frustrated again!

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mom2owen

New member
I hate to write such whiney posts but I had to report that after yet another check-up, we are now adding sinusitis to Owen's list of "non-CF" troubles. It was not our regular doctor this time (long story) but he thinks Owen's sinuses are a mess based on exam and mouth breathing, throat clearing and mucus in his throat (despite the normal CT). We are supposed to use a nasal spray. I am just hoping they don't start the nose bleeds or at least if we use them, the inflammation helps the nose bleeds stop altogether. The doctor told us he thinks it is due to having a narrow face. Very interesting indeed.
And, since taking him off Symbicort 160 a week and a half ago, his FEV1% went down almost 10% again. As much as I didn't want him on it, I guess we have to try it again. I think the anti-inflammatory component of Symbicort is more helpful than we realized. Overall his cough is much better than when he was "sick" but it is still there and still thick and heavy. Just sort of disappointed in the lack of progress on all fronts.
 
 
M

mom2owen

New member
I hate to write such whiney posts but I had to report that after yet another check-up, we are now adding sinusitis to Owen's list of "non-CF" troubles. It was not our regular doctor this time (long story) but he thinks Owen's sinuses are a mess based on exam and mouth breathing, throat clearing and mucus in his throat (despite the normal CT). We are supposed to use a nasal spray. I am just hoping they don't start the nose bleeds or at least if we use them, the inflammation helps the nose bleeds stop altogether. The doctor told us he thinks it is due to having a narrow face. Very interesting indeed.
And, since taking him off Symbicort 160 a week and a half ago, his FEV1% went down almost 10% again. As much as I didn't want him on it, I guess we have to try it again. I think the anti-inflammatory component of Symbicort is more helpful than we realized. Overall his cough is much better than when he was "sick" but it is still there and still thick and heavy. Just sort of disappointed in the lack of progress on all fronts.
 
M

mom2owen

New member
<p>I hate to write such whiney posts but I had to report that after yet another check-up, we are now adding sinusitis to Owen's list of "non-CF" troubles. It was not our regular doctor this time (long story) but he thinks Owen's sinuses are a mess based on exam and mouth breathing, throat clearing and mucus in his throat (despite the normal CT). We are supposed to use a nasal spray. I am just hoping they don't start the nose bleeds or at least if we use them, the inflammation helps the nose bleeds stop altogether. The doctor told us he thinks it is due to having a narrow face. Very interesting indeed.
<p>And, since taking him off Symbicort 160 a week and a half ago, his FEV1% went down almost 10% again. As much as I didn't want him on it, I guess we have to try it again. I think the anti-inflammatory component of Symbicort is more helpful than we realized. Overall his cough is much better than when he was "sick" but it is still there and still thick and heavy. Just sort of disappointed in the lack of progress on all fronts.
<p>
 
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bmombtoo

New member
I believe that sinus problems are a symptom of CF. My son is now almost seventeen and was diagnosed with CF in 2005. He has no know mutation but had a history since infancy of lung congestion and sinus problems. By age one he was geting daily neb treatments. His diagnosed came after he had sinus surgery which revealed nasal polyps. He had one positive sweat chloride and one negative. His nasal differential test indicated CF. I hve similar symptoms and am most likely a symptomatic carrier. Pulmozyne has helped him alot.
 
B

bmombtoo

New member
I believe that sinus problems are a symptom of CF. My son is now almost seventeen and was diagnosed with CF in 2005. He has no know mutation but had a history since infancy of lung congestion and sinus problems. By age one he was geting daily neb treatments. His diagnosed came after he had sinus surgery which revealed nasal polyps. He had one positive sweat chloride and one negative. His nasal differential test indicated CF. I hve similar symptoms and am most likely a symptomatic carrier. Pulmozyne has helped him alot.
 
B

bmombtoo

New member
<p>I believe that sinus problems are a symptom of CF. My son is now almost seventeen and was diagnosed with CF in 2005. He has no know mutation but had a history since infancy of lung congestion and sinus problems. By age one he was geting daily neb treatments. His diagnosed came after he had sinus surgery which revealed nasal polyps. He had one positive sweat chloride and one negative. His nasal differential test indicated CF. I hve similar symptoms and am most likely a symptomatic carrier. Pulmozyne has helped him alot.
 
M

mom2owen

New member
Thanks Dolline, I appreciate your response. We are probably going to do the NPD test sometime in the future. Since we only know of the 7T/9T variant and eight polymorphisms, we are unable to get diagnosed. It is frustrating but hearing your story makes me believe that it could happen some day. I only want a diagnosis so we can be as aggressive as possible with his treatment since things have not gone very well for him. I might ask about Pulmozyme when I talk to the clinic next. I hope things are going well for your kids!
Karenmichelle, write anytime, it was great hearing from you too!
 
M

mom2owen

New member
Thanks Dolline, I appreciate your response. We are probably going to do the NPD test sometime in the future. Since we only know of the 7T/9T variant and eight polymorphisms, we are unable to get diagnosed. It is frustrating but hearing your story makes me believe that it could happen some day. I only want a diagnosis so we can be as aggressive as possible with his treatment since things have not gone very well for him. I might ask about Pulmozyme when I talk to the clinic next. I hope things are going well for your kids!
Karenmichelle, write anytime, it was great hearing from you too!
 
M

mom2owen

New member
Thanks Dolline, I appreciate your response. We are probably going to do the NPD test sometime in the future. Since we only know of the 7T/9T variant and eight polymorphisms, we are unable to get diagnosed. It is frustrating but hearing your story makes me believe that it could happen some day. I only want a diagnosis so we can be as aggressive as possible with his treatment since things have not gone very well for him. I might ask about Pulmozyme when I talk to the clinic next. I hope things are going well for your kids!
<br />Karenmichelle, write anytime, it was great hearing from you too!
 
E

edan

Guest
Sorry, I can't remember from your previous posts, but is he doing hypertonic saline? At the very least, that one will cost $65 if the insurance doesn't cover it. Pulmozyme is about $2000. When DD is sick, HTS takes care of business like nothing else.

Edan
 
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edan

Guest
Sorry, I can't remember from your previous posts, but is he doing hypertonic saline? At the very least, that one will cost $65 if the insurance doesn't cover it. Pulmozyme is about $2000. When DD is sick, HTS takes care of business like nothing else.

Edan
 
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edan

Guest
Sorry, I can't remember from your previous posts, but is he doing hypertonic saline? At the very least, that one will cost $65 if the insurance doesn't cover it. Pulmozyme is about $2000. When DD is sick, HTS takes care of business like nothing else.
<br />
<br />Edan
 
M

mom2owen

New member
I had been asking about it here before. Our CF doctor won't prescribe it because she says he should cough less, not more and saline will increase his cough. (If I could find the emoticons, I would insert a nasty face here!). I agree it would be great for him to cough less, but only if it is because he doesn't have junk to cough up! We are hoping for time to be our friend and his history completing a picture for them as they get to know him better in the future. Fingers are crossed!
 
M

mom2owen

New member
I had been asking about it here before. Our CF doctor won't prescribe it because she says he should cough less, not more and saline will increase his cough. (If I could find the emoticons, I would insert a nasty face here!). I agree it would be great for him to cough less, but only if it is because he doesn't have junk to cough up! We are hoping for time to be our friend and his history completing a picture for them as they get to know him better in the future. Fingers are crossed!
 
M

mom2owen

New member
I had been asking about it here before. Our CF doctor won't prescribe it because she says he should cough less, not more and saline will increase his cough. (If I could find the emoticons, I would insert a nasty face here!). I agree it would be great for him to cough less, but only if it is because he doesn't have junk to cough up! We are hoping for time to be our friend and his history completing a picture for them as they get to know him better in the future. Fingers are crossed!
 
H

hmw

New member
Why was he taken off the Symbicort? It does seem he needs it. My son (asthma) recently started it, and while he hasn't had pft's done since starting, he's blowing higher numbers than we've ever seen before on his peak flow meter just 2wks after starting, so I can see the difference it makes adding a med like this when it's needed. I hope Owen can get it back.

I'm so sorry to hear about the sinus issues. I get so upset reading about all this and not seeing him get the help he needs. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
H

hmw

New member
Why was he taken off the Symbicort? It does seem he needs it. My son (asthma) recently started it, and while he hasn't had pft's done since starting, he's blowing higher numbers than we've ever seen before on his peak flow meter just 2wks after starting, so I can see the difference it makes adding a med like this when it's needed. I hope Owen can get it back.

I'm so sorry to hear about the sinus issues. I get so upset reading about all this and not seeing him get the help he needs. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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