tune ups??

[catboogie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdprecious</b></i>

Thanks LouLou... most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers. No one is perfect and I am trying to get it all right on my own since I dont have any help. So I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.</end quote></div>

two things: first, (and i'm not saying this to be mean at all, just practical) maybe you should consider posting in the Families section. it is the place where a lot of parents go to talk about dealing with their kids and cf. they would probably be a much more understanding audience for the questions you are having.

secondly, i can see how it might feel like 'jerks are berating you,' but really, you have to consider who these people are. we have had many years with this disease (most of us) and to us the idea of IVs being something to avoid is just insane. (those of us who have tried living this hypothesis have often had very bad results.) it is a part of our lives and it makes our quality of life a lot better. also, although people may seem mean, they really only want what is best for your daughter, just like you! they are only concerned that your not wanting to be aggressive could have potential harm for your daughter. that may come off as sounding harsh, but really, i think, their hearts are mostly in the right place.

good luck.

 

[catboogie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdprecious</b></i>

Thanks LouLou... most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers. No one is perfect and I am trying to get it all right on my own since I dont have any help. So I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.</end quote></div>

two things: first, (and i'm not saying this to be mean at all, just practical) maybe you should consider posting in the Families section. it is the place where a lot of parents go to talk about dealing with their kids and cf. they would probably be a much more understanding audience for the questions you are having.

secondly, i can see how it might feel like 'jerks are berating you,' but really, you have to consider who these people are. we have had many years with this disease (most of us) and to us the idea of IVs being something to avoid is just insane. (those of us who have tried living this hypothesis have often had very bad results.) it is a part of our lives and it makes our quality of life a lot better. also, although people may seem mean, they really only want what is best for your daughter, just like you! they are only concerned that your not wanting to be aggressive could have potential harm for your daughter. that may come off as sounding harsh, but really, i think, their hearts are mostly in the right place.

good luck.

 

[catboogie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdprecious</b></i>

Thanks LouLou... most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers. No one is perfect and I am trying to get it all right on my own since I dont have any help. So I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.</end quote></div>

two things: first, (and i'm not saying this to be mean at all, just practical) maybe you should consider posting in the Families section. it is the place where a lot of parents go to talk about dealing with their kids and cf. they would probably be a much more understanding audience for the questions you are having.

secondly, i can see how it might feel like 'jerks are berating you,' but really, you have to consider who these people are. we have had many years with this disease (most of us) and to us the idea of IVs being something to avoid is just insane. (those of us who have tried living this hypothesis have often had very bad results.) it is a part of our lives and it makes our quality of life a lot better. also, although people may seem mean, they really only want what is best for your daughter, just like you! they are only concerned that your not wanting to be aggressive could have potential harm for your daughter. that may come off as sounding harsh, but really, i think, their hearts are mostly in the right place.

good luck.

 

[catboogie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdprecious</b></i>

Thanks LouLou... most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers. No one is perfect and I am trying to get it all right on my own since I dont have any help. So I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.</end quote></div>

two things: first, (and i'm not saying this to be mean at all, just practical) maybe you should consider posting in the Families section. it is the place where a lot of parents go to talk about dealing with their kids and cf. they would probably be a much more understanding audience for the questions you are having.

secondly, i can see how it might feel like 'jerks are berating you,' but really, you have to consider who these people are. we have had many years with this disease (most of us) and to us the idea of IVs being something to avoid is just insane. (those of us who have tried living this hypothesis have often had very bad results.) it is a part of our lives and it makes our quality of life a lot better. also, although people may seem mean, they really only want what is best for your daughter, just like you! they are only concerned that your not wanting to be aggressive could have potential harm for your daughter. that may come off as sounding harsh, but really, i think, their hearts are mostly in the right place.

good luck.

 

[catboogie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdprecious</b></i>

Thanks LouLou... most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers. No one is perfect and I am trying to get it all right on my own since I dont have any help. So I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.</end quote>

two things: first, (and i'm not saying this to be mean at all, just practical) maybe you should consider posting in the Families section. it is the place where a lot of parents go to talk about dealing with their kids and cf. they would probably be a much more understanding audience for the questions you are having.

secondly, i can see how it might feel like 'jerks are berating you,' but really, you have to consider who these people are. we have had many years with this disease (most of us) and to us the idea of IVs being something to avoid is just insane. (those of us who have tried living this hypothesis have often had very bad results.) it is a part of our lives and it makes our quality of life a lot better. also, although people may seem mean, they really only want what is best for your daughter, just like you! they are only concerned that your not wanting to be aggressive could have potential harm for your daughter. that may come off as sounding harsh, but really, i think, their hearts are mostly in the right place.

good luck.

 

[catboogie]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>jdprecious</b></i>

Thanks LouLou... most here are ready to attack me and tell me everything i am doing wrong. I dont care I am here to ask questions and get answers. No one is perfect and I am trying to get it all right on my own since I dont have any help. So I look at it like this, I get so much more positive information and I will take that with the jerks that berate me and belittle me for their own sanctified enjoyment. All I care about is doing the right thing for my kiddo and nobody here knows how to do that better than me. So, I graciously thank you and the others that have pm'd me the kind words amidst the one track minded bashers.</end quote>

two things: first, (and i'm not saying this to be mean at all, just practical) maybe you should consider posting in the Families section. it is the place where a lot of parents go to talk about dealing with their kids and cf. they would probably be a much more understanding audience for the questions you are having.

secondly, i can see how it might feel like 'jerks are berating you,' but really, you have to consider who these people are. we have had many years with this disease (most of us) and to us the idea of IVs being something to avoid is just insane. (those of us who have tried living this hypothesis have often had very bad results.) it is a part of our lives and it makes our quality of life a lot better. also, although people may seem mean, they really only want what is best for your daughter, just like you! they are only concerned that your not wanting to be aggressive could have potential harm for your daughter. that may come off as sounding harsh, but really, i think, their hearts are mostly in the right place.

good luck.

 

[jdprecious]

it was my understanding that "tune ups" were for cf'ers that were sick or had infections
i have met cf'ers in their twenties that have never had tune ups. and i hope jaelyn can be that lucky.
more or less i thought it was a rare thing, guess not.

but being on this board, whether replies are nice or not, have helped me deal/cope/come to terms whatever with what we have to do... ill just have lots of xanax when we go our first time!!! hhahahahahaha<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[jdprecious]

it was my understanding that "tune ups" were for cf'ers that were sick or had infections
i have met cf'ers in their twenties that have never had tune ups. and i hope jaelyn can be that lucky.
more or less i thought it was a rare thing, guess not.

but being on this board, whether replies are nice or not, have helped me deal/cope/come to terms whatever with what we have to do... ill just have lots of xanax when we go our first time!!! hhahahahahaha<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[jdprecious]

it was my understanding that "tune ups" were for cf'ers that were sick or had infections
i have met cf'ers in their twenties that have never had tune ups. and i hope jaelyn can be that lucky.
more or less i thought it was a rare thing, guess not.

but being on this board, whether replies are nice or not, have helped me deal/cope/come to terms whatever with what we have to do... ill just have lots of xanax when we go our first time!!! hhahahahahaha<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[jdprecious]

it was my understanding that "tune ups" were for cf'ers that were sick or had infections
i have met cf'ers in their twenties that have never had tune ups. and i hope jaelyn can be that lucky.
more or less i thought it was a rare thing, guess not.

but being on this board, whether replies are nice or not, have helped me deal/cope/come to terms whatever with what we have to do... ill just have lots of xanax when we go our first time!!! hhahahahahaha<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[jdprecious]

it was my understanding that "tune ups" were for cf'ers that were sick or had infections
i have met cf'ers in their twenties that have never had tune ups. and i hope jaelyn can be that lucky.
more or less i thought it was a rare thing, guess not.

but being on this board, whether replies are nice or not, have helped me deal/cope/come to terms whatever with what we have to do... ill just have lots of xanax when we go our first time!!! hhahahahahaha<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[jdprecious]

it was my understanding that "tune ups" were for cf'ers that were sick or had infections
i have met cf'ers in their twenties that have never had tune ups. and i hope jaelyn can be that lucky.
more or less i thought it was a rare thing, guess not.

but being on this board, whether replies are nice or not, have helped me deal/cope/come to terms whatever with what we have to do... ill just have lots of xanax when we go our first time!!! hhahahahahaha<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[NoExcuses]

understand that IV's aren't the sign of health - lung function is.

I know plenty of CFers in their 20s who have never had IV's either - and their FEV1s (not all) are in their 80s and 70s.

What's the point? Those people should have been on IV's on their way down from 100 to 90 to 80. What a loss of a great opportunity to preserve lung function!

 

[NoExcuses]

understand that IV's aren't the sign of health - lung function is.

I know plenty of CFers in their 20s who have never had IV's either - and their FEV1s (not all) are in their 80s and 70s.

What's the point? Those people should have been on IV's on their way down from 100 to 90 to 80. What a loss of a great opportunity to preserve lung function!

 

[NoExcuses]

understand that IV's aren't the sign of health - lung function is.

I know plenty of CFers in their 20s who have never had IV's either - and their FEV1s (not all) are in their 80s and 70s.

What's the point? Those people should have been on IV's on their way down from 100 to 90 to 80. What a loss of a great opportunity to preserve lung function!

 

[NoExcuses]

understand that IV's aren't the sign of health - lung function is.

I know plenty of CFers in their 20s who have never had IV's either - and their FEV1s (not all) are in their 80s and 70s.

What's the point? Those people should have been on IV's on their way down from 100 to 90 to 80. What a loss of a great opportunity to preserve lung function!

 

[NoExcuses]

understand that IV's aren't the sign of health - lung function is.

I know plenty of CFers in their 20s who have never had IV's either - and their FEV1s (not all) are in their 80s and 70s.

What's the point? Those people should have been on IV's on their way down from 100 to 90 to 80. What a loss of a great opportunity to preserve lung function!

 

[NoExcuses]

understand that IV's aren't the sign of health - lung function is.

I know plenty of CFers in their 20s who have never had IV's either - and their FEV1s (not all) are in their 80s and 70s.

What's the point? Those people should have been on IV's on their way down from 100 to 90 to 80. What a loss of a great opportunity to preserve lung function!

 

[mom2lillian]

Jessica

It really is not a 'hold off on IV's as long as possible' to keep her healthy scenario. Yes some individuals might not go on IV's but have you ever looked at their PFT's?

Mine were 105% at my last appointment this does not mean that I dont need treatments yet, I have IV's 1-2x a year to keep it this way. You are still thinking that treatments = bad, I believe. You have to think that treatments are what are going to prologn her life and keep her healhty. I am sorry to say but you cannot never get a tune up this is unrealistic.

As long as you are diligent with making sure proper germ control is followed the + definately outweight negatives. Some centers will allow you to be admitted for a few days and do the rest at home but if they know of your poor compliance history (they knwo more than they let on usually) then they may not allow you to do this at lesat the first time.

It does not matter what her PFT's are or how much she weighs if her baseline cough changes dramatically then she needs treatements even if the cultures arent 'revealing' whats going on.
If she has not had a mucousy cough previously then this is 100% a good reason to go in for a tune up where they can do aggressive physio, abx etc. If this doesnt work then great it is her normal cough --her 'new' normal cough since you previously reported that she doesnt have one. You have to remember that they dont alwyas get a good culture on kids her age without doing a bronch so they have to go based on 'clues' and the cough is a big one.

Until you have done ALOT of research and have ALOT of experience with the disease I recommend you follow your doctors orders or go with the most conservative approach (which is theirs in this case). I am not afraid to go head to head with my docs but htis is after extensive thinking and reserach and over my own body so if I wnat to take a risk it is my choice and I can tell how things are going in my body often better than they can, your daughter cant do this yet.

I also wanted to mention that I am sure seeing your darling go into the hospital is goign to be a huge smack in the face for you since it sounds like you have never, or just begun to recently deal with her diagnosis. I am also sure it will be compounded by the fact that she is now sick after you and your husband went most of a year doign only 1/2 treatments. This, in additon to having a new baby, is alot so you might want to consider speaking with a couselor or the social worker in the clinic to confront all of these issues. I think once you have truly accepted your daughters disease this will be alot easier on you and her (I know you have started last month or so but noone can aceept this fate for themselves or their loved ones so quickly).

 

[mom2lillian]

Jessica

It really is not a 'hold off on IV's as long as possible' to keep her healthy scenario. Yes some individuals might not go on IV's but have you ever looked at their PFT's?

Mine were 105% at my last appointment this does not mean that I dont need treatments yet, I have IV's 1-2x a year to keep it this way. You are still thinking that treatments = bad, I believe. You have to think that treatments are what are going to prologn her life and keep her healhty. I am sorry to say but you cannot never get a tune up this is unrealistic.

As long as you are diligent with making sure proper germ control is followed the + definately outweight negatives. Some centers will allow you to be admitted for a few days and do the rest at home but if they know of your poor compliance history (they knwo more than they let on usually) then they may not allow you to do this at lesat the first time.

It does not matter what her PFT's are or how much she weighs if her baseline cough changes dramatically then she needs treatements even if the cultures arent 'revealing' whats going on.
If she has not had a mucousy cough previously then this is 100% a good reason to go in for a tune up where they can do aggressive physio, abx etc. If this doesnt work then great it is her normal cough --her 'new' normal cough since you previously reported that she doesnt have one. You have to remember that they dont alwyas get a good culture on kids her age without doing a bronch so they have to go based on 'clues' and the cough is a big one.

Until you have done ALOT of research and have ALOT of experience with the disease I recommend you follow your doctors orders or go with the most conservative approach (which is theirs in this case). I am not afraid to go head to head with my docs but htis is after extensive thinking and reserach and over my own body so if I wnat to take a risk it is my choice and I can tell how things are going in my body often better than they can, your daughter cant do this yet.

I also wanted to mention that I am sure seeing your darling go into the hospital is goign to be a huge smack in the face for you since it sounds like you have never, or just begun to recently deal with her diagnosis. I am also sure it will be compounded by the fact that she is now sick after you and your husband went most of a year doign only 1/2 treatments. This, in additon to having a new baby, is alot so you might want to consider speaking with a couselor or the social worker in the clinic to confront all of these issues. I think once you have truly accepted your daughters disease this will be alot easier on you and her (I know you have started last month or so but noone can aceept this fate for themselves or their loved ones so quickly).