Abx Resistance-PA

Jane

Digital opinion leader
Oh Tom, you guys really need a break! I'm sorry to hear the latest hurdle.

We don't have experience to share, but just wanted to send support.
 

Jane

Digital opinion leader
Oh Tom, you guys really need a break! I'm sorry to hear the latest hurdle.

We don't have experience to share, but just wanted to send support.
 

Jane

Digital opinion leader
Oh Tom, you guys really need a break! I'm sorry to hear the latest hurdle.

We don't have experience to share, but just wanted to send support.
 

Jane

Digital opinion leader
Oh Tom, you guys really need a break! I'm sorry to hear the latest hurdle.

We don't have experience to share, but just wanted to send support.
 

Jane

Digital opinion leader
Oh Tom, you guys really need a break! I'm sorry to hear the latest hurdle.
<br />
<br />We don't have experience to share, but just wanted to send support.
 

ladybug

New member
So sorry to hear this. I've actually heard from various docs that once you send out for synergy testing, there are many effective combos that often come back... You just have to know which to use to treat. Even if you're resistant to one med on its own, it may very well work in combo with another one or two meds. It usually (or so I've heard) takes a VERY long time before even combos of meds will do the trick. So, that's something to keep in mind. It just takes longer to send off the culture for synergy testing, etc.

Best of luck to you and your little boy.

P.S.... I agree that writing a letter to the FDA explaining your situation would be extremely beneficial at this point. I've heard amazing things about Azli, but since the FDA denied its release, we are stuck with limited options with regard to inhaled/oral meds. 2 inhaled abx (which many people are resistant or can't tolerate) and one oral abx. to treat PA is measley and pathetic.
 

ladybug

New member
So sorry to hear this. I've actually heard from various docs that once you send out for synergy testing, there are many effective combos that often come back... You just have to know which to use to treat. Even if you're resistant to one med on its own, it may very well work in combo with another one or two meds. It usually (or so I've heard) takes a VERY long time before even combos of meds will do the trick. So, that's something to keep in mind. It just takes longer to send off the culture for synergy testing, etc.

Best of luck to you and your little boy.

P.S.... I agree that writing a letter to the FDA explaining your situation would be extremely beneficial at this point. I've heard amazing things about Azli, but since the FDA denied its release, we are stuck with limited options with regard to inhaled/oral meds. 2 inhaled abx (which many people are resistant or can't tolerate) and one oral abx. to treat PA is measley and pathetic.
 

ladybug

New member
So sorry to hear this. I've actually heard from various docs that once you send out for synergy testing, there are many effective combos that often come back... You just have to know which to use to treat. Even if you're resistant to one med on its own, it may very well work in combo with another one or two meds. It usually (or so I've heard) takes a VERY long time before even combos of meds will do the trick. So, that's something to keep in mind. It just takes longer to send off the culture for synergy testing, etc.

Best of luck to you and your little boy.

P.S.... I agree that writing a letter to the FDA explaining your situation would be extremely beneficial at this point. I've heard amazing things about Azli, but since the FDA denied its release, we are stuck with limited options with regard to inhaled/oral meds. 2 inhaled abx (which many people are resistant or can't tolerate) and one oral abx. to treat PA is measley and pathetic.
 

ladybug

New member
So sorry to hear this. I've actually heard from various docs that once you send out for synergy testing, there are many effective combos that often come back... You just have to know which to use to treat. Even if you're resistant to one med on its own, it may very well work in combo with another one or two meds. It usually (or so I've heard) takes a VERY long time before even combos of meds will do the trick. So, that's something to keep in mind. It just takes longer to send off the culture for synergy testing, etc.

Best of luck to you and your little boy.

P.S.... I agree that writing a letter to the FDA explaining your situation would be extremely beneficial at this point. I've heard amazing things about Azli, but since the FDA denied its release, we are stuck with limited options with regard to inhaled/oral meds. 2 inhaled abx (which many people are resistant or can't tolerate) and one oral abx. to treat PA is measley and pathetic.
 

ladybug

New member
So sorry to hear this. I've actually heard from various docs that once you send out for synergy testing, there are many effective combos that often come back... You just have to know which to use to treat. Even if you're resistant to one med on its own, it may very well work in combo with another one or two meds. It usually (or so I've heard) takes a VERY long time before even combos of meds will do the trick. So, that's something to keep in mind. It just takes longer to send off the culture for synergy testing, etc.
<br />
<br />Best of luck to you and your little boy.
<br />
<br />P.S.... I agree that writing a letter to the FDA explaining your situation would be extremely beneficial at this point. I've heard amazing things about Azli, but since the FDA denied its release, we are stuck with limited options with regard to inhaled/oral meds. 2 inhaled abx (which many people are resistant or can't tolerate) and one oral abx. to treat PA is measley and pathetic.
<br />
<br />
 

just1more

New member
Thank you all for your input & ideas.

Now we are just crossing our fingers the synergy testing comes up with some good options for us.
 

just1more

New member
Thank you all for your input & ideas.

Now we are just crossing our fingers the synergy testing comes up with some good options for us.
 

just1more

New member
Thank you all for your input & ideas.

Now we are just crossing our fingers the synergy testing comes up with some good options for us.
 

just1more

New member
Thank you all for your input & ideas.

Now we are just crossing our fingers the synergy testing comes up with some good options for us.
 

just1more

New member
Thank you all for your input & ideas.
<br />
<br />Now we are just crossing our fingers the synergy testing comes up with some good options for us.
 

TestifyToLove

New member
All the way home from the hospital, I kept trying to tell myself its not as bad as it feels like. Maybe this isn't the end of the world afterall. Maybe its easy to treat.

I guess it could be worse right now. They could have told us he cultured b.cepacia. But, it sure ain't great. And, if ever there was a kid who needed a break from the mess that he gets to call his life, this was the kid.

It takes the child 6 YEARS to get a forever family that will love him, support him and stand beside him. He endures years of absolute medical neglect and horrid apathy. And now...now we get this on top of everything else.

Great...just great.
 

TestifyToLove

New member
All the way home from the hospital, I kept trying to tell myself its not as bad as it feels like. Maybe this isn't the end of the world afterall. Maybe its easy to treat.

I guess it could be worse right now. They could have told us he cultured b.cepacia. But, it sure ain't great. And, if ever there was a kid who needed a break from the mess that he gets to call his life, this was the kid.

It takes the child 6 YEARS to get a forever family that will love him, support him and stand beside him. He endures years of absolute medical neglect and horrid apathy. And now...now we get this on top of everything else.

Great...just great.
 

TestifyToLove

New member
All the way home from the hospital, I kept trying to tell myself its not as bad as it feels like. Maybe this isn't the end of the world afterall. Maybe its easy to treat.

I guess it could be worse right now. They could have told us he cultured b.cepacia. But, it sure ain't great. And, if ever there was a kid who needed a break from the mess that he gets to call his life, this was the kid.

It takes the child 6 YEARS to get a forever family that will love him, support him and stand beside him. He endures years of absolute medical neglect and horrid apathy. And now...now we get this on top of everything else.

Great...just great.
 

TestifyToLove

New member
All the way home from the hospital, I kept trying to tell myself its not as bad as it feels like. Maybe this isn't the end of the world afterall. Maybe its easy to treat.

I guess it could be worse right now. They could have told us he cultured b.cepacia. But, it sure ain't great. And, if ever there was a kid who needed a break from the mess that he gets to call his life, this was the kid.

It takes the child 6 YEARS to get a forever family that will love him, support him and stand beside him. He endures years of absolute medical neglect and horrid apathy. And now...now we get this on top of everything else.

Great...just great.
 

TestifyToLove

New member
All the way home from the hospital, I kept trying to tell myself its not as bad as it feels like. Maybe this isn't the end of the world afterall. Maybe its easy to treat.
<br />
<br />I guess it could be worse right now. They could have told us he cultured b.cepacia. But, it sure ain't great. And, if ever there was a kid who needed a break from the mess that he gets to call his life, this was the kid.
<br />
<br />It takes the child 6 YEARS to get a forever family that will love him, support him and stand beside him. He endures years of absolute medical neglect and horrid apathy. And now...now we get this on top of everything else.
<br />
<br />Great...just great.
 
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