MRSA/Sinus/IVs/Mucomyst??

M

mneville

Guest
Aidan is 5 and horrific sinuses would be an understatement. He's had 5 extensive FESS procedures with polyp removal each time. He does all the preventative but nothing keeps the polyps and infections away. Now he cultures MRSA for over a year and a half and nothing is killing it.

The problem is that he is always sick with infections so we ALWAYS have to use MRSA drugs. He has a horrible rxn to Vanco so he is now doing his 4th week straight of IV Zyvox (Linezolid). Orals no longer work for his infections, his nasal mucus is like crazy glue and then the polyps block it..... He is the only patient at our center using Mucomyst- the nurse thought maybe that was an irritant b/c she has never seen sinus issues this bad before? I don't think that's it though?

His quality of life is totally suffering, he feels crappy all the time. What the heck do I do?? How long and how often can a 5 year old use heavy duty drugs like Zyvox? But lately he only feels good when he is on Ivs...Should I jsut change my way of thinking and be happy we have these IVs and not worry about future resistance?? Ughh, SO frustrated!

Megan, mom to Aidan 5 CF and Gavin 2 No CF (IVF/PGD)
 
M

mneville

Guest
Aidan is 5 and horrific sinuses would be an understatement. He's had 5 extensive FESS procedures with polyp removal each time. He does all the preventative but nothing keeps the polyps and infections away. Now he cultures MRSA for over a year and a half and nothing is killing it.

The problem is that he is always sick with infections so we ALWAYS have to use MRSA drugs. He has a horrible rxn to Vanco so he is now doing his 4th week straight of IV Zyvox (Linezolid). Orals no longer work for his infections, his nasal mucus is like crazy glue and then the polyps block it..... He is the only patient at our center using Mucomyst- the nurse thought maybe that was an irritant b/c she has never seen sinus issues this bad before? I don't think that's it though?

His quality of life is totally suffering, he feels crappy all the time. What the heck do I do?? How long and how often can a 5 year old use heavy duty drugs like Zyvox? But lately he only feels good when he is on Ivs...Should I jsut change my way of thinking and be happy we have these IVs and not worry about future resistance?? Ughh, SO frustrated!

Megan, mom to Aidan 5 CF and Gavin 2 No CF (IVF/PGD)
 
M

mneville

Guest
Aidan is 5 and horrific sinuses would be an understatement. He's had 5 extensive FESS procedures with polyp removal each time. He does all the preventative but nothing keeps the polyps and infections away. Now he cultures MRSA for over a year and a half and nothing is killing it.

The problem is that he is always sick with infections so we ALWAYS have to use MRSA drugs. He has a horrible rxn to Vanco so he is now doing his 4th week straight of IV Zyvox (Linezolid). Orals no longer work for his infections, his nasal mucus is like crazy glue and then the polyps block it..... He is the only patient at our center using Mucomyst- the nurse thought maybe that was an irritant b/c she has never seen sinus issues this bad before? I don't think that's it though?

His quality of life is totally suffering, he feels crappy all the time. What the heck do I do?? How long and how often can a 5 year old use heavy duty drugs like Zyvox? But lately he only feels good when he is on Ivs...Should I jsut change my way of thinking and be happy we have these IVs and not worry about future resistance?? Ughh, SO frustrated!

Megan, mom to Aidan 5 CF and Gavin 2 No CF (IVF/PGD)
 
M

mneville

Guest
Aidan is 5 and horrific sinuses would be an understatement. He's had 5 extensive FESS procedures with polyp removal each time. He does all the preventative but nothing keeps the polyps and infections away. Now he cultures MRSA for over a year and a half and nothing is killing it.

The problem is that he is always sick with infections so we ALWAYS have to use MRSA drugs. He has a horrible rxn to Vanco so he is now doing his 4th week straight of IV Zyvox (Linezolid). Orals no longer work for his infections, his nasal mucus is like crazy glue and then the polyps block it..... He is the only patient at our center using Mucomyst- the nurse thought maybe that was an irritant b/c she has never seen sinus issues this bad before? I don't think that's it though?

His quality of life is totally suffering, he feels crappy all the time. What the heck do I do?? How long and how often can a 5 year old use heavy duty drugs like Zyvox? But lately he only feels good when he is on Ivs...Should I jsut change my way of thinking and be happy we have these IVs and not worry about future resistance?? Ughh, SO frustrated!

Megan, mom to Aidan 5 CF and Gavin 2 No CF (IVF/PGD)
 
M

mneville

Guest
Aidan is 5 and horrific sinuses would be an understatement. He's had 5 extensive FESS procedures with polyp removal each time. He does all the preventative but nothing keeps the polyps and infections away. Now he cultures MRSA for over a year and a half and nothing is killing it.
<br />
<br />The problem is that he is always sick with infections so we ALWAYS have to use MRSA drugs. He has a horrible rxn to Vanco so he is now doing his 4th week straight of IV Zyvox (Linezolid). Orals no longer work for his infections, his nasal mucus is like crazy glue and then the polyps block it..... He is the only patient at our center using Mucomyst- the nurse thought maybe that was an irritant b/c she has never seen sinus issues this bad before? I don't think that's it though?
<br />
<br />His quality of life is totally suffering, he feels crappy all the time. What the heck do I do?? How long and how often can a 5 year old use heavy duty drugs like Zyvox? But lately he only feels good when he is on Ivs...Should I jsut change my way of thinking and be happy we have these IVs and not worry about future resistance?? Ughh, SO frustrated!
<br />
<br />Megan, mom to Aidan 5 CF and Gavin 2 No CF (IVF/PGD)
 
R

Rebjane

Super Moderator
I am sorry Aiden is having such a hard time. I don't know what the answer would be; Have you gone for a second opinion? Maybe talked with an infectious disease doctor? Just throwing ideas out there. MRSA gives you few options for treatment..Our docs are cautious about keeping Maggie on Zyvox for too long...She has only taken oral Zyvox..the longest time period was 28 days...Does Aiden have lab work done while on Zyvox? Maggie is not on Mucomyst...Does Aiden do any inhaled steroids? Maggie does not have sinus issues too bad yet; but I do her inhaled meds via face mask to get in her sinuses; including pulmicort, HTS, pulmozyme, and feel it helps get the mucous out..She does not have polyps however that I am aware of.

Maggie also is always on oral bactrim prophylactically...She had a very bad time respiratory wise when she was 2 and she has been on it since...It does very little for exacerbation but is keeping her well for maintance. At that time she had a bronch and the pulmonologist and the director of the clinic was very concerned about her. Somehow Maggie got better after IV VAnco, followed by oral Zyvox, then we used the oral bactrim which she again is always on; they added the pulmicort for inflammation at the same time so I think the combo of it all helped her...
 
R

Rebjane

Super Moderator
I am sorry Aiden is having such a hard time. I don't know what the answer would be; Have you gone for a second opinion? Maybe talked with an infectious disease doctor? Just throwing ideas out there. MRSA gives you few options for treatment..Our docs are cautious about keeping Maggie on Zyvox for too long...She has only taken oral Zyvox..the longest time period was 28 days...Does Aiden have lab work done while on Zyvox? Maggie is not on Mucomyst...Does Aiden do any inhaled steroids? Maggie does not have sinus issues too bad yet; but I do her inhaled meds via face mask to get in her sinuses; including pulmicort, HTS, pulmozyme, and feel it helps get the mucous out..She does not have polyps however that I am aware of.

Maggie also is always on oral bactrim prophylactically...She had a very bad time respiratory wise when she was 2 and she has been on it since...It does very little for exacerbation but is keeping her well for maintance. At that time she had a bronch and the pulmonologist and the director of the clinic was very concerned about her. Somehow Maggie got better after IV VAnco, followed by oral Zyvox, then we used the oral bactrim which she again is always on; they added the pulmicort for inflammation at the same time so I think the combo of it all helped her...
 
R

Rebjane

Super Moderator
I am sorry Aiden is having such a hard time. I don't know what the answer would be; Have you gone for a second opinion? Maybe talked with an infectious disease doctor? Just throwing ideas out there. MRSA gives you few options for treatment..Our docs are cautious about keeping Maggie on Zyvox for too long...She has only taken oral Zyvox..the longest time period was 28 days...Does Aiden have lab work done while on Zyvox? Maggie is not on Mucomyst...Does Aiden do any inhaled steroids? Maggie does not have sinus issues too bad yet; but I do her inhaled meds via face mask to get in her sinuses; including pulmicort, HTS, pulmozyme, and feel it helps get the mucous out..She does not have polyps however that I am aware of.

Maggie also is always on oral bactrim prophylactically...She had a very bad time respiratory wise when she was 2 and she has been on it since...It does very little for exacerbation but is keeping her well for maintance. At that time she had a bronch and the pulmonologist and the director of the clinic was very concerned about her. Somehow Maggie got better after IV VAnco, followed by oral Zyvox, then we used the oral bactrim which she again is always on; they added the pulmicort for inflammation at the same time so I think the combo of it all helped her...
 
R

Rebjane

Super Moderator
I am sorry Aiden is having such a hard time. I don't know what the answer would be; Have you gone for a second opinion? Maybe talked with an infectious disease doctor? Just throwing ideas out there. MRSA gives you few options for treatment..Our docs are cautious about keeping Maggie on Zyvox for too long...She has only taken oral Zyvox..the longest time period was 28 days...Does Aiden have lab work done while on Zyvox? Maggie is not on Mucomyst...Does Aiden do any inhaled steroids? Maggie does not have sinus issues too bad yet; but I do her inhaled meds via face mask to get in her sinuses; including pulmicort, HTS, pulmozyme, and feel it helps get the mucous out..She does not have polyps however that I am aware of.

Maggie also is always on oral bactrim prophylactically...She had a very bad time respiratory wise when she was 2 and she has been on it since...It does very little for exacerbation but is keeping her well for maintance. At that time she had a bronch and the pulmonologist and the director of the clinic was very concerned about her. Somehow Maggie got better after IV VAnco, followed by oral Zyvox, then we used the oral bactrim which she again is always on; they added the pulmicort for inflammation at the same time so I think the combo of it all helped her...
 
R

Rebjane

Super Moderator
I am sorry Aiden is having such a hard time. I don't know what the answer would be; Have you gone for a second opinion? Maybe talked with an infectious disease doctor? Just throwing ideas out there. MRSA gives you few options for treatment..Our docs are cautious about keeping Maggie on Zyvox for too long...She has only taken oral Zyvox..the longest time period was 28 days...Does Aiden have lab work done while on Zyvox? Maggie is not on Mucomyst...Does Aiden do any inhaled steroids? Maggie does not have sinus issues too bad yet; but I do her inhaled meds via face mask to get in her sinuses; including pulmicort, HTS, pulmozyme, and feel it helps get the mucous out..She does not have polyps however that I am aware of.
<br />
<br />Maggie also is always on oral bactrim prophylactically...She had a very bad time respiratory wise when she was 2 and she has been on it since...It does very little for exacerbation but is keeping her well for maintance. At that time she had a bronch and the pulmonologist and the director of the clinic was very concerned about her. Somehow Maggie got better after IV VAnco, followed by oral Zyvox, then we used the oral bactrim which she again is always on; they added the pulmicort for inflammation at the same time so I think the combo of it all helped her...
 
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