Sinus Problems

C

cdstewart1

Guest
I have a 7 year old daughter with CF. In the last 1 1/2 year we have been dealing with her sinuses. She has had one surgery in July of 09 and now we are right back where we started. Pulmonary Doc wants to alternate meds. She has been on meds for the last 4 months. 21 days on 10 days off and on to the next round. I talked to ENT he said we could do surgery 3 times a year. I is a great doc and I also got a second opinion. I was informed both are reasonable treatments it is a matter of what we want to do. I know the risk for both treatments and i am between a rock and a hard place. Not sure what to do. Has anyone else gone thru or dealing with this issue. Some input would be great.

Christina
Kendall 7 wcf<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
C

cdstewart1

Guest
I have a 7 year old daughter with CF. In the last 1 1/2 year we have been dealing with her sinuses. She has had one surgery in July of 09 and now we are right back where we started. Pulmonary Doc wants to alternate meds. She has been on meds for the last 4 months. 21 days on 10 days off and on to the next round. I talked to ENT he said we could do surgery 3 times a year. I is a great doc and I also got a second opinion. I was informed both are reasonable treatments it is a matter of what we want to do. I know the risk for both treatments and i am between a rock and a hard place. Not sure what to do. Has anyone else gone thru or dealing with this issue. Some input would be great.

Christina
Kendall 7 wcf<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
C

cdstewart1

Guest
I have a 7 year old daughter with CF. In the last 1 1/2 year we have been dealing with her sinuses. She has had one surgery in July of 09 and now we are right back where we started. Pulmonary Doc wants to alternate meds. She has been on meds for the last 4 months. 21 days on 10 days off and on to the next round. I talked to ENT he said we could do surgery 3 times a year. I is a great doc and I also got a second opinion. I was informed both are reasonable treatments it is a matter of what we want to do. I know the risk for both treatments and i am between a rock and a hard place. Not sure what to do. Has anyone else gone thru or dealing with this issue. Some input would be great.

Christina
Kendall 7 wcf<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
C

cdstewart1

Guest
I have a 7 year old daughter with CF. In the last 1 1/2 year we have been dealing with her sinuses. She has had one surgery in July of 09 and now we are right back where we started. Pulmonary Doc wants to alternate meds. She has been on meds for the last 4 months. 21 days on 10 days off and on to the next round. I talked to ENT he said we could do surgery 3 times a year. I is a great doc and I also got a second opinion. I was informed both are reasonable treatments it is a matter of what we want to do. I know the risk for both treatments and i am between a rock and a hard place. Not sure what to do. Has anyone else gone thru or dealing with this issue. Some input would be great.

Christina
Kendall 7 wcf<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
C

cdstewart1

Guest
I have a 7 year old daughter with CF. In the last 1 1/2 year we have been dealing with her sinuses. She has had one surgery in July of 09 and now we are right back where we started. Pulmonary Doc wants to alternate meds. She has been on meds for the last 4 months. 21 days on 10 days off and on to the next round. I talked to ENT he said we could do surgery 3 times a year. I is a great doc and I also got a second opinion. I was informed both are reasonable treatments it is a matter of what we want to do. I know the risk for both treatments and i am between a rock and a hard place. Not sure what to do. Has anyone else gone thru or dealing with this issue. Some input would be great.
<br />
<br />Christina
<br />Kendall 7 wcf<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
M

mneville

Guest
Oh yes! We have sinus issues too. Aidan is 5 and is about to have his 5th sinus surgery on March 5th. At age 1 a CT showed horrific sinus disease when he could no longer eat, sleep or hold his head up. Horrible. Had a PICC for 4 weeks and then surgery. Since then he has needed one every year despite daily adult sinus rinses and tons of oral antibitoics.His sinuses are just a mess despite all we do. So we feel your pain. We just got word that he will need a PICC before his 3/5 procedure. The fun never ends! How do you treat your daughter? What does she culture? AIdan has had MRSA for a year now.

Megan
 
M

mneville

Guest
Oh yes! We have sinus issues too. Aidan is 5 and is about to have his 5th sinus surgery on March 5th. At age 1 a CT showed horrific sinus disease when he could no longer eat, sleep or hold his head up. Horrible. Had a PICC for 4 weeks and then surgery. Since then he has needed one every year despite daily adult sinus rinses and tons of oral antibitoics.His sinuses are just a mess despite all we do. So we feel your pain. We just got word that he will need a PICC before his 3/5 procedure. The fun never ends! How do you treat your daughter? What does she culture? AIdan has had MRSA for a year now.

Megan
 
M

mneville

Guest
Oh yes! We have sinus issues too. Aidan is 5 and is about to have his 5th sinus surgery on March 5th. At age 1 a CT showed horrific sinus disease when he could no longer eat, sleep or hold his head up. Horrible. Had a PICC for 4 weeks and then surgery. Since then he has needed one every year despite daily adult sinus rinses and tons of oral antibitoics.His sinuses are just a mess despite all we do. So we feel your pain. We just got word that he will need a PICC before his 3/5 procedure. The fun never ends! How do you treat your daughter? What does she culture? AIdan has had MRSA for a year now.

Megan
 
M

mneville

Guest
Oh yes! We have sinus issues too. Aidan is 5 and is about to have his 5th sinus surgery on March 5th. At age 1 a CT showed horrific sinus disease when he could no longer eat, sleep or hold his head up. Horrible. Had a PICC for 4 weeks and then surgery. Since then he has needed one every year despite daily adult sinus rinses and tons of oral antibitoics.His sinuses are just a mess despite all we do. So we feel your pain. We just got word that he will need a PICC before his 3/5 procedure. The fun never ends! How do you treat your daughter? What does she culture? AIdan has had MRSA for a year now.

Megan
 
M

mneville

Guest
Oh yes! We have sinus issues too. Aidan is 5 and is about to have his 5th sinus surgery on March 5th. At age 1 a CT showed horrific sinus disease when he could no longer eat, sleep or hold his head up. Horrible. Had a PICC for 4 weeks and then surgery. Since then he has needed one every year despite daily adult sinus rinses and tons of oral antibitoics.His sinuses are just a mess despite all we do. So we feel your pain. We just got word that he will need a PICC before his 3/5 procedure. The fun never ends! How do you treat your daughter? What does she culture? AIdan has had MRSA for a year now.
<br />
<br />Megan
 
C

cdstewart1

Guest
Kendall overall has done very will other than the sinus issue. She has been hospitalized once in 5 years. Her lung functions are great. Her FEV1 are 116%. She will cough so bad that she will wake up at 2 in the morning and put herself on the vest because she can't stop. I just don't feel that antibiotics are the only answer. She cultured pseudomonas when she was one and then again a year later. Since then we have done TOBI every other month and she has never cultured it from her lungs again. She has MRSA and cultured it when she was 2. She is on, Pulmozyme, TOBI every other month, and Hyper sal. She also does the sinus rinse twice a day.
 
C

cdstewart1

Guest
Kendall overall has done very will other than the sinus issue. She has been hospitalized once in 5 years. Her lung functions are great. Her FEV1 are 116%. She will cough so bad that she will wake up at 2 in the morning and put herself on the vest because she can't stop. I just don't feel that antibiotics are the only answer. She cultured pseudomonas when she was one and then again a year later. Since then we have done TOBI every other month and she has never cultured it from her lungs again. She has MRSA and cultured it when she was 2. She is on, Pulmozyme, TOBI every other month, and Hyper sal. She also does the sinus rinse twice a day.
 
C

cdstewart1

Guest
Kendall overall has done very will other than the sinus issue. She has been hospitalized once in 5 years. Her lung functions are great. Her FEV1 are 116%. She will cough so bad that she will wake up at 2 in the morning and put herself on the vest because she can't stop. I just don't feel that antibiotics are the only answer. She cultured pseudomonas when she was one and then again a year later. Since then we have done TOBI every other month and she has never cultured it from her lungs again. She has MRSA and cultured it when she was 2. She is on, Pulmozyme, TOBI every other month, and Hyper sal. She also does the sinus rinse twice a day.
 
C

cdstewart1

Guest
Kendall overall has done very will other than the sinus issue. She has been hospitalized once in 5 years. Her lung functions are great. Her FEV1 are 116%. She will cough so bad that she will wake up at 2 in the morning and put herself on the vest because she can't stop. I just don't feel that antibiotics are the only answer. She cultured pseudomonas when she was one and then again a year later. Since then we have done TOBI every other month and she has never cultured it from her lungs again. She has MRSA and cultured it when she was 2. She is on, Pulmozyme, TOBI every other month, and Hyper sal. She also does the sinus rinse twice a day.
 
C

cdstewart1

Guest
Kendall overall has done very will other than the sinus issue. She has been hospitalized once in 5 years. Her lung functions are great. Her FEV1 are 116%. She will cough so bad that she will wake up at 2 in the morning and put herself on the vest because she can't stop. I just don't feel that antibiotics are the only answer. She cultured pseudomonas when she was one and then again a year later. Since then we have done TOBI every other month and she has never cultured it from her lungs again. She has MRSA and cultured it when she was 2. She is on, Pulmozyme, TOBI every other month, and Hyper sal. She also does the sinus rinse twice a day.
 
L

LisaGreene

New member
Yes- we've had lots of sinus issues with both kids. Jake has had about 5 surgeries (I've lost count!). We've been told that keeping the sinuses as healthy as possible goes a long ways towards keeping the lungs healthy, too, since they are all part of the same "system."

So we do nasal rinses daily- or 2 x daily if sick plus veramist and some allergy meds. It is slowing down but Jake's polyps are back and we'll probably be looking at another surgery sometime soon. But his pft's are high and he is a pretty healthy guy (considering...).

jake does Tobi on/ Tobi off so that might help- he does has psuedomonas in his sinuses.

It's a hard decision- you just hate having to add to the risk with surgery but on the other hand, there is risk not doing it, too. (sigh) Hang in there...
 
L

LisaGreene

New member
Yes- we've had lots of sinus issues with both kids. Jake has had about 5 surgeries (I've lost count!). We've been told that keeping the sinuses as healthy as possible goes a long ways towards keeping the lungs healthy, too, since they are all part of the same "system."

So we do nasal rinses daily- or 2 x daily if sick plus veramist and some allergy meds. It is slowing down but Jake's polyps are back and we'll probably be looking at another surgery sometime soon. But his pft's are high and he is a pretty healthy guy (considering...).

jake does Tobi on/ Tobi off so that might help- he does has psuedomonas in his sinuses.

It's a hard decision- you just hate having to add to the risk with surgery but on the other hand, there is risk not doing it, too. (sigh) Hang in there...
 
L

LisaGreene

New member
Yes- we've had lots of sinus issues with both kids. Jake has had about 5 surgeries (I've lost count!). We've been told that keeping the sinuses as healthy as possible goes a long ways towards keeping the lungs healthy, too, since they are all part of the same "system."

So we do nasal rinses daily- or 2 x daily if sick plus veramist and some allergy meds. It is slowing down but Jake's polyps are back and we'll probably be looking at another surgery sometime soon. But his pft's are high and he is a pretty healthy guy (considering...).

jake does Tobi on/ Tobi off so that might help- he does has psuedomonas in his sinuses.

It's a hard decision- you just hate having to add to the risk with surgery but on the other hand, there is risk not doing it, too. (sigh) Hang in there...
 
L

LisaGreene

New member
Yes- we've had lots of sinus issues with both kids. Jake has had about 5 surgeries (I've lost count!). We've been told that keeping the sinuses as healthy as possible goes a long ways towards keeping the lungs healthy, too, since they are all part of the same "system."

So we do nasal rinses daily- or 2 x daily if sick plus veramist and some allergy meds. It is slowing down but Jake's polyps are back and we'll probably be looking at another surgery sometime soon. But his pft's are high and he is a pretty healthy guy (considering...).

jake does Tobi on/ Tobi off so that might help- he does has psuedomonas in his sinuses.

It's a hard decision- you just hate having to add to the risk with surgery but on the other hand, there is risk not doing it, too. (sigh) Hang in there...
 
L

LisaGreene

New member
Yes- we've had lots of sinus issues with both kids. Jake has had about 5 surgeries (I've lost count!). We've been told that keeping the sinuses as healthy as possible goes a long ways towards keeping the lungs healthy, too, since they are all part of the same "system."
<br />
<br />So we do nasal rinses daily- or 2 x daily if sick plus veramist and some allergy meds. It is slowing down but Jake's polyps are back and we'll probably be looking at another surgery sometime soon. But his pft's are high and he is a pretty healthy guy (considering...).
<br />
<br />jake does Tobi on/ Tobi off so that might help- he does has psuedomonas in his sinuses.
<br />
<br />It's a hard decision- you just hate having to add to the risk with surgery but on the other hand, there is risk not doing it, too. (sigh) Hang in there...
<br />
<br />
 
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