behavior problems with cf kids

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Darinsmom

New member
Hi Julie, I apprecriate your difference of opinion-I was just sharing mine. I know it was in quotes, but I still don't agree-that's my right as it is yours to disagree with me. Were all going to die someday whearther we have CF or not and for me it doesn't get me down. My relationship with my son is a very positive one. Just to let you know! He does know the outcome of CF but we encourage him to be positive and he does have dreams! he knows it's important to take care of himself to have a long life. We have a very open ralationship with him he shares things with us. We always told him to come to us and he does wheather it's about CF or anything. And I'm thankful for that. I don't want him tp keep things in. So no I wouldn't be surprised with anything he would tell me about his CF and being afraid of dying or having dreams because we talked about it when he brings it up. He wants to be a dirt bike rider (professional) a little scary to me but if that's what he wants to do o.k. but that could change. Again thanks for your opinion. Congratulations on your triplets and I wish good health to your husband and all of you!

Laurie
 
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Emily65Roses

New member
My question, Laurie, simply is... what is there to disagree with? I am just sharing a thought that many CFers do have. You can disagree with it, but what are you saying... many CFers don't in fact think that? Because that would be incorrect.
 
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Emily65Roses

New member
My question, Laurie, simply is... what is there to disagree with? I am just sharing a thought that many CFers do have. You can disagree with it, but what are you saying... many CFers don't in fact think that? Because that would be incorrect.
 
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Emily65Roses

New member
My question, Laurie, simply is... what is there to disagree with? I am just sharing a thought that many CFers do have. You can disagree with it, but what are you saying... many CFers don't in fact think that? Because that would be incorrect.
 
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Darinsmom

New member
I'm sure people with CF do think about dying,but like I said we are all going to of something. My son isn't a teenager yet so maybe I'll go through that with him who knows? But I know he doesn't think about that right now. We'll just have to except our diffrent opinions about it.

Laurie
 
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Darinsmom

New member
I'm sure people with CF do think about dying,but like I said we are all going to of something. My son isn't a teenager yet so maybe I'll go through that with him who knows? But I know he doesn't think about that right now. We'll just have to except our diffrent opinions about it.

Laurie
 
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Darinsmom

New member
I'm sure people with CF do think about dying,but like I said we are all going to of something. My son isn't a teenager yet so maybe I'll go through that with him who knows? But I know he doesn't think about that right now. We'll just have to except our diffrent opinions about it.

Laurie
 
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Emily65Roses

New member
I can accept different opinions if I knew what you were talking about. I don't know where you differ. We're talking about teenage attitude problems, and I made a mention of something most CFers think about. Your son may not think of it, but he's not a teenager yet, so he doesn't apply to this situation anyway.

I don't care if you disagree, I just don't get what the hell you're talking about.
 
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Emily65Roses

New member
I can accept different opinions if I knew what you were talking about. I don't know where you differ. We're talking about teenage attitude problems, and I made a mention of something most CFers think about. Your son may not think of it, but he's not a teenager yet, so he doesn't apply to this situation anyway.

I don't care if you disagree, I just don't get what the hell you're talking about.
 
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Emily65Roses

New member
I can accept different opinions if I knew what you were talking about. I don't know where you differ. We're talking about teenage attitude problems, and I made a mention of something most CFers think about. Your son may not think of it, but he's not a teenager yet, so he doesn't apply to this situation anyway.

I don't care if you disagree, I just don't get what the hell you're talking about.
 
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NoExcuses

New member
i haven't read anything on this thread other than the question.

but CFers tend to be bull-headed because you have to have that kind of tenacity with this disease. i've seen, as a general rule and of course there are acceptions, that those with CF that just kind of go with the flo and just accept whatever they're told to do don't have as successful clinical outcomes.

those who research, who question, who are proactive, who are tenacious, and who search to satisfy their hunger for information and to constantly improve their therapies are the healthiest, more often than not.

but these above listed characteristics don't just limit themselves to the relm of CF. proactivity, tenacity, yearning for improvemtn extend themselves in all aspects of life.

talk to the adult CFers who accept whatever their doc tells them to do. that don't ask why the don't own an eFlow. who don't ask why they are prescribed a sub-par HFCC device. who don't understand what their meds are, what they do, how they interact with other meds. who don't treat their allergies with anti-histamines or intranasal steroids even though its obvious that its playing a big role in their health. talk to them. find out what their health status is. then ask the CFers that are on the other side of the spectrum. it's not 100% causation or correlation, but there's a relationship there.

you know what? no one has more at stake with your health than the patient. no one. not the doc. not the parent. so no one has more of an incentive to keep the patient healthy than the patient.

and doctors don't know everything.

i saw my CF doc by myself without parents form the time i was 15. my parents told me to ask a billion questions, understand my meds, what my options were, what the latest research was, etc. if he suggested a treatment i politely dug deeper - asked why, what the research was that backed that up, what alternatives were.

so when my parents told me i had to do something when i was 15-18, guess what i did? asked why. challenged. wanted supporting evidence.

they created a monster.

but in order to do well with CF, you have to develop that state of mind and as a teenager this attitude carries over to other aspects of life.
 
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NoExcuses

New member
i haven't read anything on this thread other than the question.

but CFers tend to be bull-headed because you have to have that kind of tenacity with this disease. i've seen, as a general rule and of course there are acceptions, that those with CF that just kind of go with the flo and just accept whatever they're told to do don't have as successful clinical outcomes.

those who research, who question, who are proactive, who are tenacious, and who search to satisfy their hunger for information and to constantly improve their therapies are the healthiest, more often than not.

but these above listed characteristics don't just limit themselves to the relm of CF. proactivity, tenacity, yearning for improvemtn extend themselves in all aspects of life.

talk to the adult CFers who accept whatever their doc tells them to do. that don't ask why the don't own an eFlow. who don't ask why they are prescribed a sub-par HFCC device. who don't understand what their meds are, what they do, how they interact with other meds. who don't treat their allergies with anti-histamines or intranasal steroids even though its obvious that its playing a big role in their health. talk to them. find out what their health status is. then ask the CFers that are on the other side of the spectrum. it's not 100% causation or correlation, but there's a relationship there.

you know what? no one has more at stake with your health than the patient. no one. not the doc. not the parent. so no one has more of an incentive to keep the patient healthy than the patient.

and doctors don't know everything.

i saw my CF doc by myself without parents form the time i was 15. my parents told me to ask a billion questions, understand my meds, what my options were, what the latest research was, etc. if he suggested a treatment i politely dug deeper - asked why, what the research was that backed that up, what alternatives were.

so when my parents told me i had to do something when i was 15-18, guess what i did? asked why. challenged. wanted supporting evidence.

they created a monster.

but in order to do well with CF, you have to develop that state of mind and as a teenager this attitude carries over to other aspects of life.
 
N

NoExcuses

New member
i haven't read anything on this thread other than the question.

but CFers tend to be bull-headed because you have to have that kind of tenacity with this disease. i've seen, as a general rule and of course there are acceptions, that those with CF that just kind of go with the flo and just accept whatever they're told to do don't have as successful clinical outcomes.

those who research, who question, who are proactive, who are tenacious, and who search to satisfy their hunger for information and to constantly improve their therapies are the healthiest, more often than not.

but these above listed characteristics don't just limit themselves to the relm of CF. proactivity, tenacity, yearning for improvemtn extend themselves in all aspects of life.

talk to the adult CFers who accept whatever their doc tells them to do. that don't ask why the don't own an eFlow. who don't ask why they are prescribed a sub-par HFCC device. who don't understand what their meds are, what they do, how they interact with other meds. who don't treat their allergies with anti-histamines or intranasal steroids even though its obvious that its playing a big role in their health. talk to them. find out what their health status is. then ask the CFers that are on the other side of the spectrum. it's not 100% causation or correlation, but there's a relationship there.

you know what? no one has more at stake with your health than the patient. no one. not the doc. not the parent. so no one has more of an incentive to keep the patient healthy than the patient.

and doctors don't know everything.

i saw my CF doc by myself without parents form the time i was 15. my parents told me to ask a billion questions, understand my meds, what my options were, what the latest research was, etc. if he suggested a treatment i politely dug deeper - asked why, what the research was that backed that up, what alternatives were.

so when my parents told me i had to do something when i was 15-18, guess what i did? asked why. challenged. wanted supporting evidence.

they created a monster.

but in order to do well with CF, you have to develop that state of mind and as a teenager this attitude carries over to other aspects of life.
 
D

Darinsmom

New member
O.K. Emily, I think we talked back and forth enough about this. I did have my husband read over the posts to get his opinion and he agrees with both our point of views. Actually, he understands what you meant in your first posting. This is off topic but did you hear about the new potential drug "Denufosal tetrasodium" or anyone else reading this? My son was asked to participate in the clinical study and was wondering if you or anyone else has a child participating in this? Anyway, take care!

Laurie
 
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Darinsmom

New member
O.K. Emily, I think we talked back and forth enough about this. I did have my husband read over the posts to get his opinion and he agrees with both our point of views. Actually, he understands what you meant in your first posting. This is off topic but did you hear about the new potential drug "Denufosal tetrasodium" or anyone else reading this? My son was asked to participate in the clinical study and was wondering if you or anyone else has a child participating in this? Anyway, take care!

Laurie
 
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Darinsmom

New member
O.K. Emily, I think we talked back and forth enough about this. I did have my husband read over the posts to get his opinion and he agrees with both our point of views. Actually, he understands what you meant in your first posting. This is off topic but did you hear about the new potential drug "Denufosal tetrasodium" or anyone else reading this? My son was asked to participate in the clinical study and was wondering if you or anyone else has a child participating in this? Anyway, take care!

Laurie
 
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NoExcuses

New member
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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