Antibiotic Resistance

ToriMom · May 6, 2008

I posted this to the families board already, but I know you adults know more about resistance so please excuse the cross-post...looking for some answers:

We just found out our daughter, 7 years of age, has antibiotic resistant Sten Maltophilia. In the past she has cultured this bug (about a year or so ago) but with some choices treatment-wise like Levo or minocycline. In the last year she has gone from having PFT numbers above 104% in March 2007 and now they are at 74-79% PFT which is just very depressing overall for a child so young. My question for you is this...what does this really mean...we have no meds to help our child or what? The docs are asking if I want to put her in for a tune-up, but as parents we are thinking...do tune-ups do anything for you if you are antibiotic resistant?

I have never had a doc ask us what we want as far as IV antibiotics...our past clinics told us when we needed them and we complied. Now it seems they are lost as to how to proceed which is also quite scary because if they don't know...???? How are we supposed to answer when they ask us if we want to treat w/inpatient meds? Besides feeling frustrated I am wondering what this new info really means? Should we be thinking we are out of hope or what? I sure do feel out of options, and tomorrow morning we go in to do a follow-up PFT and see what to do. She is also culturing a mild growth of Staph, but that is all.

Thanks for the vent and any help would be wonderful,

Thanks in advance,

Michelle,
mom to Tori, one DF508/one unknown, G-tube, 7 yrs old, brother to Trace, 11 w/Autism

ToriMom · May 6, 2008

I posted this to the families board already, but I know you adults know more about resistance so please excuse the cross-post...looking for some answers:

We just found out our daughter, 7 years of age, has antibiotic resistant Sten Maltophilia. In the past she has cultured this bug (about a year or so ago) but with some choices treatment-wise like Levo or minocycline. In the last year she has gone from having PFT numbers above 104% in March 2007 and now they are at 74-79% PFT which is just very depressing overall for a child so young. My question for you is this...what does this really mean...we have no meds to help our child or what? The docs are asking if I want to put her in for a tune-up, but as parents we are thinking...do tune-ups do anything for you if you are antibiotic resistant?

I have never had a doc ask us what we want as far as IV antibiotics...our past clinics told us when we needed them and we complied. Now it seems they are lost as to how to proceed which is also quite scary because if they don't know...???? How are we supposed to answer when they ask us if we want to treat w/inpatient meds? Besides feeling frustrated I am wondering what this new info really means? Should we be thinking we are out of hope or what? I sure do feel out of options, and tomorrow morning we go in to do a follow-up PFT and see what to do. She is also culturing a mild growth of Staph, but that is all.

Thanks for the vent and any help would be wonderful,

Thanks in advance,

Michelle,
mom to Tori, one DF508/one unknown, G-tube, 7 yrs old, brother to Trace, 11 w/Autism

ToriMom · May 6, 2008

I posted this to the families board already, but I know you adults know more about resistance so please excuse the cross-post...looking for some answers:

We just found out our daughter, 7 years of age, has antibiotic resistant Sten Maltophilia. In the past she has cultured this bug (about a year or so ago) but with some choices treatment-wise like Levo or minocycline. In the last year she has gone from having PFT numbers above 104% in March 2007 and now they are at 74-79% PFT which is just very depressing overall for a child so young. My question for you is this...what does this really mean...we have no meds to help our child or what? The docs are asking if I want to put her in for a tune-up, but as parents we are thinking...do tune-ups do anything for you if you are antibiotic resistant?

I have never had a doc ask us what we want as far as IV antibiotics...our past clinics told us when we needed them and we complied. Now it seems they are lost as to how to proceed which is also quite scary because if they don't know...???? How are we supposed to answer when they ask us if we want to treat w/inpatient meds? Besides feeling frustrated I am wondering what this new info really means? Should we be thinking we are out of hope or what? I sure do feel out of options, and tomorrow morning we go in to do a follow-up PFT and see what to do. She is also culturing a mild growth of Staph, but that is all.

Thanks for the vent and any help would be wonderful,

Thanks in advance,

Michelle,
mom to Tori, one DF508/one unknown, G-tube, 7 yrs old, brother to Trace, 11 w/Autism

ToriMom · May 6, 2008

I posted this to the families board already, but I know you adults know more about resistance so please excuse the cross-post...looking for some answers:

We just found out our daughter, 7 years of age, has antibiotic resistant Sten Maltophilia. In the past she has cultured this bug (about a year or so ago) but with some choices treatment-wise like Levo or minocycline. In the last year she has gone from having PFT numbers above 104% in March 2007 and now they are at 74-79% PFT which is just very depressing overall for a child so young. My question for you is this...what does this really mean...we have no meds to help our child or what? The docs are asking if I want to put her in for a tune-up, but as parents we are thinking...do tune-ups do anything for you if you are antibiotic resistant?

I have never had a doc ask us what we want as far as IV antibiotics...our past clinics told us when we needed them and we complied. Now it seems they are lost as to how to proceed which is also quite scary because if they don't know...???? How are we supposed to answer when they ask us if we want to treat w/inpatient meds? Besides feeling frustrated I am wondering what this new info really means? Should we be thinking we are out of hope or what? I sure do feel out of options, and tomorrow morning we go in to do a follow-up PFT and see what to do. She is also culturing a mild growth of Staph, but that is all.

Thanks for the vent and any help would be wonderful,

Thanks in advance,

Michelle,
mom to Tori, one DF508/one unknown, G-tube, 7 yrs old, brother to Trace, 11 w/Autism

ToriMom · May 6, 2008

I posted this to the families board already, but I know you adults know more about resistance so please excuse the cross-post...looking for some answers:
 
 We just found out our daughter, 7 years of age, has antibiotic resistant Sten Maltophilia. In the past she has cultured this bug (about a year or so ago) but with some choices treatment-wise like Levo or minocycline. In the last year she has gone from having PFT numbers above 104% in March 2007 and now they are at 74-79% PFT which is just very depressing overall for a child so young. My question for you is this...what does this really mean...we have no meds to help our child or what? The docs are asking if I want to put her in for a tune-up, but as parents we are thinking...do tune-ups do anything for you if you are antibiotic resistant?
 
 I have never had a doc ask us what we want as far as IV antibiotics...our past clinics told us when we needed them and we complied. Now it seems they are lost as to how to proceed which is also quite scary because if they don't know...???? How are we supposed to answer when they ask us if we want to treat w/inpatient meds? Besides feeling frustrated I am wondering what this new info really means? Should we be thinking we are out of hope or what? I sure do feel out of options, and tomorrow morning we go in to do a follow-up PFT and see what to do. She is also culturing a mild growth of Staph, but that is all.
 
 Thanks for the vent and any help would be wonderful,
 
 Thanks in advance,
 
 Michelle,
 mom to Tori, one DF508/one unknown, G-tube, 7 yrs old, brother to Trace, 11 w/Autism

Ratatosk · May 6, 2008

Did you get a copy of the lab report? I know when DS cultured it for the first time, it listed which antibiotics it was sensitive to and there was one -- think it was "cefta" that it was resistant to and that's an antibiotic DS has never ever been on.

I guess I'd be asking what they suggest for a course of action in terms of treatment. Especially with such a drop in PFT numbers.

Ratatosk · May 6, 2008

Did you get a copy of the lab report? I know when DS cultured it for the first time, it listed which antibiotics it was sensitive to and there was one -- think it was "cefta" that it was resistant to and that's an antibiotic DS has never ever been on.

I guess I'd be asking what they suggest for a course of action in terms of treatment. Especially with such a drop in PFT numbers.

Ratatosk · May 6, 2008

Did you get a copy of the lab report? I know when DS cultured it for the first time, it listed which antibiotics it was sensitive to and there was one -- think it was "cefta" that it was resistant to and that's an antibiotic DS has never ever been on.

I guess I'd be asking what they suggest for a course of action in terms of treatment. Especially with such a drop in PFT numbers.

Ratatosk · May 6, 2008

Did you get a copy of the lab report? I know when DS cultured it for the first time, it listed which antibiotics it was sensitive to and there was one -- think it was "cefta" that it was resistant to and that's an antibiotic DS has never ever been on.

I guess I'd be asking what they suggest for a course of action in terms of treatment. Especially with such a drop in PFT numbers.

Ratatosk · May 6, 2008

Did you get a copy of the lab report? I know when DS cultured it for the first time, it listed which antibiotics it was sensitive to and there was one -- think it was "cefta" that it was resistant to and that's an antibiotic DS has never ever been on.
 
 I guess I'd be asking what they suggest for a course of action in terms of treatment. Especially with such a drop in PFT numbers.

Skye · May 6, 2008

I am going to make an attempt to help; but, I am certainly no expert. If I was in your shoes, I would ask if there is a possible combination of antibiotics that may work. I think you can send cultures off to a more specialized lab that looks at the effects of certain combinations. I would also ask about any options that are an inhaled antibiotic, (ie. Tobi). I have been told that even when an infection is resistant to IV that the concentration that is provided with an inhaled antibiotic is so much greater that it can still be very effective. For example, I have a strain of PA that is resistant to Tobra but I continue to use inhaled Tobi for the reason I mentioned. Do you have the option of getting a second opinion. Sometimes 2 heads are better than one. I know that may be a hardship for you; but, I have done this recently with some very good results and a little bit of peace of mind. They will probably do this any way; but, I would have the culture repeated in a couple of months or even sooner. Sensitivity and resistance can change though usually not dramatically.

On another note, Aztreanam Lysine for inhalation will hopefully be available by the fall. This is a wonderful inhaled antibiotic with much success. I am on it right now and love the convenience of it and how easy it is to tolerate. This may be an option for your little one in the future. It is delivered via e-flow which is a much finer mist and goes deep into the lungs.

Hugs to you and I hope this helps a little!
Karen

Skye · May 6, 2008

I am going to make an attempt to help; but, I am certainly no expert. If I was in your shoes, I would ask if there is a possible combination of antibiotics that may work. I think you can send cultures off to a more specialized lab that looks at the effects of certain combinations. I would also ask about any options that are an inhaled antibiotic, (ie. Tobi). I have been told that even when an infection is resistant to IV that the concentration that is provided with an inhaled antibiotic is so much greater that it can still be very effective. For example, I have a strain of PA that is resistant to Tobra but I continue to use inhaled Tobi for the reason I mentioned. Do you have the option of getting a second opinion. Sometimes 2 heads are better than one. I know that may be a hardship for you; but, I have done this recently with some very good results and a little bit of peace of mind. They will probably do this any way; but, I would have the culture repeated in a couple of months or even sooner. Sensitivity and resistance can change though usually not dramatically.

On another note, Aztreanam Lysine for inhalation will hopefully be available by the fall. This is a wonderful inhaled antibiotic with much success. I am on it right now and love the convenience of it and how easy it is to tolerate. This may be an option for your little one in the future. It is delivered via e-flow which is a much finer mist and goes deep into the lungs.

Hugs to you and I hope this helps a little!
Karen

Skye · May 6, 2008

I am going to make an attempt to help; but, I am certainly no expert. If I was in your shoes, I would ask if there is a possible combination of antibiotics that may work. I think you can send cultures off to a more specialized lab that looks at the effects of certain combinations. I would also ask about any options that are an inhaled antibiotic, (ie. Tobi). I have been told that even when an infection is resistant to IV that the concentration that is provided with an inhaled antibiotic is so much greater that it can still be very effective. For example, I have a strain of PA that is resistant to Tobra but I continue to use inhaled Tobi for the reason I mentioned. Do you have the option of getting a second opinion. Sometimes 2 heads are better than one. I know that may be a hardship for you; but, I have done this recently with some very good results and a little bit of peace of mind. They will probably do this any way; but, I would have the culture repeated in a couple of months or even sooner. Sensitivity and resistance can change though usually not dramatically.

On another note, Aztreanam Lysine for inhalation will hopefully be available by the fall. This is a wonderful inhaled antibiotic with much success. I am on it right now and love the convenience of it and how easy it is to tolerate. This may be an option for your little one in the future. It is delivered via e-flow which is a much finer mist and goes deep into the lungs.

Hugs to you and I hope this helps a little!
Karen

Skye · May 6, 2008

I am going to make an attempt to help; but, I am certainly no expert. If I was in your shoes, I would ask if there is a possible combination of antibiotics that may work. I think you can send cultures off to a more specialized lab that looks at the effects of certain combinations. I would also ask about any options that are an inhaled antibiotic, (ie. Tobi). I have been told that even when an infection is resistant to IV that the concentration that is provided with an inhaled antibiotic is so much greater that it can still be very effective. For example, I have a strain of PA that is resistant to Tobra but I continue to use inhaled Tobi for the reason I mentioned. Do you have the option of getting a second opinion. Sometimes 2 heads are better than one. I know that may be a hardship for you; but, I have done this recently with some very good results and a little bit of peace of mind. They will probably do this any way; but, I would have the culture repeated in a couple of months or even sooner. Sensitivity and resistance can change though usually not dramatically.

On another note, Aztreanam Lysine for inhalation will hopefully be available by the fall. This is a wonderful inhaled antibiotic with much success. I am on it right now and love the convenience of it and how easy it is to tolerate. This may be an option for your little one in the future. It is delivered via e-flow which is a much finer mist and goes deep into the lungs.

Hugs to you and I hope this helps a little!
Karen

Skye · May 6, 2008

I am going to make an attempt to help; but, I am certainly no expert. If I was in your shoes, I would ask if there is a possible combination of antibiotics that may work. I think you can send cultures off to a more specialized lab that looks at the effects of certain combinations. I would also ask about any options that are an inhaled antibiotic, (ie. Tobi). I have been told that even when an infection is resistant to IV that the concentration that is provided with an inhaled antibiotic is so much greater that it can still be very effective. For example, I have a strain of PA that is resistant to Tobra but I continue to use inhaled Tobi for the reason I mentioned. Do you have the option of getting a second opinion. Sometimes 2 heads are better than one. I know that may be a hardship for you; but, I have done this recently with some very good results and a little bit of peace of mind. They will probably do this any way; but, I would have the culture repeated in a couple of months or even sooner. Sensitivity and resistance can change though usually not dramatically.
 
 On another note, Aztreanam Lysine for inhalation will hopefully be available by the fall. This is a wonderful inhaled antibiotic with much success. I am on it right now and love the convenience of it and how easy it is to tolerate. This may be an option for your little one in the future. It is delivered via e-flow which is a much finer mist and goes deep into the lungs.
 
 Hugs to you and I hope this helps a little!
 Karen

JustDucky · May 6, 2008

I have been culturing steno for over a year now. It is a resistant bug...they usually try two different IV's (I also culture cepacia..makes things more complicated) to help knock it down (they look at the cepacia as well to pick the right ones that will get both of them) I would ask if there is a combo they can try, perhaps ask to send her sample off for synergy testing if the steno is resistant to most IV's (it is pretty resistant, at least the strain that I have is). Like Karen said, maybe get another opinion too..I pray that the docs eventually find the right combo for your daughter. Hugs, Jenn

JustDucky · May 6, 2008

I have been culturing steno for over a year now. It is a resistant bug...they usually try two different IV's (I also culture cepacia..makes things more complicated) to help knock it down (they look at the cepacia as well to pick the right ones that will get both of them) I would ask if there is a combo they can try, perhaps ask to send her sample off for synergy testing if the steno is resistant to most IV's (it is pretty resistant, at least the strain that I have is). Like Karen said, maybe get another opinion too..I pray that the docs eventually find the right combo for your daughter. Hugs, Jenn

JustDucky · May 6, 2008

I have been culturing steno for over a year now. It is a resistant bug...they usually try two different IV's (I also culture cepacia..makes things more complicated) to help knock it down (they look at the cepacia as well to pick the right ones that will get both of them) I would ask if there is a combo they can try, perhaps ask to send her sample off for synergy testing if the steno is resistant to most IV's (it is pretty resistant, at least the strain that I have is). Like Karen said, maybe get another opinion too..I pray that the docs eventually find the right combo for your daughter. Hugs, Jenn

JustDucky · May 6, 2008

I have been culturing steno for over a year now. It is a resistant bug...they usually try two different IV's (I also culture cepacia..makes things more complicated) to help knock it down (they look at the cepacia as well to pick the right ones that will get both of them) I would ask if there is a combo they can try, perhaps ask to send her sample off for synergy testing if the steno is resistant to most IV's (it is pretty resistant, at least the strain that I have is). Like Karen said, maybe get another opinion too..I pray that the docs eventually find the right combo for your daughter. Hugs, Jenn

JustDucky · May 6, 2008

I have been culturing steno for over a year now. It is a resistant bug...they usually try two different IV's (I also culture cepacia..makes things more complicated) to help knock it down (they look at the cepacia as well to pick the right ones that will get both of them) I would ask if there is a combo they can try, perhaps ask to send her sample off for synergy testing if the steno is resistant to most IV's (it is pretty resistant, at least the strain that I have is). Like Karen said, maybe get another opinion too..I pray that the docs eventually find the right combo for your daughter. Hugs, Jenn

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