who else is struggling with mrsa

T

taraann

New member
i am mother of a 9yr old boy with CF. Diagnosed at 4months old. He has mostly lung and sinus involvement. For the past 7 years he has cultured Mrsa and not much else. he has to be on oral antibiotics most of the time, otherwise he ends up back in the hospital for iv antibiotics. Bactim DS and Zyvox have been the only oral ones that work. the infections seem to be getting closer together, but his lung function is remaining good. He blows 130% when well, sometimes even when sick. But it seems like he has to be on antibiotics all the time. I am afraid at some point they will stop working. He has also been on medrol, a corticosteroid, for 7 or more years non stop to manage ABPA. that is not good for him either.

Well, i just wanted to know if anyone else is going through this. Has any of the same concerns or is experiencing MRSA colinization. I don't like it being so strong in his body.
 
T

taraann

New member
i am mother of a 9yr old boy with CF. Diagnosed at 4months old. He has mostly lung and sinus involvement. For the past 7 years he has cultured Mrsa and not much else. he has to be on oral antibiotics most of the time, otherwise he ends up back in the hospital for iv antibiotics. Bactim DS and Zyvox have been the only oral ones that work. the infections seem to be getting closer together, but his lung function is remaining good. He blows 130% when well, sometimes even when sick. But it seems like he has to be on antibiotics all the time. I am afraid at some point they will stop working. He has also been on medrol, a corticosteroid, for 7 or more years non stop to manage ABPA. that is not good for him either.

Well, i just wanted to know if anyone else is going through this. Has any of the same concerns or is experiencing MRSA colinization. I don't like it being so strong in his body.
 
T

taraann

New member
i am mother of a 9yr old boy with CF. Diagnosed at 4months old. He has mostly lung and sinus involvement. For the past 7 years he has cultured Mrsa and not much else. he has to be on oral antibiotics most of the time, otherwise he ends up back in the hospital for iv antibiotics. Bactim DS and Zyvox have been the only oral ones that work. the infections seem to be getting closer together, but his lung function is remaining good. He blows 130% when well, sometimes even when sick. But it seems like he has to be on antibiotics all the time. I am afraid at some point they will stop working. He has also been on medrol, a corticosteroid, for 7 or more years non stop to manage ABPA. that is not good for him either.

Well, i just wanted to know if anyone else is going through this. Has any of the same concerns or is experiencing MRSA colinization. I don't like it being so strong in his body.
 
T

taraann

New member
i am mother of a 9yr old boy with CF. Diagnosed at 4months old. He has mostly lung and sinus involvement. For the past 7 years he has cultured Mrsa and not much else. he has to be on oral antibiotics most of the time, otherwise he ends up back in the hospital for iv antibiotics. Bactim DS and Zyvox have been the only oral ones that work. the infections seem to be getting closer together, but his lung function is remaining good. He blows 130% when well, sometimes even when sick. But it seems like he has to be on antibiotics all the time. I am afraid at some point they will stop working. He has also been on medrol, a corticosteroid, for 7 or more years non stop to manage ABPA. that is not good for him either.

Well, i just wanted to know if anyone else is going through this. Has any of the same concerns or is experiencing MRSA colinization. I don't like it being so strong in his body.
 
T

taraann

New member
i am mother of a 9yr old boy with CF. Diagnosed at 4months old. He has mostly lung and sinus involvement. For the past 7 years he has cultured Mrsa and not much else. he has to be on oral antibiotics most of the time, otherwise he ends up back in the hospital for iv antibiotics. Bactim DS and Zyvox have been the only oral ones that work. the infections seem to be getting closer together, but his lung function is remaining good. He blows 130% when well, sometimes even when sick. But it seems like he has to be on antibiotics all the time. I am afraid at some point they will stop working. He has also been on medrol, a corticosteroid, for 7 or more years non stop to manage ABPA. that is not good for him either.
<br />
<br />Well, i just wanted to know if anyone else is going through this. Has any of the same concerns or is experiencing MRSA colinization. I don't like it being so strong in his body.
 
T

Terry

Guest
Hi,

My Step-Daughter (9 years old) has been positive with MRSA since 2005. She is not being treated for it. MRSA really confuses me. I feel it is terrible that she has it and we are not trying to get rid of it. When she goes to the hospital they treat her as if she has something terrible when they see she is positive for MRSA (they don't allow her out of her room, wear masks, gloves and gowns while they are in her room, and take them all off immediately upon exiting her room). But yet they don't try to get rid of it.

I hear that some people like your son is treated aggressively for it, and then others like us get no treatment. Her FEV1 has dropped from 97.7 to 93.7 in the last three months. She isn't culturing anything but the MRSA. Her Dr.s say not to worry about it, that it is excellent that she is in the nineties. They want her to take part in a study.

I know I wasn't much help. MRSA gives ME a headache.


Terry
 
T

Terry

Guest
Hi,

My Step-Daughter (9 years old) has been positive with MRSA since 2005. She is not being treated for it. MRSA really confuses me. I feel it is terrible that she has it and we are not trying to get rid of it. When she goes to the hospital they treat her as if she has something terrible when they see she is positive for MRSA (they don't allow her out of her room, wear masks, gloves and gowns while they are in her room, and take them all off immediately upon exiting her room). But yet they don't try to get rid of it.

I hear that some people like your son is treated aggressively for it, and then others like us get no treatment. Her FEV1 has dropped from 97.7 to 93.7 in the last three months. She isn't culturing anything but the MRSA. Her Dr.s say not to worry about it, that it is excellent that she is in the nineties. They want her to take part in a study.

I know I wasn't much help. MRSA gives ME a headache.


Terry
 
T

Terry

Guest
Hi,

My Step-Daughter (9 years old) has been positive with MRSA since 2005. She is not being treated for it. MRSA really confuses me. I feel it is terrible that she has it and we are not trying to get rid of it. When she goes to the hospital they treat her as if she has something terrible when they see she is positive for MRSA (they don't allow her out of her room, wear masks, gloves and gowns while they are in her room, and take them all off immediately upon exiting her room). But yet they don't try to get rid of it.

I hear that some people like your son is treated aggressively for it, and then others like us get no treatment. Her FEV1 has dropped from 97.7 to 93.7 in the last three months. She isn't culturing anything but the MRSA. Her Dr.s say not to worry about it, that it is excellent that she is in the nineties. They want her to take part in a study.

I know I wasn't much help. MRSA gives ME a headache.


Terry
 
T

Terry

Guest
Hi,

My Step-Daughter (9 years old) has been positive with MRSA since 2005. She is not being treated for it. MRSA really confuses me. I feel it is terrible that she has it and we are not trying to get rid of it. When she goes to the hospital they treat her as if she has something terrible when they see she is positive for MRSA (they don't allow her out of her room, wear masks, gloves and gowns while they are in her room, and take them all off immediately upon exiting her room). But yet they don't try to get rid of it.

I hear that some people like your son is treated aggressively for it, and then others like us get no treatment. Her FEV1 has dropped from 97.7 to 93.7 in the last three months. She isn't culturing anything but the MRSA. Her Dr.s say not to worry about it, that it is excellent that she is in the nineties. They want her to take part in a study.

I know I wasn't much help. MRSA gives ME a headache.


Terry
 
T

Terry

Guest
Hi,
<br />
<br />My Step-Daughter (9 years old) has been positive with MRSA since 2005. She is not being treated for it. MRSA really confuses me. I feel it is terrible that she has it and we are not trying to get rid of it. When she goes to the hospital they treat her as if she has something terrible when they see she is positive for MRSA (they don't allow her out of her room, wear masks, gloves and gowns while they are in her room, and take them all off immediately upon exiting her room). But yet they don't try to get rid of it.
<br />
<br />I hear that some people like your son is treated aggressively for it, and then others like us get no treatment. Her FEV1 has dropped from 97.7 to 93.7 in the last three months. She isn't culturing anything but the MRSA. Her Dr.s say not to worry about it, that it is excellent that she is in the nineties. They want her to take part in a study.
<br />
<br />I know I wasn't much help. MRSA gives ME a headache.
<br />
<br />
<br />Terry
 
T

tammykrumrey

Guest
Yes, I get very frustrated with the MRSA stuff, too. Both of my daughters culture MRSA and have for at least 6 years. Neither were treated when they started culturing it. I was told it was just a 'normal' bug they get, not too worry too much.

And I guess both have done ok with it. Although Kayla (who has cultured only MRSA and Staph) seems to have more issues than Hannah (who has cultured MRSA, Staph and PA)! Kayla has lung damage, Hannah does not.

Kayla has been on IV Vancomycin (spelling?) before, and that helped out when she was having a MRSA flare up. Then about 6 months later she was on oral Zyvox, and that worked great for her. She hasn't need much more than bactrim since then (about 18 months).

It does seem that the MRSA eventually comes back<img src="i/expressions/face-icon-small-sad.gif" border="0">

And Terry, you bring up a good point, one which never really crossed my mind. WHY do they treat our kids like that when they are hospitalized-gloves, gowns, isolation, etc.-but then tell us not to worry too much about it?!

The girls have clinic next week, I think I will ask about that!
 
T

tammykrumrey

Guest
Yes, I get very frustrated with the MRSA stuff, too. Both of my daughters culture MRSA and have for at least 6 years. Neither were treated when they started culturing it. I was told it was just a 'normal' bug they get, not too worry too much.

And I guess both have done ok with it. Although Kayla (who has cultured only MRSA and Staph) seems to have more issues than Hannah (who has cultured MRSA, Staph and PA)! Kayla has lung damage, Hannah does not.

Kayla has been on IV Vancomycin (spelling?) before, and that helped out when she was having a MRSA flare up. Then about 6 months later she was on oral Zyvox, and that worked great for her. She hasn't need much more than bactrim since then (about 18 months).

It does seem that the MRSA eventually comes back<img src="i/expressions/face-icon-small-sad.gif" border="0">

And Terry, you bring up a good point, one which never really crossed my mind. WHY do they treat our kids like that when they are hospitalized-gloves, gowns, isolation, etc.-but then tell us not to worry too much about it?!

The girls have clinic next week, I think I will ask about that!
 
T

tammykrumrey

Guest
Yes, I get very frustrated with the MRSA stuff, too. Both of my daughters culture MRSA and have for at least 6 years. Neither were treated when they started culturing it. I was told it was just a 'normal' bug they get, not too worry too much.

And I guess both have done ok with it. Although Kayla (who has cultured only MRSA and Staph) seems to have more issues than Hannah (who has cultured MRSA, Staph and PA)! Kayla has lung damage, Hannah does not.

Kayla has been on IV Vancomycin (spelling?) before, and that helped out when she was having a MRSA flare up. Then about 6 months later she was on oral Zyvox, and that worked great for her. She hasn't need much more than bactrim since then (about 18 months).

It does seem that the MRSA eventually comes back<img src="i/expressions/face-icon-small-sad.gif" border="0">

And Terry, you bring up a good point, one which never really crossed my mind. WHY do they treat our kids like that when they are hospitalized-gloves, gowns, isolation, etc.-but then tell us not to worry too much about it?!

The girls have clinic next week, I think I will ask about that!
 
T

tammykrumrey

Guest
Yes, I get very frustrated with the MRSA stuff, too. Both of my daughters culture MRSA and have for at least 6 years. Neither were treated when they started culturing it. I was told it was just a 'normal' bug they get, not too worry too much.

And I guess both have done ok with it. Although Kayla (who has cultured only MRSA and Staph) seems to have more issues than Hannah (who has cultured MRSA, Staph and PA)! Kayla has lung damage, Hannah does not.

Kayla has been on IV Vancomycin (spelling?) before, and that helped out when she was having a MRSA flare up. Then about 6 months later she was on oral Zyvox, and that worked great for her. She hasn't need much more than bactrim since then (about 18 months).

It does seem that the MRSA eventually comes back<img src="i/expressions/face-icon-small-sad.gif" border="0">

And Terry, you bring up a good point, one which never really crossed my mind. WHY do they treat our kids like that when they are hospitalized-gloves, gowns, isolation, etc.-but then tell us not to worry too much about it?!

The girls have clinic next week, I think I will ask about that!
 
T

tammykrumrey

Guest
Yes, I get very frustrated with the MRSA stuff, too. Both of my daughters culture MRSA and have for at least 6 years. Neither were treated when they started culturing it. I was told it was just a 'normal' bug they get, not too worry too much.
<br />
<br />And I guess both have done ok with it. Although Kayla (who has cultured only MRSA and Staph) seems to have more issues than Hannah (who has cultured MRSA, Staph and PA)! Kayla has lung damage, Hannah does not.
<br />
<br />Kayla has been on IV Vancomycin (spelling?) before, and that helped out when she was having a MRSA flare up. Then about 6 months later she was on oral Zyvox, and that worked great for her. She hasn't need much more than bactrim since then (about 18 months).
<br />
<br />It does seem that the MRSA eventually comes back<img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />And Terry, you bring up a good point, one which never really crossed my mind. WHY do they treat our kids like that when they are hospitalized-gloves, gowns, isolation, etc.-but then tell us not to worry too much about it?!
<br />
<br />The girls have clinic next week, I think I will ask about that!
 
T

Terry

Guest
It's kind of hard to not worry about something when everyone looks like something a Sci-Fi movie.

We were told that it was because they didn't want to carry MRSA to the other (CF) patients. I was concerned the first time we were treated that way. I didn't know if I had to worry about everyone in the house getting it.

If you find out anything, me know, please.

Terry
 
T

Terry

Guest
It's kind of hard to not worry about something when everyone looks like something a Sci-Fi movie.

We were told that it was because they didn't want to carry MRSA to the other (CF) patients. I was concerned the first time we were treated that way. I didn't know if I had to worry about everyone in the house getting it.

If you find out anything, me know, please.

Terry
 
T

Terry

Guest
It's kind of hard to not worry about something when everyone looks like something a Sci-Fi movie.

We were told that it was because they didn't want to carry MRSA to the other (CF) patients. I was concerned the first time we were treated that way. I didn't know if I had to worry about everyone in the house getting it.

If you find out anything, me know, please.

Terry
 
T

Terry

Guest
It's kind of hard to not worry about something when everyone looks like something a Sci-Fi movie.

We were told that it was because they didn't want to carry MRSA to the other (CF) patients. I was concerned the first time we were treated that way. I didn't know if I had to worry about everyone in the house getting it.

If you find out anything, me know, please.

Terry
 
T

Terry

Guest
It's kind of hard to not worry about something when everyone looks like something a Sci-Fi movie.
<br />
<br />We were told that it was because they didn't want to carry MRSA to the other (CF) patients. I was concerned the first time we were treated that way. I didn't know if I had to worry about everyone in the house getting it.
<br />
<br />If you find out anything, me know, please.
<br />
<br />Terry
 
You must log in or register to reply here.
Top