In the hospital- cough has not gone away since last Nov.

[Mom2Brinly]

<div>Please help... I am so sad & confused! My daughter started all this with an RSV virus and Pseudomanos last Nov. she just cannot kick this cough?! She cultured Pseudomonas again in June did cipro/tobi/caysten  all summer and now in the hospital again w/ IV tobi. She did a bronch last feb. and it showed nothing but aspergillous.</div><div><br></div><div> The doctors tested my daughters IgE levels and they are "low" within normal range. BUT my pediatrics doc tested{we are also testing her food sensitivities which showed she is allergic to corn,wheat and peanuts-but that is another post LOL} to see what molds she was allergic to and she found that she IS allergic to aspergillus!! BUT because her Ige levels show NO inflammation the cf docs are NOT treating it EVEN THOU SHE IS ALLERGIC TO ASPERGILLUS!???! She has never "grown aspergillus from a throat culture" We found it ONLY thru a bronchosopy last Feb. She has been admitted 3 times this year and is in the hospital now. The doctors just told us that she has permanent lung damage (bronchiectasis) in her lower right lobe and this cough maybe her baseline! I am so depressed i can't even think straight. They want to do another bronch but i am worried that this is what damaged her lungs last feb in the first place?? She is too young to have this damage...she is only 7yo. </div><div><br></div><div>Do you think i should let them do the bronch does it clear the crap out or will it damage her more??? Is the aspergillious making her cough and sick all the time? </div><div><br></div><div>Does the bronchiectasis ever go away?</div><div>Blythe</div>

 

[Mom2Brinly]

Please help... I am so sad & confused! My daughter started all this with an RSV virus and Pseudomanos last Nov. she just cannot kick this cough?! She culturedPseudomonas again in Junedid cipro/tobi/caysten all summer and now in the hospital again w/ IV tobi. She did a bronch last feb. and it showed nothing but aspergillous.<br>The doctors tested my daughters IgE levels and they are "low" within normal range. BUT mypediatrics doctested{we are alsotestingher food sensitivities which showed she is allergic to corn,wheat and peanuts-but that is another post LOL} to see what molds she was allergic to and she found that she IS allergic to aspergillus!! BUT because her Ige levels show NO inflammation the cf docs are NOT treating it EVEN THOU SHE IS ALLERGIC TO ASPERGILLUS!???! She has never "grown aspergillus from a throat culture" We found it ONLY thru a bronchosopy last Feb. She has been admitted 3 times this year and is in the hospital now. The doctors just told us that she has permanent lung damage (bronchiectasis) in her lower right lobe and this cough maybe her baseline! I am so depressed i can't even think straight. They want to do another bronch but i am worried that this is what damaged her lungs last feb in the first place?? She is too young to have this damage...she is only 7yo.<br>Do you think i should let them do the bronch does it clear the crap out or will it damage her more??? Is the aspergillious making her cough and sick all the time?<br>Does thebronchiectasis ever go away?Blythe

 

[Mom2Brinly]

Please help... I am so sad & confused! My daughter started all this with an RSV virus and Pseudomanos last Nov. she just cannot kick this cough?! She culturedPseudomonas again in Junedid cipro/tobi/caysten all summer and now in the hospital again w/ IV tobi. She did a bronch last feb. and it showed nothing but aspergillous.<br>The doctors tested my daughters IgE levels and they are "low" within normal range. BUT mypediatrics doctested{we are alsotestingher food sensitivities which showed she is allergic to corn,wheat and peanuts-but that is another post LOL} to see what molds she was allergic to and she found that she IS allergic to aspergillus!! BUT because her Ige levels show NO inflammation the cf docs are NOT treating it EVEN THOU SHE IS ALLERGIC TO ASPERGILLUS!???! She has never "grown aspergillus from a throat culture" We found it ONLY thru a bronchosopy last Feb. She has been admitted 3 times this year and is in the hospital now. The doctors just told us that she has permanent lung damage (bronchiectasis) in her lower right lobe and this cough maybe her baseline! I am so depressed i can't even think straight. They want to do another bronch but i am worried that this is what damaged her lungs last feb in the first place?? She is too young to have this damage...she is only 7yo.<br>Do you think i should let them do the bronch does it clear the crap out or will it damage her more??? Is the aspergillious making her cough and sick all the time?<br>Does thebronchiectasis ever go away?Blythe

 

[Printer]

NO THE BRONCHIECTASE NEVER GOES AWAY. Not as long as she has CF. In short you don't trust the Doctors at your CF Center and that is OK. It is also OK to go to a different CF Center for treatment or for a second opinion. You need to remember that those of us here are either patients or parents, with opinions but not the expertice that you are finding in your CF Center.

You have posted this message at least twice this summer. As I told you earlier, either you treat your daughter yourself or get out of the way and let the Doctors do it. Question but don't interfere.

Bill

 

[Printer]

NO THE BRONCHIECTASE NEVER GOES AWAY. Not as long as she has CF. In short you don't trust the Doctors at your CF Center and that is OK. It is also OK to go to a different CF Center for treatment or for a second opinion. You need to remember that those of us here are either patients or parents, with opinions but not the expertice that you are finding in your CF Center.

You have posted this message at least twice this summer. As I told you earlier, either you treat your daughter yourself or get out of the way and let the Doctors do it. Question but don't interfere.

Bill

 

[Printer]

NO THE BRONCHIECTASE NEVER GOES AWAY. Not as long as she has CF. In short you don't trust the Doctors at your CF Center and that is OK. It is also OK to go to a different CF Center for treatment or for a second opinion. You need to remember that those of us here are either patients or parents, with opinions but not the expertice that you are finding in your CF Center.
<br />
<br />You have posted this message at least twice this summer. As I told you earlier, either you treat your daughter yourself or get out of the way and let the Doctors do it. Question but don't interfere.
<br />
<br />Bill

 

[lizlas]

<P>Hi Blythe:</P>
<P> </P>
<P>I know you are soo worried for your daughter and want to do whats best.</P>
<P> </P>
<P>Unfortunately you are never too young to get bronchiectasis...which is the lung damage from prolonged infection and inflammation.  and no.... once damaged the lung tissue cannot heal and return to normal....she probly uses the vest for clearance? it is very imortant to try and keep that rite bottom as clear as possible from mucus....that is an area that will be prone to mucus and infection.  You may want to ask physio if you should do posturaal drainage for that area as well...hopefully the bronchiectasis can stay at a mild stage.</P>
<P>I think most people with bronchiectais produces extra  sputum every day in that affected lung area and its  causing this cough she cant kick.  So I presume she has a productive cough and greenish yellowish sputum? so  shes on iv tobra....</P>
<P>I know my dr. has told me broncoscopies do not cause bronchiectais.  and they want to do another one to wash out the lower lobe? I ve had many broncoscopies in past with wash out and I never noticed anything worse after.....you can get a slight fever but I never did....I had broncoscopys as an adult /teen .not a child</P>
<P> </P>
<P>and she already had this cough when they did the first bronc in Feb.? and was it productive.?</P>
<P>  how long is she going to be doing the IV tobra for? </P>
<P> </P>
<P><EM> Is there anyone whos child has been told they have ABPA or themselves and they are not treating it....?</EM></P>

 

[lizlas]

<P>Hi Blythe:</P>
<P></P>
<P>I know you are soo worried for your daughter and want to do whats best.</P>
<P></P>
<P>Unfortunately you are never too young to get bronchiectasis...which is the lung damage from prolonged infection and inflammation. and no.... once damaged the lung tissue cannot heal and return to normal....she probly uses the vest for clearance? it is very imortant to try and keep that rite bottom as clear as possible from mucus....that is an area that will be prone to mucus and infection. You may want to ask physio if you should do posturaal drainage for that area as well...hopefully the bronchiectasis can stay at a mild stage.</P>
<P>I think mostpeople withbronchiectais produces extra sputum every day in that affected lung area and its causing this cough she cant kick. So I presume she has a productive cough and greenish yellowish sputum? so shes on iv tobra....</P>
<P>I know my dr. has told me broncoscopies do not cause bronchiectais. and they want to do another one to wash out the lower lobe? I ve had many broncoscopies in past with wash out and I never noticed anything worse after.....you can get a slight fever but I never did....I had broncoscopys as an adult /teen .not a child</P>
<P></P>
<P>andshe already had this cough when they did the first bronc in Feb.? and was it productive.?</P>
<P> how long is she going to be doing the IV tobra for? </P>
<P></P>
<P><EM>Is there anyone whos child has been told they have ABPA or themselves and they are not treating it....?</EM></P>

 

[lizlas]

<P><BR>Hi Blythe:</P>
<P></P>
<P>I know you are soo worried for your daughter and want to do whats best.</P>
<P></P>
<P>Unfortunately you are never too young to get bronchiectasis...which is the lung damage from prolonged infection and inflammation. and no.... once damaged the lung tissue cannot heal and return to normal....she probly uses the vest for clearance? it is very imortant to try and keep that rite bottom as clear as possible from mucus....that is an area that will be prone to mucus and infection. You may want to ask physio if you should do posturaal drainage for that area as well...hopefully the bronchiectasis can stay at a mild stage.</P>
<P>I think mostpeople withbronchiectais produces extra sputum every day in that affected lung area and its causing this cough she cant kick. So I presume she has a productive cough and greenish yellowish sputum? so shes on iv tobra....</P>
<P>I know my dr. has told me broncoscopies do not cause bronchiectais. and they want to do another one to wash out the lower lobe? I ve had many broncoscopies in past with wash out and I never noticed anything worse after.....you can get a slight fever but I never did....I had broncoscopys as an adult /teen .not a child</P>
<P></P>
<P>andshe already had this cough when they did the first bronc in Feb.? and was it productive.?</P>
<P> how long is she going to be doing the IV tobra for? </P>
<P></P>
<P><EM>Is there anyone whos child has been told they have ABPA or themselves and they are not treating it....?</EM></P>

 

[JustDucky]

I have had bronchs for the sake of cleaning out my lungs a few times and no, they don't cause bronchiectasis....as aforementioned in the previous post, prolonged inflammation and infection are the culprits. I did get mild fevers from the bronchs, but nothing long lasting.
From what I understand, it does not go away as it is damaged. Doing good chest physio and meds helps. As far as the ABPA, I would get another opinion if you aren't comfortable with the way it is being handled. There is nothing wrong with another set of eyes looking at it with a fresh mind. You are with her every day, so you know her norms and when things are not right. By doing a bronch, the docs can also get a really good sputum sample, sometimes what is cultured from the throat or by what she is coughing up does not show up. Perhaps there is another culprit that just hasn't been identified yet.
Whatever you decide, I hope that you find answers in the end and relief for your daughter. Keeping you both in my thoughts and prayers,
Jenn

 

[JustDucky]

I have had bronchs for the sake of cleaning out my lungs a few times and no, they don't cause bronchiectasis....as aforementioned in the previous post, prolonged inflammation and infection are the culprits. I did get mild fevers from the bronchs, but nothing long lasting.
From what I understand, it does not go away as it is damaged. Doing good chest physio and meds helps. As far as the ABPA, I would get another opinion if you aren't comfortable with the way it is being handled. There is nothing wrong with another set of eyes looking at it with a fresh mind. You are with her every day, so you know her norms and when things are not right. By doing a bronch, the docs can also get a really good sputum sample, sometimes what is cultured from the throat or by what she is coughing up does not show up. Perhaps there is another culprit that just hasn't been identified yet.
Whatever you decide, I hope that you find answers in the end and relief for your daughter. Keeping you both in my thoughts and prayers,
Jenn

 

[JustDucky]

I have had bronchs for the sake of cleaning out my lungs a few times and no, they don't cause bronchiectasis....as aforementioned in the previous post, prolonged inflammation and infection are the culprits. I did get mild fevers from the bronchs, but nothing long lasting.
<br /> From what I understand, it does not go away as it is damaged. Doing good chest physio and meds helps. As far as the ABPA, I would get another opinion if you aren't comfortable with the way it is being handled. There is nothing wrong with another set of eyes looking at it with a fresh mind. You are with her every day, so you know her norms and when things are not right. By doing a bronch, the docs can also get a really good sputum sample, sometimes what is cultured from the throat or by what she is coughing up does not show up. Perhaps there is another culprit that just hasn't been identified yet.
<br />Whatever you decide, I hope that you find answers in the end and relief for your daughter. Keeping you both in my thoughts and prayers,
<br />Jenn

 

[Jana]

Blythe,

Sorry to hear your daughter is having such a hard time. When I go through times where my cough just won't back off, cleaning out via bronchoscopy is the one thing that seems to give me some relief. I've read where some people have said it wasn't a good thing for them as they had trouble recovering from it, but for me it's very helpful.

Although some people say it doesn't help them, I don't think it has much potential for actually causing damage to the lungs.

As far as the bronchiectasis, that kind of thing is unavoidable for those of us with cf, but keeping up with treatments will slow the progress. Don't let it overwhelm you, though. I know "permanent lung damage" sounds scary, but for years my PFTs stayed in the 90s even with a variety of that type of damage. Also, it seems to me that for most of us more sick times seem to go in spurts. Two years ago I was sick almost constantly, and last year was the healthiest year I'd had in a decade. Get a second opinion if you are worried, but don't lose hope. Tomorrow may be a healthier day!

 

[Jana]

Blythe,

Sorry to hear your daughter is having such a hard time. When I go through times where my cough just won't back off, cleaning out via bronchoscopy is the one thing that seems to give me some relief. I've read where some people have said it wasn't a good thing for them as they had trouble recovering from it, but for me it's very helpful.

Although some people say it doesn't help them, I don't think it has much potential for actually causing damage to the lungs.

As far as the bronchiectasis, that kind of thing is unavoidable for those of us with cf, but keeping up with treatments will slow the progress. Don't let it overwhelm you, though. I know "permanent lung damage" sounds scary, but for years my PFTs stayed in the 90s even with a variety of that type of damage. Also, it seems to me that for most of us more sick times seem to go in spurts. Two years ago I was sick almost constantly, and last year was the healthiest year I'd had in a decade. Get a second opinion if you are worried, but don't lose hope. Tomorrow may be a healthier day!

 

[Jana]

Blythe,
<br />
<br />Sorry to hear your daughter is having such a hard time. When I go through times where my cough just won't back off, cleaning out via bronchoscopy is the one thing that seems to give me some relief. I've read where some people have said it wasn't a good thing for them as they had trouble recovering from it, but for me it's very helpful.
<br />
<br />Although some people say it doesn't help them, I don't think it has much potential for actually causing damage to the lungs.
<br />
<br />As far as the bronchiectasis, that kind of thing is unavoidable for those of us with cf, but keeping up with treatments will slow the progress. Don't let it overwhelm you, though. I know "permanent lung damage" sounds scary, but for years my PFTs stayed in the 90s even with a variety of that type of damage. Also, it seems to me that for most of us more sick times seem to go in spurts. Two years ago I was sick almost constantly, and last year was the healthiest year I'd had in a decade. Get a second opinion if you are worried, but don't lose hope. Tomorrow may be a healthier day!

 

[Havoc]

Well let's clarify culturing aspergillus and having ABPA. I am also sensitive to aspergillus, and sometimes even culture it, but it does not become ABPA until your IgE falls within a specific (elevated) range. So, yes it is possible to be sensitive to, and culture, aspergillus and not have ABPA. I know it's frustrating, there have been times that I've been feeling crappy and the culture comes back positive for aspergillus and I'm sure my IgE must be through the roof, but it isn't and the cause of my feeling crappy is either another bacterial exacerbation, or perhaps even more frustratingly viral.

Let's also remember the none-too-friendly standard treatment of ABPA is a blast of high-dose steroids for a prolonged period of time, although there is the alternative of Xolair these days. That's not a treatment I take lightly, as it can really have some ugly side effects. I want to make sure I'm treating the right thing before I jump headlong into a long course of prednisone, and even then after treating ABPA once with prednisone, I would hesitate in doing it again just on the side effects alone.

All this is compounded by her being young and not being able to give as clear a picture as an adult about what feels wrong. For me, I would defend the doc's decision not to treat for ABPA. It just doesn't sound like it's indicated in your daughter's case and I certainly would not put anyone through steroid treatment when it wasn't clearly indicated. There's quite a lot of information missing to be able to piece together what I might think about if I found my own self in that position. I would take many things into consideration, though. Things that I look at are chest films, preferably a recent high res CT, trends in PFT's, particularly with the smaller airways, cough (for me it's a yes/no, I don't usually cough without being sick), weight, level of activity and general feeling. I obviously listen to what my doc says as well, but not blindly. I make them prove their case, I don't always approve of treating just because we can.

It really sounds like you are all for pedal to the floor treatment. I can't say that I am surprised, as one always wants their kids to do well and be healthy. However, there is such a thing as overkill and it is also possible to know just enough to be dangerous. If you don't understand, or agree with, a course of treatment (or non-treatment), ask them to explain to you why they are making the choices they are. If you still don't understand, ask someone here or perhaps ask a social worker to educate you on various conditions and treatment options available. Doc's are human and can make mistakes sometimes. Usually, the centers have a team and discuss patients in a group setting to avoid tunnel vision.

 

[Havoc]

Well let's clarify culturing aspergillus and having ABPA. I am also sensitive to aspergillus, and sometimes even culture it, but it does not become ABPA until your IgE falls within a specific (elevated) range. So, yes it is possible to be sensitive to, and culture, aspergillus and not have ABPA. I know it's frustrating, there have been times that I've been feeling crappy and the culture comes back positive for aspergillus and I'm sure my IgE must be through the roof, but it isn't and the cause of my feeling crappy is either another bacterial exacerbation, or perhaps even more frustratingly viral.

Let's also remember the none-too-friendly standard treatment of ABPA is a blast of high-dose steroids for a prolonged period of time, although there is the alternative of Xolair these days. That's not a treatment I take lightly, as it can really have some ugly side effects. I want to make sure I'm treating the right thing before I jump headlong into a long course of prednisone, and even then after treating ABPA once with prednisone, I would hesitate in doing it again just on the side effects alone.

All this is compounded by her being young and not being able to give as clear a picture as an adult about what feels wrong. For me, I would defend the doc's decision not to treat for ABPA. It just doesn't sound like it's indicated in your daughter's case and I certainly would not put anyone through steroid treatment when it wasn't clearly indicated. There's quite a lot of information missing to be able to piece together what I might think about if I found my own self in that position. I would take many things into consideration, though. Things that I look at are chest films, preferably a recent high res CT, trends in PFT's, particularly with the smaller airways, cough (for me it's a yes/no, I don't usually cough without being sick), weight, level of activity and general feeling. I obviously listen to what my doc says as well, but not blindly. I make them prove their case, I don't always approve of treating just because we can.

It really sounds like you are all for pedal to the floor treatment. I can't say that I am surprised, as one always wants their kids to do well and be healthy. However, there is such a thing as overkill and it is also possible to know just enough to be dangerous. If you don't understand, or agree with, a course of treatment (or non-treatment), ask them to explain to you why they are making the choices they are. If you still don't understand, ask someone here or perhaps ask a social worker to educate you on various conditions and treatment options available. Doc's are human and can make mistakes sometimes. Usually, the centers have a team and discuss patients in a group setting to avoid tunnel vision.

 

[Havoc]

Well let's clarify culturing aspergillus and having ABPA. I am also sensitive to aspergillus, and sometimes even culture it, but it does not become ABPA until your IgE falls within a specific (elevated) range. So, yes it is possible to be sensitive to, and culture, aspergillus and not have ABPA. I know it's frustrating, there have been times that I've been feeling crappy and the culture comes back positive for aspergillus and I'm sure my IgE must be through the roof, but it isn't and the cause of my feeling crappy is either another bacterial exacerbation, or perhaps even more frustratingly viral.
<br />
<br />Let's also remember the none-too-friendly standard treatment of ABPA is a blast of high-dose steroids for a prolonged period of time, although there is the alternative of Xolair these days. That's not a treatment I take lightly, as it can really have some ugly side effects. I want to make sure I'm treating the right thing before I jump headlong into a long course of prednisone, and even then after treating ABPA once with prednisone, I would hesitate in doing it again just on the side effects alone.
<br />
<br />All this is compounded by her being young and not being able to give as clear a picture as an adult about what feels wrong. For me, I would defend the doc's decision not to treat for ABPA. It just doesn't sound like it's indicated in your daughter's case and I certainly would not put anyone through steroid treatment when it wasn't clearly indicated. There's quite a lot of information missing to be able to piece together what I might think about if I found my own self in that position. I would take many things into consideration, though. Things that I look at are chest films, preferably a recent high res CT, trends in PFT's, particularly with the smaller airways, cough (for me it's a yes/no, I don't usually cough without being sick), weight, level of activity and general feeling. I obviously listen to what my doc says as well, but not blindly. I make them prove their case, I don't always approve of treating just because we can.
<br />
<br />It really sounds like you are all for pedal to the floor treatment. I can't say that I am surprised, as one always wants their kids to do well and be healthy. However, there is such a thing as overkill and it is also possible to know just enough to be dangerous. If you don't understand, or agree with, a course of treatment (or non-treatment), ask them to explain to you why they are making the choices they are. If you still don't understand, ask someone here or perhaps ask a social worker to educate you on various conditions and treatment options available. Doc's are human and can make mistakes sometimes. Usually, the centers have a team and discuss patients in a group setting to avoid tunnel vision.