Sinus Infections

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Stacia

Guest
Hi Jada first of all the bracelets look wonderful, I would have never noticed they had smaller print. Thanks again for all that you are doing.

Back to Stacia we just had a CT scan a couple of weeks ago and took it with us to the ENT. It showed some blockage but he said for a CF patient it didn't look bad at all. So this was his idea. I took it he know what he was talking about he specialized in CF patients. and yes she clears her throat all the time. Thanks again
 
S

Stacia

Guest
Hi Jada first of all the bracelets look wonderful, I would have never noticed they had smaller print. Thanks again for all that you are doing.

Back to Stacia we just had a CT scan a couple of weeks ago and took it with us to the ENT. It showed some blockage but he said for a CF patient it didn't look bad at all. So this was his idea. I took it he know what he was talking about he specialized in CF patients. and yes she clears her throat all the time. Thanks again
 
S

Stacia

Guest
Hi Jada first of all the bracelets look wonderful, I would have never noticed they had smaller print. Thanks again for all that you are doing.

Back to Stacia we just had a CT scan a couple of weeks ago and took it with us to the ENT. It showed some blockage but he said for a CF patient it didn't look bad at all. So this was his idea. I took it he know what he was talking about he specialized in CF patients. and yes she clears her throat all the time. Thanks again
 
S

Stacia

Guest
Hi Jada first of all the bracelets look wonderful, I would have never noticed they had smaller print. Thanks again for all that you are doing.

Back to Stacia we just had a CT scan a couple of weeks ago and took it with us to the ENT. It showed some blockage but he said for a CF patient it didn't look bad at all. So this was his idea. I took it he know what he was talking about he specialized in CF patients. and yes she clears her throat all the time. Thanks again
 
S

Stacia

Guest
Hi Jada first of all the bracelets look wonderful, I would have never noticed they had smaller print. Thanks again for all that you are doing.
<br />
<br />Back to Stacia we just had a CT scan a couple of weeks ago and took it with us to the ENT. It showed some blockage but he said for a CF patient it didn't look bad at all. So this was his idea. I took it he know what he was talking about he specialized in CF patients. and yes she clears her throat all the time. Thanks again
 
S

Sakem

New member
could u get a second opinion? If they r going to do a surgery anyways I would think they would go ahead and clean the sinuses out, but then i'm not a doctor. My son 11, just had his 3rd sinus surgery in 14 months. 1st one, they also took out tonsils and adnoids, didn't notice it helping anything, had to repeat surgery 7 mos later, then 4 mos later, CT showed sinuses completely blocked....I am very frustrated with ENT doctors, they really don't offer alot of advice, when I mention Pulmozyme inhaled via mask into sinuses, their answer is "not research to show it works" My rational is that is has to, I would think the mucus is the same in the sinuses as what is in the lungs. I do think this sinuses stuff is very important to their future health, cause I;m sure it's only a matter of time, before sinus problems find their way to the lungs, so that is why I would like to squash what is colonized in the sinuses
 
S

Sakem

New member
could u get a second opinion? If they r going to do a surgery anyways I would think they would go ahead and clean the sinuses out, but then i'm not a doctor. My son 11, just had his 3rd sinus surgery in 14 months. 1st one, they also took out tonsils and adnoids, didn't notice it helping anything, had to repeat surgery 7 mos later, then 4 mos later, CT showed sinuses completely blocked....I am very frustrated with ENT doctors, they really don't offer alot of advice, when I mention Pulmozyme inhaled via mask into sinuses, their answer is "not research to show it works" My rational is that is has to, I would think the mucus is the same in the sinuses as what is in the lungs. I do think this sinuses stuff is very important to their future health, cause I;m sure it's only a matter of time, before sinus problems find their way to the lungs, so that is why I would like to squash what is colonized in the sinuses
 
S

Sakem

New member
could u get a second opinion? If they r going to do a surgery anyways I would think they would go ahead and clean the sinuses out, but then i'm not a doctor. My son 11, just had his 3rd sinus surgery in 14 months. 1st one, they also took out tonsils and adnoids, didn't notice it helping anything, had to repeat surgery 7 mos later, then 4 mos later, CT showed sinuses completely blocked....I am very frustrated with ENT doctors, they really don't offer alot of advice, when I mention Pulmozyme inhaled via mask into sinuses, their answer is "not research to show it works" My rational is that is has to, I would think the mucus is the same in the sinuses as what is in the lungs. I do think this sinuses stuff is very important to their future health, cause I;m sure it's only a matter of time, before sinus problems find their way to the lungs, so that is why I would like to squash what is colonized in the sinuses
 
S

Sakem

New member
could u get a second opinion? If they r going to do a surgery anyways I would think they would go ahead and clean the sinuses out, but then i'm not a doctor. My son 11, just had his 3rd sinus surgery in 14 months. 1st one, they also took out tonsils and adnoids, didn't notice it helping anything, had to repeat surgery 7 mos later, then 4 mos later, CT showed sinuses completely blocked....I am very frustrated with ENT doctors, they really don't offer alot of advice, when I mention Pulmozyme inhaled via mask into sinuses, their answer is "not research to show it works" My rational is that is has to, I would think the mucus is the same in the sinuses as what is in the lungs. I do think this sinuses stuff is very important to their future health, cause I;m sure it's only a matter of time, before sinus problems find their way to the lungs, so that is why I would like to squash what is colonized in the sinuses
 
S

Sakem

New member
could u get a second opinion? If they r going to do a surgery anyways I would think they would go ahead and clean the sinuses out, but then i'm not a doctor. My son 11, just had his 3rd sinus surgery in 14 months. 1st one, they also took out tonsils and adnoids, didn't notice it helping anything, had to repeat surgery 7 mos later, then 4 mos later, CT showed sinuses completely blocked....I am very frustrated with ENT doctors, they really don't offer alot of advice, when I mention Pulmozyme inhaled via mask into sinuses, their answer is "not research to show it works" My rational is that is has to, I would think the mucus is the same in the sinuses as what is in the lungs. I do think this sinuses stuff is very important to their future health, cause I;m sure it's only a matter of time, before sinus problems find their way to the lungs, so that is why I would like to squash what is colonized in the sinuses
 
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grassisgreener

New member
My daughter is 5 and has had alot of sinus trouble. I really kept getting the run around from clinic & ped and at first from the ENT. When she finally had her surgery done at age 4.5 after struggling with sinus trouble for well over a year, the ENT said he had never seen such bad sinuses. It really upset me bc I felt like no one would listen to me. She also had her adenoids out but tonsils were left in bc they never really swelled up much. Anyway, we do daily sinus rinses and that REALLY helps, during times of congestion we do them twice a day (it seems like we will be doing them twice a day September-April). I don't know how old your daughter is, but even my 2 year old (no CF) has done a sinus rinse. We use the Neilmed bottle and Neilmed Saline packets. My daughter loves doing them bc they make her feel better.

Hope you can get some answers and she can get some relief!

ETA: My daughter was on months of antibiotics for her sinuses and when the ENT got in there and saw how thick the infection was (it was making her sinuses buldge) he said no amount of abx would have gotten rid of the infection. I just read that Stacia is clearing her throat and think the sinus rinses would help with that ALOT. It really helps cut down/eliminate the post-nasal drainage. Here is a clip of my daughter doing a rinse:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=aZgueuvJIsQ
">http://www.youtube.com/watch?v=aZgueuvJIsQ
</a>
Sakem, my daughter started pulmozyme with a mask a couple of weeks ago and I can tell a difference in her nasal mucus. From what I read, the studies are showing that it helps <b>some</b> people. I think it is worth a try.
 
G

grassisgreener

New member
My daughter is 5 and has had alot of sinus trouble. I really kept getting the run around from clinic & ped and at first from the ENT. When she finally had her surgery done at age 4.5 after struggling with sinus trouble for well over a year, the ENT said he had never seen such bad sinuses. It really upset me bc I felt like no one would listen to me. She also had her adenoids out but tonsils were left in bc they never really swelled up much. Anyway, we do daily sinus rinses and that REALLY helps, during times of congestion we do them twice a day (it seems like we will be doing them twice a day September-April). I don't know how old your daughter is, but even my 2 year old (no CF) has done a sinus rinse. We use the Neilmed bottle and Neilmed Saline packets. My daughter loves doing them bc they make her feel better.

Hope you can get some answers and she can get some relief!

ETA: My daughter was on months of antibiotics for her sinuses and when the ENT got in there and saw how thick the infection was (it was making her sinuses buldge) he said no amount of abx would have gotten rid of the infection. I just read that Stacia is clearing her throat and think the sinus rinses would help with that ALOT. It really helps cut down/eliminate the post-nasal drainage. Here is a clip of my daughter doing a rinse:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=aZgueuvJIsQ
">http://www.youtube.com/watch?v=aZgueuvJIsQ
</a>
Sakem, my daughter started pulmozyme with a mask a couple of weeks ago and I can tell a difference in her nasal mucus. From what I read, the studies are showing that it helps <b>some</b> people. I think it is worth a try.
 
G

grassisgreener

New member
My daughter is 5 and has had alot of sinus trouble. I really kept getting the run around from clinic & ped and at first from the ENT. When she finally had her surgery done at age 4.5 after struggling with sinus trouble for well over a year, the ENT said he had never seen such bad sinuses. It really upset me bc I felt like no one would listen to me. She also had her adenoids out but tonsils were left in bc they never really swelled up much. Anyway, we do daily sinus rinses and that REALLY helps, during times of congestion we do them twice a day (it seems like we will be doing them twice a day September-April). I don't know how old your daughter is, but even my 2 year old (no CF) has done a sinus rinse. We use the Neilmed bottle and Neilmed Saline packets. My daughter loves doing them bc they make her feel better.

Hope you can get some answers and she can get some relief!

ETA: My daughter was on months of antibiotics for her sinuses and when the ENT got in there and saw how thick the infection was (it was making her sinuses buldge) he said no amount of abx would have gotten rid of the infection. I just read that Stacia is clearing her throat and think the sinus rinses would help with that ALOT. It really helps cut down/eliminate the post-nasal drainage. Here is a clip of my daughter doing a rinse:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=aZgueuvJIsQ
">http://www.youtube.com/watch?v=aZgueuvJIsQ
</a>
Sakem, my daughter started pulmozyme with a mask a couple of weeks ago and I can tell a difference in her nasal mucus. From what I read, the studies are showing that it helps <b>some</b> people. I think it is worth a try.
 
G

grassisgreener

New member
My daughter is 5 and has had alot of sinus trouble. I really kept getting the run around from clinic & ped and at first from the ENT. When she finally had her surgery done at age 4.5 after struggling with sinus trouble for well over a year, the ENT said he had never seen such bad sinuses. It really upset me bc I felt like no one would listen to me. She also had her adenoids out but tonsils were left in bc they never really swelled up much. Anyway, we do daily sinus rinses and that REALLY helps, during times of congestion we do them twice a day (it seems like we will be doing them twice a day September-April). I don't know how old your daughter is, but even my 2 year old (no CF) has done a sinus rinse. We use the Neilmed bottle and Neilmed Saline packets. My daughter loves doing them bc they make her feel better.

Hope you can get some answers and she can get some relief!

ETA: My daughter was on months of antibiotics for her sinuses and when the ENT got in there and saw how thick the infection was (it was making her sinuses buldge) he said no amount of abx would have gotten rid of the infection. I just read that Stacia is clearing her throat and think the sinus rinses would help with that ALOT. It really helps cut down/eliminate the post-nasal drainage. Here is a clip of my daughter doing a rinse:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=aZgueuvJIsQ
">http://www.youtube.com/watch?v=aZgueuvJIsQ
</a>
Sakem, my daughter started pulmozyme with a mask a couple of weeks ago and I can tell a difference in her nasal mucus. From what I read, the studies are showing that it helps <b>some</b> people. I think it is worth a try.
 
G

grassisgreener

New member
My daughter is 5 and has had alot of sinus trouble. I really kept getting the run around from clinic & ped and at first from the ENT. When she finally had her surgery done at age 4.5 after struggling with sinus trouble for well over a year, the ENT said he had never seen such bad sinuses. It really upset me bc I felt like no one would listen to me. She also had her adenoids out but tonsils were left in bc they never really swelled up much. Anyway, we do daily sinus rinses and that REALLY helps, during times of congestion we do them twice a day (it seems like we will be doing them twice a day September-April). I don't know how old your daughter is, but even my 2 year old (no CF) has done a sinus rinse. We use the Neilmed bottle and Neilmed Saline packets. My daughter loves doing them bc they make her feel better.
<br />
<br />Hope you can get some answers and she can get some relief!
<br />
<br />ETA: My daughter was on months of antibiotics for her sinuses and when the ENT got in there and saw how thick the infection was (it was making her sinuses buldge) he said no amount of abx would have gotten rid of the infection. I just read that Stacia is clearing her throat and think the sinus rinses would help with that ALOT. It really helps cut down/eliminate the post-nasal drainage. Here is a clip of my daughter doing a rinse:
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.youtube.com/watch?v=aZgueuvJIsQ
">http://www.youtube.com/watch?v=aZgueuvJIsQ
</a><br />
<br />Sakem, my daughter started pulmozyme with a mask a couple of weeks ago and I can tell a difference in her nasal mucus. From what I read, the studies are showing that it helps <b>some</b> people. I think it is worth a try.
 
M

mneville

Guest
Aidan has huge sinus issues since the age of 14 months. At first, they didn't realize how badly his sinuses were affected. A CT scan showed that his bone had actually disintegrated and his eye sockets were starting to move out of place from the pressure and infection. It was awful. He had a PICC for almost 5 weeks. And a sinus surgery.

He is now 4 and is having his third sinus surgery in two weeks. We also do the rinses and daily Veramyst but we cannot keep the infections at bay. He is also getting a port next week for more IVs. His qulaity of life does improve after surgery for a time..

Megan
 
M

mneville

Guest
Aidan has huge sinus issues since the age of 14 months. At first, they didn't realize how badly his sinuses were affected. A CT scan showed that his bone had actually disintegrated and his eye sockets were starting to move out of place from the pressure and infection. It was awful. He had a PICC for almost 5 weeks. And a sinus surgery.

He is now 4 and is having his third sinus surgery in two weeks. We also do the rinses and daily Veramyst but we cannot keep the infections at bay. He is also getting a port next week for more IVs. His qulaity of life does improve after surgery for a time..

Megan
 
M

mneville

Guest
Aidan has huge sinus issues since the age of 14 months. At first, they didn't realize how badly his sinuses were affected. A CT scan showed that his bone had actually disintegrated and his eye sockets were starting to move out of place from the pressure and infection. It was awful. He had a PICC for almost 5 weeks. And a sinus surgery.

He is now 4 and is having his third sinus surgery in two weeks. We also do the rinses and daily Veramyst but we cannot keep the infections at bay. He is also getting a port next week for more IVs. His qulaity of life does improve after surgery for a time..

Megan
 
M

mneville

Guest
Aidan has huge sinus issues since the age of 14 months. At first, they didn't realize how badly his sinuses were affected. A CT scan showed that his bone had actually disintegrated and his eye sockets were starting to move out of place from the pressure and infection. It was awful. He had a PICC for almost 5 weeks. And a sinus surgery.

He is now 4 and is having his third sinus surgery in two weeks. We also do the rinses and daily Veramyst but we cannot keep the infections at bay. He is also getting a port next week for more IVs. His qulaity of life does improve after surgery for a time..

Megan
 
M

mneville

Guest
Aidan has huge sinus issues since the age of 14 months. At first, they didn't realize how badly his sinuses were affected. A CT scan showed that his bone had actually disintegrated and his eye sockets were starting to move out of place from the pressure and infection. It was awful. He had a PICC for almost 5 weeks. And a sinus surgery.
<br />
<br />He is now 4 and is having his third sinus surgery in two weeks. We also do the rinses and daily Veramyst but we cannot keep the infections at bay. He is also getting a port next week for more IVs. His qulaity of life does improve after surgery for a time..
<br />
<br />Megan
 
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