I am the mother of a 13yr boy wcf. He is overall a pretty laid back type of kid, involved in quite a bit of sports and even plays trumpet in band. The problem is his meds. Am I expecting too much from him to not have to remind him to take his urso, advair, vitamins, enzymes and aerosals? He knows the basic effects of this disease on his body but I guess I've sheltered him from everything. He talks about when he has kids etc... Is he too young to know the facts overall about this disease or have I already fallen behind in not telling him. I just try so hard to spare his feelings, I know how I feel about this and if he feels even half the way i do it is too much heartache. I am blessed that he has been pretty healthy after we made it passed his first three years of life. He was diagnosed at 3mths. I keep telling him just because he feels good now that there is a reason, maybe cause i wear myself out constantly staying on him about taking his meds. Now i'm just rambling on I guess i just want to hear that at some time most people go through this and that maybe he'll get responsible one day.
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Need Advice
- Thread starter anonymous
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Hello ,
It's not asking to much, But you 've go to remeber he's a teen. My parents constantly had to tell me to take my meds and do my treatements.
It's a teen thing, Selective memory. I'm 40 now and doing ok. You hang in there and keep telling him. It's ok
Hello ,
It's not asking to much, But you 've go to remeber he's a teen. My parents constantly had to tell me to take my meds and do my treatements.
It's a teen thing, Selective memory. I'm 40 now and doing ok. You hang in there and keep telling him. It's ok
AbsintheSorrow
New member
Trust me on this one when I tell you to FILL HIM IN NOW!!!! Right this minute. If the kid finds out from someone other than you, he's going to be pissed. At this point, at 13, he'll probably be pissed anyway that you didn't already tell him, but I would STRONGLY advise you to tell him right now. If he hears it from someone else, it could be in a much less compassionate manner, and it will be likely to suck a lot more. I've known all the facts since before I can remember. I don't even remember being told. I don't want to be rude, or seem harsh, but for the love of all that's spiffy and nifty, TELL HIM RIGHT NOW!!!!!!!!!
It's affecting his body, not yours, and he has a right to know everything that's involved.
It's affecting his body, not yours, and he has a right to know everything that's involved.
Well, that's a question I have in mind. What to say and when ?
My C/F daugher is pretty yound (18 months) but we have decided, since the very first day (she was diagnosed at 1 month old) to explain everything. The physiotherapist will come for that reason, you need to take your medicines otherwise etc etc.
This is basic, but for the future, that's rather different, as questions will be much different.
I think we will keep on saying, explaining, everything related to C/F, based on her questions, trying to be clear, using words or images she will understand.
Good luck.
My C/F daugher is pretty yound (18 months) but we have decided, since the very first day (she was diagnosed at 1 month old) to explain everything. The physiotherapist will come for that reason, you need to take your medicines otherwise etc etc.
This is basic, but for the future, that's rather different, as questions will be much different.
I think we will keep on saying, explaining, everything related to C/F, based on her questions, trying to be clear, using words or images she will understand.
Good luck.
I was diagnosed at 18 months, and to be honest I don't remember ever not knowing what I had or what it meant. I am aware of someone who didn't receive an explination of their disease until they were a teen and they still have a bad relationship (20+ years later) with their parents. As sad as it might be that your child has the disease and as much as you want to help and protect them, not telling them all they need to know is not good. I can't imagine having CF, having taken meds for years and never knowing really what the purpose or the outcome of these meds are.
There is no easy way to do it, but starting early makes a big difference.
To the inital poster, saying your son doesn't know about reproductive issues, is a touchy one - but just because there are problems procreating naturally doesn't mean it isn't possible. No matter how this info is relayed to him it will be like a punch in the gut. I had someone make a comment about CF women having babies and can't see how it is possible, and it was like the wind was pulled out of me, I can conceive, but can I carry or take care of my child. All my life I have dreamed of being a mother, words can hurt as bad as a physical hurt. Good luck, you will find the words and truth, just have faith and believe.
There is no easy way to do it, but starting early makes a big difference.
To the inital poster, saying your son doesn't know about reproductive issues, is a touchy one - but just because there are problems procreating naturally doesn't mean it isn't possible. No matter how this info is relayed to him it will be like a punch in the gut. I had someone make a comment about CF women having babies and can't see how it is possible, and it was like the wind was pulled out of me, I can conceive, but can I carry or take care of my child. All my life I have dreamed of being a mother, words can hurt as bad as a physical hurt. Good luck, you will find the words and truth, just have faith and believe.
I
IG
Guest
Wow, I am amazed at your post. "Is he too young to know the facts overall about this disease or have I already fallen behind in not telling him" When I was thirteen I was told that if I wasn't listed for a transplant I'd die before my 18th birthday. 13 is never to young to know. I agree with Emily. It's affecting his body, not yours, and he has a right to know everything that's involved. And like they've said he's going to be shocked and angry. As for the meds and stuff. I'd have to say the best thing you can do is sit down with him and explain everything about this disease. If not you, take him to your CF doctor and have them explain how this disease happens, what it does to the body, and why it happens. Make this disease seem serious, which it is. Once he gets that idea I would hope that he takes more responsibility in his medications. " I just try so hard to spare his feelings, I know how I feel about this and if he feels even half the way i do it is too much heartache" It is heartache, it is Cystic Fibrosis. It's not going to go away no matter how much you try to hide it from him. When he knows, that will take the burden off of your shoulders and he will help you carry it. Knowledge is a very powerful thing. While not telling him he can't have children, he is believing that he can have children naturally. Now that may happen, you never know, but if he does know about the CF then maybe you guys can sit down together and say hey this is what I need to do if I can't have children the natural way. Eventually like Emily's said he will find out. Either from you or from somebody else, it is up to you.
candice I thank you for your input but didn't appreciate the belittling you were trying to do. I am very informed about Cf and know it's not going to go away. Maybe I didn't make myself clear about how much my son doesn't know. He does know everything about what the disease does to his body. The one thing is only the reproductive issue .
AbsintheSorrow
New member
I don't think she was trying to belittle you. You have to understand (and I'm speaking from my own POV, assuming it's similar to Candice's) that the idea of hiding ANY PIECE of the CF from the victim him/herself is appalling to us. Reproductive issues or not, he should've known before now, because as Candice said, he's been thinking this whole time that he'll be able to have children naturally. And whether or not you've been trying to, you've been leading him on that he can... by not telling him that he can't. I'm sure she was not meaning to insult. It's just very surprising to us and the idea of hiding anything doesn't tend to sit well.
PS-- Candice, if I have spoken out of turn at all here, feel free to say so. Haha. <img src="i/expressions/rose.gif" border="0">
PS-- Candice, if I have spoken out of turn at all here, feel free to say so. Haha. <img src="i/expressions/rose.gif" border="0">
Well Emily I think you really need to know the whole sitiuation before you start being appalled about the way people handle things in their life. You don't even know the maturity level of my 13yr old as you well know kids mature at various times in their life and just because they have cf doesn't always make them grow up faster. Granted I realize that their are 13yr olds that have been through more than me in their very young lives. My 5yr old nephew wcf was just diagnosed with cirrhosis has already had several operations and looking toward more so you see he has been through more than my blessed 13 yr old. I came on this site to just get some input not criticism. Be as you may and talk out of line if you want.Thanks to the others who stuck to the specific topic.
AbsintheSorrow
New member
I was not talking out of line. And maturity or not, it's his body, not yours. Need I say again, that he could always find out online, or through some trash-talking child, instead of his own mother? I think it's pretty easy to see which of these is a better way to do it. And you asked whether or not it was already late. My opinion, is that, yes is already is late. I was putting in my two cents, just like you asked for. And I stick by what I said, entirely.
S
sleepwalk
Guest
I don't think you did any disservice to your child by not addressing this issue just yet... why borrow trouble? I know that things are much different now than when I was 13.. however, I don't recall being consumed by a desire to have a family and children of my own, and sincerely doubt that your son is either. Is it his body? yes of course... is it up to you to answer his questions? yes, when he ASKS them. Until then, there is really no point in telling him what he can and can't do at his young age-as far as he's concerned, he is still able to do it all <img src="i/expressions/face-icon-small-happy.gif" border="0"> Just my two cents...
redeemedchild
New member
<FONT face="Comic Sans MS" color=#0000ff>did I miss something here?Has your doc told you for sure that your son cannot reproduce?I only ask be cause my brother is 35 and was diagnosed only a few months ago...He has 2 of the most beautiful little boys<img src="i/expressions/heart.gif" border="0"></FONT>
Good point. While he is <b>probably</b> sterile, they don't know for sure that he is so telling him that he is could be a disservice to him just as well as not telling him. Just my opinion, when the opportunity arises, I'd just casually say most cf males cannot have their own biological children but a few can and he'll need to be tested when he's older. And, of course, remind him that there are <b>many</b> ways to become a parent...
I tend to agree with Emily - this is something he should already know about. If he's old enough to be talking about having kids, he should be old enough to know about the problems he has a better than 98% chance of having. It's far better to know (and get tested) as soon as possible than be absolutely crushed by finding out later. My CF-boyfriend decide to get tested until he was 26 - and it sucked to find out that late that the "possible sterility" was not so 'possible' after all (and it wasn't exactly easy on me either - oh how I hoped he would be one of those 2%). Let him know that technology has progressed to the point where sterile doesn't necessarily mean "can't have kids" - it means "can't have kids the normal way"
Also - about med habits... Ask him how he feels if he forgets to take them (especially the enzymes). Remind him of the consequences of not taking them (other than getting ragged on by other people) and he might be more likely to remember.
Also - about med habits... Ask him how he feels if he forgets to take them (especially the enzymes). Remind him of the consequences of not taking them (other than getting ragged on by other people) and he might be more likely to remember.
My son is six and also has CF. My husband and I have contemplated this same issue many times. So far, we have not discussed ALL the details of CF, although there are many families at our clinic who have and did discuss CF with their children at a very early age. I worry about how he will learn all the details. Part of me thinks that a child is too young to learn and understand the concepts of a "life treatening disease." However, how young is too young and how old is too old. I would like to have a calm mature discussion with my son when he is ready. I worry about someone saying something to him about CF before I get a chance. I want to give my son hope for a long, healthy life. But I don't want to lie to him or hurt our relationship. What do all of you think - when is a good age...?
Katrina, mother of Sean (6 w/CF), Carolyn (5 w/o CF), and Allison (3 w/o CF)
Katrina, mother of Sean (6 w/CF), Carolyn (5 w/o CF), and Allison (3 w/o CF)
I
IG
Guest
Wow, I start college and don't look at the boards for a couple of days and look at what happens. Geeze, I post on here that I'm amazed, because when I was thirteen I was so informed I knew more than most residents. Now in this post I never took a negative attitude, how you picked that up I don't know. I wasn't belittling you or your situation, granted I don't know what you are going through, and you don't know what I'm going through so we are on different side of the fence. What I am saying is that eventually he'll get curious. He's thirteen that's going to happen. Now what I am saying is that he will find out eventually, would you rather he find out from the books or from you. That's what I'm saying. Now he might be well informed but obviously he doesn't know everything, i.e. the reproductive issues. Now you come on this board and ask for advice, I gave you my opinion, how you take it is up to you, now if I wanted to belittle you I'd say something like "That's Stupid" I didn't! I simply said sit down and talk to him, because the sooner you do the sooner you can find a solution to the problem. Now if your going to say I don't appreciate the advice, why post the question on the boards if you don't like what you hear? For whatever it's worth I agree with Emily whole-heartedly. She has some good advice, and right now I don't know why most of us continue to post on these boards, it seems like most of the time we are told that our opinions suck.
-Disatisfied w/board Candice
-Disatisfied w/board Candice