My 7 year old was just diagnosed this past December and we are still trying to get used to all of the medications and treatments. He recently has told us he hates all of it and he does everything he can not to do them. He has been hospitalized twice since February and will be going in for his 4th and 5th surgery this month. We have tried everything to get him to do his treatments (alarms, rewards, special treats, medication charts, different times a day) nothing seems to be helping. Please if anyone has tips or suggestions on how we can make his treatments less of a battle I'd love the help.
My son hates his treatments HELP!!
- Thread starter cenow1982
- Start date
Aboveallislove
Super Moderator
I'm so sorry. I can only imagine how hard this is for you...but even more for him. That is so much for a little one to adjust to. In a way we were luck because our son has never know anything else. One thing I'd strongly recommend is immediately getting the love and logic book on parenting children with chronic health conditions written by Lisa Greene...a mom with two kids with cf. it has great ideas on the conversations to have etc. I've read and retread probably ten time to gird myself every time I get frustrated and slip into demanding and threAts. Good luck.
Do you have the VEST from Hill Rom? If you do you can call them and They have a teddy bear that has it's own VEST; it's very cute...They should send you one. Also, I remember some instructional video from Hill Rom which showed kids doing their vest; my daughter loved watching it for some reason. My daughter has known nothing else besides doing daily treatments; so it's a way of life...Maybe knowing other kids are doing the same thing and seeing it would help him?
J
jcwise62
Guest
I agree with CFParent2. The XBOX and limits to the game only when vesting worked well for my son. My Son was 10 when he was determined to have CF, so the issues in dealing with treatment to someone who has never had them before were daunting. We are lucky, since his presentation has no nutrition/enzyme issues. As a result we only have the vesting, saline, pulmozyme, and a probiotic to offset the side effects of the saline and pulmozyme. That said, we spent a lot of time fighting with the treatments. We went the path of bribery as well and still had almost daily battles. Eventually we went to see a professional therapist. We attended therapy sessions for 2 1/2 years to help my family deal with the information and for my son to learn how to deal with this life changing event. The net result is a happy, healthy 15 year old, who is now just being a 15 year old boy. Hope this helps.
Jeff
Jeff
E
Ekm
Guest
I am 18 and have had problems complying with treatments. When my parents treated me like a child with regard to treatments, I tended to act like a child and resist doing them. I would suggest that you treat treatments as a responsibility for your son to slowly take charge of and give him a feeling of agency. Make it about the treatment and not about the fight with his parents. Since he's very young it might be good to ease into this method and obviously keep trying to get him to do treatments, but act proud when he agrees to do them or thinks of them on his own so he sees it as something he has achieved, not was forced to do.
We've done the video game reward and he still resists it 
he says he is fine not playing the video games. We've tried books and coloring books and skyping with friends. He just sincerely hates it all (so do I). But I know he needs to do it to stay healthy but this twice a day battle is making us all crazy! I will for sure check out the book!! And his vest is a smart vest not from hill, but I think maybe I will try to see if someone I know can "make" a vest for his stuffed animals we try to let him be responsible for hi treatments and he understands that doing them keeps him healthy but he's says he doesn't care if he goes to the hospital again. I am going to keeping trying, hopefully it gets easier soon; thanks for the tips and ideas!!! Keep them coming.
he says he is fine not playing the video games. We've tried books and coloring books and skyping with friends. He just sincerely hates it all (so do I). But I know he needs to do it to stay healthy but this twice a day battle is making us all crazy! I will for sure check out the book!! And his vest is a smart vest not from hill, but I think maybe I will try to see if someone I know can "make" a vest for his stuffed animals we try to let him be responsible for hi treatments and he understands that doing them keeps him healthy but he's says he doesn't care if he goes to the hospital again. I am going to keeping trying, hopefully it gets easier soon; thanks for the tips and ideas!!! Keep them coming.
K
KrakenKrunch
Guest
Yeah treatments aren't fun, I'm 18 and hate doing mine to this day. However, after a while of faking doing them and other stuff to get out of it, I realized that I got sicker and felt worse when I missed some. I guess he just needs to learn he needs them, I was diagnosed at 18 months so I grew up doing them, it may take time before he doesn't mind doing them. I feel so trapped while I'm doing my treatments and bored so maybe figure out a way to keep him entertained
Aboveallislove
Super Moderator
Totally different note but given that he diagnosed so late I'm thinking he might have genes that can benefit from kalydeco? Have you looked in to that at all?
This reminds me that I have several copies of Love and Logic, member Lisa Green's excellent book! PM your address and
i'll mail free copies till they run out!
OK: I'm out...thanks! I sent some from Amazon...so if you get one from Amazon...a gift to you!
http://www.cysticfibrosis.com/KnowCF/
salt and light,
imogene
i'll mail free copies till they run out!
OK: I'm out...thanks! I sent some from Amazon...so if you get one from Amazon...a gift to you!
http://www.cysticfibrosis.com/KnowCF/
salt and light,
imogene
LittleLab4CF
Super Moderator
I'm more familiar with teens mounting a rebellion. Infants to old people act out over life's inequities, we're more aware of it with age. At six, I'm challenged to imagine which inequities or just what is driving his behavior. At six, I am certain I still believed I could will anything a way although it was mostly an illusion. Logically nebulizing or a vest treatment produces phlegm and mucus, maybe to a newly diagnosed six year old. "Here kid, breathe this, it makes you cough" 'why would I want to cough, logically coughing means I'm sick'?
At six, a year is about 20% of that child's life experience, 10% of his most recent life experience, he's had to deal with CF. Even first grade had some breaks, shouldn't CF be over by now? The other odd things are now frequent doctor visits and needle sticks that don't fix anything, and the whole stinking family is acting different. Like I'm five again, Aunts and Uncles are talking to me in baby voices. If one more person asks me how I feel..... His life, and of course you, the parents, will never be the same.
For you, he's been sick and there is a definite release in finally having a diagnosis. A number of late diagnosed (over 14+/-) especially those of us who escaped being raised with the label of CF, realize we escaped what certainly would have been a restrictive childhood. It also hasn't been lost on us the stress we spared our parents.
I have every confidence that all of this will soon resolve to make way for the next adventure. This is where I reinforce what you already know. Stress is unhealthy at the level most CFer's and CF families are constantly at. Parents and kids at least should have a mental health counselor, minister, rabbi or PCP that will help with coping mechanisms and just listening. A psychiatrist or psychologist shoud be part of a CFer's team. Parents who rely heavily on the counsel of each other threaten their relationship. This is overwhelming stuff and a CF parent who isn't overwhelmed is a smart parent who's got a professional friend to talk to. Just a suggestion.
I also agree with the premise of a contributor closer in age. This is the time, if there ever was one to treat your little six year old like an extremely mature six-going-on-ten, adult in training. Don't set up his nebulizer and clock the time, teach him how to do it. Buy him a cool watch and have him program his alarms, well somebody can. Also, these are doctor's orders, take him to the doctor for noncompliance and let the doctor explain why he needs to do this. It just might end being played in the middle. Doctors have orders and patients take them. Be sure he doesn't begin to see the doctor as a policeman or disciplinarian.
The more independent he can be in completing his daily, dailies, the less appearance of anything abnormal or unusual will cut the stress and anxiety for everyone. Many CFer's develop an overblown sense of how they are perceived by peers. This gets really tough when they become tweens and teens.
CF is accelerating his metabolism and that is done through adrenaline mostly. With two surgeries happening, you've got a sick boy who's mind is experiencing the identical reaction an anxiety or panic attack would produce. It is a fair leap for a child to have the discipline to see past what he feels and suppress the fear. My guess is he doesn't have the skills to handle all of this with grace and maturity, I've had 64 years to get good at it and I still can catch myself acting out.
Good luck,
LL
At six, a year is about 20% of that child's life experience, 10% of his most recent life experience, he's had to deal with CF. Even first grade had some breaks, shouldn't CF be over by now? The other odd things are now frequent doctor visits and needle sticks that don't fix anything, and the whole stinking family is acting different. Like I'm five again, Aunts and Uncles are talking to me in baby voices. If one more person asks me how I feel..... His life, and of course you, the parents, will never be the same.
For you, he's been sick and there is a definite release in finally having a diagnosis. A number of late diagnosed (over 14+/-) especially those of us who escaped being raised with the label of CF, realize we escaped what certainly would have been a restrictive childhood. It also hasn't been lost on us the stress we spared our parents.
I have every confidence that all of this will soon resolve to make way for the next adventure. This is where I reinforce what you already know. Stress is unhealthy at the level most CFer's and CF families are constantly at. Parents and kids at least should have a mental health counselor, minister, rabbi or PCP that will help with coping mechanisms and just listening. A psychiatrist or psychologist shoud be part of a CFer's team. Parents who rely heavily on the counsel of each other threaten their relationship. This is overwhelming stuff and a CF parent who isn't overwhelmed is a smart parent who's got a professional friend to talk to. Just a suggestion.
I also agree with the premise of a contributor closer in age. This is the time, if there ever was one to treat your little six year old like an extremely mature six-going-on-ten, adult in training. Don't set up his nebulizer and clock the time, teach him how to do it. Buy him a cool watch and have him program his alarms, well somebody can. Also, these are doctor's orders, take him to the doctor for noncompliance and let the doctor explain why he needs to do this. It just might end being played in the middle. Doctors have orders and patients take them. Be sure he doesn't begin to see the doctor as a policeman or disciplinarian.
The more independent he can be in completing his daily, dailies, the less appearance of anything abnormal or unusual will cut the stress and anxiety for everyone. Many CFer's develop an overblown sense of how they are perceived by peers. This gets really tough when they become tweens and teens.
CF is accelerating his metabolism and that is done through adrenaline mostly. With two surgeries happening, you've got a sick boy who's mind is experiencing the identical reaction an anxiety or panic attack would produce. It is a fair leap for a child to have the discipline to see past what he feels and suppress the fear. My guess is he doesn't have the skills to handle all of this with grace and maturity, I've had 64 years to get good at it and I still can catch myself acting out.
Good luck,
LL
mamaScarlett
Active member
At that age I was pretty compliant, but being dx'd at 2, PT was all I ever knew. I believe its alot harder when you are dx'd later. A whole new life different from what you're used to.
Around 10-11 is when I began not wanting to do PT and trying to avoid meds. By 12 I skipped enzymes at school, wouldn't go to the nurse to do inhalers bc I didn't want to be different, etc. Its definitely a normal part of the process of growing up with Cf, but the problem is it can take a toll on the body.
I feel its really important to let kids talk about how this disease makes them feel. They have a right to be angry, to hate their machine, to feel different. Sometimes just knowing you are free to talk openly can eventually help you to accept it.
And while it may seem harsh, my mother imposed punishment on me if she knew I didn't comply. Cf would be my lot in life and I had to accept it unfortunately. If I skipped or refused a treatment, I couldn't go outside to play for example. Just like if I didn't do my chores or homework there was a consequence. I hated it, yes!! But I feel that that approach really made me responsible, and hardworking in life.
I look at the contrast of others I knew growing up with Cf, and their parents (understandably) felt so bad for their kids, couldn't impose PT on them and just didn't know what to do...and sadly today many of them don't enjoy the quality of life I do today.
Its very hard to be sure and my heart goes out to you. One gift I've learned is in life with Cf, you work hard-then you get to play hard!
Best wishes to you.
Around 10-11 is when I began not wanting to do PT and trying to avoid meds. By 12 I skipped enzymes at school, wouldn't go to the nurse to do inhalers bc I didn't want to be different, etc. Its definitely a normal part of the process of growing up with Cf, but the problem is it can take a toll on the body.
I feel its really important to let kids talk about how this disease makes them feel. They have a right to be angry, to hate their machine, to feel different. Sometimes just knowing you are free to talk openly can eventually help you to accept it.
And while it may seem harsh, my mother imposed punishment on me if she knew I didn't comply. Cf would be my lot in life and I had to accept it unfortunately. If I skipped or refused a treatment, I couldn't go outside to play for example. Just like if I didn't do my chores or homework there was a consequence. I hated it, yes!! But I feel that that approach really made me responsible, and hardworking in life.
I look at the contrast of others I knew growing up with Cf, and their parents (understandably) felt so bad for their kids, couldn't impose PT on them and just didn't know what to do...and sadly today many of them don't enjoy the quality of life I do today.
Its very hard to be sure and my heart goes out to you. One gift I've learned is in life with Cf, you work hard-then you get to play hard!
Best wishes to you.
A
Allansarmy
Guest
I am sure it is harder to be diagnosed a bit later than some. My son is 18 now. We found out at 4 months. But my wife's sister was diagnosed at 10 years old. it was very hard. My son resisted me also. Even going so far as to pour his $4,000 pulmozyme all over his bed room carpet while I spied on him through a crack in the door. Who know how long that went on for. All I can say is hang in there. It will get better. My son now is 18 and we treat him like an adult because he is one now. He calls and makes his appointment at the adult C.F. clinic prepares his tube feedings and breathing treatments. Still resists a bit on the Vest but hey its on him now. He knows if he is not doing what he should then infection arises and then 7-10 days in the hospital he goes. New meds are on the way. This will really help.
Aboveallislove
Super Moderator
Click on Imogene name above and it gives you the option o send a private message I.e. a pm.
My 11 year old step-daughter HATES her treatments too! I am sure I would too! Just hang in there...remember that you are doing it for his own good! How about playing cards with him? UNO, go fish, rummy? Maybe even teach him to play poker and use pennies for bets!! Good Luck, we get frustrated too!
Justinsmama
New member
Hi, my son was diagnosed at 7 and I can completely relate. He was too young to really understand the consequences. He is now 9 1/2 and it can still be a battle (more all the pills). Maybe you could try taking him shopping and choosing a couple of fun things (legos, whatever) and it can be time that he is in charge. My son has an older brother and loves the fact that during vest time he gets to choose EVERYTHING. We watch the same Disney shows, play legos, do whatever he wants. It makes him laugh sometimes to make us do goofy things during his time. Hugs to you, I know how difficult it can be to have all of this thrown at you at that age. Please message me if you ever want to talk.
imported_MaggieB
New member
Hi! I was just remembering a time when I ran away to my room in the middle of nebulizer and therapy. My parents let me sit for a few minutes and then came in and said, "None of us want to do this, but we're going to do it anyway." They were immovable in their conviction that the therapy would help (it did--I'm 40!), and they were a united, immovable force with me.
So many important lessons learned from this method. That my parents were united. That sometimes in this life we have to do things we don't want.
No amount of bribes will give your son a sense of responsibility. Tell him over and over why therapy is important (keeps you out of the hospital, helps you run around more, etc) and be firm. Good luck!!!
So many important lessons learned from this method. That my parents were united. That sometimes in this life we have to do things we don't want.
No amount of bribes will give your son a sense of responsibility. Tell him over and over why therapy is important (keeps you out of the hospital, helps you run around more, etc) and be firm. Good luck!!!