ehtansky21
New member
This may be a long shot, but is she possibly dealing with post nasal drip???
<br />
<br />blessings,
<br />missa
<br />
<br />blessings,
<br />missa
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
daughter keeps getting sick!!
- Thread starter momofcfprincess
- Start date
crickit715
New member
i would definatley discuss this with her cf doc asap!! sounds like she has had a really hard time this year and now they need to get to the bottom of it! sometimes when they do a bronch they find a "hidden" bug that the throat cultures didnt pick up that could be reeking havoc!! good luck!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
crickit715
New member
i would definatley discuss this with her cf doc asap!! sounds like she has had a really hard time this year and now they need to get to the bottom of it! sometimes when they do a bronch they find a "hidden" bug that the throat cultures didnt pick up that could be reeking havoc!! good luck!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
crickit715
New member
i would definatley discuss this with her cf doc asap!! sounds like she has had a really hard time this year and now they need to get to the bottom of it! sometimes when they do a bronch they find a "hidden" bug that the throat cultures didnt pick up that could be reeking havoc!! good luck!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
I would ask to see an ENT. If she has a sinus infection- and you can't always tell by a stuffy nose, etc. -sometimes there are almost no symptoms, or you -or she- may not notice the symptoms because they come on so gradually- then she would have the coughing while laying down at night, <i>and</i> she could be reinfecting her lungs. Sinus infections can often improve, but not totally resolve, with oral or iv meds. Sinus rinses have helped me greatly. Also, ask about acid reflux. That can get worse when you lay down, and can also affect her lungs.
Also, have you had her allergy tested? Perhaps you have introduced something new into your home that hasn't occurred to you? I was surprised with finding out I had a feather allergy, and I was sleeping under a goosedown comforter. When it went, I improved. She may also have developed an allergy over time- it's worth checking out. Every little bit helps! Allergies= inflamation, inflamation= trapped garbage in the lungs from narrowed airways, which= more infections (at least for me).
And lastly, I would definitely ask about hypertonic saline. If she has tried the 7% (Hypersal) and she didn't tolerate it well, ask about trying 3% instead. The first 2 or 3 weeks were absolutely NO FUN, and I didn't want to keep going with it (just the awful coughing, I didn't have a bad shortness of breath reaction), but I did, got a bunch of garbage out, and I stay soooo much healthier with it.
I think that's everything I thought of to post. I hope you find a solution to this roller coaster you are on now very soon.
I take that back, are they not doing a culture everytime she goes on IV's to find out what's growing in there? That would be the first thing I would want if they aren't! They could just be knocking the infection down, but not far enough, if they aren't using the most appropriate meds for what she has in her lungs.
Also, have you had her allergy tested? Perhaps you have introduced something new into your home that hasn't occurred to you? I was surprised with finding out I had a feather allergy, and I was sleeping under a goosedown comforter. When it went, I improved. She may also have developed an allergy over time- it's worth checking out. Every little bit helps! Allergies= inflamation, inflamation= trapped garbage in the lungs from narrowed airways, which= more infections (at least for me).
And lastly, I would definitely ask about hypertonic saline. If she has tried the 7% (Hypersal) and she didn't tolerate it well, ask about trying 3% instead. The first 2 or 3 weeks were absolutely NO FUN, and I didn't want to keep going with it (just the awful coughing, I didn't have a bad shortness of breath reaction), but I did, got a bunch of garbage out, and I stay soooo much healthier with it.
I think that's everything I thought of to post. I hope you find a solution to this roller coaster you are on now very soon.
I take that back, are they not doing a culture everytime she goes on IV's to find out what's growing in there? That would be the first thing I would want if they aren't! They could just be knocking the infection down, but not far enough, if they aren't using the most appropriate meds for what she has in her lungs.
I would ask to see an ENT. If she has a sinus infection- and you can't always tell by a stuffy nose, etc. -sometimes there are almost no symptoms, or you -or she- may not notice the symptoms because they come on so gradually- then she would have the coughing while laying down at night, <i>and</i> she could be reinfecting her lungs. Sinus infections can often improve, but not totally resolve, with oral or iv meds. Sinus rinses have helped me greatly. Also, ask about acid reflux. That can get worse when you lay down, and can also affect her lungs.
Also, have you had her allergy tested? Perhaps you have introduced something new into your home that hasn't occurred to you? I was surprised with finding out I had a feather allergy, and I was sleeping under a goosedown comforter. When it went, I improved. She may also have developed an allergy over time- it's worth checking out. Every little bit helps! Allergies= inflamation, inflamation= trapped garbage in the lungs from narrowed airways, which= more infections (at least for me).
And lastly, I would definitely ask about hypertonic saline. If she has tried the 7% (Hypersal) and she didn't tolerate it well, ask about trying 3% instead. The first 2 or 3 weeks were absolutely NO FUN, and I didn't want to keep going with it (just the awful coughing, I didn't have a bad shortness of breath reaction), but I did, got a bunch of garbage out, and I stay soooo much healthier with it.
I think that's everything I thought of to post. I hope you find a solution to this roller coaster you are on now very soon.
I take that back, are they not doing a culture everytime she goes on IV's to find out what's growing in there? That would be the first thing I would want if they aren't! They could just be knocking the infection down, but not far enough, if they aren't using the most appropriate meds for what she has in her lungs.
Also, have you had her allergy tested? Perhaps you have introduced something new into your home that hasn't occurred to you? I was surprised with finding out I had a feather allergy, and I was sleeping under a goosedown comforter. When it went, I improved. She may also have developed an allergy over time- it's worth checking out. Every little bit helps! Allergies= inflamation, inflamation= trapped garbage in the lungs from narrowed airways, which= more infections (at least for me).
And lastly, I would definitely ask about hypertonic saline. If she has tried the 7% (Hypersal) and she didn't tolerate it well, ask about trying 3% instead. The first 2 or 3 weeks were absolutely NO FUN, and I didn't want to keep going with it (just the awful coughing, I didn't have a bad shortness of breath reaction), but I did, got a bunch of garbage out, and I stay soooo much healthier with it.
I think that's everything I thought of to post. I hope you find a solution to this roller coaster you are on now very soon.
I take that back, are they not doing a culture everytime she goes on IV's to find out what's growing in there? That would be the first thing I would want if they aren't! They could just be knocking the infection down, but not far enough, if they aren't using the most appropriate meds for what she has in her lungs.
I would ask to see an ENT. If she has a sinus infection- and you can't always tell by a stuffy nose, etc. -sometimes there are almost no symptoms, or you -or she- may not notice the symptoms because they come on so gradually- then she would have the coughing while laying down at night, <i>and</i> she could be reinfecting her lungs. Sinus infections can often improve, but not totally resolve, with oral or iv meds. Sinus rinses have helped me greatly. Also, ask about acid reflux. That can get worse when you lay down, and can also affect her lungs.
<br />
<br />Also, have you had her allergy tested? Perhaps you have introduced something new into your home that hasn't occurred to you? I was surprised with finding out I had a feather allergy, and I was sleeping under a goosedown comforter. When it went, I improved. She may also have developed an allergy over time- it's worth checking out. Every little bit helps! Allergies= inflamation, inflamation= trapped garbage in the lungs from narrowed airways, which= more infections (at least for me).
<br />
<br />And lastly, I would definitely ask about hypertonic saline. If she has tried the 7% (Hypersal) and she didn't tolerate it well, ask about trying 3% instead. The first 2 or 3 weeks were absolutely NO FUN, and I didn't want to keep going with it (just the awful coughing, I didn't have a bad shortness of breath reaction), but I did, got a bunch of garbage out, and I stay soooo much healthier with it.
<br />
<br />I think that's everything I thought of to post. I hope you find a solution to this roller coaster you are on now very soon.
<br />
<br />I take that back, are they not doing a culture everytime she goes on IV's to find out what's growing in there? That would be the first thing I would want if they aren't! They could just be knocking the infection down, but not far enough, if they aren't using the most appropriate meds for what she has in her lungs.
<br />
<br />
<br />
<br />Also, have you had her allergy tested? Perhaps you have introduced something new into your home that hasn't occurred to you? I was surprised with finding out I had a feather allergy, and I was sleeping under a goosedown comforter. When it went, I improved. She may also have developed an allergy over time- it's worth checking out. Every little bit helps! Allergies= inflamation, inflamation= trapped garbage in the lungs from narrowed airways, which= more infections (at least for me).
<br />
<br />And lastly, I would definitely ask about hypertonic saline. If she has tried the 7% (Hypersal) and she didn't tolerate it well, ask about trying 3% instead. The first 2 or 3 weeks were absolutely NO FUN, and I didn't want to keep going with it (just the awful coughing, I didn't have a bad shortness of breath reaction), but I did, got a bunch of garbage out, and I stay soooo much healthier with it.
<br />
<br />I think that's everything I thought of to post. I hope you find a solution to this roller coaster you are on now very soon.
<br />
<br />I take that back, are they not doing a culture everytime she goes on IV's to find out what's growing in there? That would be the first thing I would want if they aren't! They could just be knocking the infection down, but not far enough, if they aren't using the most appropriate meds for what she has in her lungs.
<br />
<br />
S
sdelorenzo
Guest
My daughter coughed at night too. She was getting a g-button a few years ago when her gi dr asked about reflux. I said as far as I knew she didn't have any signs of reflux. Turns out the testing showed bad reflux. Her cat scan also showed lung damage even though she always seemed like she didn't have lung issues. She got the Nissan fundoplication surgery and has done great since. She doesn't wake up coughing in the past three years after getting the fundo. Just an idea..
Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 20 months and Paige, 2 weeks both without cf
Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 20 months and Paige, 2 weeks both without cf
S
sdelorenzo
Guest
My daughter coughed at night too. She was getting a g-button a few years ago when her gi dr asked about reflux. I said as far as I knew she didn't have any signs of reflux. Turns out the testing showed bad reflux. Her cat scan also showed lung damage even though she always seemed like she didn't have lung issues. She got the Nissan fundoplication surgery and has done great since. She doesn't wake up coughing in the past three years after getting the fundo. Just an idea..
Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 20 months and Paige, 2 weeks both without cf
Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 20 months and Paige, 2 weeks both without cf
S
sdelorenzo
Guest
My daughter coughed at night too. She was getting a g-button a few years ago when her gi dr asked about reflux. I said as far as I knew she didn't have any signs of reflux. Turns out the testing showed bad reflux. Her cat scan also showed lung damage even though she always seemed like she didn't have lung issues. She got the Nissan fundoplication surgery and has done great since. She doesn't wake up coughing in the past three years after getting the fundo. Just an idea..
<br />Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 20 months and Paige, 2 weeks both without cf
<br />Sharon, mom of Sophia, 9 and Jack, 7 both with cf, Grant, 20 months and Paige, 2 weeks both without cf
momofcfprincess
New member
Thank you for all the responses. It has been a great help. I feel like I am always trying to play detective and figure out what I can do next to make her better. I called the CF clinic Again and talked to the nurse about some of your suggestions and also asked her about a certain bacteria she has been culturing for a year or longer. It is Stenotrophomonas maltophilia.
[Here is the recent health news about it:
A new study links flare-ups of cystic fibrosis to a chronic bacterial infection, a finding that could give physicians new insight into the disease and offer a new target for medication.
The germ in question is called Stenotrophomonas maltophilia.
"Our study showed that chronic infection with S. maltophilia, which was previously not regarded as prognostically significant, may have a real impact on the progression of CF in patients," said study co-author Dr. Valerie Waters, an assistant professor of infectious diseases at the Hospital for Sick Children in Toronto.
We started her on Bactrim and will do that for a week and if her night time cough doesnt get better, she will go in the hospital. But I think she seems to be doing a bit better.
I think what I have learned the most is that what I should concentrate the most on is her cultureresults to address what ever different bacteria is growing.
The other thing I will be doing is making sure they do a follow up culture after all hospiatal iv meds to see if the bacteria is still being cultured. From what I have read it sounds like most of your doctors DO a follow up culture to make sure the bacteria is gone right????
[Here is the recent health news about it:
A new study links flare-ups of cystic fibrosis to a chronic bacterial infection, a finding that could give physicians new insight into the disease and offer a new target for medication.
The germ in question is called Stenotrophomonas maltophilia.
"Our study showed that chronic infection with S. maltophilia, which was previously not regarded as prognostically significant, may have a real impact on the progression of CF in patients," said study co-author Dr. Valerie Waters, an assistant professor of infectious diseases at the Hospital for Sick Children in Toronto.
We started her on Bactrim and will do that for a week and if her night time cough doesnt get better, she will go in the hospital. But I think she seems to be doing a bit better.
I think what I have learned the most is that what I should concentrate the most on is her cultureresults to address what ever different bacteria is growing.
The other thing I will be doing is making sure they do a follow up culture after all hospiatal iv meds to see if the bacteria is still being cultured. From what I have read it sounds like most of your doctors DO a follow up culture to make sure the bacteria is gone right????
momofcfprincess
New member
Thank you for all the responses. It has been a great help. I feel like I am always trying to play detective and figure out what I can do next to make her better. I called the CF clinic Again and talked to the nurse about some of your suggestions and also asked her about a certain bacteria she has been culturing for a year or longer. It is Stenotrophomonas maltophilia.
[Here is the recent health news about it:
A new study links flare-ups of cystic fibrosis to a chronic bacterial infection, a finding that could give physicians new insight into the disease and offer a new target for medication.
The germ in question is called Stenotrophomonas maltophilia.
"Our study showed that chronic infection with S. maltophilia, which was previously not regarded as prognostically significant, may have a real impact on the progression of CF in patients," said study co-author Dr. Valerie Waters, an assistant professor of infectious diseases at the Hospital for Sick Children in Toronto.
We started her on Bactrim and will do that for a week and if her night time cough doesnt get better, she will go in the hospital. But I think she seems to be doing a bit better.
I think what I have learned the most is that what I should concentrate the most on is her cultureresults to address what ever different bacteria is growing.
The other thing I will be doing is making sure they do a follow up culture after all hospiatal iv meds to see if the bacteria is still being cultured. From what I have read it sounds like most of your doctors DO a follow up culture to make sure the bacteria is gone right????
[Here is the recent health news about it:
A new study links flare-ups of cystic fibrosis to a chronic bacterial infection, a finding that could give physicians new insight into the disease and offer a new target for medication.
The germ in question is called Stenotrophomonas maltophilia.
"Our study showed that chronic infection with S. maltophilia, which was previously not regarded as prognostically significant, may have a real impact on the progression of CF in patients," said study co-author Dr. Valerie Waters, an assistant professor of infectious diseases at the Hospital for Sick Children in Toronto.
We started her on Bactrim and will do that for a week and if her night time cough doesnt get better, she will go in the hospital. But I think she seems to be doing a bit better.
I think what I have learned the most is that what I should concentrate the most on is her cultureresults to address what ever different bacteria is growing.
The other thing I will be doing is making sure they do a follow up culture after all hospiatal iv meds to see if the bacteria is still being cultured. From what I have read it sounds like most of your doctors DO a follow up culture to make sure the bacteria is gone right????
momofcfprincess
New member
Thank you for all the responses. It has been a great help. I feel like I am always trying to play detective and figure out what I can do next to make her better. I called the CF clinic Again and talked to the nurse about some of your suggestions and also asked her about a certain bacteria she has been culturing for a year or longer. It is Stenotrophomonas maltophilia.
<br />
<br />[Here is the recent health news about it:
<br />
<br />
<br /> A new study links flare-ups of cystic fibrosis to a chronic bacterial infection, a finding that could give physicians new insight into the disease and offer a new target for medication.
<br />
<br />The germ in question is called Stenotrophomonas maltophilia.
<br />
<br />"Our study showed that chronic infection with S. maltophilia, which was previously not regarded as prognostically significant, may have a real impact on the progression of CF in patients," said study co-author Dr. Valerie Waters, an assistant professor of infectious diseases at the Hospital for Sick Children in Toronto.
<br />
<br />We started her on Bactrim and will do that for a week and if her night time cough doesnt get better, she will go in the hospital. But I think she seems to be doing a bit better.
<br />
<br />I think what I have learned the most is that what I should concentrate the most on is her cultureresults to address what ever different bacteria is growing.
<br />
<br />The other thing I will be doing is making sure they do a follow up culture after all hospiatal iv meds to see if the bacteria is still being cultured. From what I have read it sounds like most of your doctors DO a follow up culture to make sure the bacteria is gone right????
<br />
<br />[Here is the recent health news about it:
<br />
<br />
<br /> A new study links flare-ups of cystic fibrosis to a chronic bacterial infection, a finding that could give physicians new insight into the disease and offer a new target for medication.
<br />
<br />The germ in question is called Stenotrophomonas maltophilia.
<br />
<br />"Our study showed that chronic infection with S. maltophilia, which was previously not regarded as prognostically significant, may have a real impact on the progression of CF in patients," said study co-author Dr. Valerie Waters, an assistant professor of infectious diseases at the Hospital for Sick Children in Toronto.
<br />
<br />We started her on Bactrim and will do that for a week and if her night time cough doesnt get better, she will go in the hospital. But I think she seems to be doing a bit better.
<br />
<br />I think what I have learned the most is that what I should concentrate the most on is her cultureresults to address what ever different bacteria is growing.
<br />
<br />The other thing I will be doing is making sure they do a follow up culture after all hospiatal iv meds to see if the bacteria is still being cultured. From what I have read it sounds like most of your doctors DO a follow up culture to make sure the bacteria is gone right????
When DS first cultured Steno. Malt. He had this weird, throat clearing cough that we just thought was a weird habit. The local CF clinic told us they normally don't treat steno malt; however, his CF doctor in the City put him on Septra. When I asked how long he'd be on it, we were told he'd be on it for awhile. The weird cough went away almost immediately.
When DS first cultured Steno. Malt. He had this weird, throat clearing cough that we just thought was a weird habit. The local CF clinic told us they normally don't treat steno malt; however, his CF doctor in the City put him on Septra. When I asked how long he'd be on it, we were told he'd be on it for awhile. The weird cough went away almost immediately.
When DS first cultured Steno. Malt. He had this weird, throat clearing cough that we just thought was a weird habit. The local CF clinic told us they normally don't treat steno malt; however, his CF doctor in the City put him on Septra. When I asked how long he'd be on it, we were told he'd be on it for awhile. The weird cough went away almost immediately.
crickit715
New member
I think when you become the mom of a cf'er you have a tendency to also become "Sherlock Holmes"!!...but thats our job to protect our little ones and with so many differing views from the cf physican community i feel it is necessary to not take what our docs say and do at "face value". we are the ones who know our kids best!! .....and, yes, our doc has always followed up with a culture after hospialization and iv therapy.
crickit715
New member
I think when you become the mom of a cf'er you have a tendency to also become "Sherlock Holmes"!!...but thats our job to protect our little ones and with so many differing views from the cf physican community i feel it is necessary to not take what our docs say and do at "face value". we are the ones who know our kids best!! .....and, yes, our doc has always followed up with a culture after hospialization and iv therapy.
crickit715
New member
I think when you become the mom of a cf'er you have a tendency to also become "Sherlock Holmes"!!...but thats our job to protect our little ones and with so many differing views from the cf physican community i feel it is necessary to not take what our docs say and do at "face value". we are the ones who know our kids best!! .....and, yes, our doc has always followed up with a culture after hospialization and iv therapy.