Just cultured Nonmucoid pseudo for the first time

M

mneville

Guest
So sorry Natalie. Aidan has not cultured PA but I was devastated when he cultured MRSA for the first time. I couldn't eat or sleep, was just devastated. MRSA can actually be harder to get rid of than PA and he has had it for a year now despite aggressive treatments.

Have hope. All the new info has shown that PA can be eradicated! Check out the sessions on cff.org from the conference. They talk all about getting rid of PA. It seems that nebbed TOBI is good enough to clear it in most cases. I know how hard it is every time a new treatment is added, it's just not fair! But these kids are amazing and most often it bothers me more than Aidan. Have faith, you'll get rid of it!

Megan,mom to Aidan 5 CF and Gavin 2, no CF
 
M

mneville

Guest
So sorry Natalie. Aidan has not cultured PA but I was devastated when he cultured MRSA for the first time. I couldn't eat or sleep, was just devastated. MRSA can actually be harder to get rid of than PA and he has had it for a year now despite aggressive treatments.

Have hope. All the new info has shown that PA can be eradicated! Check out the sessions on cff.org from the conference. They talk all about getting rid of PA. It seems that nebbed TOBI is good enough to clear it in most cases. I know how hard it is every time a new treatment is added, it's just not fair! But these kids are amazing and most often it bothers me more than Aidan. Have faith, you'll get rid of it!

Megan,mom to Aidan 5 CF and Gavin 2, no CF
 
M

mneville

Guest
So sorry Natalie. Aidan has not cultured PA but I was devastated when he cultured MRSA for the first time. I couldn't eat or sleep, was just devastated. MRSA can actually be harder to get rid of than PA and he has had it for a year now despite aggressive treatments.

Have hope. All the new info has shown that PA can be eradicated! Check out the sessions on cff.org from the conference. They talk all about getting rid of PA. It seems that nebbed TOBI is good enough to clear it in most cases. I know how hard it is every time a new treatment is added, it's just not fair! But these kids are amazing and most often it bothers me more than Aidan. Have faith, you'll get rid of it!

Megan,mom to Aidan 5 CF and Gavin 2, no CF
 
M

mneville

Guest
So sorry Natalie. Aidan has not cultured PA but I was devastated when he cultured MRSA for the first time. I couldn't eat or sleep, was just devastated. MRSA can actually be harder to get rid of than PA and he has had it for a year now despite aggressive treatments.

Have hope. All the new info has shown that PA can be eradicated! Check out the sessions on cff.org from the conference. They talk all about getting rid of PA. It seems that nebbed TOBI is good enough to clear it in most cases. I know how hard it is every time a new treatment is added, it's just not fair! But these kids are amazing and most often it bothers me more than Aidan. Have faith, you'll get rid of it!

Megan,mom to Aidan 5 CF and Gavin 2, no CF
 
M

mneville

Guest
So sorry Natalie. Aidan has not cultured PA but I was devastated when he cultured MRSA for the first time. I couldn't eat or sleep, was just devastated. MRSA can actually be harder to get rid of than PA and he has had it for a year now despite aggressive treatments.
<br />
<br />Have hope. All the new info has shown that PA can be eradicated! Check out the sessions on cff.org from the conference. They talk all about getting rid of PA. It seems that nebbed TOBI is good enough to clear it in most cases. I know how hard it is every time a new treatment is added, it's just not fair! But these kids are amazing and most often it bothers me more than Aidan. Have faith, you'll get rid of it!
<br />
<br />Megan,mom to Aidan 5 CF and Gavin 2, no CF
 
M

mbrandazzo

New member
Hi Natalie!

I can't tell you how thankful I am to you for starting this post. My son Logan (21 months) cultured pseudo for the first time a couple months ago... It did feel like the wind was knocked out of me...and like you said, almost like getting the diagnosis all over again...

When we found out, his doctor sent us home with the month's supply of TOBI and we started the daily regimen of adding it to the routine... Since then Logan has been doing great, barely even a cough, so we thought FOR SURE we got gotten rid of it... Well, yesterday I got the call that we were not so lucky, and again it felt like being hit while you're not looking... I was sobbing at work...

Reading this post has helped alleviate some fear... Knowing that we're not alone is comforting. It is also good to know that this has happened to so many and it wasn't necessarily anything we did "wrong." I think that is always the first thing that pops into my head when we are hit with a "bump" - what could we have done to prevent it??? Like some said above, his doctor told us that there is NO WAY you can avoid pseudo, I guess it is everywhere... She also added that it is not the end of the world, and that it can be kept at bay with TOBI, if not gotten rid of! So we are staying positive and trying to focus on the good things.

So, you are not alone, and there is hope. Oh, and we follow the routine of abuterol, then his hypertonic saline (clinical trial), followed by TOBI, and finally pulmozyme...

Take care, and agin thanks for the post!
 
M

mbrandazzo

New member
Hi Natalie!

I can't tell you how thankful I am to you for starting this post. My son Logan (21 months) cultured pseudo for the first time a couple months ago... It did feel like the wind was knocked out of me...and like you said, almost like getting the diagnosis all over again...

When we found out, his doctor sent us home with the month's supply of TOBI and we started the daily regimen of adding it to the routine... Since then Logan has been doing great, barely even a cough, so we thought FOR SURE we got gotten rid of it... Well, yesterday I got the call that we were not so lucky, and again it felt like being hit while you're not looking... I was sobbing at work...

Reading this post has helped alleviate some fear... Knowing that we're not alone is comforting. It is also good to know that this has happened to so many and it wasn't necessarily anything we did "wrong." I think that is always the first thing that pops into my head when we are hit with a "bump" - what could we have done to prevent it??? Like some said above, his doctor told us that there is NO WAY you can avoid pseudo, I guess it is everywhere... She also added that it is not the end of the world, and that it can be kept at bay with TOBI, if not gotten rid of! So we are staying positive and trying to focus on the good things.

So, you are not alone, and there is hope. Oh, and we follow the routine of abuterol, then his hypertonic saline (clinical trial), followed by TOBI, and finally pulmozyme...

Take care, and agin thanks for the post!
 
M

mbrandazzo

New member
Hi Natalie!

I can't tell you how thankful I am to you for starting this post. My son Logan (21 months) cultured pseudo for the first time a couple months ago... It did feel like the wind was knocked out of me...and like you said, almost like getting the diagnosis all over again...

When we found out, his doctor sent us home with the month's supply of TOBI and we started the daily regimen of adding it to the routine... Since then Logan has been doing great, barely even a cough, so we thought FOR SURE we got gotten rid of it... Well, yesterday I got the call that we were not so lucky, and again it felt like being hit while you're not looking... I was sobbing at work...

Reading this post has helped alleviate some fear... Knowing that we're not alone is comforting. It is also good to know that this has happened to so many and it wasn't necessarily anything we did "wrong." I think that is always the first thing that pops into my head when we are hit with a "bump" - what could we have done to prevent it??? Like some said above, his doctor told us that there is NO WAY you can avoid pseudo, I guess it is everywhere... She also added that it is not the end of the world, and that it can be kept at bay with TOBI, if not gotten rid of! So we are staying positive and trying to focus on the good things.

So, you are not alone, and there is hope. Oh, and we follow the routine of abuterol, then his hypertonic saline (clinical trial), followed by TOBI, and finally pulmozyme...

Take care, and agin thanks for the post!
 
M

mbrandazzo

New member
Hi Natalie!

I can't tell you how thankful I am to you for starting this post. My son Logan (21 months) cultured pseudo for the first time a couple months ago... It did feel like the wind was knocked out of me...and like you said, almost like getting the diagnosis all over again...

When we found out, his doctor sent us home with the month's supply of TOBI and we started the daily regimen of adding it to the routine... Since then Logan has been doing great, barely even a cough, so we thought FOR SURE we got gotten rid of it... Well, yesterday I got the call that we were not so lucky, and again it felt like being hit while you're not looking... I was sobbing at work...

Reading this post has helped alleviate some fear... Knowing that we're not alone is comforting. It is also good to know that this has happened to so many and it wasn't necessarily anything we did "wrong." I think that is always the first thing that pops into my head when we are hit with a "bump" - what could we have done to prevent it??? Like some said above, his doctor told us that there is NO WAY you can avoid pseudo, I guess it is everywhere... She also added that it is not the end of the world, and that it can be kept at bay with TOBI, if not gotten rid of! So we are staying positive and trying to focus on the good things.

So, you are not alone, and there is hope. Oh, and we follow the routine of abuterol, then his hypertonic saline (clinical trial), followed by TOBI, and finally pulmozyme...

Take care, and agin thanks for the post!
 
M

mbrandazzo

New member
Hi Natalie!
<br />
<br />I can't tell you how thankful I am to you for starting this post. My son Logan (21 months) cultured pseudo for the first time a couple months ago... It did feel like the wind was knocked out of me...and like you said, almost like getting the diagnosis all over again...
<br />
<br />When we found out, his doctor sent us home with the month's supply of TOBI and we started the daily regimen of adding it to the routine... Since then Logan has been doing great, barely even a cough, so we thought FOR SURE we got gotten rid of it... Well, yesterday I got the call that we were not so lucky, and again it felt like being hit while you're not looking... I was sobbing at work...
<br />
<br />Reading this post has helped alleviate some fear... Knowing that we're not alone is comforting. It is also good to know that this has happened to so many and it wasn't necessarily anything we did "wrong." I think that is always the first thing that pops into my head when we are hit with a "bump" - what could we have done to prevent it??? Like some said above, his doctor told us that there is NO WAY you can avoid pseudo, I guess it is everywhere... She also added that it is not the end of the world, and that it can be kept at bay with TOBI, if not gotten rid of! So we are staying positive and trying to focus on the good things.
<br />
<br />So, you are not alone, and there is hope. Oh, and we follow the routine of abuterol, then his hypertonic saline (clinical trial), followed by TOBI, and finally pulmozyme...
<br />
<br />Take care, and agin thanks for the post!
 
C

cfmombeth

Guest
My son John age 8 was just diagnosed a few weeks ago..I agree it is like getting the diagnosis all over again. Everytime I think I am coming to grips with his situation something like this seems to come up and forces me to face issues I would rather not think about. He is the first person in our family and it is hard not knowing what to expect...and people who aren't in our shoes just don't understand. Heck somedays I'm not sure I understand yet. John was only diagnosed 22 months ago <img src="i/expressions/face-icon-small-sad.gif" border="0"> so we are still adjusting to the overwhelming nature of this condition.

I have a question for those of you experienced with Tobi---John seems to be alittle hyper and won't stop talking (MOTOR MOUTH)--is this a NORMAL side effect??? Does it calm down???? Thanks for the input.

I am sorry to hear that others are going through the same heartbreaking issues that we are---but just know that there are others out there who understand<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

cfmombeth

Guest
My son John age 8 was just diagnosed a few weeks ago..I agree it is like getting the diagnosis all over again. Everytime I think I am coming to grips with his situation something like this seems to come up and forces me to face issues I would rather not think about. He is the first person in our family and it is hard not knowing what to expect...and people who aren't in our shoes just don't understand. Heck somedays I'm not sure I understand yet. John was only diagnosed 22 months ago <img src="i/expressions/face-icon-small-sad.gif" border="0"> so we are still adjusting to the overwhelming nature of this condition.

I have a question for those of you experienced with Tobi---John seems to be alittle hyper and won't stop talking (MOTOR MOUTH)--is this a NORMAL side effect??? Does it calm down???? Thanks for the input.

I am sorry to hear that others are going through the same heartbreaking issues that we are---but just know that there are others out there who understand<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

cfmombeth

Guest
My son John age 8 was just diagnosed a few weeks ago..I agree it is like getting the diagnosis all over again. Everytime I think I am coming to grips with his situation something like this seems to come up and forces me to face issues I would rather not think about. He is the first person in our family and it is hard not knowing what to expect...and people who aren't in our shoes just don't understand. Heck somedays I'm not sure I understand yet. John was only diagnosed 22 months ago <img src="i/expressions/face-icon-small-sad.gif" border="0"> so we are still adjusting to the overwhelming nature of this condition.

I have a question for those of you experienced with Tobi---John seems to be alittle hyper and won't stop talking (MOTOR MOUTH)--is this a NORMAL side effect??? Does it calm down???? Thanks for the input.

I am sorry to hear that others are going through the same heartbreaking issues that we are---but just know that there are others out there who understand<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

cfmombeth

Guest
My son John age 8 was just diagnosed a few weeks ago..I agree it is like getting the diagnosis all over again. Everytime I think I am coming to grips with his situation something like this seems to come up and forces me to face issues I would rather not think about. He is the first person in our family and it is hard not knowing what to expect...and people who aren't in our shoes just don't understand. Heck somedays I'm not sure I understand yet. John was only diagnosed 22 months ago <img src="i/expressions/face-icon-small-sad.gif" border="0"> so we are still adjusting to the overwhelming nature of this condition.

I have a question for those of you experienced with Tobi---John seems to be alittle hyper and won't stop talking (MOTOR MOUTH)--is this a NORMAL side effect??? Does it calm down???? Thanks for the input.

I am sorry to hear that others are going through the same heartbreaking issues that we are---but just know that there are others out there who understand<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
C

cfmombeth

Guest
My son John age 8 was just diagnosed a few weeks ago..I agree it is like getting the diagnosis all over again. Everytime I think I am coming to grips with his situation something like this seems to come up and forces me to face issues I would rather not think about. He is the first person in our family and it is hard not knowing what to expect...and people who aren't in our shoes just don't understand. Heck somedays I'm not sure I understand yet. John was only diagnosed 22 months ago <img src="i/expressions/face-icon-small-sad.gif" border="0"> so we are still adjusting to the overwhelming nature of this condition.
<br />
<br />I have a question for those of you experienced with Tobi---John seems to be alittle hyper and won't stop talking (MOTOR MOUTH)--is this a NORMAL side effect??? Does it calm down???? Thanks for the input.
<br />
<br />I am sorry to hear that others are going through the same heartbreaking issues that we are---but just know that there are others out there who understand<img src="i/expressions/face-icon-small-smile.gif" border="0">
 
B

bet10

New member
Thanks everyone for your positive feedback and for the order of nebs! Knowing that everything will be okay and it is just another bump in this long road is reassuring. You keep me sane and have given me back the spring in my step today.

BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!

Happy Halloween to everyone!
 
B

bet10

New member
Thanks everyone for your positive feedback and for the order of nebs! Knowing that everything will be okay and it is just another bump in this long road is reassuring. You keep me sane and have given me back the spring in my step today.

BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!

Happy Halloween to everyone!
 
B

bet10

New member
Thanks everyone for your positive feedback and for the order of nebs! Knowing that everything will be okay and it is just another bump in this long road is reassuring. You keep me sane and have given me back the spring in my step today.

BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!

Happy Halloween to everyone!
 
B

bet10

New member
Thanks everyone for your positive feedback and for the order of nebs! Knowing that everything will be okay and it is just another bump in this long road is reassuring. You keep me sane and have given me back the spring in my step today.

BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!

Happy Halloween to everyone!
 
B

bet10

New member
Thanks everyone for your positive feedback and for the order of nebs! Knowing that everything will be okay and it is just another bump in this long road is reassuring. You keep me sane and have given me back the spring in my step today.
<br />
<br />BTW - we can't start the TOBI yet because no pharmacies seem to be able to locate it. The hospital pharmacy has assured me they will get it in tomorrow. So frustrating, I just want to get on with it!
<br />
<br />Happy Halloween to everyone!
 
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