mom, please, please, please, get a copy of the Love & Logic book. Once you read it and the stories, it will click so much and as I said, not just help you with the actual challenges of parenting a CFer, but feeling like you can. Whenever I start doubting that "I can do this"--I'll pick it up and read and get back my strength. Completely agree with everything Gammaw said for examples, and also remember that when you get a fuss and screaming, fighting etc., you don't fight/argue--the books gives great examples of how to not argue. And you don't get angry--but when he's ready to go to the pool next time and chat up the girls, you might be too tired to take him because you have a headache from all the carrying on.
Good luck, hugs and prayers.
beautifulsoul
Super Moderator
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>devora</b></i> Pay her. I used to pay my daughter to eat.</end quote>
My parents tried that on me for eating/gaining weight!
Perhaps try a sticker chart. Print off a calendar of the month (you can get free ones online) or create a chart of your own. For each time she does a treatment she gets a sticker for that day/time. IF she completed ALL treatments for that week then, treat her to a small reward such as $2 or what ever other reward you want to use. At the same time she will be able to see the sticker chart and how many treatments she didn't or did complete. Hopefully she will make herself proud by seeing all the stickers/treatments she did, as well as receiving a reward for doing so. It could possibly create a sense of motivation.
Just a thought.
Best Wishes
My parents tried that on me for eating/gaining weight!
Perhaps try a sticker chart. Print off a calendar of the month (you can get free ones online) or create a chart of your own. For each time she does a treatment she gets a sticker for that day/time. IF she completed ALL treatments for that week then, treat her to a small reward such as $2 or what ever other reward you want to use. At the same time she will be able to see the sticker chart and how many treatments she didn't or did complete. Hopefully she will make herself proud by seeing all the stickers/treatments she did, as well as receiving a reward for doing so. It could possibly create a sense of motivation.
Just a thought.
Best Wishes
S
Swallowtail66
Guest
I am one of those moms who believes in choice when there is a choice. I will take a 15 minute jump on the tampoline for the occasional clearance, but my main choice was to tie the internet to the vest. Strap on the vest and I insert the password into the internet. Worked like a charm.
hastings35
New member
Hey. Im 15 and I remember when i was 10. I was doing the same thing. Its all about the feeling of control. Having cystic Fibrosis is hard for a kid because every morning and night we have to do our treatments when we would rather be having fun at a sleep over or just enjoying the morning. Don't use the whole forceful technique, it will just make them want to rebel more. We all understand that we should be doing our treatments every morning and night because it is vital to our health but at that age you don't have much control over anything really. So my advice to you is don't be harsh but say to him/her that if she wants to go to a friends house or see a movie later on in the day or just do something fun she must do her treatments in the morning. During the night when she is tired offer to help her with switching over her treatments so she may go to sleep. This is what my mother did when I was younger. Also explain to her/him that she/he may feel fine now and feel like he/she doesn't need to do their treatments because they are in such great condition but if they don't do their treatments they will not be ok in the future.
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sapphirehearts
Guest
I'm so sorry you are going through that. I have my ups and downs with my son who is 17. We simply let him know if he wants to enjoy the life he is currently living then he needs to do these things to keep on track. If he wants to go in the hospital then go ahead and stop what we are doing to keep him healthy. My son has NEVER spent a night in the hospital since the time he has born. We have turned down the tuneups because my son is very healthy and very active and unless his level of breathing or lung capacity goes down and we feel he needs something like that we will not admit him. WE feel too many kids go through what yours is for example once they have been admitted and spent time in a hospital full of germs they tend to have many stays after that. I know not everyone can avoid it but I would in the future if your daughter is active in sports (which are great in keeping lungs strong) and their tests are coming back good and strong. STAY OUT of the hospital. As for her not doing her treatments remind her of her stays and ask her if she wants more. If not sit down and do them. Konner would play video games while he was doing it or pretty much do whatever he wants as long as he does it. When he fights about it we end up winning because we just take all his fun away and he gives in. I wish you luck and all the best. <img src="i/expressions/face-icon-small-smile.gif" border="0">
G
Gorf
Guest
I suggest a trampoline for any age, 10 minutes on that is like running a mile they say for excercise. All I can say is its fun and works if you keep at it.
RegalBeagle
New member
Hi There, I'm a 38 year old male with CF and I still hate doing airway clearance. What I have found to make it better is to set up a "station". I just bought an anti-gravity chair which is great for positioning and comfort. I have my Vest and compressors on a table next to the chair and everything is in front of the Entertainment Center. Comfort and convienence really makes a difference. It's hard to do this stuff every single day, but it's worth the discipline to feel so much better. She's in my prayers <img src="i/expressions/face-icon-small-smile.gif" border="0">
Hi, I am 37 years old and also have CF. When I was a child I hated doing physio, so instead my parents would tickle me (very effective and fun!), get my brother to chase me and run races (also very effective!), blowing up balloons and bouncing on the trampoline. Singing is also a fantastic way to clear the lungs. There are fun alternatives to boring airway clearance techniques!
http://www.cfandhealthy.blogspot.com.au
http://www.cfandhealthy.blogspot.com.au
I feel for the pain you must be going through. I am now 52 but my parents and I still remember the days of my unwillingness to comply with their efforts. IT is tough. Personally I think that create a few different choices and let her choose the method and the time - but one way or the other make her take time to do it. For instance, my mom got me one of the little mini tramps (they sell them on TV and HSN) and she put it in front of the TV. I had to bounce and jump while I watched TV. The choice was mine as to what program I wanted to watch and at what time but I had to do it. With airway vest, put it next to the computer, TV, Phone etc and let her choose what to do and when to do it but either way designate a time spread of when she has to do it (Ex any time between 3 - 5 pm. Give her choices and make it fun. I think that running, laughing, blowing etc are just as effective. I still run 3 miles every day and it began when Mom put me in tap class and gymnastics and swimming - to make sure I was always active and breathing hard because I DID NOT DO MY TREATMENTS_ EVER! I have just published my book about growing up with CF and my now success in business and in health. It is called Dancing in the Storm and it is sold on my site www.shellymaguire.com. All proceeds benefit CFF. IT may help you with insight for the future. Best to you and your family. Hugs,Shelly
My suggestion would be to give her options. Airway clearance is not an option, but the techniques are. Trampolines, flutter valve, jogging; and yes.. "tickle therapy". If you don't have a WII.. get one. The Just Dance games are contagious! She will love doing them and it is something that she can do with her friends or with you, mom. If you can get her into playing a reed instrument, this also helps. CF kids can't always play sports, but they can play music. It will keep her connected with school, and help her physically as well.