MRSA anyone ?

G

ginandbrea

New member
Can anyone please fill me in about MRSA and other things?

My daughter is 9 y/o, Dx in Oct w/ CF, immediately in CHSD for 2 weeks w/ FEV1 52%, DF508/3849+10kbc>T, PS and + for MRSA. Has been great since Nov, but now sick again w/ coughing green mucus and so much, tested + for MRSA again. Her Drs. do not seem worried, BUT I AM! I know the Drs. are trying to get to know her, it's only been a few months, but I need some answers. I ask them about her lung capacity since she went so long being Dx w/ Asthma when that wasn't it, they cannot or will not tell me. They do not act concerned about the MRSA. They did put her on oral Bactrim so we'll see.

Someone please enlighten me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Gina, Mommie of Breanna
 
G

ginandbrea

New member
Can anyone please fill me in about MRSA and other things?

My daughter is 9 y/o, Dx in Oct w/ CF, immediately in CHSD for 2 weeks w/ FEV1 52%, DF508/3849+10kbc>T, PS and + for MRSA. Has been great since Nov, but now sick again w/ coughing green mucus and so much, tested + for MRSA again. Her Drs. do not seem worried, BUT I AM! I know the Drs. are trying to get to know her, it's only been a few months, but I need some answers. I ask them about her lung capacity since she went so long being Dx w/ Asthma when that wasn't it, they cannot or will not tell me. They do not act concerned about the MRSA. They did put her on oral Bactrim so we'll see.

Someone please enlighten me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Gina, Mommie of Breanna
 
G

ginandbrea

New member
Can anyone please fill me in about MRSA and other things?

My daughter is 9 y/o, Dx in Oct w/ CF, immediately in CHSD for 2 weeks w/ FEV1 52%, DF508/3849+10kbc>T, PS and + for MRSA. Has been great since Nov, but now sick again w/ coughing green mucus and so much, tested + for MRSA again. Her Drs. do not seem worried, BUT I AM! I know the Drs. are trying to get to know her, it's only been a few months, but I need some answers. I ask them about her lung capacity since she went so long being Dx w/ Asthma when that wasn't it, they cannot or will not tell me. They do not act concerned about the MRSA. They did put her on oral Bactrim so we'll see.

Someone please enlighten me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Gina, Mommie of Breanna
 
G

ginandbrea

New member
Can anyone please fill me in about MRSA and other things?

My daughter is 9 y/o, Dx in Oct w/ CF, immediately in CHSD for 2 weeks w/ FEV1 52%, DF508/3849+10kbc>T, PS and + for MRSA. Has been great since Nov, but now sick again w/ coughing green mucus and so much, tested + for MRSA again. Her Drs. do not seem worried, BUT I AM! I know the Drs. are trying to get to know her, it's only been a few months, but I need some answers. I ask them about her lung capacity since she went so long being Dx w/ Asthma when that wasn't it, they cannot or will not tell me. They do not act concerned about the MRSA. They did put her on oral Bactrim so we'll see.

Someone please enlighten me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Gina, Mommie of Breanna
 
G

ginandbrea

New member
Can anyone please fill me in about MRSA and other things?

My daughter is 9 y/o, Dx in Oct w/ CF, immediately in CHSD for 2 weeks w/ FEV1 52%, DF508/3849+10kbc>T, PS and + for MRSA. Has been great since Nov, but now sick again w/ coughing green mucus and so much, tested + for MRSA again. Her Drs. do not seem worried, BUT I AM! I know the Drs. are trying to get to know her, it's only been a few months, but I need some answers. I ask them about her lung capacity since she went so long being Dx w/ Asthma when that wasn't it, they cannot or will not tell me. They do not act concerned about the MRSA. They did put her on oral Bactrim so we'll see.

Someone please enlighten me <img src="i/expressions/face-icon-small-smile.gif" border="0">

Gina, Mommie of Breanna
 
F

fondreflections

New member
Hi Gina,

I have been living with MRSA for nearly 5 years now. I am still in very good condition despite the diagnosis. My FEV1 is 70%, and I am 26-years-old. Currently, I am not diabetic.

MRSA is what I like to classify was an "opportunist". Day to day, MRSA doesn't really pose any problems to me whatsoever. However, you MUST always be 10 steps ahead. The minute I'm sick it's too late...I end up on oral antibiotics or IV antibiotics. If you give MRSA an inch, it WILL take a mile...

Thankfully, my MRSA is pretty easy to regain control over. After 3 weeks of IVs, I'm as good as new for another 1.5 - 2 years. MRSA USE TO be like a death diagnosis...However, today there are so many treatments available. There is so much hope!!!

I have been unable to shake it. Once it sets up shop, you pretty much have it for the rest of your life. You have to learn how to live WITH it. It can be fustrating, but you CAN live with it.

As far as antibiotics to treat MRSA, there are only really (2) oral antibiotics that work. Bactrim (which your daughter is already on) and Cipro. That is it for oral antibiotics. Honestly, the lack of treatable oral antibiotics is the worst part to me. Who wants IVs everytime you are sick???

On the upside of things, there are MANY IV options. Thank goodness for that...

............................

As far as her lung capacity, what is it usually? I will admit that her level is low for her age, but you probably already figured that out compared to mine. Asthma can lower numbers by quite alot too, though. Do you live in a "cold climate"? That would cause her asthma to worsen resulting in lower lung capacity levels.

Edited to Add: As far as been diagnosed later in life, yes, that probably didn't help her. However, that WASN'T YOUR FAULT!!! Sadly, misdiagnosing happens frequently and moreso when there is no known family history. I was thankfully diagnosed at 3 months of age with no known family history. My parents were doing chest percussion therapy on me while I was still a baby. I was placed on Albuterol the minute it came out on the market. TIME IS EVERYTHING WITH CYSTIC FIBROSIS!!!

Your doctors won't tell you anything about her not being diagnosed more quickly. They cover their a****. I would also suggest taking her to a different clinic than the one that diagnosed her <b>9 years late</b>!!! Another clinic would mostly likely be more supportive and not so into covering their own butts. I believe they would provide better treatment.

............................

In general, I am so sorry to hear about all the heartaches that you and Breanna are facing right now. All of this must be so overwhelming. I don't know how much support you have within your family, but if you ever need anyone to talk to, please feel free to PM me or start a thread in the Adult Section. You will find lots of support there. The Adult Section is where I usually lurk. Please take care. (((HUGS))) <img src="i/expressions/heart.gif" border="0">
 
F

fondreflections

New member
Hi Gina,

I have been living with MRSA for nearly 5 years now. I am still in very good condition despite the diagnosis. My FEV1 is 70%, and I am 26-years-old. Currently, I am not diabetic.

MRSA is what I like to classify was an "opportunist". Day to day, MRSA doesn't really pose any problems to me whatsoever. However, you MUST always be 10 steps ahead. The minute I'm sick it's too late...I end up on oral antibiotics or IV antibiotics. If you give MRSA an inch, it WILL take a mile...

Thankfully, my MRSA is pretty easy to regain control over. After 3 weeks of IVs, I'm as good as new for another 1.5 - 2 years. MRSA USE TO be like a death diagnosis...However, today there are so many treatments available. There is so much hope!!!

I have been unable to shake it. Once it sets up shop, you pretty much have it for the rest of your life. You have to learn how to live WITH it. It can be fustrating, but you CAN live with it.

As far as antibiotics to treat MRSA, there are only really (2) oral antibiotics that work. Bactrim (which your daughter is already on) and Cipro. That is it for oral antibiotics. Honestly, the lack of treatable oral antibiotics is the worst part to me. Who wants IVs everytime you are sick???

On the upside of things, there are MANY IV options. Thank goodness for that...

............................

As far as her lung capacity, what is it usually? I will admit that her level is low for her age, but you probably already figured that out compared to mine. Asthma can lower numbers by quite alot too, though. Do you live in a "cold climate"? That would cause her asthma to worsen resulting in lower lung capacity levels.

Edited to Add: As far as been diagnosed later in life, yes, that probably didn't help her. However, that WASN'T YOUR FAULT!!! Sadly, misdiagnosing happens frequently and moreso when there is no known family history. I was thankfully diagnosed at 3 months of age with no known family history. My parents were doing chest percussion therapy on me while I was still a baby. I was placed on Albuterol the minute it came out on the market. TIME IS EVERYTHING WITH CYSTIC FIBROSIS!!!

Your doctors won't tell you anything about her not being diagnosed more quickly. They cover their a****. I would also suggest taking her to a different clinic than the one that diagnosed her <b>9 years late</b>!!! Another clinic would mostly likely be more supportive and not so into covering their own butts. I believe they would provide better treatment.

............................

In general, I am so sorry to hear about all the heartaches that you and Breanna are facing right now. All of this must be so overwhelming. I don't know how much support you have within your family, but if you ever need anyone to talk to, please feel free to PM me or start a thread in the Adult Section. You will find lots of support there. The Adult Section is where I usually lurk. Please take care. (((HUGS))) <img src="i/expressions/heart.gif" border="0">
 
F

fondreflections

New member
Hi Gina,

I have been living with MRSA for nearly 5 years now. I am still in very good condition despite the diagnosis. My FEV1 is 70%, and I am 26-years-old. Currently, I am not diabetic.

MRSA is what I like to classify was an "opportunist". Day to day, MRSA doesn't really pose any problems to me whatsoever. However, you MUST always be 10 steps ahead. The minute I'm sick it's too late...I end up on oral antibiotics or IV antibiotics. If you give MRSA an inch, it WILL take a mile...

Thankfully, my MRSA is pretty easy to regain control over. After 3 weeks of IVs, I'm as good as new for another 1.5 - 2 years. MRSA USE TO be like a death diagnosis...However, today there are so many treatments available. There is so much hope!!!

I have been unable to shake it. Once it sets up shop, you pretty much have it for the rest of your life. You have to learn how to live WITH it. It can be fustrating, but you CAN live with it.

As far as antibiotics to treat MRSA, there are only really (2) oral antibiotics that work. Bactrim (which your daughter is already on) and Cipro. That is it for oral antibiotics. Honestly, the lack of treatable oral antibiotics is the worst part to me. Who wants IVs everytime you are sick???

On the upside of things, there are MANY IV options. Thank goodness for that...

............................

As far as her lung capacity, what is it usually? I will admit that her level is low for her age, but you probably already figured that out compared to mine. Asthma can lower numbers by quite alot too, though. Do you live in a "cold climate"? That would cause her asthma to worsen resulting in lower lung capacity levels.

Edited to Add: As far as been diagnosed later in life, yes, that probably didn't help her. However, that WASN'T YOUR FAULT!!! Sadly, misdiagnosing happens frequently and moreso when there is no known family history. I was thankfully diagnosed at 3 months of age with no known family history. My parents were doing chest percussion therapy on me while I was still a baby. I was placed on Albuterol the minute it came out on the market. TIME IS EVERYTHING WITH CYSTIC FIBROSIS!!!

Your doctors won't tell you anything about her not being diagnosed more quickly. They cover their a****. I would also suggest taking her to a different clinic than the one that diagnosed her <b>9 years late</b>!!! Another clinic would mostly likely be more supportive and not so into covering their own butts. I believe they would provide better treatment.

............................

In general, I am so sorry to hear about all the heartaches that you and Breanna are facing right now. All of this must be so overwhelming. I don't know how much support you have within your family, but if you ever need anyone to talk to, please feel free to PM me or start a thread in the Adult Section. You will find lots of support there. The Adult Section is where I usually lurk. Please take care. (((HUGS))) <img src="i/expressions/heart.gif" border="0">
 
F

fondreflections

New member
Hi Gina,

I have been living with MRSA for nearly 5 years now. I am still in very good condition despite the diagnosis. My FEV1 is 70%, and I am 26-years-old. Currently, I am not diabetic.

MRSA is what I like to classify was an "opportunist". Day to day, MRSA doesn't really pose any problems to me whatsoever. However, you MUST always be 10 steps ahead. The minute I'm sick it's too late...I end up on oral antibiotics or IV antibiotics. If you give MRSA an inch, it WILL take a mile...

Thankfully, my MRSA is pretty easy to regain control over. After 3 weeks of IVs, I'm as good as new for another 1.5 - 2 years. MRSA USE TO be like a death diagnosis...However, today there are so many treatments available. There is so much hope!!!

I have been unable to shake it. Once it sets up shop, you pretty much have it for the rest of your life. You have to learn how to live WITH it. It can be fustrating, but you CAN live with it.

As far as antibiotics to treat MRSA, there are only really (2) oral antibiotics that work. Bactrim (which your daughter is already on) and Cipro. That is it for oral antibiotics. Honestly, the lack of treatable oral antibiotics is the worst part to me. Who wants IVs everytime you are sick???

On the upside of things, there are MANY IV options. Thank goodness for that...

............................

As far as her lung capacity, what is it usually? I will admit that her level is low for her age, but you probably already figured that out compared to mine. Asthma can lower numbers by quite alot too, though. Do you live in a "cold climate"? That would cause her asthma to worsen resulting in lower lung capacity levels.

Edited to Add: As far as been diagnosed later in life, yes, that probably didn't help her. However, that WASN'T YOUR FAULT!!! Sadly, misdiagnosing happens frequently and moreso when there is no known family history. I was thankfully diagnosed at 3 months of age with no known family history. My parents were doing chest percussion therapy on me while I was still a baby. I was placed on Albuterol the minute it came out on the market. TIME IS EVERYTHING WITH CYSTIC FIBROSIS!!!

Your doctors won't tell you anything about her not being diagnosed more quickly. They cover their a****. I would also suggest taking her to a different clinic than the one that diagnosed her <b>9 years late</b>!!! Another clinic would mostly likely be more supportive and not so into covering their own butts. I believe they would provide better treatment.

............................

In general, I am so sorry to hear about all the heartaches that you and Breanna are facing right now. All of this must be so overwhelming. I don't know how much support you have within your family, but if you ever need anyone to talk to, please feel free to PM me or start a thread in the Adult Section. You will find lots of support there. The Adult Section is where I usually lurk. Please take care. (((HUGS))) <img src="i/expressions/heart.gif" border="0">
 
F

fondreflections

New member
Hi Gina,

I have been living with MRSA for nearly 5 years now. I am still in very good condition despite the diagnosis. My FEV1 is 70%, and I am 26-years-old. Currently, I am not diabetic.

MRSA is what I like to classify was an "opportunist". Day to day, MRSA doesn't really pose any problems to me whatsoever. However, you MUST always be 10 steps ahead. The minute I'm sick it's too late...I end up on oral antibiotics or IV antibiotics. If you give MRSA an inch, it WILL take a mile...

Thankfully, my MRSA is pretty easy to regain control over. After 3 weeks of IVs, I'm as good as new for another 1.5 - 2 years. MRSA USE TO be like a death diagnosis...However, today there are so many treatments available. There is so much hope!!!

I have been unable to shake it. Once it sets up shop, you pretty much have it for the rest of your life. You have to learn how to live WITH it. It can be fustrating, but you CAN live with it.

As far as antibiotics to treat MRSA, there are only really (2) oral antibiotics that work. Bactrim (which your daughter is already on) and Cipro. That is it for oral antibiotics. Honestly, the lack of treatable oral antibiotics is the worst part to me. Who wants IVs everytime you are sick???

On the upside of things, there are MANY IV options. Thank goodness for that...

............................

As far as her lung capacity, what is it usually? I will admit that her level is low for her age, but you probably already figured that out compared to mine. Asthma can lower numbers by quite alot too, though. Do you live in a "cold climate"? That would cause her asthma to worsen resulting in lower lung capacity levels.

Edited to Add: As far as been diagnosed later in life, yes, that probably didn't help her. However, that WASN'T YOUR FAULT!!! Sadly, misdiagnosing happens frequently and moreso when there is no known family history. I was thankfully diagnosed at 3 months of age with no known family history. My parents were doing chest percussion therapy on me while I was still a baby. I was placed on Albuterol the minute it came out on the market. TIME IS EVERYTHING WITH CYSTIC FIBROSIS!!!

Your doctors won't tell you anything about her not being diagnosed more quickly. They cover their a****. I would also suggest taking her to a different clinic than the one that diagnosed her <b>9 years late</b>!!! Another clinic would mostly likely be more supportive and not so into covering their own butts. I believe they would provide better treatment.

............................

In general, I am so sorry to hear about all the heartaches that you and Breanna are facing right now. All of this must be so overwhelming. I don't know how much support you have within your family, but if you ever need anyone to talk to, please feel free to PM me or start a thread in the Adult Section. You will find lots of support there. The Adult Section is where I usually lurk. Please take care. (((HUGS))) <img src="i/expressions/heart.gif" border="0">
 
R

Rebjane

Super Moderator
Gina,

My daughter cultured MRSA when she was 2 and a couple months. We had already known she had CF. Every doctor is different as well as every CF'er is unique. At the time, the opinion of trying to "eradicate MRSA" was to not try to do that. Only treat the MRSA when it flares up or if symptoms show. I felt like they weren't taking my daughter serious enough. She ended up, getting sick and eventually needing a PICC line and IV antibiotics as well as oral antibiotics , now she is on Bactrim prophylactically. When my daughter has a "flare-up" of MRSA Bactrim does little for it. There is another antibiotic that is oral called Zyvox, which works great for my daughter. However, of course it has side effects and is a very strong antibiotic, but works. If you feel that the doctors are not being aggressive enough, let them know. I know they are trying to get to know your daughter, some of CF care is trial and error. You might want to post your question on the adult board too as there are more older people with CF with MRSA and lots of experience. Anyway, we have my daugher on a very specific health care regime that is keeping her out of the hospital at this point. She is on 6 nebs a day; VEST 3 times a day, as well as other meds. Let me know if you need more info.
 
R

Rebjane

Super Moderator
Gina,

My daughter cultured MRSA when she was 2 and a couple months. We had already known she had CF. Every doctor is different as well as every CF'er is unique. At the time, the opinion of trying to "eradicate MRSA" was to not try to do that. Only treat the MRSA when it flares up or if symptoms show. I felt like they weren't taking my daughter serious enough. She ended up, getting sick and eventually needing a PICC line and IV antibiotics as well as oral antibiotics , now she is on Bactrim prophylactically. When my daughter has a "flare-up" of MRSA Bactrim does little for it. There is another antibiotic that is oral called Zyvox, which works great for my daughter. However, of course it has side effects and is a very strong antibiotic, but works. If you feel that the doctors are not being aggressive enough, let them know. I know they are trying to get to know your daughter, some of CF care is trial and error. You might want to post your question on the adult board too as there are more older people with CF with MRSA and lots of experience. Anyway, we have my daugher on a very specific health care regime that is keeping her out of the hospital at this point. She is on 6 nebs a day; VEST 3 times a day, as well as other meds. Let me know if you need more info.
 
R

Rebjane

Super Moderator
Gina,

My daughter cultured MRSA when she was 2 and a couple months. We had already known she had CF. Every doctor is different as well as every CF'er is unique. At the time, the opinion of trying to "eradicate MRSA" was to not try to do that. Only treat the MRSA when it flares up or if symptoms show. I felt like they weren't taking my daughter serious enough. She ended up, getting sick and eventually needing a PICC line and IV antibiotics as well as oral antibiotics , now she is on Bactrim prophylactically. When my daughter has a "flare-up" of MRSA Bactrim does little for it. There is another antibiotic that is oral called Zyvox, which works great for my daughter. However, of course it has side effects and is a very strong antibiotic, but works. If you feel that the doctors are not being aggressive enough, let them know. I know they are trying to get to know your daughter, some of CF care is trial and error. You might want to post your question on the adult board too as there are more older people with CF with MRSA and lots of experience. Anyway, we have my daugher on a very specific health care regime that is keeping her out of the hospital at this point. She is on 6 nebs a day; VEST 3 times a day, as well as other meds. Let me know if you need more info.
 
R

Rebjane

Super Moderator
Gina,

My daughter cultured MRSA when she was 2 and a couple months. We had already known she had CF. Every doctor is different as well as every CF'er is unique. At the time, the opinion of trying to "eradicate MRSA" was to not try to do that. Only treat the MRSA when it flares up or if symptoms show. I felt like they weren't taking my daughter serious enough. She ended up, getting sick and eventually needing a PICC line and IV antibiotics as well as oral antibiotics , now she is on Bactrim prophylactically. When my daughter has a "flare-up" of MRSA Bactrim does little for it. There is another antibiotic that is oral called Zyvox, which works great for my daughter. However, of course it has side effects and is a very strong antibiotic, but works. If you feel that the doctors are not being aggressive enough, let them know. I know they are trying to get to know your daughter, some of CF care is trial and error. You might want to post your question on the adult board too as there are more older people with CF with MRSA and lots of experience. Anyway, we have my daugher on a very specific health care regime that is keeping her out of the hospital at this point. She is on 6 nebs a day; VEST 3 times a day, as well as other meds. Let me know if you need more info.
 
R

Rebjane

Super Moderator
Gina,

My daughter cultured MRSA when she was 2 and a couple months. We had already known she had CF. Every doctor is different as well as every CF'er is unique. At the time, the opinion of trying to "eradicate MRSA" was to not try to do that. Only treat the MRSA when it flares up or if symptoms show. I felt like they weren't taking my daughter serious enough. She ended up, getting sick and eventually needing a PICC line and IV antibiotics as well as oral antibiotics , now she is on Bactrim prophylactically. When my daughter has a "flare-up" of MRSA Bactrim does little for it. There is another antibiotic that is oral called Zyvox, which works great for my daughter. However, of course it has side effects and is a very strong antibiotic, but works. If you feel that the doctors are not being aggressive enough, let them know. I know they are trying to get to know your daughter, some of CF care is trial and error. You might want to post your question on the adult board too as there are more older people with CF with MRSA and lots of experience. Anyway, we have my daugher on a very specific health care regime that is keeping her out of the hospital at this point. She is on 6 nebs a day; VEST 3 times a day, as well as other meds. Let me know if you need more info.
 
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