very exciting med! that's great that you have been asked to participate. my center does hardly any CF trials so I always miss out on benefitting from these drugs early (if I'm not in the placebo group). let us know how it goes!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
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behavior problems with cf kids
- Thread starter wormsmom
- Start date
very exciting med! that's great that you have been asked to participate. my center does hardly any CF trials so I always miss out on benefitting from these drugs early (if I'm not in the placebo group). let us know how it goes!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0"> <img src="i/expressions/face-icon-small-smile.gif" border="0">
It is exciting but my son really doesn't want to do it. So were trying to talk him into it. I think it's because it's more visits to the clinic and more blood work which he should be used too. It will be a year trial. He'll either be on the new med or placebo for the first 24 weeks, we won't know and the last 24 will be on the treatment med. If he does do it I will let you know. Take care!!
Laurie
Laurie
It is exciting but my son really doesn't want to do it. So were trying to talk him into it. I think it's because it's more visits to the clinic and more blood work which he should be used too. It will be a year trial. He'll either be on the new med or placebo for the first 24 weeks, we won't know and the last 24 will be on the treatment med. If he does do it I will let you know. Take care!!
Laurie
Laurie
It is exciting but my son really doesn't want to do it. So were trying to talk him into it. I think it's because it's more visits to the clinic and more blood work which he should be used too. It will be a year trial. He'll either be on the new med or placebo for the first 24 weeks, we won't know and the last 24 will be on the treatment med. If he does do it I will let you know. Take care!!
Laurie
Laurie
Laurie, it's ok that we don't agree. No hard feelings on my end <img src="i/expressions/face-icon-small-smile.gif" border="0"> I understand as a parent that hearing something like that may seem harsh to you. But it is the truth. And you are right, we are all going to die someday. It's just that most CFers know HOW they are going to die, and that it will be SOONER than most. And some are still being given information that they going to die in their early 20's.... So when life gets tough, or they go through those oh so rebellious teen years, those thoughts come to mind. I personally think that to an extent, it's really normal.
Just don't be alarmed if your son does express those types of feelings someday. It's good you are open about things and willing to talk it through, but that doesn't always alleviate the pain.
Thanks for the well wishes for our family, it's much appreciated! Same to yours.
Just don't be alarmed if your son does express those types of feelings someday. It's good you are open about things and willing to talk it through, but that doesn't always alleviate the pain.
Thanks for the well wishes for our family, it's much appreciated! Same to yours.
Laurie, it's ok that we don't agree. No hard feelings on my end <img src="i/expressions/face-icon-small-smile.gif" border="0"> I understand as a parent that hearing something like that may seem harsh to you. But it is the truth. And you are right, we are all going to die someday. It's just that most CFers know HOW they are going to die, and that it will be SOONER than most. And some are still being given information that they going to die in their early 20's.... So when life gets tough, or they go through those oh so rebellious teen years, those thoughts come to mind. I personally think that to an extent, it's really normal.
Just don't be alarmed if your son does express those types of feelings someday. It's good you are open about things and willing to talk it through, but that doesn't always alleviate the pain.
Thanks for the well wishes for our family, it's much appreciated! Same to yours.
Just don't be alarmed if your son does express those types of feelings someday. It's good you are open about things and willing to talk it through, but that doesn't always alleviate the pain.
Thanks for the well wishes for our family, it's much appreciated! Same to yours.
Laurie, it's ok that we don't agree. No hard feelings on my end <img src="i/expressions/face-icon-small-smile.gif" border="0"> I understand as a parent that hearing something like that may seem harsh to you. But it is the truth. And you are right, we are all going to die someday. It's just that most CFers know HOW they are going to die, and that it will be SOONER than most. And some are still being given information that they going to die in their early 20's.... So when life gets tough, or they go through those oh so rebellious teen years, those thoughts come to mind. I personally think that to an extent, it's really normal.
Just don't be alarmed if your son does express those types of feelings someday. It's good you are open about things and willing to talk it through, but that doesn't always alleviate the pain.
Thanks for the well wishes for our family, it's much appreciated! Same to yours.
Just don't be alarmed if your son does express those types of feelings someday. It's good you are open about things and willing to talk it through, but that doesn't always alleviate the pain.
Thanks for the well wishes for our family, it's much appreciated! Same to yours.
Hi Julie, thanks for the no hard feelings. I understand your last post. Thanks for the well wishes.
I told darin that he would be helping himself and many others that have CF if he participates in the clinical trial. So hopefully we can keep encouraging him. Have a great day everyone!! GO EAGLES!!!!!!!
I told darin that he would be helping himself and many others that have CF if he participates in the clinical trial. So hopefully we can keep encouraging him. Have a great day everyone!! GO EAGLES!!!!!!!
Hi Julie, thanks for the no hard feelings. I understand your last post. Thanks for the well wishes.
I told darin that he would be helping himself and many others that have CF if he participates in the clinical trial. So hopefully we can keep encouraging him. Have a great day everyone!! GO EAGLES!!!!!!!
I told darin that he would be helping himself and many others that have CF if he participates in the clinical trial. So hopefully we can keep encouraging him. Have a great day everyone!! GO EAGLES!!!!!!!
Hi Julie, thanks for the no hard feelings. I understand your last post. Thanks for the well wishes.
I told darin that he would be helping himself and many others that have CF if he participates in the clinical trial. So hopefully we can keep encouraging him. Have a great day everyone!! GO EAGLES!!!!!!!
I told darin that he would be helping himself and many others that have CF if he participates in the clinical trial. So hopefully we can keep encouraging him. Have a great day everyone!! GO EAGLES!!!!!!!
We heard a good analogy once when Emily was much younger that I held onto because I thought it was pretty good.
Everyone knows they are going to die but look at it this way. It's like standing on the train tracks. You could move off the tracks or get hit by the train. A CF patient can't move off the tracks, they know they are going to get hit by that train...they just don't know when!
And as far as having an open relationship goes, that's the best thing you can do with your kids. I have an great relationship with both of my girls. Sometimes I know more than I want to...LOL!
I knew when they were tried booze for the first time, or sex or smoking or whatever because they either told me or we talked about it after.
And to jump back to the death issue...it's also nice to have that as an open topic...Emily has discussed her plans for that with me (and Mike) also. No black at her funeral...rainbow colors only. If anyone shows up wearing black, they are to wear a funny hat provided by our family. It's to be a celebration of her life!!
Everyone knows they are going to die but look at it this way. It's like standing on the train tracks. You could move off the tracks or get hit by the train. A CF patient can't move off the tracks, they know they are going to get hit by that train...they just don't know when!
And as far as having an open relationship goes, that's the best thing you can do with your kids. I have an great relationship with both of my girls. Sometimes I know more than I want to...LOL!
I knew when they were tried booze for the first time, or sex or smoking or whatever because they either told me or we talked about it after.
And to jump back to the death issue...it's also nice to have that as an open topic...Emily has discussed her plans for that with me (and Mike) also. No black at her funeral...rainbow colors only. If anyone shows up wearing black, they are to wear a funny hat provided by our family. It's to be a celebration of her life!!
We heard a good analogy once when Emily was much younger that I held onto because I thought it was pretty good.
Everyone knows they are going to die but look at it this way. It's like standing on the train tracks. You could move off the tracks or get hit by the train. A CF patient can't move off the tracks, they know they are going to get hit by that train...they just don't know when!
And as far as having an open relationship goes, that's the best thing you can do with your kids. I have an great relationship with both of my girls. Sometimes I know more than I want to...LOL!
I knew when they were tried booze for the first time, or sex or smoking or whatever because they either told me or we talked about it after.
And to jump back to the death issue...it's also nice to have that as an open topic...Emily has discussed her plans for that with me (and Mike) also. No black at her funeral...rainbow colors only. If anyone shows up wearing black, they are to wear a funny hat provided by our family. It's to be a celebration of her life!!
Everyone knows they are going to die but look at it this way. It's like standing on the train tracks. You could move off the tracks or get hit by the train. A CF patient can't move off the tracks, they know they are going to get hit by that train...they just don't know when!
And as far as having an open relationship goes, that's the best thing you can do with your kids. I have an great relationship with both of my girls. Sometimes I know more than I want to...LOL!
I knew when they were tried booze for the first time, or sex or smoking or whatever because they either told me or we talked about it after.
And to jump back to the death issue...it's also nice to have that as an open topic...Emily has discussed her plans for that with me (and Mike) also. No black at her funeral...rainbow colors only. If anyone shows up wearing black, they are to wear a funny hat provided by our family. It's to be a celebration of her life!!
We heard a good analogy once when Emily was much younger that I held onto because I thought it was pretty good.
Everyone knows they are going to die but look at it this way. It's like standing on the train tracks. You could move off the tracks or get hit by the train. A CF patient can't move off the tracks, they know they are going to get hit by that train...they just don't know when!
And as far as having an open relationship goes, that's the best thing you can do with your kids. I have an great relationship with both of my girls. Sometimes I know more than I want to...LOL!
I knew when they were tried booze for the first time, or sex or smoking or whatever because they either told me or we talked about it after.
And to jump back to the death issue...it's also nice to have that as an open topic...Emily has discussed her plans for that with me (and Mike) also. No black at her funeral...rainbow colors only. If anyone shows up wearing black, they are to wear a funny hat provided by our family. It's to be a celebration of her life!!
Everyone knows they are going to die but look at it this way. It's like standing on the train tracks. You could move off the tracks or get hit by the train. A CF patient can't move off the tracks, they know they are going to get hit by that train...they just don't know when!
And as far as having an open relationship goes, that's the best thing you can do with your kids. I have an great relationship with both of my girls. Sometimes I know more than I want to...LOL!
I knew when they were tried booze for the first time, or sex or smoking or whatever because they either told me or we talked about it after.
And to jump back to the death issue...it's also nice to have that as an open topic...Emily has discussed her plans for that with me (and Mike) also. No black at her funeral...rainbow colors only. If anyone shows up wearing black, they are to wear a funny hat provided by our family. It's to be a celebration of her life!!
2
2perfectboys
Guest
Barbara,
I agree a lot of CF people have prob thought the hypothetical quote Emily said in her first post. But I am not sure if I agree with your train track thought. Whos to say this train does not get derailed before it gets to u, or some hero stranger comes along and holds u down in between the tracks so that the train just goes over your body, but doesn't kill u. All things are possible in life and there are no guarantees even in a CF death. Sure today most people with CF are probably going to die of it one day, but to think 10 or 20 years ahead is a little hopless in my view. And that is where we as parents have to make are children realize anything is possible in life, if not then as u stated, we should celebrate the life and time we were given.
I agree a lot of CF people have prob thought the hypothetical quote Emily said in her first post. But I am not sure if I agree with your train track thought. Whos to say this train does not get derailed before it gets to u, or some hero stranger comes along and holds u down in between the tracks so that the train just goes over your body, but doesn't kill u. All things are possible in life and there are no guarantees even in a CF death. Sure today most people with CF are probably going to die of it one day, but to think 10 or 20 years ahead is a little hopless in my view. And that is where we as parents have to make are children realize anything is possible in life, if not then as u stated, we should celebrate the life and time we were given.
2
2perfectboys
Guest
Barbara,
I agree a lot of CF people have prob thought the hypothetical quote Emily said in her first post. But I am not sure if I agree with your train track thought. Whos to say this train does not get derailed before it gets to u, or some hero stranger comes along and holds u down in between the tracks so that the train just goes over your body, but doesn't kill u. All things are possible in life and there are no guarantees even in a CF death. Sure today most people with CF are probably going to die of it one day, but to think 10 or 20 years ahead is a little hopless in my view. And that is where we as parents have to make are children realize anything is possible in life, if not then as u stated, we should celebrate the life and time we were given.
I agree a lot of CF people have prob thought the hypothetical quote Emily said in her first post. But I am not sure if I agree with your train track thought. Whos to say this train does not get derailed before it gets to u, or some hero stranger comes along and holds u down in between the tracks so that the train just goes over your body, but doesn't kill u. All things are possible in life and there are no guarantees even in a CF death. Sure today most people with CF are probably going to die of it one day, but to think 10 or 20 years ahead is a little hopless in my view. And that is where we as parents have to make are children realize anything is possible in life, if not then as u stated, we should celebrate the life and time we were given.
2
2perfectboys
Guest
Barbara,
I agree a lot of CF people have prob thought the hypothetical quote Emily said in her first post. But I am not sure if I agree with your train track thought. Whos to say this train does not get derailed before it gets to u, or some hero stranger comes along and holds u down in between the tracks so that the train just goes over your body, but doesn't kill u. All things are possible in life and there are no guarantees even in a CF death. Sure today most people with CF are probably going to die of it one day, but to think 10 or 20 years ahead is a little hopless in my view. And that is where we as parents have to make are children realize anything is possible in life, if not then as u stated, we should celebrate the life and time we were given.
I agree a lot of CF people have prob thought the hypothetical quote Emily said in her first post. But I am not sure if I agree with your train track thought. Whos to say this train does not get derailed before it gets to u, or some hero stranger comes along and holds u down in between the tracks so that the train just goes over your body, but doesn't kill u. All things are possible in life and there are no guarantees even in a CF death. Sure today most people with CF are probably going to die of it one day, but to think 10 or 20 years ahead is a little hopless in my view. And that is where we as parents have to make are children realize anything is possible in life, if not then as u stated, we should celebrate the life and time we were given.