• Profile photo of mag6125mag6125
    Member
    #171205145651

    I agree with Caitlin, a lot of the time they prescribe albuterol/HTS hand in hand because the HTS can make CFers very wheezy or cause bronchiospams due to its irritating effects and the albuterol counteracts that to open the airways and make it easier to cough up the junk. If you’re worried about side effects like jitteriness/etc maybe you can try Xopenex, it does the same thing. I switched to it because doing albuterol 3-4xdaily made my whole body shake all day, I’ve had no problems with Xopenex and I actually feel like it works better. Good luck with everything and I hope some of our responses helped out!

    Profile photo of mag6125mag6125
    Member
    #171205279893

    I agree with Caitlin, a lot of the time they prescribe albuterol/HTS hand in hand because the HTS can make CFers very wheezy or cause bronchiospams due to its irritating effects and the albuterol counteracts that to open the airways and make it easier to cough up the junk. If you’re worried about side effects like jitteriness/etc maybe you can try Xopenex, it does the same thing. I switched to it because doing albuterol 3-4xdaily made my whole body shake all day, I’ve had no problems with Xopenex and I actually feel like it works better. Good luck with everything and I hope some of our responses helped out!

    Profile photo of mag6125mag6125
    Member
    #171205411179

    I agree with Caitlin, a lot of the time they prescribe albuterol/HTS hand in hand because the HTS can make CFers very wheezy or cause bronchiospams due to its irritating effects and the albuterol counteracts that to open the airways and make it easier to cough up the junk. If you’re worried about side effects like jitteriness/etc maybe you can try Xopenex, it does the same thing. I switched to it because doing albuterol 3-4xdaily made my whole body shake all day, I’ve had no problems with Xopenex and I actually feel like it works better. Good luck with everything and I hope some of our responses helped out!

    Profile photo of MCGrad2006MCGrad2006
    Member
    #171205145647

    I did not read every response, so I apologize if this is a repeat. You mention you would like her to be only on HTS when she is well…I could not handle just that. My lungs need the albuterol to open up because the HTS causes me to wheeze. So before you make that decision, try the HTS on its own. I think that the albuterol really helps in that sense.

    I am very healthy for a 26 CFer, I believe and I do treatments only once a day. What about doing that? And then if she is sick, do more. I never did treatments as a child because they were not really around (Pulmozyme at least) until I was about 10. I have been lucky enough to stay healthy with a lung function in the 80’s (even when I am sick).

    Profile photo of MCGrad2006MCGrad2006
    Member
    #171205279889

    I did not read every response, so I apologize if this is a repeat. You mention you would like her to be only on HTS when she is well…I could not handle just that. My lungs need the albuterol to open up because the HTS causes me to wheeze. So before you make that decision, try the HTS on its own. I think that the albuterol really helps in that sense.

    I am very healthy for a 26 CFer, I believe and I do treatments only once a day. What about doing that? And then if she is sick, do more. I never did treatments as a child because they were not really around (Pulmozyme at least) until I was about 10. I have been lucky enough to stay healthy with a lung function in the 80’s (even when I am sick).

    Profile photo of MCGrad2006MCGrad2006
    Member
    #171205411175

    I did not read every response, so I apologize if this is a repeat. You mention you would like her to be only on HTS when she is well…I could not handle just that. My lungs need the albuterol to open up because the HTS causes me to wheeze. So before you make that decision, try the HTS on its own. I think that the albuterol really helps in that sense.

    I am very healthy for a 26 CFer, I believe and I do treatments only once a day. What about doing that? And then if she is sick, do more. I never did treatments as a child because they were not really around (Pulmozyme at least) until I was about 10. I have been lucky enough to stay healthy with a lung function in the 80’s (even when I am sick).

    Profile photo of edanedan
    Member
    #171205145644

    Thanks for all the feedback!

    Lauren, regarding nebs, I boil between each use and let air dry, so I don’t think bacteria is an issue, plus I change the tubing 3x per week. I think she is gtting mostly virusus.

    Her height is 75th and weight is 57th, so healthy I think? Not sure where she is supposed to be actually.

    Edam

    Profile photo of edanedan
    Member
    #171205279887

    Thanks for all the feedback!

    Lauren, regarding nebs, I boil between each use and let air dry, so I don’t think bacteria is an issue, plus I change the tubing 3x per week. I think she is gtting mostly virusus.

    Her height is 75th and weight is 57th, so healthy I think? Not sure where she is supposed to be actually.

    Edam

    Profile photo of edanedan
    Member
    #171205411173

    Thanks for all the feedback!

    Lauren, regarding nebs, I boil between each use and let air dry, so I don’t think bacteria is an issue, plus I change the tubing 3x per week. I think she is gtting mostly virusus.

    Her height is 75th and weight is 57th, so healthy I think? Not sure where she is supposed to be actually.

    Edam

    Profile photo of GigglesGiggles
    Member
    #171205145643

    I think Lou Lou has some great suggestions. To know whether something is working or not is to do it and then not do it and see if there is a change. Although, with the drug Zithromax that works without seeing or feeling anything. But Albuterol is pretty much instantanious it either works or doesn’t. When I was younger and I was DX at age 2, I did not do any nebs cause they actually made me worse! The proof was the PFT that was done with nebs and without and I would blow worse when using the nebs before. So maybe that is the cause with your child. However now as an adult I can not live with out them! As far as cold after cold that is not good, her immune system is not fighting off the sickness which could mean she has an exacerbation but you said her lungs look clear in x-ray etc. Hmm.Don’t let doctors overpower you, if you think something is not right you fight for answers and solutions. Back in the day in the 70’s when I was born my parents were told not to do much but they gave me vitamins among other things they did for me because they thought proper nutrition was key. So now vitamins are vital, they were ahead of the curve. I am trying to just say you are the parent and you know your child and ask alot of questions, demand answers and solutions and if you can not get them switch to a different CF Center.

    Good luck!
    Jennifer 39 with CF and CFRD

    Profile photo of GigglesGiggles
    Member
    #171205279886

    I think Lou Lou has some great suggestions. To know whether something is working or not is to do it and then not do it and see if there is a change. Although, with the drug Zithromax that works without seeing or feeling anything. But Albuterol is pretty much instantanious it either works or doesn’t. When I was younger and I was DX at age 2, I did not do any nebs cause they actually made me worse! The proof was the PFT that was done with nebs and without and I would blow worse when using the nebs before. So maybe that is the cause with your child. However now as an adult I can not live with out them! As far as cold after cold that is not good, her immune system is not fighting off the sickness which could mean she has an exacerbation but you said her lungs look clear in x-ray etc. Hmm.Don’t let doctors overpower you, if you think something is not right you fight for answers and solutions. Back in the day in the 70’s when I was born my parents were told not to do much but they gave me vitamins among other things they did for me because they thought proper nutrition was key. So now vitamins are vital, they were ahead of the curve. I am trying to just say you are the parent and you know your child and ask alot of questions, demand answers and solutions and if you can not get them switch to a different CF Center.

    Good luck!
    Jennifer 39 with CF and CFRD

    Profile photo of GigglesGiggles
    Member
    #171205411172

    I think Lou Lou has some great suggestions. To know whether something is working or not is to do it and then not do it and see if there is a change. Although, with the drug Zithromax that works without seeing or feeling anything. But Albuterol is pretty much instantanious it either works or doesn’t. When I was younger and I was DX at age 2, I did not do any nebs cause they actually made me worse! The proof was the PFT that was done with nebs and without and I would blow worse when using the nebs before. So maybe that is the cause with your child. However now as an adult I can not live with out them! As far as cold after cold that is not good, her immune system is not fighting off the sickness which could mean she has an exacerbation but you said her lungs look clear in x-ray etc. Hmm.Don’t let doctors overpower you, if you think something is not right you fight for answers and solutions. Back in the day in the 70’s when I was born my parents were told not to do much but they gave me vitamins among other things they did for me because they thought proper nutrition was key. So now vitamins are vital, they were ahead of the curve. I am trying to just say you are the parent and you know your child and ask alot of questions, demand answers and solutions and if you can not get them switch to a different CF Center.

    Good luck!

    Jennifer 39 with CF and CFRD

    Profile photo of LouLouLouLou
    Participant
    #171205145641

    How about albuterol puffer instead of neb when she is well? Just using it before Vest to open the airways. Warwick always suggested if you doubted something to do a controlled, well documented study. You could make a chart. For 2 weeks document with albuterol and vest and for 2 weeks document with just vest. You could mark as follows. How many times she spontaneously coughs, when you break to encourage coughing (which you should be doing every 5 minutes) mark whether the cough sounds loose, productive but tight, or dry. Or whatever descriptions best desribe the various coughs she does. But come up with a system and mark an X on the grid for which type of cough she makes. I think with info you and your doc will be better informed to make a decision.

    Other things to think about is are you pausing the Vest every 5 minutes for her to clear otherwise its just shaking it around (and possibly deeper…not good)

    Also, is her weight as good as it was before she started this pattern of sickness. Maybe she’s on the low end of an exceptible BMI..not good.

    Are you using wet nebs by chance or worse dirty nebs which could be giving her more bacteria than she would have if she wasn’t nebbing at all.

    Profile photo of LouLouLouLou
    Participant
    #171205279884

    How about albuterol puffer instead of neb when she is well? Just using it before Vest to open the airways. Warwick always suggested if you doubted something to do a controlled, well documented study. You could make a chart. For 2 weeks document with albuterol and vest and for 2 weeks document with just vest. You could mark as follows. How many times she spontaneously coughs, when you break to encourage coughing (which you should be doing every 5 minutes) mark whether the cough sounds loose, productive but tight, or dry. Or whatever descriptions best desribe the various coughs she does. But come up with a system and mark an X on the grid for which type of cough she makes. I think with info you and your doc will be better informed to make a decision.

    Other things to think about is are you pausing the Vest every 5 minutes for her to clear otherwise its just shaking it around (and possibly deeper…not good)

    Also, is her weight as good as it was before she started this pattern of sickness. Maybe she’s on the low end of an exceptible BMI..not good.

    Are you using wet nebs by chance or worse dirty nebs which could be giving her more bacteria than she would have if she wasn’t nebbing at all.

    Profile photo of LouLouLouLou
    Participant
    #171205411170

    How about albuterol puffer instead of neb when she is well? Just using it before Vest to open the airways. Warwick always suggested if you doubted something to do a controlled, well documented study. You could make a chart. For 2 weeks document with albuterol and vest and for 2 weeks document with just vest. You could mark as follows. How many times she spontaneously coughs, when you break to encourage coughing (which you should be doing every 5 minutes) mark whether the cough sounds loose, productive but tight, or dry. Or whatever descriptions best desribe the various coughs she does. But come up with a system and mark an X on the grid for which type of cough she makes. I think with info you and your doc will be better informed to make a decision.

    Other things to think about is are you pausing the Vest every 5 minutes for her to clear otherwise its just shaking it around (and possibly deeper…not good)

    Also, is her weight as good as it was before she started this pattern of sickness. Maybe she’s on the low end of an exceptible BMI..not good.

    Are you using wet nebs by chance or worse dirty nebs which could be giving her more bacteria than she would have if she wasn’t nebbing at all.

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