Questions for those with sinus disease/tobi rinse etc

P

ptmorley

New member
Hi my 12 year old son has cf related sinus disease and was just diagnosed with liver disease. His lung involvement has been minimal.

I am just wondering for those of you with sinsus disease what are your symptoms? Does anyone have a chronic cough as a symptom? My son has had sinus surgery 6x. Three when he was a baby and three within the last 18 months. Most recently they put tobi into his sinus during the surgery and the cough he had went away completely. Slowly it came back and I read on here about people doing tobi rinses. I asked his ent and we are trying that but it is not clearly helping with his cough. We mis 60 ml saline with .5 ml tobi. Some days he is fine and others he wakes up coughing and can't stop. The cough seems to be worse when he is lying down. Also I should mention he cultured staph aureus . I have heard from some doctors the tobi will not kill regular staph and others say it will kill just about anything.

If anyone out there with sinus disease has symptoms of a cough and you have any suggestions for what works for you I'd really appreciate any advice/ideas. He is currently on kephlex for the staph which may be causing the cough. He had been on zyvox which seemed to help but he had liver failure so we need to be careful about which antibiotics he is on.

Also he does the hypertonic saline rinse with the netty pot every day. We've done this since he was about 5.

Thanks in advance for sharing any knowledge you might have.
 
P

ptmorley

New member
Hi my 12 year old son has cf related sinus disease and was just diagnosed with liver disease. His lung involvement has been minimal.

I am just wondering for those of you with sinsus disease what are your symptoms? Does anyone have a chronic cough as a symptom? My son has had sinus surgery 6x. Three when he was a baby and three within the last 18 months. Most recently they put tobi into his sinus during the surgery and the cough he had went away completely. Slowly it came back and I read on here about people doing tobi rinses. I asked his ent and we are trying that but it is not clearly helping with his cough. We mis 60 ml saline with .5 ml tobi. Some days he is fine and others he wakes up coughing and can't stop. The cough seems to be worse when he is lying down. Also I should mention he cultured staph aureus . I have heard from some doctors the tobi will not kill regular staph and others say it will kill just about anything.

If anyone out there with sinus disease has symptoms of a cough and you have any suggestions for what works for you I'd really appreciate any advice/ideas. He is currently on kephlex for the staph which may be causing the cough. He had been on zyvox which seemed to help but he had liver failure so we need to be careful about which antibiotics he is on.

Also he does the hypertonic saline rinse with the netty pot every day. We've done this since he was about 5.

Thanks in advance for sharing any knowledge you might have.
 
P

ptmorley

New member
Hi my 12 year old son has cf related sinus disease and was just diagnosed with liver disease. His lung involvement has been minimal.

I am just wondering for those of you with sinsus disease what are your symptoms? Does anyone have a chronic cough as a symptom? My son has had sinus surgery 6x. Three when he was a baby and three within the last 18 months. Most recently they put tobi into his sinus during the surgery and the cough he had went away completely. Slowly it came back and I read on here about people doing tobi rinses. I asked his ent and we are trying that but it is not clearly helping with his cough. We mis 60 ml saline with .5 ml tobi. Some days he is fine and others he wakes up coughing and can't stop. The cough seems to be worse when he is lying down. Also I should mention he cultured staph aureus . I have heard from some doctors the tobi will not kill regular staph and others say it will kill just about anything.

If anyone out there with sinus disease has symptoms of a cough and you have any suggestions for what works for you I'd really appreciate any advice/ideas. He is currently on kephlex for the staph which may be causing the cough. He had been on zyvox which seemed to help but he had liver failure so we need to be careful about which antibiotics he is on.

Also he does the hypertonic saline rinse with the netty pot every day. We've done this since he was about 5.

Thanks in advance for sharing any knowledge you might have.
 
P

ptmorley

New member
Hi my 12 year old son has cf related sinus disease and was just diagnosed with liver disease. His lung involvement has been minimal.

I am just wondering for those of you with sinsus disease what are your symptoms? Does anyone have a chronic cough as a symptom? My son has had sinus surgery 6x. Three when he was a baby and three within the last 18 months. Most recently they put tobi into his sinus during the surgery and the cough he had went away completely. Slowly it came back and I read on here about people doing tobi rinses. I asked his ent and we are trying that but it is not clearly helping with his cough. We mis 60 ml saline with .5 ml tobi. Some days he is fine and others he wakes up coughing and can't stop. The cough seems to be worse when he is lying down. Also I should mention he cultured staph aureus . I have heard from some doctors the tobi will not kill regular staph and others say it will kill just about anything.

If anyone out there with sinus disease has symptoms of a cough and you have any suggestions for what works for you I'd really appreciate any advice/ideas. He is currently on kephlex for the staph which may be causing the cough. He had been on zyvox which seemed to help but he had liver failure so we need to be careful about which antibiotics he is on.

Also he does the hypertonic saline rinse with the netty pot every day. We've done this since he was about 5.

Thanks in advance for sharing any knowledge you might have.
 
P

ptmorley

New member
Hi my 12 year old son has cf related sinus disease and was just diagnosed with liver disease. His lung involvement has been minimal.
<br />
<br /> I am just wondering for those of you with sinsus disease what are your symptoms? Does anyone have a chronic cough as a symptom? My son has had sinus surgery 6x. Three when he was a baby and three within the last 18 months. Most recently they put tobi into his sinus during the surgery and the cough he had went away completely. Slowly it came back and I read on here about people doing tobi rinses. I asked his ent and we are trying that but it is not clearly helping with his cough. We mis 60 ml saline with .5 ml tobi. Some days he is fine and others he wakes up coughing and can't stop. The cough seems to be worse when he is lying down. Also I should mention he cultured staph aureus . I have heard from some doctors the tobi will not kill regular staph and others say it will kill just about anything.
<br />
<br />If anyone out there with sinus disease has symptoms of a cough and you have any suggestions for what works for you I'd really appreciate any advice/ideas. He is currently on kephlex for the staph which may be causing the cough. He had been on zyvox which seemed to help but he had liver failure so we need to be careful about which antibiotics he is on.
<br />
<br />Also he does the hypertonic saline rinse with the netty pot every day. We've done this since he was about 5.
<br />
<br />Thanks in advance for sharing any knowledge you might have.
 
M

momofsinus

Guest
Hi - my son's situation is a bit different. He is a CF carrier with sinus disease. After 3 surgeries, his ENT had him continue with saline rinses, antibiotic rinse, allergy shots(seasonal allergies and dust,mold,cat,dog) PLUS a monthly ENT visit to have his sinuses cleaned out. This involved a local spray anesthetic and suctioning out the excess mucus. It is a least something you can ask about. Good luck.
 
M

momofsinus

Guest
Hi - my son's situation is a bit different. He is a CF carrier with sinus disease. After 3 surgeries, his ENT had him continue with saline rinses, antibiotic rinse, allergy shots(seasonal allergies and dust,mold,cat,dog) PLUS a monthly ENT visit to have his sinuses cleaned out. This involved a local spray anesthetic and suctioning out the excess mucus. It is a least something you can ask about. Good luck.
 
M

momofsinus

Guest
Hi - my son's situation is a bit different. He is a CF carrier with sinus disease. After 3 surgeries, his ENT had him continue with saline rinses, antibiotic rinse, allergy shots(seasonal allergies and dust,mold,cat,dog) PLUS a monthly ENT visit to have his sinuses cleaned out. This involved a local spray anesthetic and suctioning out the excess mucus. It is a least something you can ask about. Good luck.
 
M

momofsinus

Guest
Hi - my son's situation is a bit different. He is a CF carrier with sinus disease. After 3 surgeries, his ENT had him continue with saline rinses, antibiotic rinse, allergy shots(seasonal allergies and dust,mold,cat,dog) PLUS a monthly ENT visit to have his sinuses cleaned out. This involved a local spray anesthetic and suctioning out the excess mucus. It is a least something you can ask about. Good luck.
 
M

momofsinus

Guest
Hi - my son's situation is a bit different. He is a CF carrier with sinus disease. After 3 surgeries, his ENT had him continue with saline rinses, antibiotic rinse, allergy shots(seasonal allergies and dust,mold,cat,dog) PLUS a monthly ENT visit to have his sinuses cleaned out. This involved a local spray anesthetic and suctioning out the excess mucus. It is a least something you can ask about. Good luck.
 
P

ptmorley

New member
Thank you so much. I really like the idea of regular ENT visits. It seems we have sinus surgery, go fo our follow up and are doing well,, and then a week or two later the problems start and it takes forever to get an appointment. I appreciate the feedback. My best to you and your son.
 
P

ptmorley

New member
Thank you so much. I really like the idea of regular ENT visits. It seems we have sinus surgery, go fo our follow up and are doing well,, and then a week or two later the problems start and it takes forever to get an appointment. I appreciate the feedback. My best to you and your son.
 
P

ptmorley

New member
Thank you so much. I really like the idea of regular ENT visits. It seems we have sinus surgery, go fo our follow up and are doing well,, and then a week or two later the problems start and it takes forever to get an appointment. I appreciate the feedback. My best to you and your son.
 
P

ptmorley

New member
Thank you so much. I really like the idea of regular ENT visits. It seems we have sinus surgery, go fo our follow up and are doing well,, and then a week or two later the problems start and it takes forever to get an appointment. I appreciate the feedback. My best to you and your son.
 
P

ptmorley

New member
Thank you so much. I really like the idea of regular ENT visits. It seems we have sinus surgery, go fo our follow up and are doing well,, and then a week or two later the problems start and it takes forever to get an appointment. I appreciate the feedback. My best to you and your son.
 
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