tune ups??

[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).

 

[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).

 

[folione]

Just wanted to add a couple practical tips: At the end of the day, the decision is still yours to make no matter what the doctors and forum members say. I think you are going down the right track by asking the Dr. to get more specific about what benefit they expect or what problem they're trying to solve via the admission.

Next, if you decide on the admission, schedule it to suit your needs and do not go in at the end of a week, especially if the plan is to get hooked up with a picc and released for home-IV; it can take a couple days to get the drug levels right and home IV services can be hard to schedule for weekends which could force you to stay longer than really necessary.

My son is 4 and has had IV treatments 3 times (1 inpatient the whole time and the others at home). He cultures PA once or twice a year, but his mother and I share the same concerns as you about seemingly unnecessary admissions/drugs...

 

[folione]

Just wanted to add a couple practical tips: At the end of the day, the decision is still yours to make no matter what the doctors and forum members say. I think you are going down the right track by asking the Dr. to get more specific about what benefit they expect or what problem they're trying to solve via the admission.

Next, if you decide on the admission, schedule it to suit your needs and do not go in at the end of a week, especially if the plan is to get hooked up with a picc and released for home-IV; it can take a couple days to get the drug levels right and home IV services can be hard to schedule for weekends which could force you to stay longer than really necessary.

My son is 4 and has had IV treatments 3 times (1 inpatient the whole time and the others at home). He cultures PA once or twice a year, but his mother and I share the same concerns as you about seemingly unnecessary admissions/drugs...

 

[folione]

Just wanted to add a couple practical tips: At the end of the day, the decision is still yours to make no matter what the doctors and forum members say. I think you are going down the right track by asking the Dr. to get more specific about what benefit they expect or what problem they're trying to solve via the admission.

Next, if you decide on the admission, schedule it to suit your needs and do not go in at the end of a week, especially if the plan is to get hooked up with a picc and released for home-IV; it can take a couple days to get the drug levels right and home IV services can be hard to schedule for weekends which could force you to stay longer than really necessary.

My son is 4 and has had IV treatments 3 times (1 inpatient the whole time and the others at home). He cultures PA once or twice a year, but his mother and I share the same concerns as you about seemingly unnecessary admissions/drugs...

 

[folione]

Just wanted to add a couple practical tips: At the end of the day, the decision is still yours to make no matter what the doctors and forum members say. I think you are going down the right track by asking the Dr. to get more specific about what benefit they expect or what problem they're trying to solve via the admission.

Next, if you decide on the admission, schedule it to suit your needs and do not go in at the end of a week, especially if the plan is to get hooked up with a picc and released for home-IV; it can take a couple days to get the drug levels right and home IV services can be hard to schedule for weekends which could force you to stay longer than really necessary.

My son is 4 and has had IV treatments 3 times (1 inpatient the whole time and the others at home). He cultures PA once or twice a year, but his mother and I share the same concerns as you about seemingly unnecessary admissions/drugs...

 

[folione]

Just wanted to add a couple practical tips: At the end of the day, the decision is still yours to make no matter what the doctors and forum members say. I think you are going down the right track by asking the Dr. to get more specific about what benefit they expect or what problem they're trying to solve via the admission.

Next, if you decide on the admission, schedule it to suit your needs and do not go in at the end of a week, especially if the plan is to get hooked up with a picc and released for home-IV; it can take a couple days to get the drug levels right and home IV services can be hard to schedule for weekends which could force you to stay longer than really necessary.

My son is 4 and has had IV treatments 3 times (1 inpatient the whole time and the others at home). He cultures PA once or twice a year, but his mother and I share the same concerns as you about seemingly unnecessary admissions/drugs...

 

[folione]

Just wanted to add a couple practical tips: At the end of the day, the decision is still yours to make no matter what the doctors and forum members say. I think you are going down the right track by asking the Dr. to get more specific about what benefit they expect or what problem they're trying to solve via the admission.

Next, if you decide on the admission, schedule it to suit your needs and do not go in at the end of a week, especially if the plan is to get hooked up with a picc and released for home-IV; it can take a couple days to get the drug levels right and home IV services can be hard to schedule for weekends which could force you to stay longer than really necessary.

My son is 4 and has had IV treatments 3 times (1 inpatient the whole time and the others at home). He cultures PA once or twice a year, but his mother and I share the same concerns as you about seemingly unnecessary admissions/drugs...

 

[tammykrumrey]

Our clinic doesn't do regular tune ups, but I have sometimes wondered if they are a good idea.

Jennifer, first...your daughter is darling<img src="i/expressions/face-icon-small-smile.gif" border="0">

Second, something that really helps me is ALWAYS getting copies of the PFT report. We get one every single time, and I track it myself. At five, she probably doesn't do great numbers, and the doctors will take that into account. BUT, if her PFTs were only 80% at her age, I would not be happy with that! I would try a tune up and see if it could help.

My 9 year olds PFT's have gone up in the last year, without changing much of anything...other than she is older and can do the test properly now.

And I always get copies of sputum cultures and blood work and x-rays/ct scans.

My older daughter has only been admitted one time with a PICC line, and was so much better after the two weeks of IVs. That was in May 2006. My younger daughter has never been admitted with IVs.

And one thing that always stays with me, is that there really is no guarantee that a clean culture really means just that. I get really excited when cultures come back clear of PA or MRSA, but I know that they could still be in there, just not showing up on the report. I think our clinic feels more confident about being clear of something after 5 or more clean cultures.

 

[tammykrumrey]

Our clinic doesn't do regular tune ups, but I have sometimes wondered if they are a good idea.

Jennifer, first...your daughter is darling<img src="i/expressions/face-icon-small-smile.gif" border="0">

Second, something that really helps me is ALWAYS getting copies of the PFT report. We get one every single time, and I track it myself. At five, she probably doesn't do great numbers, and the doctors will take that into account. BUT, if her PFTs were only 80% at her age, I would not be happy with that! I would try a tune up and see if it could help.

My 9 year olds PFT's have gone up in the last year, without changing much of anything...other than she is older and can do the test properly now.

And I always get copies of sputum cultures and blood work and x-rays/ct scans.

My older daughter has only been admitted one time with a PICC line, and was so much better after the two weeks of IVs. That was in May 2006. My younger daughter has never been admitted with IVs.

And one thing that always stays with me, is that there really is no guarantee that a clean culture really means just that. I get really excited when cultures come back clear of PA or MRSA, but I know that they could still be in there, just not showing up on the report. I think our clinic feels more confident about being clear of something after 5 or more clean cultures.

 

[tammykrumrey]

Our clinic doesn't do regular tune ups, but I have sometimes wondered if they are a good idea.

Jennifer, first...your daughter is darling<img src="i/expressions/face-icon-small-smile.gif" border="0">

Second, something that really helps me is ALWAYS getting copies of the PFT report. We get one every single time, and I track it myself. At five, she probably doesn't do great numbers, and the doctors will take that into account. BUT, if her PFTs were only 80% at her age, I would not be happy with that! I would try a tune up and see if it could help.

My 9 year olds PFT's have gone up in the last year, without changing much of anything...other than she is older and can do the test properly now.

And I always get copies of sputum cultures and blood work and x-rays/ct scans.

My older daughter has only been admitted one time with a PICC line, and was so much better after the two weeks of IVs. That was in May 2006. My younger daughter has never been admitted with IVs.

And one thing that always stays with me, is that there really is no guarantee that a clean culture really means just that. I get really excited when cultures come back clear of PA or MRSA, but I know that they could still be in there, just not showing up on the report. I think our clinic feels more confident about being clear of something after 5 or more clean cultures.

 

[tammykrumrey]

Our clinic doesn't do regular tune ups, but I have sometimes wondered if they are a good idea.

Jennifer, first...your daughter is darling<img src="i/expressions/face-icon-small-smile.gif" border="0">

Second, something that really helps me is ALWAYS getting copies of the PFT report. We get one every single time, and I track it myself. At five, she probably doesn't do great numbers, and the doctors will take that into account. BUT, if her PFTs were only 80% at her age, I would not be happy with that! I would try a tune up and see if it could help.

My 9 year olds PFT's have gone up in the last year, without changing much of anything...other than she is older and can do the test properly now.

And I always get copies of sputum cultures and blood work and x-rays/ct scans.

My older daughter has only been admitted one time with a PICC line, and was so much better after the two weeks of IVs. That was in May 2006. My younger daughter has never been admitted with IVs.

And one thing that always stays with me, is that there really is no guarantee that a clean culture really means just that. I get really excited when cultures come back clear of PA or MRSA, but I know that they could still be in there, just not showing up on the report. I think our clinic feels more confident about being clear of something after 5 or more clean cultures.

 

[tammykrumrey]

Our clinic doesn't do regular tune ups, but I have sometimes wondered if they are a good idea.

Jennifer, first...your daughter is darling<img src="i/expressions/face-icon-small-smile.gif" border="0">

Second, something that really helps me is ALWAYS getting copies of the PFT report. We get one every single time, and I track it myself. At five, she probably doesn't do great numbers, and the doctors will take that into account. BUT, if her PFTs were only 80% at her age, I would not be happy with that! I would try a tune up and see if it could help.

My 9 year olds PFT's have gone up in the last year, without changing much of anything...other than she is older and can do the test properly now.

And I always get copies of sputum cultures and blood work and x-rays/ct scans.

My older daughter has only been admitted one time with a PICC line, and was so much better after the two weeks of IVs. That was in May 2006. My younger daughter has never been admitted with IVs.

And one thing that always stays with me, is that there really is no guarantee that a clean culture really means just that. I get really excited when cultures come back clear of PA or MRSA, but I know that they could still be in there, just not showing up on the report. I think our clinic feels more confident about being clear of something after 5 or more clean cultures.

 

[tammykrumrey]

Our clinic doesn't do regular tune ups, but I have sometimes wondered if they are a good idea.

Jennifer, first...your daughter is darling<img src="i/expressions/face-icon-small-smile.gif" border="0">

Second, something that really helps me is ALWAYS getting copies of the PFT report. We get one every single time, and I track it myself. At five, she probably doesn't do great numbers, and the doctors will take that into account. BUT, if her PFTs were only 80% at her age, I would not be happy with that! I would try a tune up and see if it could help.

My 9 year olds PFT's have gone up in the last year, without changing much of anything...other than she is older and can do the test properly now.

And I always get copies of sputum cultures and blood work and x-rays/ct scans.

My older daughter has only been admitted one time with a PICC line, and was so much better after the two weeks of IVs. That was in May 2006. My younger daughter has never been admitted with IVs.

And one thing that always stays with me, is that there really is no guarantee that a clean culture really means just that. I get really excited when cultures come back clear of PA or MRSA, but I know that they could still be in there, just not showing up on the report. I think our clinic feels more confident about being clear of something after 5 or more clean cultures.

 

[Sakem]

Jessica,

I know nothing of your other posts, so I am just responding to this one. It is appropriate to question what the doctors want to do, yes they are the smart educated ones, but they are not always right, and there is usually no one right way of doing things. That being said, there has to be something to why they think she needs IVs. I would have said personally she should of had IVs the first time, she cultured PA. Our clinic feels and research shows that if u r very aggressive w/ PA the first time, u can erradicate it longer. Still there are docs out there that just use Cipro and tobi, and it works, but I would just want to be aggressive as I could with my childs lungs to keep PA away as long as I could.

PFTs in the 80s at 5 are fine.....cause at that age, one day she could blow 80 and the next day 100. It is almost impossible to get an accurate test at that age, I think for us, it was closer to almost7, maybe 6.

Has she ever had a CT scan of her lungs or a broncoscopy? Prehaps this is something to ask your doc about doing before IVs. This will give u a baseline for comparrison, plus just because she is not culturing anything, does not mean there is not something hiding out down in her lungs

Hope things work out the best for your daughter. Yes hospitializations are hard, but not the end all. Do not get all hung up on people that did not have IVs til 16 or older or the fact that older people have higher PFTs. None of these can predict your daughters health, only you, her, her docs, compliance, and luck can do this

 

[Sakem]

Jessica,

I know nothing of your other posts, so I am just responding to this one. It is appropriate to question what the doctors want to do, yes they are the smart educated ones, but they are not always right, and there is usually no one right way of doing things. That being said, there has to be something to why they think she needs IVs. I would have said personally she should of had IVs the first time, she cultured PA. Our clinic feels and research shows that if u r very aggressive w/ PA the first time, u can erradicate it longer. Still there are docs out there that just use Cipro and tobi, and it works, but I would just want to be aggressive as I could with my childs lungs to keep PA away as long as I could.

PFTs in the 80s at 5 are fine.....cause at that age, one day she could blow 80 and the next day 100. It is almost impossible to get an accurate test at that age, I think for us, it was closer to almost7, maybe 6.

Has she ever had a CT scan of her lungs or a broncoscopy? Prehaps this is something to ask your doc about doing before IVs. This will give u a baseline for comparrison, plus just because she is not culturing anything, does not mean there is not something hiding out down in her lungs

Hope things work out the best for your daughter. Yes hospitializations are hard, but not the end all. Do not get all hung up on people that did not have IVs til 16 or older or the fact that older people have higher PFTs. None of these can predict your daughters health, only you, her, her docs, compliance, and luck can do this

 

[Sakem]

Jessica,

I know nothing of your other posts, so I am just responding to this one. It is appropriate to question what the doctors want to do, yes they are the smart educated ones, but they are not always right, and there is usually no one right way of doing things. That being said, there has to be something to why they think she needs IVs. I would have said personally she should of had IVs the first time, she cultured PA. Our clinic feels and research shows that if u r very aggressive w/ PA the first time, u can erradicate it longer. Still there are docs out there that just use Cipro and tobi, and it works, but I would just want to be aggressive as I could with my childs lungs to keep PA away as long as I could.

PFTs in the 80s at 5 are fine.....cause at that age, one day she could blow 80 and the next day 100. It is almost impossible to get an accurate test at that age, I think for us, it was closer to almost7, maybe 6.

Has she ever had a CT scan of her lungs or a broncoscopy? Prehaps this is something to ask your doc about doing before IVs. This will give u a baseline for comparrison, plus just because she is not culturing anything, does not mean there is not something hiding out down in her lungs

Hope things work out the best for your daughter. Yes hospitializations are hard, but not the end all. Do not get all hung up on people that did not have IVs til 16 or older or the fact that older people have higher PFTs. None of these can predict your daughters health, only you, her, her docs, compliance, and luck can do this

 

[Sakem]

Jessica,

I know nothing of your other posts, so I am just responding to this one. It is appropriate to question what the doctors want to do, yes they are the smart educated ones, but they are not always right, and there is usually no one right way of doing things. That being said, there has to be something to why they think she needs IVs. I would have said personally she should of had IVs the first time, she cultured PA. Our clinic feels and research shows that if u r very aggressive w/ PA the first time, u can erradicate it longer. Still there are docs out there that just use Cipro and tobi, and it works, but I would just want to be aggressive as I could with my childs lungs to keep PA away as long as I could.

PFTs in the 80s at 5 are fine.....cause at that age, one day she could blow 80 and the next day 100. It is almost impossible to get an accurate test at that age, I think for us, it was closer to almost7, maybe 6.

Has she ever had a CT scan of her lungs or a broncoscopy? Prehaps this is something to ask your doc about doing before IVs. This will give u a baseline for comparrison, plus just because she is not culturing anything, does not mean there is not something hiding out down in her lungs

Hope things work out the best for your daughter. Yes hospitializations are hard, but not the end all. Do not get all hung up on people that did not have IVs til 16 or older or the fact that older people have higher PFTs. None of these can predict your daughters health, only you, her, her docs, compliance, and luck can do this