Nasal Polyps

[Beccamom]

<P><BR>Allansarmy,</P>
<P></P>
<P>Thanks for your response. We recently did blookwork for mold/fungus allergens because my daughter was very opposed to skin testing. She tested at <.1 for everything so the Dr. said no need to test further. The lab work says .3 to .6 was incolnclusive and .6 and up was an allergy. So I think <.1 meant nothing measured at all. We have a follow-up with the allergist next week. The polyps caught us off guard as we thought her sinuses were impacted with old infection, but none was found only the polyps. I will specifically ask for the those allergy tests if the doctor thinks it is as all possible given her blood test result. Thanks for your insight. My daughter is in limbo for CF diagnosis. This seems one more thing leading us back to the CF possibility.</P>
<P></P>
<P>Jen</P>

 

[fallenarches]

Our daughter is 16 and has had a positive ID for nasal polyps.  In the past she was tested for allergies but reacted to none of them.  It's been 8 years or so and I know that can change but she has no outward symptoms of allergies-sneezing, watery eye, runny nose, etc.  I have read that nasal polyps are most common in people with CF vs the "general" public.  In your experience is that true.  Did you see a lot of non-CF patients with nasal polyps?  She has a history of asthma, bronchitis and pneumonia as well as runny stools so she will be tested for CF-but her appointment isn't for 2 more weeks.

 

[fallenarches]

Our daughter is 16 and has had a positive ID for nasal polyps. In the past she was tested for allergies but reacted to none of them. It's been 8 years or so and I know that can change but she has no outward symptoms of allergies-sneezing, watery eye, runny nose, etc. I have read that nasal polyps are most common in people with CF vs the "general" public. In your experience is that true. Did you see a lot of non-CF patients with nasal polyps? She has a history of asthma, bronchitis andpneumoniaas well as runny stools so she will be tested for CF-but her appointment isn't for 2 more weeks.

 

[fallenarches]

Our daughter is 16 and has had a positive ID for nasal polyps. In the past she was tested for allergies but reacted to none of them. It's been 8 years or so and I know that can change but she has no outward symptoms of allergies-sneezing, watery eye, runny nose, etc. I have read that nasal polyps are most common in people with CF vs the "general" public. In your experience is that true. Did you see a lot of non-CF patients with nasal polyps? She has a history of asthma, bronchitis andpneumoniaas well as runny stools so she will be tested for CF-but her appointment isn't for 2 more weeks.

 

[Beccamom]

Fallenarches: You will find great support here. My daughter is 12 and we have been searching for a diagnosis for about a year now. Her new pulmonologist for the last 6 months is treating her with CF treatments even though she remains in limbo for a diagnosis. She feels incredible with the new treatments (Vest 2 times daly, hypertonic saline, and probioitics). We continue to slowly decrease her asthma meds becauese her Cortisol was virtually unmeasurable so we could not abruptly stop the inhailed steriods. She never argues about treatmetns because they work so well. She never wants to feel like she used to feel again. Best wishes on her testing in 2 weeks. Is this for a sweat test or initial pulmonary appointment. If it isnt' the sweat test, you may get your primary to request it so you can have the results when you get to the pulmonologist.

 

[Beccamom]

Fallenarches: You will find great support here. My daughter is 12 and we have been searching for a diagnosis for about a year now. Her new pulmonologist for the last 6 months is treating her with CF treatments even though she remains in limbo for a diagnosis. She feels incredible with the new treatments (Vest 2 times daly, hypertonic saline, and probioitics). We continue to slowly decrease her asthma meds becauese her Cortisol was virtually unmeasurable so we could not abruptly stop the inhailed steriods. She never argues about treatmetns because they work so well. She never wants to feel like she used to feel again. Best wishes on her testing in 2 weeks. Is this for a sweat test or initial pulmonary appointment. If it isnt' the sweat test, you may get your primary to request it so you can have the results when you get to the pulmonologist.

 

[Beccamom]

Fallenarches: You will find great support here. My daughter is 12 and we have been searching for a diagnosis for about a year now. Her new pulmonologist for the last 6 months is treating her with CF treatments even though she remains in limbo for a diagnosis. She feels incredible with the new treatments (Vest 2 times daly, hypertonic saline, and probioitics). We continue to slowly decrease her asthma meds becauese her Cortisol was virtually unmeasurable so we could not abruptly stop the inhailed steriods. She never argues about treatmetns because they work so well. She never wants to feel like she used to feel again. Best wishes on her testing in 2 weeks. Is this for a sweat test or initial pulmonary appointment. If it isnt' the sweat test, you may get your primary to request it so you can have the results when you get to the pulmonologist.

 

[fallenarches]

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

Fallenarches: You will find great support here. My daughter is 12 and we have been searching for a diagnosis for about a year now. Her new pulmonologist for the last 6 months is treating her with CF treatments even though she remains in limbo for a diagnosis. She feels incredible with the new treatments (Vest 2 times daly, hypertonic saline, and probioitics). We continue to slowly decrease her asthma meds becauese her Cortisol was virtually unmeasurable so we could not abruptly stop the inhailed steriods. She never argues about treatmetns because they work so well. She never wants to feel like she used to feel again. Best wishes on her testing in 2 weeks. Is this for a sweat test or initial pulmonary appointment. If it isnt' the sweat test, you may get your primary to request it so you can have the results when you get to the pulmonologist.</end quote></div>

<div><br></div><div><span class="Apple-style-span">She will have a sweat test and then a consultation with a pulmonologist<span class="Apple-style-span">. She has the sweat test in the morning, assuming they will have the results by her afternoon appointment with the pulmonologist<span class="Apple-style-span">?  She doesn't really have any "active" asthma issues right now.  She does have a cough but it is usually one cough-really "tight" sounding, which usually means she is heading for bronchitis, but not always.  It sounds like they will then decide if genetic testing is indicated.  The nasal polyps are what triggered the testing to start.  She has been having issues with mouth infections which turned out to be a cyst in her jaw that has since been removed.  We just discovered a ganglion cyst in her wrist--not sure if these are of issue or not.  All of the meds, mutations, acronyms for various tests/levels, etc. are all foreign to me so I have no idea what people are saying half the time <img src="i/expressions/face-icon-small-smile.gif" border="0">. </div>

 

[fallenarches]

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

Fallenarches: You will find great support here. My daughter is 12 and we have been searching for a diagnosis for about a year now. Her new pulmonologist for the last 6 months is treating her with CF treatments even though she remains in limbo for a diagnosis. She feels incredible with the new treatments (Vest 2 times daly, hypertonic saline, and probioitics). We continue to slowly decrease her asthma meds becauese her Cortisol was virtually unmeasurable so we could not abruptly stop the inhailed steriods. She never argues about treatmetns because they work so well. She never wants to feel like she used to feel again. Best wishes on her testing in 2 weeks. Is this for a sweat test or initial pulmonary appointment. If it isnt' the sweat test, you may get your primary to request it so you can have the results when you get to the pulmonologist.</end quote>

<br><span class="Apple-style-span">She will have a sweat test and then a consultation with apulmonologist<span class="Apple-style-span">. She has the sweat test in the morning, assuming they will have the results by her afternoon appointment with thepulmonologist<span class="Apple-style-span">? She doesn't really have any "active" asthma issues right now. She does have a cough but it is usually one cough-really "tight" sounding, which usually means she is heading for bronchitis, but not always. It sounds like they will then decide if genetic testing is indicated. The nasal polyps are what triggered the testing to start. She has been having issues with mouth infections which turned out to be a cyst in her jaw that has since been removed. We just discovered aganglioncyst in her wrist--not sure if these are of issue or not. All of the meds, mutations, acronyms for various tests/levels, etc. are all foreign to me so I have no idea what people are saying half the time <img src="i/expressions/face-icon-small-smile.gif" border="0">.

 

[fallenarches]

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

Fallenarches: You will find great support here. My daughter is 12 and we have been searching for a diagnosis for about a year now. Her new pulmonologist for the last 6 months is treating her with CF treatments even though she remains in limbo for a diagnosis. She feels incredible with the new treatments (Vest 2 times daly, hypertonic saline, and probioitics). We continue to slowly decrease her asthma meds becauese her Cortisol was virtually unmeasurable so we could not abruptly stop the inhailed steriods. She never argues about treatmetns because they work so well. She never wants to feel like she used to feel again. Best wishes on her testing in 2 weeks. Is this for a sweat test or initial pulmonary appointment. If it isnt' the sweat test, you may get your primary to request it so you can have the results when you get to the pulmonologist.</end quote>

<br><span class="Apple-style-span">She will have a sweat test and then a consultation with apulmonologist<span class="Apple-style-span">. She has the sweat test in the morning, assuming they will have the results by her afternoon appointment with thepulmonologist<span class="Apple-style-span">? She doesn't really have any "active" asthma issues right now. She does have a cough but it is usually one cough-really "tight" sounding, which usually means she is heading for bronchitis, but not always. It sounds like they will then decide if genetic testing is indicated. The nasal polyps are what triggered the testing to start. She has been having issues with mouth infections which turned out to be a cyst in her jaw that has since been removed. We just discovered aganglioncyst in her wrist--not sure if these are of issue or not. All of the meds, mutations, acronyms for various tests/levels, etc. are all foreign to me so I have no idea what people are saying half the time <img src="i/expressions/face-icon-small-smile.gif" border="0">.

 

[Mayasmom]

Jen, my 13 year old daughter, Maya was diagnosed with CF at birth> She had her first sinus surgery at 4 months. She was tested for allergies and tested at a 3 for a few different trees and mold. She doesn't really have allergy symptoms but she's been on Zyrtec or Allegra and Flonase her whole life. She's had 5 other sinus clean-outs. Her ENT has lead me to believe that the main cause of the polyps is the same as all other issues in CF- thick mucus and inflammation leading to the polyps which lead to inflammation and infection and the cycle continues. Maya has been using the NeilMed Sinus rinse for about 2.5 years now and it really seems to make a difference. After her last sugery in June, she started using the "Nasoneb" nasal nebulizer with Mometasone (an anti-inflammatory) and saline, along with Mupirin, a topical antibiotic. She is still doing the sinus rinses too. So far she is doing well and the polyps have not returned for over 3 months! In the past her polyps returned within a couples of weeks of having surgery. Maybe your daughter can try the rinses again after a few days. I would encourage her to do it. I really do believe that it helps. Good luck!

 

[Mayasmom]

Jen, my 13 year old daughter, Maya was diagnosed with CF at birth> She had her first sinus surgery at 4 months. She was tested for allergies and tested at a 3 for a few different trees and mold. She doesn't really have allergy symptoms but she's been on Zyrtec or Allegra and Flonase her whole life. She's had 5 other sinus clean-outs. Her ENT has lead me to believe that the main cause of the polyps is the same as all other issues in CF- thick mucus and inflammation leading to the polyps which lead to inflammation and infection and the cycle continues. Maya has been using the NeilMed Sinus rinse for about 2.5 years now and it really seems to make a difference. After her last sugery in June, she started using the "Nasoneb" nasal nebulizer with Mometasone (an anti-inflammatory) and saline, along with Mupirin, a topical antibiotic. She is still doing the sinus rinses too. So far she is doing well and the polyps have not returned for over 3 months! In the past her polyps returned within a couples of weeks of having surgery. Maybe your daughter can try the rinses again after a few days. I would encourage her to do it. I really do believe that it helps. Good luck!

 

[Mayasmom]

Jen, my 13 year old daughter, Maya was diagnosed with CF at birth> She had her first sinus surgery at 4 months. She was tested for allergies and tested at a 3 for a few different trees and mold. She doesn't really have allergy symptoms but she's been on Zyrtec or Allegra and Flonase her whole life. She's had 5 other sinus clean-outs. Her ENT has lead me to believe that the main cause of the polyps is the same as all other issues in CF- thick mucus and inflammation leading to the polyps which lead to inflammation and infection and the cycle continues. Maya has been using the NeilMed Sinus rinse for about 2.5 years now and it really seems to make a difference. After her last sugery in June, she started using the "Nasoneb" nasal nebulizer with Mometasone (an anti-inflammatory) and saline, along with Mupirin, a topical antibiotic. She is still doing the sinus rinses too. So far she is doing well and the polyps have not returned for over 3 months! In the past her polyps returned within a couples of weeks of having surgery. Maybe your daughter can try the rinses again after a few days. I would encourage her to do it. I really do believe that it helps. Good luck!
<br />

 

[Treble]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i>  so when the surgeon removed the polyps (that were holding her eyes in place and we had no idea) instead of the bone, her eyes fell back in her sinus cavities. </end quote></div>

<div><br></div><div>DEAR GOD!!! Reading your post was like watching a scary movie that you didn't know was a scary movie until it scarred the crap outta you outta nowhere!! XD</div><div><br></div><div>Afk for a bit, gonna go get a catscan now so I don't have nightmares of my eyes falling into my skull. XD</div>

 

[Treble]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i> so when the surgeon removed the polyps (that were holding her eyes in place and we had no idea) instead of the bone, her eyes fell back in her sinus cavities. </end quote>

<br>DEAR GOD!!! Reading your post was like watching a scary movie that you didn't know was a scary movie until it scarred the crap outta you outta nowhere!! XD<br>Afk for a bit, gonna go get a catscan now so I don't have nightmares of my eyes falling into my skull. XD

 

[Treble]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i> so when the surgeon removed the polyps (that were holding her eyes in place and we had no idea) instead of the bone, her eyes fell back in her sinus cavities. </end quote>

<br>DEAR GOD!!! Reading your post was like watching a scary movie that you didn't know was a scary movie until it scarred the crap outta you outta nowhere!! XD<br>Afk for a bit, gonna go get a catscan now so I don't have nightmares of my eyes falling into my skull. XD

 

[fallenarches]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i> In our sweeties case the polyps or the inflammation(we're not really sure) ate the bone between her sinus cavities and her eye cavities on both sides, so when the surgeon removed the polyps (that were holding her eyes in place and we had no idea) instead of the bone, her eyes fell back in her sinus cavities. !</end quote></div>

<div><br></div><div>I missed this the first time through---for our DD all of this testing/concern stems from a cyst in her jaw.  She was told to try not to sneeze, she isn't supposed to blow her nose or have any "pressure" in her nose because the bone is very thin between her sinus and jaw/gum--I wonder if this was from the polyps??  WOW!!  She will NOT be reading this post.  I'm a little freaked out about this now too....off to look at her CT scan again.</div>

 

[fallenarches]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i> In our sweeties case the polyps or the inflammation(we're not really sure) ate the bone between her sinus cavities and her eye cavities on both sides, so when the surgeon removed the polyps (that were holding her eyes in place and we had no idea) instead of the bone, her eyes fell back in her sinus cavities. !</end quote>

<br>I missed this the first time through---for our DD all of this testing/concern stems from a cyst in her jaw. She was told to try not to sneeze, she isn't supposed to blow her nose or have any "pressure" in her nose because the bone is very thin between her sinus and jaw/gum--I wonder if this was from the polyps?? WOW!! She will NOT be reading this post. I'm a little freaked out about this now too....off to look at her CT scan again.

 

[fallenarches]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JENNYC</b></i> In our sweeties case the polyps or the inflammation(we're not really sure) ate the bone between her sinus cavities and her eye cavities on both sides, so when the surgeon removed the polyps (that were holding her eyes in place and we had no idea) instead of the bone, her eyes fell back in her sinus cavities. !</end quote>

<br>I missed this the first time through---for our DD all of this testing/concern stems from a cyst in her jaw. She was told to try not to sneeze, she isn't supposed to blow her nose or have any "pressure" in her nose because the bone is very thin between her sinus and jaw/gum--I wonder if this was from the polyps?? WOW!! She will NOT be reading this post. I'm a little freaked out about this now too....off to look at her CT scan again.

 

[JENNYC]

It was a very shocking, very unexpected event, but none the less it happened. I just wanted to apologize if I shouldn't have said all that I did. I forget that little ones might be reading this as well. I just wanted everyone to be aware as we were not, and are now paying for it, or rather my baby is and will forever. Now not only does she have CF she now her looks are impaired as well. If only we would have known, we could have prevented this <img src="i/expressions/face-icon-small-sad.gif" border="0"> I will try to be more careful about how and what I post from now on. Again I am truly sorry if I have scared anyone, it was not my intension. My best to all and I pray this is only our story, and that no one else has to go through that.