Why doesn't it seem like doctors are super aggressive with sinuses?

[edan]

<P>Can anyone offer some advice?</P>
<P>We are always taught to be super aggressive with the lungs. I completely get that. But since the sinuses "feed" the lungs, and all CF patients apparently have bad sinuses, why don't doctors seem aggressive with these as well?</P>
<P></P>
<P>The reason I ask is that I am pretty sure my daughter's issues are mostly sinus related. I don't think they are super bad, but I definitely think they are the source of her newly acquired staph, periodic snoring and easily acquired post nasal drip. I am just waiting for the pseudo to set in there. She doesn't have polyps, but her tonsils are at what seems to be a permanent state of enlargement.</P>
<P></P>
<P>I am curious if others who don't have super serious sinus issue have an aggressive treatment plan in place for their sinuses.</P>
<P></P>
<P>Thanks!</P>
<P></P>
<P>Edan.</P>

 

[edan]

<P>Can anyone offer some advice?</P>
<P>We are always taught to be super aggressive with the lungs. I completely get that. But since the sinuses "feed" the lungs, and all CF patients apparently have bad sinuses, why don't doctors seem aggressive with these as well?</P>
<P></P>
<P>The reason I ask is that I am pretty sure my daughter's issues are mostly sinus related. I don't think they are super bad, but I definitely think they are the source of her newly acquired staph, periodic snoring and easily acquired post nasal drip. I am just waiting for the pseudo to set in there. She doesn't have polyps, but her tonsils are at what seems to be a permanent state of enlargement.</P>
<P></P>
<P>I am curious if others who don't have super serious sinus issue have an aggressive treatment plan in place for their sinuses.</P>
<P></P>
<P>Thanks!</P>
<P></P>
<P>Edan.</P>

 

[edan]

<P>Can anyone offer some advice?</P>
<P>We are always taught to be super aggressive with the lungs. I completely get that. But since the sinuses "feed" the lungs, and all CF patients apparently have bad sinuses, why don't doctors seem aggressive with these as well?</P>
<P></P>
<P>The reason I ask is that I am pretty sure my daughter's issues are mostly sinus related. I don't think they are super bad, but I definitely think they are the source of her newly acquired staph, periodic snoring and easily acquired post nasal drip. I am just waiting for the pseudo to set in there. She doesn't have polyps, but her tonsils are at what seems to be a permanent state of enlargement.</P>
<P></P>
<P>I am curious if others who don't have super serious sinus issue have an aggressive treatment plan in place for their sinuses.</P>
<P></P>
<P>Thanks!</P>
<P></P>
<P>Edan.</P>

 

[kitomd21]

I wonder about DD and her sinuses/lack of being aggressive. She has always snored...they wonder if her adenoids are enlarged. She doesn't suffer from repeated sinus infections - that I know of. She doesn't complain about headaches or other things that may indicated sinus problems OTHER THAN snoring and occasionally breathing through her mouth. They wanted to start with a sleep study and go from there. A sleep study on a three-year-old is a funny idea...don't you think! (Sarcasm!). If her adenoids are the issue, they are actually beneficial in keeping bacteria out of her lungs. I'm waiting to pursue things further...but...I'm with you on this one...

 

[kitomd21]

I wonder about DD and her sinuses/lack of being aggressive. She has always snored...they wonder if her adenoids are enlarged. She doesn't suffer from repeated sinus infections - that I know of. She doesn't complain about headaches or other things that may indicated sinus problems OTHER THAN snoring and occasionally breathing through her mouth. They wanted to start with a sleep study and go from there. A sleep study on a three-year-old is a funny idea...don't you think! (Sarcasm!). If her adenoids are the issue, they are actually beneficial in keeping bacteria out of her lungs. I'm waiting to pursue things further...but...I'm with you on this one...

 

[kitomd21]

I wonder about DD and her sinuses/lack of being aggressive. She has always snored...they wonder if her adenoids are enlarged. She doesn't suffer from repeated sinus infections - that I know of. She doesn't complain about headaches or other things that may indicated sinus problems OTHER THAN snoring and occasionally breathing through her mouth. They wanted to start with a sleep study and go from there. A sleep study on a three-year-old is a funny idea...don't you think! (Sarcasm!). If her adenoids are the issue, they are actually beneficial in keeping bacteria out of her lungs. I'm waiting to pursue things further...but...I'm with you on this one...

 

[Ratatosk]

I think sometimes it's because sinus surgery isn't always a quick fix. I know several people who've had sinus surgery, only to have to go back again and again for a repeat. A friend of mine's daughter had her tonsils, adenoids done the same time they did sinus surgery for obstruction and she was warned by the doctor that they'd be back again. Sure enough, two years later and they're scheduling another sinus surgery over the holidays.

 

[Ratatosk]

I think sometimes it's because sinus surgery isn't always a quick fix. I know several people who've had sinus surgery, only to have to go back again and again for a repeat. A friend of mine's daughter had her tonsils, adenoids done the same time they did sinus surgery for obstruction and she was warned by the doctor that they'd be back again. Sure enough, two years later and they're scheduling another sinus surgery over the holidays.

 

[Ratatosk]

I think sometimes it's because sinus surgery isn't always a quick fix. I know several people who've had sinus surgery, only to have to go back again and again for a repeat. A friend of mine's daughter had her tonsils, adenoids done the same time they did sinus surgery for obstruction and she was warned by the doctor that they'd be back again. Sure enough, two years later and they're scheduling another sinus surgery over the holidays.

 

[serendipity730]

I don't know how old your kids are, but in my experience, pediatric CF docs don't like to recommend sinus surgery for many of the reasons Liza mentioned. It can lead to a never ending cycle. When I was 20, I went to an adult CF doc at Johns Hopkins for a second opinion. He recommended taking a closer look at my sinuses and considering surgery. My pediatric doc at Children's Hospital of Philadelphia balked at this, saying "All ppl with CF have chronic sinus disease) and wouldn't write the script for a sinus CT. Fortunately, the doc at Hopkins would. I didn't have surgery until a few years later at 23. I had a second surgery at 27. Sinus surgery requires copious follow-up (lots of nasal rinsing and weekly follow up appointments to try to remove additional mucus crusts, etc).

I think it is probably a good idea to have a baseline sinus CT at some point during childhood. I also highly recommended the NeilMed sinus rinse.

I wish you all the best!

 

[serendipity730]

I don't know how old your kids are, but in my experience, pediatric CF docs don't like to recommend sinus surgery for many of the reasons Liza mentioned. It can lead to a never ending cycle. When I was 20, I went to an adult CF doc at Johns Hopkins for a second opinion. He recommended taking a closer look at my sinuses and considering surgery. My pediatric doc at Children's Hospital of Philadelphia balked at this, saying "All ppl with CF have chronic sinus disease) and wouldn't write the script for a sinus CT. Fortunately, the doc at Hopkins would. I didn't have surgery until a few years later at 23. I had a second surgery at 27. Sinus surgery requires copious follow-up (lots of nasal rinsing and weekly follow up appointments to try to remove additional mucus crusts, etc).

I think it is probably a good idea to have a baseline sinus CT at some point during childhood. I also highly recommended the NeilMed sinus rinse.

I wish you all the best!

 

[serendipity730]

I don't know how old your kids are, but in my experience, pediatric CF docs don't like to recommend sinus surgery for many of the reasons Liza mentioned. It can lead to a never ending cycle. When I was 20, I went to an adult CF doc at Johns Hopkins for a second opinion. He recommended taking a closer look at my sinuses and considering surgery. My pediatric doc at Children's Hospital of Philadelphia balked at this, saying "All ppl with CF have chronic sinus disease) and wouldn't write the script for a sinus CT. Fortunately, the doc at Hopkins would. I didn't have surgery until a few years later at 23. I had a second surgery at 27. Sinus surgery requires copious follow-up (lots of nasal rinsing and weekly follow up appointments to try to remove additional mucus crusts, etc).

I think it is probably a good idea to have a baseline sinus CT at some point during childhood. I also highly recommended the NeilMed sinus rinse.

I wish you all the best!

 

[Rebjane]

It also may depend on your clinic/CF doc. Some may be more aggressive than others. I agree that the sinuses feed the lungs. My daughter was having a lot of issues when she was 2 or so, her regular pediatrician ordered a sinus CT, which I can't remember what it showed but it was not normal. He told me to bring the CT to her CF doc which I did.

The CF doc kind of sighed and said he's never seen a normal sinus CT on a CF'er. I think he was annoyed our pediatrician ordered the CT.

Another CF doc recommended doing Hypertonic saline nasal washes twice a day, to "keep the garage clean" his exact words. I did do this for a while; My daughter HATED it. It was torture. She is the sweetest, easy going little girl, and she looked at me after doing the HTS nasal irrigation and said "I hate you, don't ever come near me with that again".

So I didn't. But, We started HTS nebs I use a face mask and I do feel like it gets up in her sinuses to get the gunk out.

 

[Rebjane]

It also may depend on your clinic/CF doc. Some may be more aggressive than others. I agree that the sinuses feed the lungs. My daughter was having a lot of issues when she was 2 or so, her regular pediatrician ordered a sinus CT, which I can't remember what it showed but it was not normal. He told me to bring the CT to her CF doc which I did.

The CF doc kind of sighed and said he's never seen a normal sinus CT on a CF'er. I think he was annoyed our pediatrician ordered the CT.

Another CF doc recommended doing Hypertonic saline nasal washes twice a day, to "keep the garage clean" his exact words. I did do this for a while; My daughter HATED it. It was torture. She is the sweetest, easy going little girl, and she looked at me after doing the HTS nasal irrigation and said "I hate you, don't ever come near me with that again".

So I didn't. But, We started HTS nebs I use a face mask and I do feel like it gets up in her sinuses to get the gunk out.

 

[Rebjane]

It also may depend on your clinic/CF doc. Some may be more aggressive than others. I agree that the sinuses feed the lungs. My daughter was having a lot of issues when she was 2 or so, her regular pediatrician ordered a sinus CT, which I can't remember what it showed but it was not normal. He told me to bring the CT to her CF doc which I did.

The CF doc kind of sighed and said he's never seen a normal sinus CT on a CF'er. I think he was annoyed our pediatrician ordered the CT.

Another CF doc recommended doing Hypertonic saline nasal washes twice a day, to "keep the garage clean" his exact words. I did do this for a while; My daughter HATED it. It was torture. She is the sweetest, easy going little girl, and she looked at me after doing the HTS nasal irrigation and said "I hate you, don't ever come near me with that again".

So I didn't. But, We started HTS nebs I use a face mask and I do feel like it gets up in her sinuses to get the gunk out.

 

[edan]

Thanks everyone. I definitely want tO avoid taking anything out or any kind if surgery. We are doing saline rinses with the netipot. A doctor recommended using hts for this, but she already just barely tolerates the regular saline. I have often wondered what wool happen if we poured the pulmozyme in there. Haven't dared done it, but curious if anyone ha tried. Also, has anyone had luck adding baking soda and/or baby shampoo? I wonder if the chances of introducing bad bacteria wig these far outweigh any potential benefits?

Thanks,
Edan

 

[edan]

Thanks everyone. I definitely want tO avoid taking anything out or any kind if surgery. We are doing saline rinses with the netipot. A doctor recommended using hts for this, but she already just barely tolerates the regular saline. I have often wondered what wool happen if we poured the pulmozyme in there. Haven't dared done it, but curious if anyone ha tried. Also, has anyone had luck adding baking soda and/or baby shampoo? I wonder if the chances of introducing bad bacteria wig these far outweigh any potential benefits?

Thanks,
Edan

 

[edan]

Thanks everyone. I definitely want tO avoid taking anything out or any kind if surgery. We are doing saline rinses with the netipot. A doctor recommended using hts for this, but she already just barely tolerates the regular saline. I have often wondered what wool happen if we poured the pulmozyme in there. Haven't dared done it, but curious if anyone ha tried. Also, has anyone had luck adding baking soda and/or baby shampoo? I wonder if the chances of introducing bad bacteria wig these far outweigh any potential benefits?

Thanks,
Edan

 

[edan]

Thanks everyone. I definitely want tO avoid taking anything out or any kind if surgery. We are doing saline rinses with the netipot. A doctor recommended using hts for this, but she already just barely tolerates the regular saline. I have often wondered what wool happen if we poured the pulmozyme in there. Haven't dared done it, but curious if anyone ha tried. Also, has anyone had luck adding baking soda and/or baby shampoo? I wonder if the chances of introducing bad bacteria wig these far outweigh any potential benefits?

Thanks,
Edan

 

[edan]

Thanks everyone. I definitely want tO avoid taking anything out or any kind if surgery. We are doing saline rinses with the netipot. A doctor recommended using hts for this, but she already just barely tolerates the regular saline. I have often wondered what wool happen if we poured the pulmozyme in there. Haven't dared done it, but curious if anyone ha tried. Also, has anyone had luck adding baking soda and/or baby shampoo? I wonder if the chances of introducing bad bacteria wig these far outweigh any potential benefits?

Thanks,
Edan