Antibiotic Resistance

T

ToriMom

Guest
<img src="i/expressions/face-icon-small-confused.gif" border="0">
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
 
T

ToriMom

Guest
<img src="i/expressions/face-icon-small-confused.gif" border="0">
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
 
T

ToriMom

Guest
<img src="i/expressions/face-icon-small-confused.gif" border="0">
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
 
T

ToriMom

Guest
<img src="i/expressions/face-icon-small-confused.gif" border="0">
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
 
T

ToriMom

Guest
<img src="i/expressions/face-icon-small-confused.gif" border="0">
<br />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?
<br />
<br />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.
<br />
<br />Thanks for the vent and any help would be wonderful,
<br />
<br />Thanks in advance,
<br />
<br />Michelle,
<br />mom to Tori, one DF508/one unknown, G-tube, 7 yrs old, brother to Trace, 11 w/Autism
 
P

pjspiegle

New member
Hi Michelle,

I don't think you are out of hope. I think that what they are asking is if you want to give the IV's a try with the understanding they may or may not help or may take a longer course to get results. I think that resistance can just be harder more difficult and require longer treatments to get results. If you are not confident with the docs answers you could ask them to consult another center to see if they have any advice for them as to how to proceed with a treatment plan, or for that matter, if there is another center tha would not be too far away, you could just ask for a consult. I know that Dr. Frank Accurso does consults for patients in other clinics a lot, he is the best of the best currently and may or may not have a recommendation for you but maybe worth a try if your doc is willing.
I also know that they could send cultures to both National Jewish in Denver for special more in depth analysis as well as a Boulder lab that has done excellent work for hard cases and it is possible they could do a more in depth analysis and find an appropriate drug to treat with.

Hope any of this helps or at least gives hope or ideas for you,

Patty
 
P

pjspiegle

New member
Hi Michelle,

I don't think you are out of hope. I think that what they are asking is if you want to give the IV's a try with the understanding they may or may not help or may take a longer course to get results. I think that resistance can just be harder more difficult and require longer treatments to get results. If you are not confident with the docs answers you could ask them to consult another center to see if they have any advice for them as to how to proceed with a treatment plan, or for that matter, if there is another center tha would not be too far away, you could just ask for a consult. I know that Dr. Frank Accurso does consults for patients in other clinics a lot, he is the best of the best currently and may or may not have a recommendation for you but maybe worth a try if your doc is willing.
I also know that they could send cultures to both National Jewish in Denver for special more in depth analysis as well as a Boulder lab that has done excellent work for hard cases and it is possible they could do a more in depth analysis and find an appropriate drug to treat with.

Hope any of this helps or at least gives hope or ideas for you,

Patty
 
P

pjspiegle

New member
Hi Michelle,

I don't think you are out of hope. I think that what they are asking is if you want to give the IV's a try with the understanding they may or may not help or may take a longer course to get results. I think that resistance can just be harder more difficult and require longer treatments to get results. If you are not confident with the docs answers you could ask them to consult another center to see if they have any advice for them as to how to proceed with a treatment plan, or for that matter, if there is another center tha would not be too far away, you could just ask for a consult. I know that Dr. Frank Accurso does consults for patients in other clinics a lot, he is the best of the best currently and may or may not have a recommendation for you but maybe worth a try if your doc is willing.
I also know that they could send cultures to both National Jewish in Denver for special more in depth analysis as well as a Boulder lab that has done excellent work for hard cases and it is possible they could do a more in depth analysis and find an appropriate drug to treat with.

Hope any of this helps or at least gives hope or ideas for you,

Patty
 
P

pjspiegle

New member
Hi Michelle,

I don't think you are out of hope. I think that what they are asking is if you want to give the IV's a try with the understanding they may or may not help or may take a longer course to get results. I think that resistance can just be harder more difficult and require longer treatments to get results. If you are not confident with the docs answers you could ask them to consult another center to see if they have any advice for them as to how to proceed with a treatment plan, or for that matter, if there is another center tha would not be too far away, you could just ask for a consult. I know that Dr. Frank Accurso does consults for patients in other clinics a lot, he is the best of the best currently and may or may not have a recommendation for you but maybe worth a try if your doc is willing.
I also know that they could send cultures to both National Jewish in Denver for special more in depth analysis as well as a Boulder lab that has done excellent work for hard cases and it is possible they could do a more in depth analysis and find an appropriate drug to treat with.

Hope any of this helps or at least gives hope or ideas for you,

Patty
 
P

pjspiegle

New member
Hi Michelle,
<br />
<br />I don't think you are out of hope. I think that what they are asking is if you want to give the IV's a try with the understanding they may or may not help or may take a longer course to get results. I think that resistance can just be harder more difficult and require longer treatments to get results. If you are not confident with the docs answers you could ask them to consult another center to see if they have any advice for them as to how to proceed with a treatment plan, or for that matter, if there is another center tha would not be too far away, you could just ask for a consult. I know that Dr. Frank Accurso does consults for patients in other clinics a lot, he is the best of the best currently and may or may not have a recommendation for you but maybe worth a try if your doc is willing.
<br />I also know that they could send cultures to both National Jewish in Denver for special more in depth analysis as well as a Boulder lab that has done excellent work for hard cases and it is possible they could do a more in depth analysis and find an appropriate drug to treat with.
<br />
<br />Hope any of this helps or at least gives hope or ideas for you,
<br />
<br />Patty
 
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