pseudomonas

[zoeg]

Feeling so sad... My five year old daughter just cultured pseudomonas in a throat culture at clinic last week.  We were prescribed 2 weeks of Cipro and then 28 days TOBI.  Walgreens can't even get the TOBI until tomorrow so I am anxious that we are missing time!  
Is the at home method what most drs. prescribe?  I'm grateful not to have to go to the hospital, but I am scared we won't get rid of this bug.  The nurse told me it is not resistant to bacteria (whatever that means but she said it is good) and that it did not look like there were many of them there (again, not totally sure but she made it sound promising). 
Has anyone had good experience getting rid of this?  She has been so healthy for all her life and this just brings the reality of CF to our home and I am just so sad for her. 
Another question- do you give Cipro at the same time as vitamins or do you have to space them out?  Sorry for all the questions.  I am so stressed and upset and I guess just need a little encouragement here!
Zoe mom to Kate wCF

 

[zoeg]

Feeling so sad... My five year old daughter just cultured pseudomonas in a throat culture at clinic last week. We were prescribed 2 weeks of Cipro and then 28 days TOBI. Walgreens can't even get the TOBI until tomorrow so I am anxious that we are missing time!
Is the at home method what most drs. prescribe? I'm grateful not to have to go to the hospital, but I am scared we won't get rid of this bug. The nurse told me it is not resistant to bacteria (whatever that means but she said it is good) and that it did not look like there were many of them there (again, not totally sure but she made it sound promising).
Has anyone had good experience getting rid of this? She has been so healthy for all her life and this just brings the reality of CF to our home and I am just so sad for her.
Another question- do you give Cipro at the same time as vitamins or do you have to space them out? Sorry for all the questions. I am so stressed and upset and I guess just need a little encouragement here!
Zoe mom to Kate wCF

 

[zoeg]

<p>Feeling so sad... My five year old daughter just cultured pseudomonas in a throat culture at clinic last week. We were prescribed 2 weeks of Cipro and then 28 days TOBI. Walgreens can't even get the TOBI until tomorrow so I am anxious that we are missing time!
<p>Is the at home method what most drs. prescribe? I'm grateful not to have to go to the hospital, but I am scared we won't get rid of this bug. The nurse told me it is not resistant to bacteria (whatever that means but she said it is good) and that it did not look like there were many of them there (again, not totally sure but she made it sound promising).
<p>Has anyone had good experience getting rid of this? She has been so healthy for all her life and this just brings the reality of CF to our home and I am just so sad for her.
<p>Another question- do you give Cipro at the same time as vitamins or do you have to space them out? Sorry for all the questions. I am so stressed and upset and I guess just need a little encouragement here!
<p>Zoe mom to Kate wCF

 

[kitomd21]

We've been to two CF centers...both have told us that DD will be admitted for IVs when she cultures PA. There are differing protocols...not sure which is correct. The justification for IVs is the hope that it can be eradicated (or at least, colonization slowed). As much as I don't want her admitted if she seems to be doing well, I think it's the most logical on our end. After that time, I believe her doctor will try TOBI and admits as needed..my thoughts and prayers are with you!!

 

[kitomd21]

We've been to two CF centers...both have told us that DD will be admitted for IVs when she cultures PA. There are differing protocols...not sure which is correct. The justification for IVs is the hope that it can be eradicated (or at least, colonization slowed). As much as I don't want her admitted if she seems to be doing well, I think it's the most logical on our end. After that time, I believe her doctor will try TOBI and admits as needed..my thoughts and prayers are with you!!

 

[kitomd21]

We've been to two CF centers...both have told us that DD will be admitted for IVs when she cultures PA. There are differing protocols...not sure which is correct. The justification for IVs is the hope that it can be eradicated (or at least, colonization slowed). As much as I don't want her admitted if she seems to be doing well, I think it's the most logical on our end. After that time, I believe her doctor will try TOBI and admits as needed..my thoughts and prayers are with you!!

 

[ymikhale]

my dd (3.5 y/o) cultured if twice. It was like what you described: low count and sensitive to everything. We eeradicated it w/TOBI and Cipro. It was gone after the first round of TOBI each time. The important thing is to have CIPRO and TOBI at the same time, not one after the other (at least that is the most common protocol is).
I know it is a big blow, i cried both times when it happened.
be strong, will be praying for you

 

[ymikhale]

my dd (3.5 y/o) cultured if twice. It was like what you described: low count and sensitive to everything. We eeradicated it w/TOBI and Cipro. It was gone after the first round of TOBI each time. The important thing is to have CIPRO and TOBI at the same time, not one after the other (at least that is the most common protocol is).
I know it is a big blow, i cried both times when it happened.
be strong, will be praying for you

 

[ymikhale]

my dd (3.5 y/o) cultured if twice. It was like what you described: low count and sensitive to everything. We eeradicated it w/TOBI and Cipro. It was gone after the first round of TOBI each time. The important thing is to have CIPRO and TOBI at the same time, not one after the other (at least that is the most common protocol is).
<br />I know it is a big blow, i cried both times when it happened.
<br />be strong, will be praying for you

 

[Rebjane]

My daughter cultured Pseudomaonas for the first time this winter, too.  She was treated with 2 weeks oral cipro and 28 inhaled TOBI.  We did reculture her after the TOBI and cipro and she only grew staph areus.  I asked lots of questions to our CF doc so if you are at all concerned write down your questions for the doc and ask away.  Our doc said if the pseudo was not gone after the TOBI and Cipro we could bring her in and do IV tobramycin.  FOrtunatley we did not have to do that.
 
And actually, the week before the end of her round of TOBI she ended up getting the flu and ended up on an additional 2 weeks of cipro.  
 
Anyway, hopefully this treatment will kick the pseudo's but.
 
As far as the vitamin; cipro does interact with lots of things including zinc and magnsium so I would give the CF vitamin at lunchtime to avoid interaction.
 
Hang in there, 

 

[Rebjane]

My daughter cultured Pseudomaonas for the first time this winter, too. She was treated with 2 weeks oral cipro and 28 inhaled TOBI. We did reculture her after the TOBI and cipro and she only grew staph areus. I asked lots of questions to our CF doc so if you are at all concerned write down your questions for the doc and ask away. Our doc said if the pseudo was not gone after the TOBI and Cipro we could bring her in and do IV tobramycin. FOrtunatley we did not have to do that.

And actually, the week before the end of her round of TOBI she ended up getting the flu and ended up on an additional 2 weeks of cipro.

Anyway, hopefully this treatment will kick the pseudo's but.

As far as the vitamin; cipro does interact with lots of things including zinc and magnsium so I would give the CF vitamin at lunchtime to avoid interaction.

Hang in there,

 

[Rebjane]

<p>My daughter cultured Pseudomaonas for the first time this winter, too. She was treated with 2 weeks oral cipro and 28 inhaled TOBI. We did reculture her after the TOBI and cipro and she only grew staph areus. I asked lots of questions to our CF doc so if you are at all concerned write down your questions for the doc and ask away. Our doc said if the pseudo was not gone after the TOBI and Cipro we could bring her in and do IV tobramycin. FOrtunatley we did not have to do that.
<p>
<p>And actually, the week before the end of her round of TOBI she ended up getting the flu and ended up on an additional 2 weeks of cipro.
<p>
<p>Anyway, hopefully this treatment will kick the pseudo's but.
<p>
<p>As far as the vitamin; cipro does interact with lots of things including zinc and magnsium so I would give the CF vitamin at lunchtime to avoid interaction.
<p>
<p>Hang in there,

 

[JennyCoulon]

My middle child Tucker, our youngest with CF cultured Pseudomonas back in November. I was very upset and sad b/c my oldest who is 11 has never cultured it. We did the Cipro and the TOBI for 28 days and then went back for a reculture 2 weeks after he finished them.
The new culture showed that the Cipro and TOBI didn't chase it away. We went into the hospital for 3 days just enough for them to get his dosage of the 2 IV antibotics set. He came home with a PICC line and we did the antibotics 2 times daily for 2 weeks. He continued his regular activities like going to school, we just had to put a sleeve over his PICC line so it didn't get caught on anything. He did stay in for recess just to be safe but he was able to pick one of his classmates to stay in with him and play. After he was done with both antibotics we went for a recheck and the Pseudomonas and the Staph that he had been growing (Staph that they really weren't going to treat unless he had other symptoms) were both gone.
I remember when I got the call that he had cultured Pseudomonas, I was at work and about fell on the floor. It is something that was a little tough for us has this was the first hospital stay for either of my children. The dr's understood that my husband and I both worked and that he couldn't miss 2 weeks from school to be stuck in the hospital for something we could do at home. Don't get discouraged just remember that even if the oral and aerosolized antibotics don't get rid of it there is always the IV antibotics and it really isn't as bad as I thought it would be. Keep your head up and keep us posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JennyCoulon]

My middle child Tucker, our youngest with CF cultured Pseudomonas back in November. I was very upset and sad b/c my oldest who is 11 has never cultured it. We did the Cipro and the TOBI for 28 days and then went back for a reculture 2 weeks after he finished them.
The new culture showed that the Cipro and TOBI didn't chase it away. We went into the hospital for 3 days just enough for them to get his dosage of the 2 IV antibotics set. He came home with a PICC line and we did the antibotics 2 times daily for 2 weeks. He continued his regular activities like going to school, we just had to put a sleeve over his PICC line so it didn't get caught on anything. He did stay in for recess just to be safe but he was able to pick one of his classmates to stay in with him and play. After he was done with both antibotics we went for a recheck and the Pseudomonas and the Staph that he had been growing (Staph that they really weren't going to treat unless he had other symptoms) were both gone.
I remember when I got the call that he had cultured Pseudomonas, I was at work and about fell on the floor. It is something that was a little tough for us has this was the first hospital stay for either of my children. The dr's understood that my husband and I both worked and that he couldn't miss 2 weeks from school to be stuck in the hospital for something we could do at home. Don't get discouraged just remember that even if the oral and aerosolized antibotics don't get rid of it there is always the IV antibotics and it really isn't as bad as I thought it would be. Keep your head up and keep us posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[JennyCoulon]

<p>My middle child Tucker, our youngest with CF cultured Pseudomonas back in November. I was very upset and sad b/c my oldest who is 11 has never cultured it. We did the Cipro and the TOBI for 28 days and then went back for a reculture 2 weeks after he finished them.
<p>The new culture showed that the Cipro and TOBI didn't chase it away. We went into the hospital for 3 days just enough for them to get his dosage of the 2 IV antibotics set. He came home with a PICC line and we did the antibotics 2 times daily for 2 weeks. He continued his regular activities like going to school, we just had to put a sleeve over his PICC line so it didn't get caught on anything. He did stay in for recess just to be safe but he was able to pick one of his classmates to stay in with him and play. After he was done with both antibotics we went for a recheck and the Pseudomonas and the Staph that he had been growing (Staph that they really weren't going to treat unless he had other symptoms) were both gone.
<p>I remember when I got the call that he had cultured Pseudomonas, I was at work and about fell on the floor. It is something that was a little tough for us has this was the first hospital stay for either of my children. The dr's understood that my husband and I both worked and that he couldn't miss 2 weeks from school to be stuck in the hospital for something we could do at home. Don't get discouraged just remember that even if the oral and aerosolized antibotics don't get rid of it there is always the IV antibotics and it really isn't as bad as I thought it would be. Keep your head up and keep us posted. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[dragonlady]

My daughter cultured PA back in 2006 and MRSA back in 2005.  We do Tobramycin every other month and we have not cultured it since *knock on wood*  The only thing she cultured last clinic appointment was staph.

 

[dragonlady]

My daughter cultured PA back in 2006 and MRSA back in 2005. We do Tobramycin every other month and we have not cultured it since *knock on wood* The only thing she cultured last clinic appointment was staph.

 

[dragonlady]

<p>My daughter cultured PA back in 2006 and MRSA back in 2005. We do Tobramycin every other month and we have not cultured it since *knock on wood* The only thing she cultured last clinic appointment was staph.