frustrated again!

[hmw]

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.
<br />
<br />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">

 

[mom2owen]

Harriett, I actually requested he be taken off of Symbicort 160 when his PFT's returned to normal after his last infection. Regretting that one for sure. It was just scary to me that it is not approved for kids as young as Owen, and with the confusion about whether or not it is asthma that causes so much of his problem, I just wanted to try him off of it for a spell. I learned my lesson. I appreciate your concern about my little guy. It has been absolutely maddening to have all the issues we do with no clear path. Ratatosk posted another issue with the same clinic. Maybe if enough of us deal with it head on, a change will occur??? I add up all the issues he has and want to scream because they tell me they know it's not CF but they don't know what it is. I think we are suffering from a case of gene testing being harmful rather than helpful. We have been told multiple times that before gene testing, Owen would have been diagnosed long ago based on symptoms. He has them all. I did talk with someone at Ambry and learned more about which polymorphisms he has. I know they are supposed to be non-disease causing and she said she thought it would be more likely a problem of unknown genes over my combination of 7T/9T variants with the polymorphisms theory. But, I am happy to have the info in hand should science make a new discovery that will finally bring us the help we need. I wish it was as easy as getting doctors to treat him anyway but clearly, there are a lot of CF clinics out there who are not willing to, and just our luck, there are two, right down the street from us... But, in the meantime, it is back to Symbicort we go! And the Nasonex does seem to be helping already. At least he asks for it every night, but maybe that's because I give him a coin for each nostril <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2owen]

Harriett, I actually requested he be taken off of Symbicort 160 when his PFT's returned to normal after his last infection. Regretting that one for sure. It was just scary to me that it is not approved for kids as young as Owen, and with the confusion about whether or not it is asthma that causes so much of his problem, I just wanted to try him off of it for a spell. I learned my lesson. I appreciate your concern about my little guy. It has been absolutely maddening to have all the issues we do with no clear path. Ratatosk posted another issue with the same clinic. Maybe if enough of us deal with it head on, a change will occur??? I add up all the issues he has and want to scream because they tell me they know it's not CF but they don't know what it is. I think we are suffering from a case of gene testing being harmful rather than helpful. We have been told multiple times that before gene testing, Owen would have been diagnosed long ago based on symptoms. He has them all. I did talk with someone at Ambry and learned more about which polymorphisms he has. I know they are supposed to be non-disease causing and she said she thought it would be more likely a problem of unknown genes over my combination of 7T/9T variants with the polymorphisms theory.But, I am happy to have the info in hand should science make a new discovery that will finally bring us the help we need. I wish it was as easy as getting doctors to treat him anyway but clearly, there are a lot of CF clinics out there who are not willing to, and just our luck, there are two, right down the street from us... But, in the meantime, it is back to Symbicort we go! And the Nasonex does seem to be helping already. At least he asks for it every night, but maybe that's because I give him a coin for each nostril <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[mom2owen]

<p>Harriett, I actually requested he be taken off of Symbicort 160 when his PFT's returned to normal after his last infection. Regretting that one for sure. It was just scary to me that it is not approved for kids as young as Owen, and with the confusion about whether or not it is asthma that causes so much of his problem, I just wanted to try him off of it for a spell. I learned my lesson. <br />I appreciate your concern about my little guy. It has been absolutely maddening to have all the issues we do with no clear path. Ratatosk posted another issue with the same clinic. Maybe if enough of us deal with it head on, a change will occur??? <br />I add up all the issues he has and want to scream because they tell me they know it's not CF but they don't know what it is. I think we are suffering from a case of gene testing being harmful rather than helpful. We have been told multiple times that before gene testing, Owen would have been diagnosed long ago based on symptoms. He has them all. I did talk with someone at Ambry and learned more about which polymorphisms he has. I know they are supposed to be non-disease causing and she said she thought it would be more likely a problem of unknown genes over my combination of 7T/9T variants with the polymorphisms theory.But, I am happy to have the info in hand should science make a new discovery that will finally bring us the help we need. I wish it was as easy as getting doctors to treat him anyway but clearly, there are a lot of CF clinics out there who are not willing to, and just our luck, there are two, right down the street from us... <br />But, in the meantime, it is back to Symbicort we go! And the Nasonex does seem to be helping already. At least he asks for it every night, but maybe that's because I give him a coin for each nostril <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[bwoodsyb]

Tyler always had a runny nose and was a mouth breather. He snored real loud to lol. But anyways, he ended up having nasal polyps. You might want to have the doctors check that out. After tys surgery he can breathe through his nose and it doesn't run half as bad anymore. Oh yea, no more snoring!!!!

 

[bwoodsyb]

Tyler always had a runny nose and was a mouth breather. He snored real loud to lol. But anyways, he ended up having nasal polyps. You might want to have the doctors check that out. After tys surgery he can breathe through his nose and it doesn't run half as bad anymore. Oh yea, no more snoring!!!!

 

[bwoodsyb]

Tyler always had a runny nose and was a mouth breather. He snored real loud to lol. But anyways, he ended up having nasal polyps. You might want to have the doctors check that out. After tys surgery he can breathe through his nose and it doesn't run half as bad anymore. Oh yea, no more snoring!!!!

 

[mom2owen]

Hi, Thanks for the post. I have wondered but wouldn't that have shown in the CT? It would make perfect sense. Do they also cause bloody noses or could those just be from all the inflammation? His nose doesn't always run, it is usually just really stuffed up with yellow stuff. Eww. It is running now though. He always does this kind of throat suction clearing thing.
How and who diagnosed the polyps with Tyler? Thanks a lot!

 

[mom2owen]

Hi, Thanks for the post. I have wondered but wouldn't that have shown in the CT? It would make perfect sense. Do they also cause bloody noses or could those just be from all the inflammation? His nose doesn't always run, it is usually just really stuffed up with yellow stuff. Eww. It is running now though. He always does this kind of throat suction clearing thing.
How and who diagnosed the polyps with Tyler? Thanks a lot!

 

[mom2owen]

Hi, Thanks for the post. I have wondered but wouldn't that have shown in the CT? It would make perfect sense. Do they also cause bloody noses or could those just be from all the inflammation? His nose doesn't always run, it is usually just really stuffed up with yellow stuff. Eww. It is running now though. He always does this kind of throat suction clearing thing.
<br />How and who diagnosed the polyps with Tyler? Thanks a lot!

 

[Karenmichelle]

Not to butt in <img src="i/expressions/face-icon-small-smile.gif" border="0">...my Tyler had polyps as well. They did not show on the CT. The ENT was suprised to have found them during his sinus surgery. His sinuses were completely blocked, so they did not show on the scan. He also seems to breathe better thru his nose. He had been a mouth breather and snored, but he also had a T & A done, so I think that has helped as well. Usually, they do show up on CT.
Had any more thoughts on the NPD? Any new info?
Blessings

 

[Karenmichelle]

Not to butt in <img src="i/expressions/face-icon-small-smile.gif" border="0">...my Tyler had polyps as well. They did not show on the CT. The ENT was suprised to have found them during his sinus surgery. His sinuses were completely blocked, so they did not show on the scan. He also seems to breathe better thru his nose. He had been a mouth breather and snored, but he also had a T & A done, so I think that has helped as well. Usually, they do show up on CT.
Had any more thoughts on the NPD? Any new info?
Blessings

 

[Karenmichelle]

<p>Not to butt in <img src="i/expressions/face-icon-small-smile.gif" border="0">...my Tyler had polyps as well. They did not show on the CT. The ENT was suprised to have found them during his sinus surgery. His sinuses were completely blocked, so they did not show on the scan. He also seems to breathe better thru his nose. He had been a mouth breather and snored, but he also had a T & A done, so I think that has helped as well. Usually, they do show up on CT.
<p>Had any more thoughts on the NPD? Any new info?
<p>Blessings

 

[Havoc]

Regarding the hypertonic saline. The doc probably does not want him on it because HTS will often cause bronchospasm in patients with a strong asthma component. I think he explained it poorly, but perhaps he was trying to speak more in layman's terms.

My own personal experience with HTS was major bronchospasm. I went from running around 4 miles non-stop to being able to run about a quarter mile and having to stop to catch my breath.

For some, HTS seems to work wonders, but not me.

 

[Havoc]

Regarding the hypertonic saline. The doc probably does not want him on it because HTS will often cause bronchospasm in patients with a strong asthma component. I think he explained it poorly, but perhaps he was trying to speak more in layman's terms.

My own personal experience with HTS was major bronchospasm. I went from running around 4 miles non-stop to being able to run about a quarter mile and having to stop to catch my breath.

For some, HTS seems to work wonders, but not me.

 

[Havoc]

Regarding the hypertonic saline. The doc probably does not want him on it because HTS will often cause bronchospasm in patients with a strong asthma component. I think he explained it poorly, but perhaps he was trying to speak more in layman's terms.
<br />
<br />My own personal experience with HTS was major bronchospasm. I went from running around 4 miles non-stop to being able to run about a quarter mile and having to stop to catch my breath.
<br />
<br />For some, HTS seems to work wonders, but not me.

 

[Kristie65roses]

I am 43 yrs. old and Sinusitis is part of CF, I have had several sinus surgeries,unfortunately I have severe issues with this. . Like our mucous in our lungs, the mucous in our sinuses are just as thick. My Doctor has me on daily Biaxin and I use a mask while using Clositine, which gets it into the sinuses. I am on Rhinocort, Nasonex and flush 3-4 times a day with the saline/sea salt mixture. Using all this combo and going in on a routine basis to see if there is any krustations that my Doctor needs to suck out, has been helping alot!

Good Luck!

 

[Kristie65roses]

I am 43 yrs. old and Sinusitis is part of CF, I have had several sinus surgeries,unfortunately I have severe issues with this. . Like our mucous in our lungs, the mucous in our sinuses are just as thick. My Doctor has me on daily Biaxin and I use a mask while using Clositine, which gets it into the sinuses. I am on Rhinocort, Nasonex and flush 3-4 times a day with the saline/sea salt mixture. Using all this combo and going in on a routine basis to see if there is any krustations that my Doctor needs to suck out, has been helping alot!

Good Luck!

 

[Kristie65roses]

I am 43 yrs. old and Sinusitis is part of CF, I have had several sinus surgeries,unfortunately I have severe issues with this. . Like our mucous in our lungs, the mucous in our sinuses are just as thick. My Doctor has me on daily Biaxin and I use a mask while using Clositine, which gets it into the sinuses. I am on Rhinocort, Nasonex and flush 3-4 times a day with the saline/sea salt mixture. Using all this combo and going in on a routine basis to see if there is any krustations that my Doctor needs to suck out, has been helping alot!
<br />
<br />Good Luck!

 

[JENNYC]

My daughter is 6 and has had 10 or 11 sinus surgeries in the past 2 years for sinus polyps. Before the docs threw all kind of antibiotics at her not realizing she had severe polyps and she remained sick for a very long time. After the surgery she was so much better! She slept better, ate better, felt better! And like Kristie said the saline sinus rinses were a life saver. Hard the first couple of times, but she quickly became a pro. They get the bacteria out of the sinus' that would normally be stuck in the sticky mucus that causes the inflamation and infection. I would definately try the sinus rinses(you can buy them at any pharmacy over the counter). A word of caution Abby's polyps got so bad that she had bone loss between her eyes and her nasal cavity, so I would keep a close eye if your little one does have polyps.