• Profile photo of everly25everly25
    Member
    #171205139124

    Thank you all so much for your advice and your understanding. I do not think this has an asthma component to it. Sometimes actually exercising like taking the dogs out for a walk or riding his bike will somehow lessen the cough. Showers and cold air also seem to help. He doesn’t feel tight or wheezy and inhalers seem to have no effect on this cough. He has been doing the netty pot since age 5. I think things get really clogged for him and usually not a lot comes out even when he blows his nose.

    One other question is when you are culturing something that makes you cough, can it just make you cough or does it make you feel sick, feverish as well? He just finished a course of levaquin ,because of his liver it was 500 mg every other day for 10 doses. He finished a week ago, can you start coughing again that quickly? While on the levaquin he would still cough, mainly morning and night, but it was more manageable and would stop. Right now it just goes on and on. I do wonder about a seasonal component as it is always this week of Sept he coughs, but he has had allergy testing and it was negative. Can there still be a seasonal component? I just worry about more antibiotics due to his liver and killing the staph to have it lead to a new strain of something.

    Also Lost Miller thank you for the idea on the sinus rinses with antibiotics. After all his surgeries we tried that but it didn’t seem to have a dramatic effect on him. I have heard of the nebulized ones and will make an appt with the ENT to check in to that. It just takes forever to see that guy and he is coughing and missing school now. :-(

    Profile photo of everly25everly25
    Member
    #171205274226

    Thank you all so much for your advice and your understanding. I do not think this has an asthma component to it. Sometimes actually exercising like taking the dogs out for a walk or riding his bike will somehow lessen the cough. Showers and cold air also seem to help. He doesn’t feel tight or wheezy and inhalers seem to have no effect on this cough. He has been doing the netty pot since age 5. I think things get really clogged for him and usually not a lot comes out even when he blows his nose.

    One other question is when you are culturing something that makes you cough, can it just make you cough or does it make you feel sick, feverish as well? He just finished a course of levaquin ,because of his liver it was 500 mg every other day for 10 doses. He finished a week ago, can you start coughing again that quickly? While on the levaquin he would still cough, mainly morning and night, but it was more manageable and would stop. Right now it just goes on and on. I do wonder about a seasonal component as it is always this week of Sept he coughs, but he has had allergy testing and it was negative. Can there still be a seasonal component? I just worry about more antibiotics due to his liver and killing the staph to have it lead to a new strain of something.

    Also Lost Miller thank you for the idea on the sinus rinses with antibiotics. After all his surgeries we tried that but it didn’t seem to have a dramatic effect on him. I have heard of the nebulized ones and will make an appt with the ENT to check in to that. It just takes forever to see that guy and he is coughing and missing school now. :-(

    Profile photo of everly25everly25
    Member
    #171205405541

    Thank you all so much for your advice and your understanding. I do not think this has an asthma component to it. Sometimes actually exercising like taking the dogs out for a walk or riding his bike will somehow lessen the cough. Showers and cold air also seem to help. He doesn’t feel tight or wheezy and inhalers seem to have no effect on this cough. He has been doing the netty pot since age 5. I think things get really clogged for him and usually not a lot comes out even when he blows his nose.

    One other question is when you are culturing something that makes you cough, can it just make you cough or does it make you feel sick, feverish as well? He just finished a course of levaquin ,because of his liver it was 500 mg every other day for 10 doses. He finished a week ago, can you start coughing again that quickly? While on the levaquin he would still cough, mainly morning and night, but it was more manageable and would stop. Right now it just goes on and on. I do wonder about a seasonal component as it is always this week of Sept he coughs, but he has had allergy testing and it was negative. Can there still be a seasonal component? I just worry about more antibiotics due to his liver and killing the staph to have it lead to a new strain of something.

    Also Lost Miller thank you for the idea on the sinus rinses with antibiotics. After all his surgeries we tried that but it didn’t seem to have a dramatic effect on him. I have heard of the nebulized ones and will make an appt with the ENT to check in to that. It just takes forever to see that guy and he is coughing and missing school now. :-(

    Profile photo of SanjeSanje
    Member
    #171205139122

    That happens with me on a seasonal level – when seasons chg here in NY I hack like a seal for 2-3 weeks this July/Aug it lasted more like 4-5 weeks my chest hurts, my stomach muscles hurt. My sinus doctor told me to use a over the counter sinus relief pill and it helped somewhat,also use the nettie pot best thing ever, my sinus are also dry as I sleep with oxygen at night so in the morning it’s a flush, then the ARY sticks for some lubrication.But my pfts are only at 40% but I feel it is asthma related for me.

    Profile photo of SanjeSanje
    Member
    #171205274224

    That happens with me on a seasonal level – when seasons chg here in NY I hack like a seal for 2-3 weeks this July/Aug it lasted more like 4-5 weeks my chest hurts, my stomach muscles hurt. My sinus doctor told me to use a over the counter sinus relief pill and it helped somewhat,also use the nettie pot best thing ever, my sinus are also dry as I sleep with oxygen at night so in the morning it’s a flush, then the ARY sticks for some lubrication.But my pfts are only at 40% but I feel it is asthma related for me.

    Profile photo of SanjeSanje
    Member
    #171205405539

    That happens with me on a seasonal level – when seasons chg here in NY I hack like a seal for 2-3 weeks this July/Aug it lasted more like 4-5 weeks my chest hurts, my stomach muscles hurt. My sinus doctor told me to use a over the counter sinus relief pill and it helped somewhat,also use the nettie pot best thing ever, my sinus are also dry as I sleep with oxygen at night so in the morning it’s a flush, then the ARY sticks for some lubrication.But my pfts are only at 40% but I feel it is asthma related for me.

    Profile photo of tootsitootsi
    Member
    #171205139119

    This sounds horrible, I hate and dread that dry, unproductive, post nasal drip cough I get when I am getting sick, I cant imagine dealing with it all the time

    The only thing that came to my mind, and I am not sure how well they/it works, since you already do the sinus flushes (does he like the nettie pot more than the squeezer one? I like being able to really push that water into my sinus’s and flush it out rather than just running water through it.)

    But has he ever done just sinus treatments? I have seen nebulizers just for the sinus’s and maybe you could do like pulmozyme and an inhaled antibiotic like TOBI or something just for the sinuses? Im not sure on the protocol for that kinda stuff, I just know I have seen it.

    Also I have heard of some people who do a mixture with TOBI vials in their actual sinus flush rinses, so when they are flushing, the antibiotic is being left up in the sinus until the next rinse essenetially.

    Hope maybe someone can give you some pointers. I have seen another CF’er have sinus flushes, with high pfts too, and it just sounds horrible b/c its hard to flush those out w/o surgery after surgery.

    Good luck and best wishes.

    Profile photo of tootsitootsi
    Member
    #171205274221

    This sounds horrible, I hate and dread that dry, unproductive, post nasal drip cough I get when I am getting sick, I cant imagine dealing with it all the time

    The only thing that came to my mind, and I am not sure how well they/it works, since you already do the sinus flushes (does he like the nettie pot more than the squeezer one? I like being able to really push that water into my sinus’s and flush it out rather than just running water through it.)

    But has he ever done just sinus treatments? I have seen nebulizers just for the sinus’s and maybe you could do like pulmozyme and an inhaled antibiotic like TOBI or something just for the sinuses? Im not sure on the protocol for that kinda stuff, I just know I have seen it.

    Also I have heard of some people who do a mixture with TOBI vials in their actual sinus flush rinses, so when they are flushing, the antibiotic is being left up in the sinus until the next rinse essenetially.

    Hope maybe someone can give you some pointers. I have seen another CF’er have sinus flushes, with high pfts too, and it just sounds horrible b/c its hard to flush those out w/o surgery after surgery.

    Good luck and best wishes.

    Profile photo of tootsitootsi
    Member
    #171205405536

    This sounds horrible, I hate and dread that dry, unproductive, post nasal drip cough I get when I am getting sick, I cant imagine dealing with it all the time

    The only thing that came to my mind, and I am not sure how well they/it works, since you already do the sinus flushes (does he like the nettie pot more than the squeezer one? I like being able to really push that water into my sinus’s and flush it out rather than just running water through it.)

    But has he ever done just sinus treatments? I have seen nebulizers just for the sinus’s and maybe you could do like pulmozyme and an inhaled antibiotic like TOBI or something just for the sinuses? Im not sure on the protocol for that kinda stuff, I just know I have seen it.

    Also I have heard of some people who do a mixture with TOBI vials in their actual sinus flush rinses, so when they are flushing, the antibiotic is being left up in the sinus until the next rinse essenetially.

    Hope maybe someone can give you some pointers. I have seen another CF’er have sinus flushes, with high pfts too, and it just sounds horrible b/c its hard to flush those out w/o surgery after surgery.

    Good luck and best wishes.

    Profile photo of ryannie55ryannie55
    Member
    #171205139115

    Does he feel wheezy or tight in his chest with the dry cough? When my asthma is acting up I generally have a dry unproductive cough, but it usually has some wheezing or chest tightness to go along with it. Maybe that’s something to look into?

    Profile photo of ryannie55ryannie55
    Member
    #171205274218

    Does he feel wheezy or tight in his chest with the dry cough? When my asthma is acting up I generally have a dry unproductive cough, but it usually has some wheezing or chest tightness to go along with it. Maybe that’s something to look into?

    Profile photo of ryannie55ryannie55
    Member
    #171205405533

    Does he feel wheezy or tight in his chest with the dry cough? When my asthma is acting up I generally have a dry unproductive cough, but it usually has some wheezing or chest tightness to go along with it. Maybe that’s something to look into?

    Profile photo of austisuaustisu
    Member
    #171205139109

    DS had elevated liver levels as a baby and was put on Actigall as a baby.

    As for the dry cough — have they done a recent culture? When DS was about 4 or 5 he developed dry, throat clearing cough, which I thought was more of a habit. Turns out he was culturing Steno. Maltophilia. Was put on an ABX it was sensitive to and the cough disappeared.

    We’ve also found that doing regular sinus rinses seem to help as well.

    Profile photo of austisuaustisu
    Member
    #171205274214

    DS had elevated liver levels as a baby and was put on Actigall as a baby.

    As for the dry cough — have they done a recent culture? When DS was about 4 or 5 he developed dry, throat clearing cough, which I thought was more of a habit. Turns out he was culturing Steno. Maltophilia. Was put on an ABX it was sensitive to and the cough disappeared.

    We’ve also found that doing regular sinus rinses seem to help as well.

    Profile photo of austisuaustisu
    Member
    #171205405529

    DS had elevated liver levels as a baby and was put on Actigall as a baby.

    As for the dry cough — have they done a recent culture? When DS was about 4 or 5 he developed dry, throat clearing cough, which I thought was more of a habit. Turns out he was culturing Steno. Maltophilia. Was put on an ABX it was sensitive to and the cough disappeared.

    We’ve also found that doing regular sinus rinses seem to help as well.

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