uncomfortable with decision

mom2owen · Apr 14, 2011

Here again <img src="i/expressions/face-icon-small-sad.gif" border="0"> Owen has been on bactrim for almost six weeks. His cough is better than it was seven weeks ago but not better than two weeks ago. He still brings up stuff with CPT and his voice is very scratchy.
Last week, I asked if we could stop the symbicort but our doctor said no, we shouldn't change so much at once. Since he is back on the bactrim (there was a four day break) he is not better but the low-grade fevers are gone so maybe it is from getting back on bactrim.
Today, when she called to check in, our doctor said, again, she is cautiously optimistic about him getting better on this regimin and since he is going to school and still active, she wants to wait and see how he is next week. I am so frustrated because he is not at his baseline from before this illness and we have been doing the same thing and saying the same thing for six weeks now ( he has been coughing for a total of ten weeks). He is not any better back on bactrim than he was before so I want to take him off if it doesn't seem to be helping. And, I don't want him on Symbicort, again, if it doesn't seem to help.
Should I just keep waiting and seeing? He is not knocked down and miserable so I actually wonder why we cannot take him off all drugs except maybe the albuterol nebs and CPT.I don't know how to talk to our doctor and tell her my gut says saline would be helpful. I just take what she says, hang up and then stew about it. Maybe Owen will always have this cough and tons of phlegm. Maybe that is just how he is now? I just wish we could clean him out and wipe the slate clean.
Any chance his scratchy voice is from the albuterol nebs? I feel like the doctor is not concerned about his CT scan results and doesn't feel like he is at risk for permanent lung damage from having this episode for so long. I am not comfortable that any amount of damage is ok and I don't want to get complacant. And it's funny to me that what I want to try the most is the least risky, HTS. I don't want her to increase meds, I want her to decrease them. Am I out of touch?? I just want my old Owen back.

mom2owen · Apr 14, 2011

Here again <img src="i/expressions/face-icon-small-sad.gif" border="0"> Owen has been on bactrim for almost six weeks. His cough is better than it was seven weeks ago but not better than two weeks ago. He still brings up stuff with CPT and his voice is very scratchy.
Last week, I asked if we could stop the symbicort but our doctor said no, we shouldn't change so much at once. Since he is back on the bactrim (there was a four day break) he is not better but the low-grade fevers are gone so maybe it is from getting back on bactrim.
Today, when she called to check in, our doctor said, again, she is cautiously optimistic about him getting better on this regimin and since he is going to school and still active, she wants to wait and see how he is next week. I am so frustrated because he is not at his baseline from before this illness and we have been doing the same thing and saying the same thing for six weeks now ( he has been coughing for a total of ten weeks). He is not any better back on bactrim than he was before so I want to take him off if it doesn't seem to be helping. And, I don't want him on Symbicort, again, if it doesn't seem to help.
Should I just keep waiting and seeing? He is not knocked down and miserable so I actually wonder why we cannot take him off all drugs except maybe the albuterol nebs and CPT.I don't know how to talk to our doctor and tell her my gut says saline would be helpful. I just take what she says, hang up and then stew about it. Maybe Owen will always have this cough and tons of phlegm. Maybe that is just how he is now? I just wish we could clean him out and wipe the slate clean.
Any chance his scratchy voice is from the albuterol nebs? I feel like the doctor is not concerned about his CT scan results and doesn't feel like he is at risk for permanent lung damage from having this episode for so long. I am not comfortable that any amount of damage is ok and I don't want to get complacant. And it's funny to me that what I want to try the most is the least risky, HTS. I don't want her to increase meds, I want her to decrease them. Am I out of touch?? I just want my old Owen back.

mom2owen · Apr 14, 2011

Here again <img src="i/expressions/face-icon-small-sad.gif" border="0"> Owen has been on bactrim for almost six weeks. His cough is better than it was seven weeks ago but not better than two weeks ago. He still brings up stuff with CPT and his voice is very scratchy.
 Last week, I asked if we could stop the symbicort but our doctor said no, we shouldn't change so much at once. Since he is back on the bactrim (there was a four day break) he is not better but the low-grade fevers are gone so maybe it is from getting back on bactrim.
 Today, when she called to check in, our doctor said, again, she is cautiously optimistic about him getting better on this regimin and since he is going to school and still active, she wants to wait and see how he is next week. I am so frustrated because he is not at his baseline from before this illness and we have been doing the same thing and saying the same thing for six weeks now ( he has been coughing for a total of ten weeks). He is not any better back on bactrim than he was before so I want to take him off if it doesn't seem to be helping. And, I don't want him on Symbicort, again, if it doesn't seem to help.
 Should I just keep waiting and seeing? He is not knocked down and miserable so I actually wonder why we cannot take him off all drugs except maybe the albuterol nebs and CPT.I don't know how to talk to our doctor and tell her my gut says saline would be helpful. I just take what she says, hang up and then stew about it. Maybe Owen will always have this cough and tons of phlegm. Maybe that is just how he is now? I just wish we could clean him out and wipe the slate clean.
 Any chance his scratchy voice is from the albuterol nebs? I feel like the doctor is not concerned about his CT scan results and doesn't feel like he is at risk for permanent lung damage from having this episode for so long. I am not comfortable that any amount of damage is ok and I don't want to get complacant. And it's funny to me that what I want to try the most is the least risky, HTS. I don't want her to increase meds, I want her to decrease them. Am I out of touch?? I just want my old Owen back.

Ratatosk · Apr 14, 2011

As a parent, you know your child better than someone who sees him for just a few minutes every once in awhile. If this isn't the norm for him then I would keep pushing for answers, pushing for treatment.

Have they done a sputum culture lately to see what sort of bugs he may be growing and what they're sensitive to?

Sorry you're having to go thru this. When DS was a baby, I was told "they cough, it's what they do" and it turned out he had bronchitis, was culturing a bug common to the NICU. A few days later with LOTS of CPT and the correct antibiotic, the cough he'd had for weeks was gone!

Ratatosk · Apr 14, 2011

As a parent, you know your child better than someone who sees him for just a few minutes every once in awhile. If this isn't the norm for him then I would keep pushing for answers, pushing for treatment.

Have they done a sputum culture lately to see what sort of bugs he may be growing and what they're sensitive to?

Sorry you're having to go thru this. When DS was a baby, I was told "they cough, it's what they do" and it turned out he had bronchitis, was culturing a bug common to the NICU. A few days later with LOTS of CPT and the correct antibiotic, the cough he'd had for weeks was gone!

Ratatosk · Apr 14, 2011

As a parent, you know your child better than someone who sees him for just a few minutes every once in awhile. If this isn't the norm for him then I would keep pushing for answers, pushing for treatment.
 
 Have they done a sputum culture lately to see what sort of bugs he may be growing and what they're sensitive to?
 
 Sorry you're having to go thru this. When DS was a baby, I was told "they cough, it's what they do" and it turned out he had bronchitis, was culturing a bug common to the NICU. A few days later with LOTS of CPT and the correct antibiotic, the cough he'd had for weeks was gone!

Rebjane · Apr 14, 2011

Hmm, this is hard because I think I recall you don't have a definite CF diagnosis. Albuterol in my past experience has not caused a scratchy throat. My little girl has been doing albuterol 3 times a day (at least) for 5+ years.

HTS or 7% saline has been beneficial for those with CF; I do not think it has been shown to be useful in those with other lung disease, to my own knowledge.

I agree getting another sputum culture would be very beneficial. If my child had an extended course of antibiotics and was still coughing; it's time to reexamine the culture, maybe move on to a different antibiotic. Also, sometimes a bacteria shows it is sensitive to an antibiotic but clinically it's just not cutting it.

My daughter always needs a really high dose of antibiotics for a long course.

Rebjane · Apr 14, 2011

Hmm, this is hard because I think I recall you don't have a definite CF diagnosis. Albuterol in my past experience has not caused a scratchy throat. My little girl has been doing albuterol 3 times a day (at least) for 5+ years.

HTS or 7% saline has been beneficial for those with CF; I do not think it has been shown to be useful in those with other lung disease, to my own knowledge.

I agree getting another sputum culture would be very beneficial. If my child had an extended course of antibiotics and was still coughing; it's time to reexamine the culture, maybe move on to a different antibiotic. Also, sometimes a bacteria shows it is sensitive to an antibiotic but clinically it's just not cutting it.

My daughter always needs a really high dose of antibiotics for a long course.

Rebjane · Apr 14, 2011

Hmm, this is hard because I think I recall you don't have a definite CF diagnosis. Albuterol in my past experience has not caused a scratchy throat. My little girl has been doing albuterol 3 times a day (at least) for 5+ years.
 
 HTS or 7% saline has been beneficial for those with CF; I do not think it has been shown to be useful in those with other lung disease, to my own knowledge.
 
 I agree getting another sputum culture would be very beneficial. If my child had an extended course of antibiotics and was still coughing; it's time to reexamine the culture, maybe move on to a different antibiotic. Also, sometimes a bacteria shows it is sensitive to an antibiotic but clinically it's just not cutting it.
 
 My daughter always needs a really high dose of antibiotics for a long course.

hockeykid · Apr 14, 2011

Maybe you could ask your son's doctor for a HTS trial at his next appointment. I think it is worth a shot asking the doctor. You could also request that you be given a prescription for your son to inhale .9 percent normal saline.

hockeykid · Apr 14, 2011

Maybe you could ask your son's doctor for a HTS trial at his next appointment. I think it is worth a shot asking the doctor. You could also request that you be given a prescription for your son to inhale .9 percent normal saline.

hockeykid · Apr 14, 2011

Maybe you could ask your son's doctor for a HTS trial at his next appointment. I think it is worth a shot asking the doctor. You could also request that you be given a prescription for your son to inhale .9 percent normal saline.

mom2owen · Apr 15, 2011

Thanks for the replies. I am feeling a little better now! Yes, we are in a bad situation since we don't have a dx. I do know that people with other lung issues use HTS. My dad, a cardiologist, recommended we try it as well (I often remind him the heart is his specialty but he counters that with his grandson is his specialty!). I am mostly for it because of the lack of side affects so even if it doesn't help him, it won't hurt him. He is so thick with mucus, I cannot see how it won't help. I am glad albuterol doesn't seem to cause the scratchy throat but of course it makes me wonder what is, maybe just weeks on end of coughing.
My husband is going to call the doctor tomorrow. Phew, that's a load off of me. He will ask her the tough questions which I think will help her to see that we are a team and on the same page with all of this. He can be the hard dad and let the crazy mom get a rest! He is going to ask for saline and ask if we can re-culture to see what is growing. I still have my theory that there might be something else in there and he may eventually need that bronchoscopy but at least a culture might show that the staph is either gone or needs a different abx. I cannot wait for this saga to end. Of course, I know it might not be gone for good but this round of infection has gone on way too long. Thanks for hanging in there with me, I am sure my posts are getting very boring, always saying the same thing. cough cough cough!

mom2owen · Apr 15, 2011

Thanks for the replies. I am feeling a little better now! Yes, we are in a bad situation since we don't have a dx. I do know that people with other lung issues use HTS. My dad, a cardiologist, recommended we try it as well (I often remind him the heart is his specialty but he counters that with his grandson is his specialty!). I am mostly for it because of the lack of side affects so even if it doesn't help him, it won't hurt him. He is so thick with mucus, I cannot see how it won't help. I am glad albuterol doesn't seem to cause the scratchy throat but of course it makes me wonder what is, maybe just weeks on end of coughing.
My husband is going to call the doctor tomorrow. Phew, that's a load off of me. He will ask her the tough questions which I think will help her to see that we are a team and on the same page with all of this. He can be the hard dad and let the crazy mom get a rest! He is going to ask for saline and ask if we can re-culture to see what is growing. I still have my theory that there might be something else in there and he may eventually need that bronchoscopy but at least a culture might show that the staph is either gone or needs a different abx. I cannot wait for this saga to end. Of course, I know it might not be gone for good but this round of infection has gone on way too long. Thanks for hanging in there with me, I am sure my posts are getting very boring, always saying the same thing. cough cough cough!

mom2owen · Apr 15, 2011

Thanks for the replies. I am feeling a little better now! Yes, we are in a bad situation since we don't have a dx. I do know that people with other lung issues use HTS. My dad, a cardiologist, recommended we try it as well (I often remind him the heart is his specialty but he counters that with his grandson is his specialty!). I am mostly for it because of the lack of side affects so even if it doesn't help him, it won't hurt him. He is so thick with mucus, I cannot see how it won't help. I am glad albuterol doesn't seem to cause the scratchy throat but of course it makes me wonder what is, maybe just weeks on end of coughing.
 My husband is going to call the doctor tomorrow. Phew, that's a load off of me. He will ask her the tough questions which I think will help her to see that we are a team and on the same page with all of this. He can be the hard dad and let the crazy mom get a rest! He is going to ask for saline and ask if we can re-culture to see what is growing. I still have my theory that there might be something else in there and he may eventually need that bronchoscopy but at least a culture might show that the staph is either gone or needs a different abx. I cannot wait for this saga to end. Of course, I know it might not be gone for good but this round of infection has gone on way too long. Thanks for hanging in there with me, I am sure my posts are getting very boring, always saying the same thing. cough cough cough!

threebabies · Apr 15, 2011

I totally feel your frustration. We went through a similar experience with my daughter. It happened twice once last year. I pushed until they finally gave her a bronchoscopy. It showed she was growing PA and H flu. They gave her IV and she has been on tobi ever since. A few months ago she was put on IV at the hospital for Serratia. She wasn't getting better they did another bronchi. It showed she was growing Steno and aspergillus. She was put on bactrim. Now her cultures just came back serratia is still there. I knew it wasn't the right antibiotic. The doc insisted it was. I agree with the other posters you know your child better then anyone. I noticed that these cf doctors are pretty matter of fact about cf issue. Meanwhile when these issue arise with our children the distress and anxiety is overwhelming. My daughter definitely does not culture everything she grow. maybe that maybe the case with Owen. Also I agree with Rebjane just because a bacteria is sensitive doesn't mean clinically it will work. Which I just recently found out. Follow your gut and push for more solutions.

Gina
Mom to Sophia 3, Peter and Gavin 21 months all w/cf df508 & py849x

threebabies · Apr 15, 2011

I totally feel your frustration. We went through a similar experience with my daughter. It happened twice once last year. I pushed until they finally gave her a bronchoscopy. It showed she was growing PA and H flu. They gave her IV and she has been on tobi ever since. A few months ago she was put on IV at the hospital for Serratia. She wasn't getting better they did another bronchi. It showed she was growing Steno and aspergillus. She was put on bactrim. Now her cultures just came back serratia is still there. I knew it wasn't the right antibiotic. The doc insisted it was. I agree with the other posters you know your child better then anyone. I noticed that these cf doctors are pretty matter of fact about cf issue. Meanwhile when these issue arise with our children the distress and anxiety is overwhelming. My daughter definitely does not culture everything she grow. maybe that maybe the case with Owen. Also I agree with Rebjane just because a bacteria is sensitive doesn't mean clinically it will work. Which I just recently found out. Follow your gut and push for more solutions.

Gina
Mom to Sophia 3, Peter and Gavin 21 months all w/cf df508 & py849x

threebabies · Apr 15, 2011

I totally feel your frustration. We went through a similar experience with my daughter. It happened twice once last year. I pushed until they finally gave her a bronchoscopy. It showed she was growing PA and H flu. They gave her IV and she has been on tobi ever since. A few months ago she was put on IV at the hospital for Serratia. She wasn't getting better they did another bronchi. It showed she was growing Steno and aspergillus. She was put on bactrim. Now her cultures just came back serratia is still there. I knew it wasn't the right antibiotic. The doc insisted it was. I agree with the other posters you know your child better then anyone. I noticed that these cf doctors are pretty matter of fact about cf issue. Meanwhile when these issue arise with our children the distress and anxiety is overwhelming. My daughter definitely does not culture everything she grow. maybe that maybe the case with Owen. Also I agree with Rebjane just because a bacteria is sensitive doesn't mean clinically it will work. Which I just recently found out. Follow your gut and push for more solutions.
 
 Gina
 Mom to Sophia 3, Peter and Gavin 21 months all w/cf df508 & py849x

edan · Apr 15, 2011

Hi,

I can't add anything to cultures as I am new to it myself, however, I can tell you how the meds affect my daughter if that helps...

HTS - by far the #1 treatment when she has a cold. I have been able to experiment A LOT this year as she started preschool and had one cold after another. HTS brings more up than xopanex, albuterol or pulmozyme for her. Hands down this is my drug/non drug of choice. I may have some of the details wrong, but you can find a study somewhere where they had babies with bronchitis/pneumonia neb 3% saline in the hospital and on average they got out earlier than those who did not. These were babies without CF.

xopanex - gives my daughter a hoarsy cough if I use it too often.

albuterol - makes her heart "beep" (her words) if we use it 2+ times per day for a few days in a row.

pulmozyme - ?can you get this one? gave her a runny nose/scratchy voice for the first week, then back to normal.

Good luck. I feel for you in your search for the right answers.

edan · Apr 15, 2011

Hi,

I can't add anything to cultures as I am new to it myself, however, I can tell you how the meds affect my daughter if that helps...

HTS - by far the #1 treatment when she has a cold. I have been able to experiment A LOT this year as she started preschool and had one cold after another. HTS brings more up than xopanex, albuterol or pulmozyme for her. Hands down this is my drug/non drug of choice. I may have some of the details wrong, but you can find a study somewhere where they had babies with bronchitis/pneumonia neb 3% saline in the hospital and on average they got out earlier than those who did not. These were babies without CF.

xopanex - gives my daughter a hoarsy cough if I use it too often.

albuterol - makes her heart "beep" (her words) if we use it 2+ times per day for a few days in a row.

pulmozyme - ?can you get this one? gave her a runny nose/scratchy voice for the first week, then back to normal.

Good luck. I feel for you in your search for the right answers.

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