Won't take medactions
- Thread starter Rhondaw
- Start date
Aboveallislove
Super Moderator
I'm so sorry for what you are going through. Our son is 4 so we aren't there yet, but I strongly encourage you to order today Lisa Greene's book Parenting the Child with Chonoric Health Conditions (might be slightly off). It is a wonderful guide on how to handle issues. A couple thoughts based on that are to ask questions: "why don't you do your medicine?" "do you know about the Vertex drugs that will be out early next year?" "Do you know that Kalydeco has allowed some with limited lung damage to stop many treatments?" "How would you feel if you had a drug that could allow you to stop treatments and live a long healthy life, if only you had lungs that weren't scarred?" And my favorite: "Is there anything I can say or any information I can get you to help you decide to do your treatments because I'd hate to see you regret this decision and not know I've done everything I can." The key is to genuinely ask and care about the answer. Not with anger, not with snideness etc. And if your son would like a summary of the drugs and what they have been doing and could do, have him send me a PM and I'll give him alllll the great details of what is right around the corner. Hugs and prayers. Or you could suggest he join facebook group that discusses these drugs (search in facebook for VX770 VX809 Kalydeco). Also search for the blog "one lucky CF mom" to hear about what Kalydeco has done miracle wise for one little boy.
Hugs and prayers,
Love
Hugs and prayers,
Love
G
Gorf
Guest
Hi Rhondaw,
For me this hits home, when I was a sophomore in high school, they made us take our drugs to the office and have to go take them there. That has been years ago, but I don't see it being any better. I was teased horribly from other students, so I stopped taking them. It wasn't until my mother found them in the closet hidden that everything hit the fan so to speak, her first response was to go to school and complain. I begged her not to and promised to take them, which I did on fear she would go to school. In my eyes at that time it would of made it worse. People think bulling is new, its not just more wide spread now(more people live here in the US now). I hope this is not the case, and this is just my experience. If he wants someone to talk to, I would gladly do it. Just message me and I can give phone number or just FB account info to communicate, however you wish. Hope you have a blessed thanksgiving. PS. I went 5 months without taking them.
Chuck
For me this hits home, when I was a sophomore in high school, they made us take our drugs to the office and have to go take them there. That has been years ago, but I don't see it being any better. I was teased horribly from other students, so I stopped taking them. It wasn't until my mother found them in the closet hidden that everything hit the fan so to speak, her first response was to go to school and complain. I begged her not to and promised to take them, which I did on fear she would go to school. In my eyes at that time it would of made it worse. People think bulling is new, its not just more wide spread now(more people live here in the US now). I hope this is not the case, and this is just my experience. If he wants someone to talk to, I would gladly do it. Just message me and I can give phone number or just FB account info to communicate, however you wish. Hope you have a blessed thanksgiving. PS. I went 5 months without taking them.
Chuck
W
Wldhrtd1
Guest
hi...
i'm the mom to a 17 y.o. also.. I feel your pain!! while my son doesn't refuse to take enzyme.. he forgets all the time!! i'm constantly on him reminding him, we both are so annoying!! lOl
both the boys are ddf508 and both have more digestive going on..
I think that when kids refuse to take meds at this age... how can we really make them take them? I think as parents all we can do is encourage and remind them of the consequences of not taking them... good luck!!
i'm the mom to a 17 y.o. also.. I feel your pain!! while my son doesn't refuse to take enzyme.. he forgets all the time!! i'm constantly on him reminding him, we both are so annoying!! lOl
both the boys are ddf508 and both have more digestive going on..
I think that when kids refuse to take meds at this age... how can we really make them take them? I think as parents all we can do is encourage and remind them of the consequences of not taking them... good luck!!
A
Allansarmy
Guest
I will reply from a different point of view and that is from a father of a 17 year old son with the DDF508. He was diagnosed at 4 months. We were blessed you see, our CF doctor now also happened to run a pediatric clinic. My son was a patient and my son's doctor recognized the signs pretty fast. My wife's sister also had CF and my wife could tell you stories much of the same thing you are going through.
This is what I am hearing from forum members, my son, and my sister-n-law before she passed away at age 27. When they are 17, they are much like any other 17 year old. They want to be normal and treated just like any other normal person. They also feel a bit "It will never happen to me" attitude. My mother-n-law if she were here with me writing this could share with you some pretty good stories of my wife's sister taking her medication, literally putting it in her mouth in front of her mother and then spitting them in the trash the moment she turned around, my wife never said a word. They had a bond that only sisters have. I have seen my son get so frustrated with his breathing treatment as he was watching TV I peeked around the corner and watched him pour it out onto the carpet and then continue with the treatment only to finish seconds later. Did it piss me off that he just wasted medication that I have fought with the insurance companies tooth and nail for him to get? The medication that would normally cost $4500 a month but we get buy with a very small copay of $250 a month, Hell yes I was livid!! Went to my wife and she calmed me down before I spoke with him.
Here is the nuts and bolts, you have come to the right place for people that have been there and currently going through the same thing you are. My son did great when he was younger, at age 15-16 it was horrible. We would have bottles and bottles of full enzyme bottles at the house. Bill the poster 'Printer' above me does speak some truth, if he does have some stomach issues he will understand that the medication does indeed help him. The most important thing here is this. Is he still gaining weight? Does he spend a lot of time in the bathroom having bowel movements. At 17, he is not going to offer that information up freely. He is just going through a phase right now. He will hit a point in his life that he will decide, that he "DOES" want to live a long life and that their is a lot to live for in this world. He will want to live to the ripe old age of 73 and beyond like Bill here. (Sorry Bill wasn't calling you old) well kinda... but you do give us hope that our kids with CF can live this long. Heck if he hits 73 I will be 97 lol.
Here is the point of all this rambling, he will be 18 before long. You will even have less say about 'telling him' to take his medication. Stop beating yourself up. Its not your fault that he doesn't do what he is told. Yes, he will feel ramifications if he doesn't do what he is told. He is at that age where you can only encourage him like 'Wldhrtd1 ' said above. Put the enzymes on the counter, write a note under it and just say "I love you, Mom" if he takes them he takes them, if he doesn't he doesn't simple as that. Enzymes are the least of your worries to be honest 'if he is gaining weight'. His lungs are the most important in my opinion. You haven't told us if he needs to take breathing treatments. Does he do them? Or does he just not want too?
Here is my latest tactic and it has worked a bit better. Not 100% never, but at least its better. Some of you are not religious and thats ok. I go to church when I can and I am no saint, but I do pray a lot about my son and other things. I put this in Gods hands. I decided months ago to not utter one single word about my son't medications both enzymes and breathing treatment and his tube feedings he does into his G-button at night. You know what? He is doing them on his own now. I think he just wanted us to stop harping him. HE wanted to make that decision. Also he needed to speak with friends and some of them told him he was looking too thin and he sure was coughing a lot etc. I think that got to him more than me telling him daily every day to do this and that. Sometimes your son may need to hear from other people his own age or advice from others, other than yourself. I know its hard to hear as a parent but it may work.
This is what I am hearing from forum members, my son, and my sister-n-law before she passed away at age 27. When they are 17, they are much like any other 17 year old. They want to be normal and treated just like any other normal person. They also feel a bit "It will never happen to me" attitude. My mother-n-law if she were here with me writing this could share with you some pretty good stories of my wife's sister taking her medication, literally putting it in her mouth in front of her mother and then spitting them in the trash the moment she turned around, my wife never said a word. They had a bond that only sisters have. I have seen my son get so frustrated with his breathing treatment as he was watching TV I peeked around the corner and watched him pour it out onto the carpet and then continue with the treatment only to finish seconds later. Did it piss me off that he just wasted medication that I have fought with the insurance companies tooth and nail for him to get? The medication that would normally cost $4500 a month but we get buy with a very small copay of $250 a month, Hell yes I was livid!! Went to my wife and she calmed me down before I spoke with him.
Here is the nuts and bolts, you have come to the right place for people that have been there and currently going through the same thing you are. My son did great when he was younger, at age 15-16 it was horrible. We would have bottles and bottles of full enzyme bottles at the house. Bill the poster 'Printer' above me does speak some truth, if he does have some stomach issues he will understand that the medication does indeed help him. The most important thing here is this. Is he still gaining weight? Does he spend a lot of time in the bathroom having bowel movements. At 17, he is not going to offer that information up freely. He is just going through a phase right now. He will hit a point in his life that he will decide, that he "DOES" want to live a long life and that their is a lot to live for in this world. He will want to live to the ripe old age of 73 and beyond like Bill here. (Sorry Bill wasn't calling you old) well kinda... but you do give us hope that our kids with CF can live this long. Heck if he hits 73 I will be 97 lol.
Here is the point of all this rambling, he will be 18 before long. You will even have less say about 'telling him' to take his medication. Stop beating yourself up. Its not your fault that he doesn't do what he is told. Yes, he will feel ramifications if he doesn't do what he is told. He is at that age where you can only encourage him like 'Wldhrtd1 ' said above. Put the enzymes on the counter, write a note under it and just say "I love you, Mom" if he takes them he takes them, if he doesn't he doesn't simple as that. Enzymes are the least of your worries to be honest 'if he is gaining weight'. His lungs are the most important in my opinion. You haven't told us if he needs to take breathing treatments. Does he do them? Or does he just not want too?
Here is my latest tactic and it has worked a bit better. Not 100% never, but at least its better. Some of you are not religious and thats ok. I go to church when I can and I am no saint, but I do pray a lot about my son and other things. I put this in Gods hands. I decided months ago to not utter one single word about my son't medications both enzymes and breathing treatment and his tube feedings he does into his G-button at night. You know what? He is doing them on his own now. I think he just wanted us to stop harping him. HE wanted to make that decision. Also he needed to speak with friends and some of them told him he was looking too thin and he sure was coughing a lot etc. I think that got to him more than me telling him daily every day to do this and that. Sometimes your son may need to hear from other people his own age or advice from others, other than yourself. I know its hard to hear as a parent but it may work.
The only reason that we take enzymes is that the pancrease is not producing enough of the enzyme needed to digest protein and fats. The ability of the pancrease to produce, at least in my case, reduces over a period of time, actually years. There was a time that if I went out to dinner and forgot my pills, it was not a big deal. I could easily skip a meal or two. Over time this changed. Now I take ten Creon 24 with every meal and snack and I split them 5 at the beginning of the meal and 5 at the end.
If I miss, I will pay the price as described earlier.
Enzymes are not life saving like lung treatments. Cut him some slack and he will soon stabilize his use of enzymes.
Bill
If I miss, I will pay the price as described earlier.
Enzymes are not life saving like lung treatments. Cut him some slack and he will soon stabilize his use of enzymes.
Bill
I'm 19 and never really went through this stage, but if I had ever refused to take treatments there would have been some sort of punishment/consequences from my parents. It's worth seeing what the underlying cause is, but my parents would have taken away phone/TV/internet privileges if I hadn't cooperated. That may sound harsh but it's not worth potentially damaging his long term health because he's being a teenager. It's your job to keep him healthy as long as he's under your roof.
If he's managed a month without enzymes (is that all that he's taking/skipping?) and hasn't lost a lot of weight/spent a lot of time in the bathroom then his dose may have been too high or perhaps he isn't as insufficient as assumed.
If he's managed a month without enzymes (is that all that he's taking/skipping?) and hasn't lost a lot of weight/spent a lot of time in the bathroom then his dose may have been too high or perhaps he isn't as insufficient as assumed.
TreasureGoddess
Member
Allansarmy & Bill, thanks for the good responses! (and everyone else too). Your replies just spoke to me very well. I've occasionally found soggy pills/vitamins/etc in my son's pockets after they've gone through the washing machine. The first time I blew up at him, guilted him and was crying. Not a very good moment as a mom. The second time I found a vitamin in his pocket (they really do taste horrid) I took a moment and when I was calm, went and talked to my kid. My son is 14 now. We talked about why he takes each pill (he already has this info, but we did go through the whole thing). I told him that even though you don't feel different after missing one dose of something it does add up. We talked about how it's not fun to go through the hospitalizations for GI stuff or lung stuff and how he will still need to be hospitalized occasionally, the pills he takes and treatments he does DO help spread those stays out. I asked him for help in coming up with a plan for how/when to take his meds. I also agreed that if he took one cf vitamin at night he could take a gummy vitamin in the morning before school.
The nebulizers & vest treatments my kid does on his own since he feels better and sees results of this. Occasionally he forgets, but since he's been in charge of doing them, he has WAY better adherence than when I was nagging at him. My son's in charge of his enzymes also. He does forget, but due to embarrassing noises, smells and hurting guts does much better at taking them now too. We're working towards me giving over the responsibility of getting the morning/night packs of pills ready, but for now I still have to remind him.
My son has no control of having this disease. He has really done well with me giving him control over choosing when & how to take his meds & treatments. Some things have to be done, period. He mostly realizes this, and I'm hopeful that the later teen years may be easier if he's more in charge now. (I may be laughing at this naive view in a few years, check back with me then.) I do know our battles and me having to nag all the time have eased a bit with him getting more responsibility.
Good luck!!
The nebulizers & vest treatments my kid does on his own since he feels better and sees results of this. Occasionally he forgets, but since he's been in charge of doing them, he has WAY better adherence than when I was nagging at him. My son's in charge of his enzymes also. He does forget, but due to embarrassing noises, smells and hurting guts does much better at taking them now too. We're working towards me giving over the responsibility of getting the morning/night packs of pills ready, but for now I still have to remind him.
My son has no control of having this disease. He has really done well with me giving him control over choosing when & how to take his meds & treatments. Some things have to be done, period. He mostly realizes this, and I'm hopeful that the later teen years may be easier if he's more in charge now. (I may be laughing at this naive view in a few years, check back with me then.) I do know our battles and me having to nag all the time have eased a bit with him getting more responsibility.
Good luck!!
Hello
Thanks for all who responded glad to know i'm not alone, And for those who asked yes he has Treatments and no he don't take them either he also has been known to pour them out, he also has [FONT=helvetica neue, helvetica, arial, sans-serif] [/FONT]Diabetes and won't take those meds either, But maybe you are right and he will learn in time i just pray it won't be too late! He also had a feeding tube until this last yr and they removed it so i guess that is good but if he keeps losings weight they may end up putting it back in! Thanks again to all.
Thanks for all who responded glad to know i'm not alone, And for those who asked yes he has Treatments and no he don't take them either he also has been known to pour them out, he also has [FONT=helvetica neue, helvetica, arial, sans-serif] [/FONT]Diabetes and won't take those meds either, But maybe you are right and he will learn in time i just pray it won't be too late! He also had a feeding tube until this last yr and they removed it so i guess that is good but if he keeps losings weight they may end up putting it back in! Thanks again to all.
I'm with Bill on this one. If he's not taking them and not having bad gas and diarrhea then he probably doesn't need them.
When I was really little I didn't take my enzymes regularly and was bloated, farted, had stinky poop, and diarrhea. It wasn't until I was in my teens when I started to care more about what people thought of me that I started to take my enzymes more regularly. More importantly it was when I started dating because I was too worried I would have bad gas, be bloated, or need to poop on a date or in the middle of making out, etc. Being a girl farting while making out or doing other sexual things would be mortifying and I'm sure it would be for a guy as well. I would think at his age he would be dating and would be overly concerned with others opinions and would flip out if he did something embarrassing like fart in class, fart on a date, etc. If he isn't having these problems as a result of not taking his enzymes then maybe he doesn't need them! And if that's the case I would have his doctor look into it.
Good luck!
When I was really little I didn't take my enzymes regularly and was bloated, farted, had stinky poop, and diarrhea. It wasn't until I was in my teens when I started to care more about what people thought of me that I started to take my enzymes more regularly. More importantly it was when I started dating because I was too worried I would have bad gas, be bloated, or need to poop on a date or in the middle of making out, etc. Being a girl farting while making out or doing other sexual things would be mortifying and I'm sure it would be for a guy as well. I would think at his age he would be dating and would be overly concerned with others opinions and would flip out if he did something embarrassing like fart in class, fart on a date, etc. If he isn't having these problems as a result of not taking his enzymes then maybe he doesn't need them! And if that's the case I would have his doctor look into it.
Good luck!
B
billiewoolley
Guest
I'm a 19 y/o with CF, diagnosed at 3 months old, and I know exactly what your saying because I also don't take my medications, and 'specially not my enzymes until I met my boyfriend, and I now infact take them with alot of things I eat now because of my boyfriend really lol.
Maybe when he has a partner, he might act how I acted and you'll notice a difference. But it took me years upon years to start taking my antibiotics/enzymes/nebilisers and physios to actually start taking them because I'll become severely ill. I know it'll take time, but he will understand and realise hopefully soon, if not, he will eventually.
Maybe when he has a partner, he might act how I acted and you'll notice a difference. But it took me years upon years to start taking my antibiotics/enzymes/nebilisers and physios to actually start taking them because I'll become severely ill. I know it'll take time, but he will understand and realise hopefully soon, if not, he will eventually.
Does he have allot of infections or hospitalizAtions. What he does today may not effect him untill he is older, I would have a dr talk to him about antibiotic resistant bacteria, does he ever take even one dose of his antibiotics?slipping medication and treatments will only get him closer to end stage cf quicker, my son has end stage cf is 23 and now laying on ICU intubated and desperately waiting for a transplant, he has 3 days to receive one :,( I think you need to have a serious talk about drug resistant bacteria and end stage cf that is how it happens, and once it happens it can never go away.
From a cf mom sitting in ICU watching over her son . God bless and I ll
Pray for you
From a cf mom sitting in ICU watching over her son . God bless and I ll
Pray for you
juliefaler
New member
RobbieKay:
My heart is with you. Last year this time I was were you are now. I will be praying your son gets his miracle.
My heart is with you. Last year this time I was were you are now. I will be praying your son gets his miracle.
Everyone with CF goes through these stages, I would go on and off my meds for months at a time when i was in my teen's. I think I was in my mid 20's when I realized I better change my ways or I won't be around to long. I do attribute part of this due to the fact that my whole life I was told by the Dr's I would not live past 18.
I now its frustrating for you, my mom would give me hell and get on my ass all the time about taking them. What I do suggest to parents with younger chidlren with CF that go through this, is to make it a game, and reward them for taking it, and do not punish when they refuse to take. For me anyway, the more I was scolded, the more I DID NOT want to take my meds. If he wants to talk to somone about exactly what he is going through, I am willing to chat with him and tell him my expierence and the importance of taking care of his health now, rather then later.