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.
CT scan report
- Thread starter mom2owen
- Start date
And this is what get's me so angry. With a CT scan showing bronchial wall thickening and atelectasis or scarring, why did the CF doctor tell us to go to the asthma doctor????
I am starting to believe we really do need to change clinics.
BTW Harriet, I totally know what you are saying about avoiding test results. I did the same thing with this scan and the repeat sweat test results. It forces you to see what it is really going on, which is often very hard. Once we got these test results (his sweat tests were 31, 33), I started to panic again knowing that we are really not doing enough for Owen but also feeling like no one is helping us (we still haven't been told we should do CPT and neither the CF doctor nor the asthma doctor returned my second phone calls today). Grrr, this is hard.
I am starting to believe we really do need to change clinics.
BTW Harriet, I totally know what you are saying about avoiding test results. I did the same thing with this scan and the repeat sweat test results. It forces you to see what it is really going on, which is often very hard. Once we got these test results (his sweat tests were 31, 33), I started to panic again knowing that we are really not doing enough for Owen but also feeling like no one is helping us (we still haven't been told we should do CPT and neither the CF doctor nor the asthma doctor returned my second phone calls today). Grrr, this is hard.
And this is what get's me so angry. With a CT scan showing bronchial wall thickening and atelectasis or scarring, why did the CF doctor tell us to go to the asthma doctor????
I am starting to believe we really do need to change clinics.
BTW Harriet, I totally know what you are saying about avoiding test results. I did the same thing with this scan and the repeat sweat test results. It forces you to see what it is really going on, which is often very hard. Once we got these test results (his sweat tests were 31, 33), I started to panic again knowing that we are really not doing enough for Owen but also feeling like no one is helping us (we still haven't been told we should do CPT and neither the CF doctor nor the asthma doctor returned my second phone calls today). Grrr, this is hard.
I am starting to believe we really do need to change clinics.
BTW Harriet, I totally know what you are saying about avoiding test results. I did the same thing with this scan and the repeat sweat test results. It forces you to see what it is really going on, which is often very hard. Once we got these test results (his sweat tests were 31, 33), I started to panic again knowing that we are really not doing enough for Owen but also feeling like no one is helping us (we still haven't been told we should do CPT and neither the CF doctor nor the asthma doctor returned my second phone calls today). Grrr, this is hard.
And this is what get's me so angry. With a CT scan showing bronchial wall thickening and atelectasis or scarring, why did the CF doctor tell us to go to the asthma doctor????
<br />I am starting to believe we really do need to change clinics.
<br />BTW Harriet, I totally know what you are saying about avoiding test results. I did the same thing with this scan and the repeat sweat test results. It forces you to see what it is really going on, which is often very hard. Once we got these test results (his sweat tests were 31, 33), I started to panic again knowing that we are really not doing enough for Owen but also feeling like no one is helping us (we still haven't been told we should do CPT and neither the CF doctor nor the asthma doctor returned my second phone calls today). Grrr, this is hard.
<br />I am starting to believe we really do need to change clinics.
<br />BTW Harriet, I totally know what you are saying about avoiding test results. I did the same thing with this scan and the repeat sweat test results. It forces you to see what it is really going on, which is often very hard. Once we got these test results (his sweat tests were 31, 33), I started to panic again knowing that we are really not doing enough for Owen but also feeling like no one is helping us (we still haven't been told we should do CPT and neither the CF doctor nor the asthma doctor returned my second phone calls today). Grrr, this is hard.
Thank you, LouLou. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes, hearing the specifics does make cold reality harder to bear. If it's what's necessary to spur you to action, then despite being hard it's a necessary thing, but yes, it's hard.
Continuing CPT will only help him, regardless of what they are saying (or not saying) at this point. You have seen for yourself the congestion he has and that this brings him relief. If he still is bringing up nasty sputum I would call the pediatrician and ask if HE could order a sputum culture for you. (Make sure he specifies CF sputum culture on the requisition form so they run the right tests on it.) And I do think another opinion is worth pursuing at this point. Try to get copies of as much as you can (test results, appt notes, etc) and try somewhere else. Your son is worth it. <img src="i/expressions/rose.gif" border="0">
Yes, hearing the specifics does make cold reality harder to bear. If it's what's necessary to spur you to action, then despite being hard it's a necessary thing, but yes, it's hard.
Continuing CPT will only help him, regardless of what they are saying (or not saying) at this point. You have seen for yourself the congestion he has and that this brings him relief. If he still is bringing up nasty sputum I would call the pediatrician and ask if HE could order a sputum culture for you. (Make sure he specifies CF sputum culture on the requisition form so they run the right tests on it.) And I do think another opinion is worth pursuing at this point. Try to get copies of as much as you can (test results, appt notes, etc) and try somewhere else. Your son is worth it. <img src="i/expressions/rose.gif" border="0">
Thank you, LouLou. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Yes, hearing the specifics does make cold reality harder to bear. If it's what's necessary to spur you to action, then despite being hard it's a necessary thing, but yes, it's hard.
Continuing CPT will only help him, regardless of what they are saying (or not saying) at this point. You have seen for yourself the congestion he has and that this brings him relief. If he still is bringing up nasty sputum I would call the pediatrician and ask if HE could order a sputum culture for you. (Make sure he specifies CF sputum culture on the requisition form so they run the right tests on it.) And I do think another opinion is worth pursuing at this point. Try to get copies of as much as you can (test results, appt notes, etc) and try somewhere else. Your son is worth it. <img src="i/expressions/rose.gif" border="0">
Yes, hearing the specifics does make cold reality harder to bear. If it's what's necessary to spur you to action, then despite being hard it's a necessary thing, but yes, it's hard.
Continuing CPT will only help him, regardless of what they are saying (or not saying) at this point. You have seen for yourself the congestion he has and that this brings him relief. If he still is bringing up nasty sputum I would call the pediatrician and ask if HE could order a sputum culture for you. (Make sure he specifies CF sputum culture on the requisition form so they run the right tests on it.) And I do think another opinion is worth pursuing at this point. Try to get copies of as much as you can (test results, appt notes, etc) and try somewhere else. Your son is worth it. <img src="i/expressions/rose.gif" border="0">
Thank you, LouLou. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Yes, hearing the specifics does make cold reality harder to bear. If it's what's necessary to spur you to action, then despite being hard it's a necessary thing, but yes, it's hard.
<br />
<br />Continuing CPT will only help him, regardless of what they are saying (or not saying) at this point. You have seen for yourself the congestion he has and that this brings him relief. If he still is bringing up nasty sputum I would call the pediatrician and ask if HE could order a sputum culture for you. (Make sure he specifies CF sputum culture on the requisition form so they run the right tests on it.) And I do think another opinion is worth pursuing at this point. Try to get copies of as much as you can (test results, appt notes, etc) and try somewhere else. Your son is worth it. <img src="i/expressions/rose.gif" border="0">
<br />
<br />Yes, hearing the specifics does make cold reality harder to bear. If it's what's necessary to spur you to action, then despite being hard it's a necessary thing, but yes, it's hard.
<br />
<br />Continuing CPT will only help him, regardless of what they are saying (or not saying) at this point. You have seen for yourself the congestion he has and that this brings him relief. If he still is bringing up nasty sputum I would call the pediatrician and ask if HE could order a sputum culture for you. (Make sure he specifies CF sputum culture on the requisition form so they run the right tests on it.) And I do think another opinion is worth pursuing at this point. Try to get copies of as much as you can (test results, appt notes, etc) and try somewhere else. Your son is worth it. <img src="i/expressions/rose.gif" border="0">
Harriet, you made me cry. You are right and I need to apologize for being so pathetic in all of this. It has been a long road of not getting help for Owen easily. I also get lulled into thinking that if the doctors aren't jumping to help, it must not be that big of a deal. Bottom line is that Owen is worth it and I will forge onward. Thanks.
Harriet, you made me cry. You are right and I need to apologize for being so pathetic in all of this. It has been a long road of not getting help for Owen easily. I also get lulled into thinking that if the doctors aren't jumping to help, it must not be that big of a deal. Bottom line is that Owen is worth it and I will forge onward. Thanks.
Harriet, you made me cry. You are right and I need to apologize for being so pathetic in all of this. It has been a long road of not getting help for Owen easily. I also get lulled into thinking that if the doctors aren't jumping to help, it must not be that big of a deal. Bottom line is that Owen is worth it and I will forge onward. Thanks.
You aren't being pathetic!! If I made you feel that way I am sorry. All of this is just so hard and when you get mixed signals from drs it makes it all the harder.
But yes, bottom line is, our children are worth it, and whatever it takes must be done. And if we don't do it, no one will.
But yes, bottom line is, our children are worth it, and whatever it takes must be done. And if we don't do it, no one will.
You aren't being pathetic!! If I made you feel that way I am sorry. All of this is just so hard and when you get mixed signals from drs it makes it all the harder.
But yes, bottom line is, our children are worth it, and whatever it takes must be done. And if we don't do it, no one will.
But yes, bottom line is, our children are worth it, and whatever it takes must be done. And if we don't do it, no one will.
You aren't being pathetic!! If I made you feel that way I am sorry. All of this is just so hard and when you get mixed signals from drs it makes it all the harder.
<br />
<br />But yes, bottom line is, our children are worth it, and whatever it takes must be done. And if we don't do it, no one will.
<br />
<br />But yes, bottom line is, our children are worth it, and whatever it takes must be done. And if we don't do it, no one will.
Goodness no Harriet, it's not your posts that make me feel this way! But, I did need a kick in the patootie to find the strength to carry on. What made me cry (and don't worry, I cry a lot, happy movies, stories, etc!) was that Owen is worth it. Of course I know that, but I think I needed to be reminded that my most important job is in being his advocate right now. Seriously, thanks for everything!
Goodness no Harriet, it's not your posts that make me feel this way! But, I did need a kick in the patootie to find the strength to carry on. What made me cry (and don't worry, I cry a lot, happy movies, stories, etc!) was that Owen is worth it. Of course I know that, but I think I needed to be reminded that my most important job is in being his advocate right now. Seriously, thanks for everything!
Goodness no Harriet, it's not your posts that make me feel this way! But, I did need a kick in the patootie to find the strength to carry on. What made me cry (and don't worry, I cry a lot, happy movies, stories, etc!) was that Owen is worth it. Of course I know that, but I think I needed to be reminded that my most important job is in being his advocate right now. Seriously, thanks for everything!