Just cultured Nonmucoid pseudo for the first time

[LisaGreene]

Hi Natalie and all,
We went through this with Jacob at 19 mos of age (he's now 11). I felt so devastated- just like you feel. Back then they only gave us Cipro (was Tobi even out yet??) and the pseud went away for a long, long time. Now, at 11, he has cultured it on and off enough that they consider him "chronically culturing" it so he does Tobi on/ Tobi off every 30 days (no cipro). And, he is doing really great in the big picture! You would never know he has CF- very active, healthy and cute (I have to add ).

So here is my message to all of you- it does not mean it's the beginning of the end (that was my fear). Yes, it's a bummer but there are good drugs now to treat it and more on the way. Stay positive, hopeful and compliant to the medical regime and you will greatly increase the odds that all will work out well.

Hang in there- chronic grief is a normal part of CF. Honor your feelings for a time but don't get stuck there forever.
Get support and eat chocolate (ha ha!).

And, oddly enough, my daughter Kasey has never cultured it (but she does culture other things). So much for cross-contamination... go figure...

Hugs to you all,
Lisa G

 

[LisaGreene]

Hi Natalie and all,
We went through this with Jacob at 19 mos of age (he's now 11). I felt so devastated- just like you feel. Back then they only gave us Cipro (was Tobi even out yet??) and the pseud went away for a long, long time. Now, at 11, he has cultured it on and off enough that they consider him "chronically culturing" it so he does Tobi on/ Tobi off every 30 days (no cipro). And, he is doing really great in the big picture! You would never know he has CF- very active, healthy and cute (I have to add ).

So here is my message to all of you- it does not mean it's the beginning of the end (that was my fear). Yes, it's a bummer but there are good drugs now to treat it and more on the way. Stay positive, hopeful and compliant to the medical regime and you will greatly increase the odds that all will work out well.

Hang in there- chronic grief is a normal part of CF. Honor your feelings for a time but don't get stuck there forever.
Get support and eat chocolate (ha ha!).

And, oddly enough, my daughter Kasey has never cultured it (but she does culture other things). So much for cross-contamination... go figure...

Hugs to you all,
Lisa G

 

[LisaGreene]

Hi Natalie and all,
We went through this with Jacob at 19 mos of age (he's now 11). I felt so devastated- just like you feel. Back then they only gave us Cipro (was Tobi even out yet??) and the pseud went away for a long, long time. Now, at 11, he has cultured it on and off enough that they consider him "chronically culturing" it so he does Tobi on/ Tobi off every 30 days (no cipro). And, he is doing really great in the big picture! You would never know he has CF- very active, healthy and cute (I have to add ).

So here is my message to all of you- it does not mean it's the beginning of the end (that was my fear). Yes, it's a bummer but there are good drugs now to treat it and more on the way. Stay positive, hopeful and compliant to the medical regime and you will greatly increase the odds that all will work out well.

Hang in there- chronic grief is a normal part of CF. Honor your feelings for a time but don't get stuck there forever.
Get support and eat chocolate (ha ha!).

And, oddly enough, my daughter Kasey has never cultured it (but she does culture other things). So much for cross-contamination... go figure...

Hugs to you all,
Lisa G

 

[LisaGreene]

Hi Natalie and all,
We went through this with Jacob at 19 mos of age (he's now 11). I felt so devastated- just like you feel. Back then they only gave us Cipro (was Tobi even out yet??) and the pseud went away for a long, long time. Now, at 11, he has cultured it on and off enough that they consider him "chronically culturing" it so he does Tobi on/ Tobi off every 30 days (no cipro). And, he is doing really great in the big picture! You would never know he has CF- very active, healthy and cute (I have to add ).

So here is my message to all of you- it does not mean it's the beginning of the end (that was my fear). Yes, it's a bummer but there are good drugs now to treat it and more on the way. Stay positive, hopeful and compliant to the medical regime and you will greatly increase the odds that all will work out well.

Hang in there- chronic grief is a normal part of CF. Honor your feelings for a time but don't get stuck there forever.
Get support and eat chocolate (ha ha!).

And, oddly enough, my daughter Kasey has never cultured it (but she does culture other things). So much for cross-contamination... go figure...

Hugs to you all,
Lisa G

 

[LisaGreene]

Hi Natalie and all,
<br />We went through this with Jacob at 19 mos of age (he's now 11). I felt so devastated- just like you feel. Back then they only gave us Cipro (was Tobi even out yet??) and the pseud went away for a long, long time. Now, at 11, he has cultured it on and off enough that they consider him "chronically culturing" it so he does Tobi on/ Tobi off every 30 days (no cipro). And, he is doing really great in the big picture! You would never know he has CF- very active, healthy and cute (I have to add ).
<br />
<br />So here is my message to all of you- it does not mean it's the beginning of the end (that was my fear). Yes, it's a bummer but there are good drugs now to treat it and more on the way. Stay positive, hopeful and compliant to the medical regime and you will greatly increase the odds that all will work out well.
<br />
<br />Hang in there- chronic grief is a normal part of CF. Honor your feelings for a time but don't get stuck there forever.
<br />Get support and eat chocolate (ha ha!).
<br />
<br />And, oddly enough, my daughter Kasey has never cultured it (but she does culture other things). So much for cross-contamination... go figure...
<br />
<br />Hugs to you all,
<br />Lisa G
<br />

 

[ymikhale]

I know what you are going through. I was so upset when I learned that my 13 month old haf PA that I almost cried at the office! Luckily she only had very little of it (at least according to the culture), so it cleared after the first Tobi+ cipro cycle. Now we are finishing the last (3rd) Tobi cycle, and I feel really stressed as to when it is gonna pop up again.

So hang in there, you are not alone.

 

[ymikhale]

I know what you are going through. I was so upset when I learned that my 13 month old haf PA that I almost cried at the office! Luckily she only had very little of it (at least according to the culture), so it cleared after the first Tobi+ cipro cycle. Now we are finishing the last (3rd) Tobi cycle, and I feel really stressed as to when it is gonna pop up again.

So hang in there, you are not alone.

 

[ymikhale]

I know what you are going through. I was so upset when I learned that my 13 month old haf PA that I almost cried at the office! Luckily she only had very little of it (at least according to the culture), so it cleared after the first Tobi+ cipro cycle. Now we are finishing the last (3rd) Tobi cycle, and I feel really stressed as to when it is gonna pop up again.

So hang in there, you are not alone.

 

[ymikhale]

I know what you are going through. I was so upset when I learned that my 13 month old haf PA that I almost cried at the office! Luckily she only had very little of it (at least according to the culture), so it cleared after the first Tobi+ cipro cycle. Now we are finishing the last (3rd) Tobi cycle, and I feel really stressed as to when it is gonna pop up again.

So hang in there, you are not alone.

 

[ymikhale]

I know what you are going through. I was so upset when I learned that my 13 month old haf PA that I almost cried at the office! Luckily she only had very little of it (at least according to the culture), so it cleared after the first Tobi+ cipro cycle. Now we are finishing the last (3rd) Tobi cycle, and I feel really stressed as to when it is gonna pop up again.
<br />
<br />So hang in there, you are not alone.

 

[ashmomo]

I am sorry to hear that your little one cultured Pseudo. I am right there with you though! My baby girl is 6 months old this week and cultured Pseudo last month. She did 2 weeks of Bactrim and 28 days of Tobi. She had one culture in the middle of her tobi treatment month, not sure if it showed the Pseudo still or not. We go back this month and will get another culture off the Tobi. I hope it is gone!
My 4 year old cultured Pseudo when she was younger and did a month of Tobi and has not cultured it since. So it doesn't mean it is all going to go downhill from here. Hang in there! She has been relatively healthy when it comes to her lungs though. Our 6 mo old has stick mucous in her lungs already and I think that is what is causing her to catch things so easily.
According to my clinic CF doctor, the order of nebs we do is:

Albuterol
Saline/hyper sal
Chest PT
Pulmozyme
TOBI goes last

At least that is what we were told. I am sure there are many differences there from doctor to doctor. I hope it goes away and glad you finally got to start your Tobi. Hope this helped! PM me if you have any questions or just need to chat.

Brandi

 

[ashmomo]

I am sorry to hear that your little one cultured Pseudo. I am right there with you though! My baby girl is 6 months old this week and cultured Pseudo last month. She did 2 weeks of Bactrim and 28 days of Tobi. She had one culture in the middle of her tobi treatment month, not sure if it showed the Pseudo still or not. We go back this month and will get another culture off the Tobi. I hope it is gone!
My 4 year old cultured Pseudo when she was younger and did a month of Tobi and has not cultured it since. So it doesn't mean it is all going to go downhill from here. Hang in there! She has been relatively healthy when it comes to her lungs though. Our 6 mo old has stick mucous in her lungs already and I think that is what is causing her to catch things so easily.
According to my clinic CF doctor, the order of nebs we do is:

Albuterol
Saline/hyper sal
Chest PT
Pulmozyme
TOBI goes last

At least that is what we were told. I am sure there are many differences there from doctor to doctor. I hope it goes away and glad you finally got to start your Tobi. Hope this helped! PM me if you have any questions or just need to chat.

Brandi

 

[ashmomo]

I am sorry to hear that your little one cultured Pseudo. I am right there with you though! My baby girl is 6 months old this week and cultured Pseudo last month. She did 2 weeks of Bactrim and 28 days of Tobi. She had one culture in the middle of her tobi treatment month, not sure if it showed the Pseudo still or not. We go back this month and will get another culture off the Tobi. I hope it is gone!
My 4 year old cultured Pseudo when she was younger and did a month of Tobi and has not cultured it since. So it doesn't mean it is all going to go downhill from here. Hang in there! She has been relatively healthy when it comes to her lungs though. Our 6 mo old has stick mucous in her lungs already and I think that is what is causing her to catch things so easily.
According to my clinic CF doctor, the order of nebs we do is:

Albuterol
Saline/hyper sal
Chest PT
Pulmozyme
TOBI goes last

At least that is what we were told. I am sure there are many differences there from doctor to doctor. I hope it goes away and glad you finally got to start your Tobi. Hope this helped! PM me if you have any questions or just need to chat.

Brandi

 

[ashmomo]

I am sorry to hear that your little one cultured Pseudo. I am right there with you though! My baby girl is 6 months old this week and cultured Pseudo last month. She did 2 weeks of Bactrim and 28 days of Tobi. She had one culture in the middle of her tobi treatment month, not sure if it showed the Pseudo still or not. We go back this month and will get another culture off the Tobi. I hope it is gone!
My 4 year old cultured Pseudo when she was younger and did a month of Tobi and has not cultured it since. So it doesn't mean it is all going to go downhill from here. Hang in there! She has been relatively healthy when it comes to her lungs though. Our 6 mo old has stick mucous in her lungs already and I think that is what is causing her to catch things so easily.
According to my clinic CF doctor, the order of nebs we do is:

Albuterol
Saline/hyper sal
Chest PT
Pulmozyme
TOBI goes last

At least that is what we were told. I am sure there are many differences there from doctor to doctor. I hope it goes away and glad you finally got to start your Tobi. Hope this helped! PM me if you have any questions or just need to chat.

Brandi

 

[ashmomo]

I am sorry to hear that your little one cultured Pseudo. I am right there with you though! My baby girl is 6 months old this week and cultured Pseudo last month. She did 2 weeks of Bactrim and 28 days of Tobi. She had one culture in the middle of her tobi treatment month, not sure if it showed the Pseudo still or not. We go back this month and will get another culture off the Tobi. I hope it is gone!
<br />My 4 year old cultured Pseudo when she was younger and did a month of Tobi and has not cultured it since. So it doesn't mean it is all going to go downhill from here. Hang in there! She has been relatively healthy when it comes to her lungs though. Our 6 mo old has stick mucous in her lungs already and I think that is what is causing her to catch things so easily.
<br />According to my clinic CF doctor, the order of nebs we do is:
<br />
<br />Albuterol
<br />Saline/hyper sal
<br />Chest PT
<br />Pulmozyme
<br />TOBI goes last
<br />
<br />At least that is what we were told. I am sure there are many differences there from doctor to doctor. I hope it goes away and glad you finally got to start your Tobi. Hope this helped! PM me if you have any questions or just need to chat.
<br />
<br />Brandi

 

[bet10]

Thanks everyone for the positive and real advice, it really helped me get through the weekend, and now I am feeling so much more positive about everything. I would be lost without your support and advice and my husband thanks god you are all now part of our CF journey. We finally got the TOBI and Tom seems to be handling all the extra meds really well. As you all say, these kids are just amazingly strong!!

We cannot use CF Services anymore as they are not part of our insurances network any longer. However, I have left a message to see what we can do about this, yet another thing to sort out!!!

 

[bet10]

Thanks everyone for the positive and real advice, it really helped me get through the weekend, and now I am feeling so much more positive about everything. I would be lost without your support and advice and my husband thanks god you are all now part of our CF journey. We finally got the TOBI and Tom seems to be handling all the extra meds really well. As you all say, these kids are just amazingly strong!!

We cannot use CF Services anymore as they are not part of our insurances network any longer. However, I have left a message to see what we can do about this, yet another thing to sort out!!!

 

[bet10]

Thanks everyone for the positive and real advice, it really helped me get through the weekend, and now I am feeling so much more positive about everything. I would be lost without your support and advice and my husband thanks god you are all now part of our CF journey. We finally got the TOBI and Tom seems to be handling all the extra meds really well. As you all say, these kids are just amazingly strong!!

We cannot use CF Services anymore as they are not part of our insurances network any longer. However, I have left a message to see what we can do about this, yet another thing to sort out!!!

 

[bet10]

Thanks everyone for the positive and real advice, it really helped me get through the weekend, and now I am feeling so much more positive about everything. I would be lost without your support and advice and my husband thanks god you are all now part of our CF journey. We finally got the TOBI and Tom seems to be handling all the extra meds really well. As you all say, these kids are just amazingly strong!!

We cannot use CF Services anymore as they are not part of our insurances network any longer. However, I have left a message to see what we can do about this, yet another thing to sort out!!!

 

[bet10]

Thanks everyone for the positive and real advice, it really helped me get through the weekend, and now I am feeling so much more positive about everything. I would be lost without your support and advice and my husband thanks god you are all now part of our CF journey. We finally got the TOBI and Tom seems to be handling all the extra meds really well. As you all say, these kids are just amazingly strong!!
<br />
<br />We cannot use CF Services anymore as they are not part of our insurances network any longer. However, I have left a message to see what we can do about this, yet another thing to sort out!!!