update on Alexa

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nicole781

New member
Well, Alexa has been coughing for about a week, so we brought her back ot the clinic, and they decided to up her nebs to albuterol every 4 hours round the clock. I am exhausted, but i do see a huge difference so it's all worth it.
We also have her on oral antibiotics, so, i'm very happy that she's starting to get better.
The bad news, however, is that she's culturing PA and staph. We've started her on a round of Tobi, and the PA is non-mucoid. I'm really upset about this....she's only 6 months old!!!! How does this happen? She's home with me all day, and we barely go out. Her doc seems to be pretty upbeat that we'll be able to knock this out, but i'm still scared. does anyone else have experience with an infant with PA? I'm hoping that other people's stories will help me get through this.
 
N

nicole781

New member
Well, Alexa has been coughing for about a week, so we brought her back ot the clinic, and they decided to up her nebs to albuterol every 4 hours round the clock. I am exhausted, but i do see a huge difference so it's all worth it.
We also have her on oral antibiotics, so, i'm very happy that she's starting to get better.
The bad news, however, is that she's culturing PA and staph. We've started her on a round of Tobi, and the PA is non-mucoid. I'm really upset about this....she's only 6 months old!!!! How does this happen? She's home with me all day, and we barely go out. Her doc seems to be pretty upbeat that we'll be able to knock this out, but i'm still scared. does anyone else have experience with an infant with PA? I'm hoping that other people's stories will help me get through this.
 
N

nicole781

New member
Well, Alexa has been coughing for about a week, so we brought her back ot the clinic, and they decided to up her nebs to albuterol every 4 hours round the clock. I am exhausted, but i do see a huge difference so it's all worth it.
We also have her on oral antibiotics, so, i'm very happy that she's starting to get better.
The bad news, however, is that she's culturing PA and staph. We've started her on a round of Tobi, and the PA is non-mucoid. I'm really upset about this....she's only 6 months old!!!! How does this happen? She's home with me all day, and we barely go out. Her doc seems to be pretty upbeat that we'll be able to knock this out, but i'm still scared. does anyone else have experience with an infant with PA? I'm hoping that other people's stories will help me get through this.
 
N

nicole781

New member
Well, Alexa has been coughing for about a week, so we brought her back ot the clinic, and they decided to up her nebs to albuterol every 4 hours round the clock. I am exhausted, but i do see a huge difference so it's all worth it.
We also have her on oral antibiotics, so, i'm very happy that she's starting to get better.
The bad news, however, is that she's culturing PA and staph. We've started her on a round of Tobi, and the PA is non-mucoid. I'm really upset about this....she's only 6 months old!!!! How does this happen? She's home with me all day, and we barely go out. Her doc seems to be pretty upbeat that we'll be able to knock this out, but i'm still scared. does anyone else have experience with an infant with PA? I'm hoping that other people's stories will help me get through this.
 
N

nicole781

New member
Well, Alexa has been coughing for about a week, so we brought her back ot the clinic, and they decided to up her nebs to albuterol every 4 hours round the clock. I am exhausted, but i do see a huge difference so it's all worth it.
We also have her on oral antibiotics, so, i'm very happy that she's starting to get better.
The bad news, however, is that she's culturing PA and staph. We've started her on a round of Tobi, and the PA is non-mucoid. I'm really upset about this....she's only 6 months old!!!! How does this happen? She's home with me all day, and we barely go out. Her doc seems to be pretty upbeat that we'll be able to knock this out, but i'm still scared. does anyone else have experience with an infant with PA? I'm hoping that other people's stories will help me get through this.
 
A

Alyssa

New member
My daughter wasn't diagnosed until she was 14 years old, so what I have to say is not the same as having a very young child with PA and Staph - but wanted to let you know that yes, it does happen to others at 6 months and even younger, and yes some people do get rid of both PA and staph when treated aggressively. My daughter had repeat staph infections until age 14 without any treatment and she managed to clear them! After diagnosis she cultured MRSA (staph) and PA and was able to completely eradicate both of those with antibiotics and Tobi - neither bacteria has returned in 5 years now.

It sounds like you have an excellent doctor. Keep up the good work :)
 
A

Alyssa

New member
My daughter wasn't diagnosed until she was 14 years old, so what I have to say is not the same as having a very young child with PA and Staph - but wanted to let you know that yes, it does happen to others at 6 months and even younger, and yes some people do get rid of both PA and staph when treated aggressively. My daughter had repeat staph infections until age 14 without any treatment and she managed to clear them! After diagnosis she cultured MRSA (staph) and PA and was able to completely eradicate both of those with antibiotics and Tobi - neither bacteria has returned in 5 years now.

It sounds like you have an excellent doctor. Keep up the good work :)
 
A

Alyssa

New member
My daughter wasn't diagnosed until she was 14 years old, so what I have to say is not the same as having a very young child with PA and Staph - but wanted to let you know that yes, it does happen to others at 6 months and even younger, and yes some people do get rid of both PA and staph when treated aggressively. My daughter had repeat staph infections until age 14 without any treatment and she managed to clear them! After diagnosis she cultured MRSA (staph) and PA and was able to completely eradicate both of those with antibiotics and Tobi - neither bacteria has returned in 5 years now.

It sounds like you have an excellent doctor. Keep up the good work :)
 
A

Alyssa

New member
My daughter wasn't diagnosed until she was 14 years old, so what I have to say is not the same as having a very young child with PA and Staph - but wanted to let you know that yes, it does happen to others at 6 months and even younger, and yes some people do get rid of both PA and staph when treated aggressively. My daughter had repeat staph infections until age 14 without any treatment and she managed to clear them! After diagnosis she cultured MRSA (staph) and PA and was able to completely eradicate both of those with antibiotics and Tobi - neither bacteria has returned in 5 years now.

It sounds like you have an excellent doctor. Keep up the good work :)
 
A

Alyssa

New member
My daughter wasn't diagnosed until she was 14 years old, so what I have to say is not the same as having a very young child with PA and Staph - but wanted to let you know that yes, it does happen to others at 6 months and even younger, and yes some people do get rid of both PA and staph when treated aggressively. My daughter had repeat staph infections until age 14 without any treatment and she managed to clear them! After diagnosis she cultured MRSA (staph) and PA and was able to completely eradicate both of those with antibiotics and Tobi - neither bacteria has returned in 5 years now.

It sounds like you have an excellent doctor. Keep up the good work :)
 
M

Mommafirst

Guest
I know its discouraging. When my daughter was 7 months she cultured staph for the first time I was a mess. We got rid of the staph after an excerbation and IV antibiotics, only to have it return 5 months later. They are pretty sure she is already "chronically colonized" with it and unless it exacerbates they won't treat the staph.

Here's the thing Nicole, YOU DID NOTHING WRONG!!! Staph is EVERYWHERE. Its on our skin. Its on all surfaces no matter how much you clean them, it comes back. Avoiding it is impossible, but some people don't culture it because they don't. If they have CF and it goes it there lungs, they can culture it.

I believe PA is usually found in water. Again, its everywhere. My daughter hasn't cultured it yet, but I don't think its anything I've done -- its just where her CF is now. She could culture it tomorrow, and then again she might not for some time.

I agree with Alyssa (I usually do) it sounds like you have a great doctor and you are getting great care.
 
M

Mommafirst

Guest
I know its discouraging. When my daughter was 7 months she cultured staph for the first time I was a mess. We got rid of the staph after an excerbation and IV antibiotics, only to have it return 5 months later. They are pretty sure she is already "chronically colonized" with it and unless it exacerbates they won't treat the staph.

Here's the thing Nicole, YOU DID NOTHING WRONG!!! Staph is EVERYWHERE. Its on our skin. Its on all surfaces no matter how much you clean them, it comes back. Avoiding it is impossible, but some people don't culture it because they don't. If they have CF and it goes it there lungs, they can culture it.

I believe PA is usually found in water. Again, its everywhere. My daughter hasn't cultured it yet, but I don't think its anything I've done -- its just where her CF is now. She could culture it tomorrow, and then again she might not for some time.

I agree with Alyssa (I usually do) it sounds like you have a great doctor and you are getting great care.
 
M

Mommafirst

Guest
I know its discouraging. When my daughter was 7 months she cultured staph for the first time I was a mess. We got rid of the staph after an excerbation and IV antibiotics, only to have it return 5 months later. They are pretty sure she is already "chronically colonized" with it and unless it exacerbates they won't treat the staph.

Here's the thing Nicole, YOU DID NOTHING WRONG!!! Staph is EVERYWHERE. Its on our skin. Its on all surfaces no matter how much you clean them, it comes back. Avoiding it is impossible, but some people don't culture it because they don't. If they have CF and it goes it there lungs, they can culture it.

I believe PA is usually found in water. Again, its everywhere. My daughter hasn't cultured it yet, but I don't think its anything I've done -- its just where her CF is now. She could culture it tomorrow, and then again she might not for some time.

I agree with Alyssa (I usually do) it sounds like you have a great doctor and you are getting great care.
 
M

Mommafirst

Guest
I know its discouraging. When my daughter was 7 months she cultured staph for the first time I was a mess. We got rid of the staph after an excerbation and IV antibiotics, only to have it return 5 months later. They are pretty sure she is already "chronically colonized" with it and unless it exacerbates they won't treat the staph.

Here's the thing Nicole, YOU DID NOTHING WRONG!!! Staph is EVERYWHERE. Its on our skin. Its on all surfaces no matter how much you clean them, it comes back. Avoiding it is impossible, but some people don't culture it because they don't. If they have CF and it goes it there lungs, they can culture it.

I believe PA is usually found in water. Again, its everywhere. My daughter hasn't cultured it yet, but I don't think its anything I've done -- its just where her CF is now. She could culture it tomorrow, and then again she might not for some time.

I agree with Alyssa (I usually do) it sounds like you have a great doctor and you are getting great care.
 
M

Mommafirst

Guest
I know its discouraging. When my daughter was 7 months she cultured staph for the first time I was a mess. We got rid of the staph after an excerbation and IV antibiotics, only to have it return 5 months later. They are pretty sure she is already "chronically colonized" with it and unless it exacerbates they won't treat the staph.

Here's the thing Nicole, YOU DID NOTHING WRONG!!! Staph is EVERYWHERE. Its on our skin. Its on all surfaces no matter how much you clean them, it comes back. Avoiding it is impossible, but some people don't culture it because they don't. If they have CF and it goes it there lungs, they can culture it.

I believe PA is usually found in water. Again, its everywhere. My daughter hasn't cultured it yet, but I don't think its anything I've done -- its just where her CF is now. She could culture it tomorrow, and then again she might not for some time.

I agree with Alyssa (I usually do) it sounds like you have a great doctor and you are getting great care.
 
R

Ratatosk

Administrator
Staff member
DS cultured it at 3 months. I was still at home on maternity leave. Only places he'd been was the hospital, home and the clinic. It was devastating, because it really hit home that he actually had CF. Prior to that, we kept thinking in the back of our minds it was all just a big mistake. Perhaps a clerical error.

Have they taught you how to do CPT yet? We did albuterol/atrovent nebs since he was about a week old AND chest physiotherapy. We were told by his doctor that should he get a cold or wheezy, to "beat it out of him" <img src="i/expressions/face-icon-small-smile.gif" border="0">

DS has been on tobi since he was a baby; however, whenever he cultured non-mucoid pseudomonas A, it was always when we'd been to CF clinic. So we always wondered if there was an error at the lab, cross contamination...
 
R

Ratatosk

Administrator
Staff member
DS cultured it at 3 months. I was still at home on maternity leave. Only places he'd been was the hospital, home and the clinic. It was devastating, because it really hit home that he actually had CF. Prior to that, we kept thinking in the back of our minds it was all just a big mistake. Perhaps a clerical error.

Have they taught you how to do CPT yet? We did albuterol/atrovent nebs since he was about a week old AND chest physiotherapy. We were told by his doctor that should he get a cold or wheezy, to "beat it out of him" <img src="i/expressions/face-icon-small-smile.gif" border="0">

DS has been on tobi since he was a baby; however, whenever he cultured non-mucoid pseudomonas A, it was always when we'd been to CF clinic. So we always wondered if there was an error at the lab, cross contamination...
 
R

Ratatosk

Administrator
Staff member
DS cultured it at 3 months. I was still at home on maternity leave. Only places he'd been was the hospital, home and the clinic. It was devastating, because it really hit home that he actually had CF. Prior to that, we kept thinking in the back of our minds it was all just a big mistake. Perhaps a clerical error.

Have they taught you how to do CPT yet? We did albuterol/atrovent nebs since he was about a week old AND chest physiotherapy. We were told by his doctor that should he get a cold or wheezy, to "beat it out of him" <img src="i/expressions/face-icon-small-smile.gif" border="0">

DS has been on tobi since he was a baby; however, whenever he cultured non-mucoid pseudomonas A, it was always when we'd been to CF clinic. So we always wondered if there was an error at the lab, cross contamination...
 
R

Ratatosk

Administrator
Staff member
DS cultured it at 3 months. I was still at home on maternity leave. Only places he'd been was the hospital, home and the clinic. It was devastating, because it really hit home that he actually had CF. Prior to that, we kept thinking in the back of our minds it was all just a big mistake. Perhaps a clerical error.

Have they taught you how to do CPT yet? We did albuterol/atrovent nebs since he was about a week old AND chest physiotherapy. We were told by his doctor that should he get a cold or wheezy, to "beat it out of him" <img src="i/expressions/face-icon-small-smile.gif" border="0">

DS has been on tobi since he was a baby; however, whenever he cultured non-mucoid pseudomonas A, it was always when we'd been to CF clinic. So we always wondered if there was an error at the lab, cross contamination...
 
R

Ratatosk

Administrator
Staff member
DS cultured it at 3 months. I was still at home on maternity leave. Only places he'd been was the hospital, home and the clinic. It was devastating, because it really hit home that he actually had CF. Prior to that, we kept thinking in the back of our minds it was all just a big mistake. Perhaps a clerical error.

Have they taught you how to do CPT yet? We did albuterol/atrovent nebs since he was about a week old AND chest physiotherapy. We were told by his doctor that should he get a cold or wheezy, to "beat it out of him" <img src="i/expressions/face-icon-small-smile.gif" border="0">

DS has been on tobi since he was a baby; however, whenever he cultured non-mucoid pseudomonas A, it was always when we'd been to CF clinic. So we always wondered if there was an error at the lab, cross contamination...
 
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