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M

mneville

Guest
My son, aged three, just had his second sinus surgery on Wednesday. He is a Double Delta and his only problem is sinus at this point. He has had two PICCS for sinus infections followed by surgery. He came out of surgery without one complaint- no packing, no pain meds..nothing. He just had his PICC pulled today and is doing fantastic!

I hate that he has already needed these surgeries but they totally improve his quality of life. And I want to keep his lungs perfect so this is one way to do it.

Best of luck,

Megan, mom to Aidan (CF) and Gavin (no CF)
 
M

mneville

Guest
My son, aged three, just had his second sinus surgery on Wednesday. He is a Double Delta and his only problem is sinus at this point. He has had two PICCS for sinus infections followed by surgery. He came out of surgery without one complaint- no packing, no pain meds..nothing. He just had his PICC pulled today and is doing fantastic!

I hate that he has already needed these surgeries but they totally improve his quality of life. And I want to keep his lungs perfect so this is one way to do it.

Best of luck,

Megan, mom to Aidan (CF) and Gavin (no CF)
 
M

mneville

Guest
My son, aged three, just had his second sinus surgery on Wednesday. He is a Double Delta and his only problem is sinus at this point. He has had two PICCS for sinus infections followed by surgery. He came out of surgery without one complaint- no packing, no pain meds..nothing. He just had his PICC pulled today and is doing fantastic!

I hate that he has already needed these surgeries but they totally improve his quality of life. And I want to keep his lungs perfect so this is one way to do it.

Best of luck,

Megan, mom to Aidan (CF) and Gavin (no CF)
 
M

mneville

Guest
My son, aged three, just had his second sinus surgery on Wednesday. He is a Double Delta and his only problem is sinus at this point. He has had two PICCS for sinus infections followed by surgery. He came out of surgery without one complaint- no packing, no pain meds..nothing. He just had his PICC pulled today and is doing fantastic!

I hate that he has already needed these surgeries but they totally improve his quality of life. And I want to keep his lungs perfect so this is one way to do it.

Best of luck,

Megan, mom to Aidan (CF) and Gavin (no CF)
 
M

mneville

Guest
My son, aged three, just had his second sinus surgery on Wednesday. He is a Double Delta and his only problem is sinus at this point. He has had two PICCS for sinus infections followed by surgery. He came out of surgery without one complaint- no packing, no pain meds..nothing. He just had his PICC pulled today and is doing fantastic!
<br />
<br />I hate that he has already needed these surgeries but they totally improve his quality of life. And I want to keep his lungs perfect so this is one way to do it.
<br />
<br />Best of luck,
<br />
<br />Megan, mom to Aidan (CF) and Gavin (no CF)
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Found an update on the PTC124 drug:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...80205123821.htm
</a>

Anyone have any clue on the timeline on this drug?


Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.</end quote></div>

You can find alot of information about PTC124 and the trials that are underway at their website:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/
">http://www.ptcbio.com/
</a>
Also, I don't have a list of the stop mutations, but I believe they all end with an X. One of my daughter's mutations is a stop mutation and I have been watching this drug closely. It is still in trials. But I read somewhere that it could be available as early as 2009.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Found an update on the PTC124 drug:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...80205123821.htm
</a>

Anyone have any clue on the timeline on this drug?


Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.</end quote></div>

You can find alot of information about PTC124 and the trials that are underway at their website:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/
">http://www.ptcbio.com/
</a>
Also, I don't have a list of the stop mutations, but I believe they all end with an X. One of my daughter's mutations is a stop mutation and I have been watching this drug closely. It is still in trials. But I read somewhere that it could be available as early as 2009.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Found an update on the PTC124 drug:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...80205123821.htm
</a>

Anyone have any clue on the timeline on this drug?


Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.</end quote></div>

You can find alot of information about PTC124 and the trials that are underway at their website:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/
">http://www.ptcbio.com/
</a>
Also, I don't have a list of the stop mutations, but I believe they all end with an X. One of my daughter's mutations is a stop mutation and I have been watching this drug closely. It is still in trials. But I read somewhere that it could be available as early as 2009.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>

Found an update on the PTC124 drug:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
">http://www.sciencedaily.com/re...80205123821.htm
</a>

Anyone have any clue on the timeline on this drug?


Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.</end quote>

You can find alot of information about PTC124 and the trials that are underway at their website:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/
">http://www.ptcbio.com/
</a>
Also, I don't have a list of the stop mutations, but I believe they all end with an X. One of my daughter's mutations is a stop mutation and I have been watching this drug closely. It is still in trials. But I read somewhere that it could be available as early as 2009.
 
M

MargaritaChic

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Faust</b></i>
<br />
<br />Found an update on the PTC124 drug:
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.sciencedaily.com/releases/2008/02/080205123821.htm
<br />">http://www.sciencedaily.com/re...80205123821.htm
<br /></a>
<br />
<br />Anyone have any clue on the timeline on this drug?
<br />
<br />
<br />Also, I goggled it but couldn't find a good source. I thought I have seen it on here before, but could somebody please supply a link listing the cf nonsense mutations? I'd appreciate it.</end quote>
<br />
<br />You can find alot of information about PTC124 and the trials that are underway at their website:
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.ptcbio.com/
">http://www.ptcbio.com/
</a><br />
<br />Also, I don't have a list of the stop mutations, but I believe they all end with an X. One of my daughter's mutations is a stop mutation and I have been watching this drug closely. It is still in trials. But I read somewhere that it could be available as early as 2009.
<br />
<br />
 
A

AnD

New member
I thought I would throw in my experience with my sinuses, just fyi...I was scheduled for sinus surgery as a teen, because my sinuses were clogged up with chronic infection, and I had a deviated septum (no polyps). On my cf clinic nurse's advice, I put it off, since I suspected that it was allergy related. Come spring, they were clear again. So, allergy meds after that.

Later, I had chronic sinusitus that was horrible during the fall (still an allergy problem) and Singulair worked- no more chronic sinusitus, just periodic. I have a new ENT now (I started with him about a year ago), who did a culture and discovered that my problem was PA in my sinuses, and prescribed inhaled cephtaz and Pulmicort with a nasal nebulizer, and that did wonders- after that treatment, my sinuses scored a "0" <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

I guess what I am saying is that surgery <i>for me </i>and my doctor is a last resort, and that killing the bugs and promoting draining of the sinuses (I do nasal washes- neti pot) would be something I'd try first, since the nebulized meds worked when the orals didn't, especially if you haven't been cultured- you need to know what is growing up there, no matter what you decide to do <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

Good luck!
 
A

AnD

New member
I thought I would throw in my experience with my sinuses, just fyi...I was scheduled for sinus surgery as a teen, because my sinuses were clogged up with chronic infection, and I had a deviated septum (no polyps). On my cf clinic nurse's advice, I put it off, since I suspected that it was allergy related. Come spring, they were clear again. So, allergy meds after that.

Later, I had chronic sinusitus that was horrible during the fall (still an allergy problem) and Singulair worked- no more chronic sinusitus, just periodic. I have a new ENT now (I started with him about a year ago), who did a culture and discovered that my problem was PA in my sinuses, and prescribed inhaled cephtaz and Pulmicort with a nasal nebulizer, and that did wonders- after that treatment, my sinuses scored a "0" <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

I guess what I am saying is that surgery <i>for me </i>and my doctor is a last resort, and that killing the bugs and promoting draining of the sinuses (I do nasal washes- neti pot) would be something I'd try first, since the nebulized meds worked when the orals didn't, especially if you haven't been cultured- you need to know what is growing up there, no matter what you decide to do <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

Good luck!
 
A

AnD

New member
I thought I would throw in my experience with my sinuses, just fyi...I was scheduled for sinus surgery as a teen, because my sinuses were clogged up with chronic infection, and I had a deviated septum (no polyps). On my cf clinic nurse's advice, I put it off, since I suspected that it was allergy related. Come spring, they were clear again. So, allergy meds after that.

Later, I had chronic sinusitus that was horrible during the fall (still an allergy problem) and Singulair worked- no more chronic sinusitus, just periodic. I have a new ENT now (I started with him about a year ago), who did a culture and discovered that my problem was PA in my sinuses, and prescribed inhaled cephtaz and Pulmicort with a nasal nebulizer, and that did wonders- after that treatment, my sinuses scored a "0" <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

I guess what I am saying is that surgery <i>for me </i>and my doctor is a last resort, and that killing the bugs and promoting draining of the sinuses (I do nasal washes- neti pot) would be something I'd try first, since the nebulized meds worked when the orals didn't, especially if you haven't been cultured- you need to know what is growing up there, no matter what you decide to do <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

Good luck!
 
A

AnD

New member
I thought I would throw in my experience with my sinuses, just fyi...I was scheduled for sinus surgery as a teen, because my sinuses were clogged up with chronic infection, and I had a deviated septum (no polyps). On my cf clinic nurse's advice, I put it off, since I suspected that it was allergy related. Come spring, they were clear again. So, allergy meds after that.

Later, I had chronic sinusitus that was horrible during the fall (still an allergy problem) and Singulair worked- no more chronic sinusitus, just periodic. I have a new ENT now (I started with him about a year ago), who did a culture and discovered that my problem was PA in my sinuses, and prescribed inhaled cephtaz and Pulmicort with a nasal nebulizer, and that did wonders- after that treatment, my sinuses scored a "0" <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

I guess what I am saying is that surgery <i>for me </i>and my doctor is a last resort, and that killing the bugs and promoting draining of the sinuses (I do nasal washes- neti pot) would be something I'd try first, since the nebulized meds worked when the orals didn't, especially if you haven't been cultured- you need to know what is growing up there, no matter what you decide to do <img src="i/expressions/face-icon-small-wink.gif" border="0"> .

Good luck!
 
A

AnD

New member
I thought I would throw in my experience with my sinuses, just fyi...I was scheduled for sinus surgery as a teen, because my sinuses were clogged up with chronic infection, and I had a deviated septum (no polyps). On my cf clinic nurse's advice, I put it off, since I suspected that it was allergy related. Come spring, they were clear again. So, allergy meds after that.
<br />
<br />Later, I had chronic sinusitus that was horrible during the fall (still an allergy problem) and Singulair worked- no more chronic sinusitus, just periodic. I have a new ENT now (I started with him about a year ago), who did a culture and discovered that my problem was PA in my sinuses, and prescribed inhaled cephtaz and Pulmicort with a nasal nebulizer, and that did wonders- after that treatment, my sinuses scored a "0" <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
<br />
<br />I guess what I am saying is that surgery <i>for me </i>and my doctor is a last resort, and that killing the bugs and promoting draining of the sinuses (I do nasal washes- neti pot) would be something I'd try first, since the nebulized meds worked when the orals didn't, especially if you haven't been cultured- you need to know what is growing up there, no matter what you decide to do <img src="i/expressions/face-icon-small-wink.gif" border="0"> .
<br />
<br />Good luck!
 
A

AnD

New member
Oh, and while I'm not a CFRD "vet" yet <img src="i/expressions/face-icon-small-wink.gif" border="0"> , I have found that cinnamon capsules do help me, except during PMS (which I don't think will be an issue for you, lol). In the beginning I was belching cinnamon, but now that issue has gone away after I took it for a while.
 
A

AnD

New member
Oh, and while I'm not a CFRD "vet" yet <img src="i/expressions/face-icon-small-wink.gif" border="0"> , I have found that cinnamon capsules do help me, except during PMS (which I don't think will be an issue for you, lol). In the beginning I was belching cinnamon, but now that issue has gone away after I took it for a while.
 
A

AnD

New member
Oh, and while I'm not a CFRD "vet" yet <img src="i/expressions/face-icon-small-wink.gif" border="0"> , I have found that cinnamon capsules do help me, except during PMS (which I don't think will be an issue for you, lol). In the beginning I was belching cinnamon, but now that issue has gone away after I took it for a while.
 
A

AnD

New member
Oh, and while I'm not a CFRD "vet" yet <img src="i/expressions/face-icon-small-wink.gif" border="0"> , I have found that cinnamon capsules do help me, except during PMS (which I don't think will be an issue for you, lol). In the beginning I was belching cinnamon, but now that issue has gone away after I took it for a while.
 
A

AnD

New member
Oh, and while I'm not a CFRD "vet" yet <img src="i/expressions/face-icon-small-wink.gif" border="0"> , I have found that cinnamon capsules do help me, except during PMS (which I don't think will be an issue for you, lol). In the beginning I was belching cinnamon, but now that issue has gone away after I took it for a while.
 
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