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Thread: Question for the 'Senior Citizens' of CF

  1. #1

    Question for the 'Senior Citizens' of CF

    Hi. I probably sound naive, and like I have OCD if you have read any of my other posts, but I am going to ask this anyway. I have really been struggling with this since my DD was diagnosed in May at age 3.5. She had ZERO symptoms, diagnosed only because my husband and I found out we were carriers.

    That said, we started treating her preventatively. And as luck would have it she has been sick more often than not. Probably a coincidence but still the coincidence gives me such an awful feeling. I can't help but wonder if somehow these drugs she is taking are hurting her in anyway. Her xrays are normal and she does not have an asthma component, but we are doing albuterol 2x/day anyway.

    1.) Is this really ok for her to have her lungs expanding like this 2x/day when there is no real lung involvement yet?

    2.) Could it somehow damage her? I just, like everyone here of course, want her to lead the longest, healthiest, happiest life possible.

    3.) Were you on these drugs (albuterol/xopanex)from the beginning?

    Thanks if you have any input into this matter. I would love real life experiences instead of just doctor speak for that warm/fuzzy feeling.

    Edan

    0 Not allowed!

  2. #2

    Question for the 'Senior Citizens' of CF

    Hi. I probably sound naive, and like I have OCD if you have read any of my other posts, but I am going to ask this anyway. I have really been struggling with this since my DD was diagnosed in May at age 3.5. She had ZERO symptoms, diagnosed only because my husband and I found out we were carriers.

    That said, we started treating her preventatively. And as luck would have it she has been sick more often than not. Probably a coincidence but still the coincidence gives me such an awful feeling. I can't help but wonder if somehow these drugs she is taking are hurting her in anyway. Her xrays are normal and she does not have an asthma component, but we are doing albuterol 2x/day anyway.

    1.) Is this really ok for her to have her lungs expanding like this 2x/day when there is no real lung involvement yet?

    2.) Could it somehow damage her? I just, like everyone here of course, want her to lead the longest, healthiest, happiest life possible.

    3.) Were you on these drugs (albuterol/xopanex)from the beginning?

    Thanks if you have any input into this matter. I would love real life experiences instead of just doctor speak for that warm/fuzzy feeling.

    Edan

    0 Not allowed!

  3. #3

    Question for the 'Senior Citizens' of CF

    Hi. I probably sound naive, and like I have OCD if you have read any of my other posts, but I am going to ask this anyway. I have really been struggling with this since my DD was diagnosed in May at age 3.5. She had ZERO symptoms, diagnosed only because my husband and I found out we were carriers.
    <br />
    <br />That said, we started treating her preventatively. And as luck would have it she has been sick more often than not. Probably a coincidence but still the coincidence gives me such an awful feeling. I can't help but wonder if somehow these drugs she is taking are hurting her in anyway. Her xrays are normal and she does not have an asthma component, but we are doing albuterol 2x/day anyway.
    <br />
    <br />1.) Is this really ok for her to have her lungs expanding like this 2x/day when there is no real lung involvement yet?
    <br />
    <br />2.) Could it somehow damage her? I just, like everyone here of course, want her to lead the longest, healthiest, happiest life possible.
    <br />
    <br />3.) Were you on these drugs (albuterol/xopanex)from the beginning?
    <br />
    <br />Thanks if you have any input into this matter. I would love real life experiences instead of just doctor speak for that warm/fuzzy feeling.
    <br />
    <br />Edan

    0 Not allowed!

  4. #4

    Question for the 'Senior Citizens' of CF

    Hi Edan,

    Being that I am a nurse and my spouse is an RT, we really don't believe there are any real side effects from taking albuterol. Other than the normal fast heart rate and jittery-ness that comes with it, it's all short-term and there should be no long-lasting effects from taking albuterol. But I don't really see why there would be a reason to waste the time with the albuterol if she's not having any symptoms. Is she doing any type of CPT as well? That would be the thing I would start doing preventatively rather than albuterol. It's good to get used to the treatments early on so that it's more "routine" once she's older.

    0 Not allowed!

  5. #5

    Question for the 'Senior Citizens' of CF

    Hi Edan,

    Being that I am a nurse and my spouse is an RT, we really don't believe there are any real side effects from taking albuterol. Other than the normal fast heart rate and jittery-ness that comes with it, it's all short-term and there should be no long-lasting effects from taking albuterol. But I don't really see why there would be a reason to waste the time with the albuterol if she's not having any symptoms. Is she doing any type of CPT as well? That would be the thing I would start doing preventatively rather than albuterol. It's good to get used to the treatments early on so that it's more "routine" once she's older.

    0 Not allowed!

  6. #6

    Question for the 'Senior Citizens' of CF

    Hi Edan,
    <br />
    <br />Being that I am a nurse and my spouse is an RT, we really don't believe there are any real side effects from taking albuterol. Other than the normal fast heart rate and jittery-ness that comes with it, it's all short-term and there should be no long-lasting effects from taking albuterol. But I don't really see why there would be a reason to waste the time with the albuterol if she's not having any symptoms. Is she doing any type of CPT as well? That would be the thing I would start doing preventatively rather than albuterol. It's good to get used to the treatments early on so that it's more "routine" once she's older.

    0 Not allowed!

  7. #7

    Question for the 'Senior Citizens' of CF

    Hi Leah.

    Thanks (again)for your reply! Yes, we are doing the vest, 2x/day unless sick (which is right now!) So we are doing 3. Also have HTS and pulmozyme at our disposal. I have to say I really think the HTS does wonders and if I had a "choice" on which to utilize, I think this one would be it for preventative measures. I also like that it is more natural. During this last cold, which is bronchial, That HTS really seems to pull the gunk out more than either the pulmozyme or albuterol.

    With the doctors knowledge of course, my husband and I would really like to settle on HTS only during well times and albuterol/HTS when she has a chest cold.

    Have a great evening.

    Edan

    0 Not allowed!

  8. #8

    Question for the 'Senior Citizens' of CF

    Hi Leah.

    Thanks (again)for your reply! Yes, we are doing the vest, 2x/day unless sick (which is right now!) So we are doing 3. Also have HTS and pulmozyme at our disposal. I have to say I really think the HTS does wonders and if I had a "choice" on which to utilize, I think this one would be it for preventative measures. I also like that it is more natural. During this last cold, which is bronchial, That HTS really seems to pull the gunk out more than either the pulmozyme or albuterol.

    With the doctors knowledge of course, my husband and I would really like to settle on HTS only during well times and albuterol/HTS when she has a chest cold.

    Have a great evening.

    Edan

    0 Not allowed!

  9. #9

    Question for the 'Senior Citizens' of CF

    Hi Leah.
    <br />
    <br />Thanks (again)for your reply! Yes, we are doing the vest, 2x/day unless sick (which is right now!) So we are doing 3. Also have HTS and pulmozyme at our disposal. I have to say I really think the HTS does wonders and if I had a "choice" on which to utilize, I think this one would be it for preventative measures. I also like that it is more natural. During this last cold, which is bronchial, That HTS really seems to pull the gunk out more than either the pulmozyme or albuterol.
    <br />
    <br />With the doctors knowledge of course, my husband and I would really like to settle on HTS only during well times and albuterol/HTS when she has a chest cold.
    <br />
    <br />Have a great evening.
    <br />
    <br />Edan

    0 Not allowed!

  10. #10

    Question for the 'Senior Citizens' of CF

    Ok, I am a "CF senior" and my advice is only my opinion. I was not diagnosed until 14 so my entire childhood I did not take any drugs for my CF. I have to note that I am pancreas sufficient so I did not have to deal with that issue. I would not have my child on albuterol. I nebbed it continuously for a long period of time (more then ten years). I was diagnosed with SVT super ventricular tachtacardia. I had to have an operation on my heart because it would break into arithmia (more then 200 beats per min) and I couldnt stop it. Now, I am not saying that Albuterol caused this problem but I am also not convinced that it did not. Every time I nebbed Albuterol it caused my heart to go into a fast heart beat. I switched to Xopenex and feel that is much milder. I also agree with you about the HTS. It is natural and if it is working def stay with it. The only advice I give to parents...is to avoid sick people at all costs. Being sick has really caused all of my lung damage. After I get a cold it goes straight into my lungs and then I am done for....bronchitis...its terrible. So, to answer your question...no, I was not on any drugs and had a normal childhood. I was very, very, active (into a lot of sports). The one thing that I really wish my parents did was chest therapy or vest to get rid of the mucus but there was no vest back then. Also, when you say she has been getting sick...do you mean with a cold?

    0 Not allowed!

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