Cultured Pseudamonas... what to expect???

M

Mommy2Zeke

Guest
My son is 19 months old, non-symptomatic and cultured Pseudamonas- moderate/non-mucoid for the second time. This is our first time for him to culture anything big and we did a round of Cipro and Tobi for a month but then stopped for 2. Did a re-culture last week and he's still growing it. Is there any hope of kicking it with Cipro and Tobi?

They have prescribed a month of Cipro and 3 months of Tobi with a re-culture every 6 weeks... is this sufficient?

I'm scared and really unsure what to expect from here on out. Is it possible he could go years with Pseudamonas and be non-symptomatic?
 
M

Mommy2Zeke

Guest
My son is 19 months old, non-symptomatic and cultured Pseudamonas- moderate/non-mucoid for the second time. This is our first time for him to culture anything big and we did a round of Cipro and Tobi for a month but then stopped for 2. Did a re-culture last week and he's still growing it. Is there any hope of kicking it with Cipro and Tobi?

They have prescribed a month of Cipro and 3 months of Tobi with a re-culture every 6 weeks... is this sufficient?

I'm scared and really unsure what to expect from here on out. Is it possible he could go years with Pseudamonas and be non-symptomatic?
 
M

Mommy2Zeke

Guest
My son is 19 months old, non-symptomatic and cultured Pseudamonas- moderate/non-mucoid for the second time. This is our first time for him to culture anything big and we did a round of Cipro and Tobi for a month but then stopped for 2. Did a re-culture last week and he's still growing it. Is there any hope of kicking it with Cipro and Tobi?
<br />
<br />They have prescribed a month of Cipro and 3 months of Tobi with a re-culture every 6 weeks... is this sufficient?
<br />
<br />I'm scared and really unsure what to expect from here on out. Is it possible he could go years with Pseudamonas and be non-symptomatic?
<br />
 
H

hmw

New member
When it comes to your question of whether or not the recommended treatment plan is sufficient~ my guess would be that the 3mo of Tobi that they've rx'ed is kind of the plan 'for now' and if he's still culturing PA at the end of 3mo they will keep him on it; at that point switching to the typical one month on, one month off schedule. I'm not sure how the Cipro would be used at that point; I am guessing only during exacerbations.

I would be scared too if I were you. I'm so sorry that Zeke has cultured this for the 2nd time and it hasn't gone away. However, I am very glad that he's non-symptomatic to date~ hopefully this means it was caught early and even if it can't be completely eradicated, it can be kept under good control with treatment and he can indeed remain asymptomatic for a long time. I'm sure you'll get input from others who have been through this for a long time already.

Wishing the very best for Zeke! <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
When it comes to your question of whether or not the recommended treatment plan is sufficient~ my guess would be that the 3mo of Tobi that they've rx'ed is kind of the plan 'for now' and if he's still culturing PA at the end of 3mo they will keep him on it; at that point switching to the typical one month on, one month off schedule. I'm not sure how the Cipro would be used at that point; I am guessing only during exacerbations.

I would be scared too if I were you. I'm so sorry that Zeke has cultured this for the 2nd time and it hasn't gone away. However, I am very glad that he's non-symptomatic to date~ hopefully this means it was caught early and even if it can't be completely eradicated, it can be kept under good control with treatment and he can indeed remain asymptomatic for a long time. I'm sure you'll get input from others who have been through this for a long time already.

Wishing the very best for Zeke! <img src="i/expressions/rose.gif" border="0">
 
H

hmw

New member
When it comes to your question of whether or not the recommended treatment plan is sufficient~ my guess would be that the 3mo of Tobi that they've rx'ed is kind of the plan 'for now' and if he's still culturing PA at the end of 3mo they will keep him on it; at that point switching to the typical one month on, one month off schedule. I'm not sure how the Cipro would be used at that point; I am guessing only during exacerbations.
<br />
<br />I would be scared too if I were you. I'm so sorry that Zeke has cultured this for the 2nd time and it hasn't gone away. However, I am very glad that he's non-symptomatic to date~ hopefully this means it was caught early and even if it can't be completely eradicated, it can be kept under good control with treatment and he can indeed remain asymptomatic for a long time. I'm sure you'll get input from others who have been through this for a long time already.
<br />
<br />Wishing the very best for Zeke! <img src="i/expressions/rose.gif" border="0">
 
R

Ratatosk

Administrator
Staff member
When DS first cultured pseudo, he was put on tobi every other month and we were told he'd be on it for at least 6 months and he'd need to have two clear cultures. He had no symptoms at the time. He wasn't put on cipro until he had an exacerbation. DS rarely has symptoms -- really only a stuffy nose from time to time ----so when he does culture something, it's a sucker punch.

Talking to other parents, different clinics handle this quiet differently. Some patients are put on it as a maintenance medication. Another person told me their clinic puts them on one course of tobi and cipro and that's it.
 
R

Ratatosk

Administrator
Staff member
When DS first cultured pseudo, he was put on tobi every other month and we were told he'd be on it for at least 6 months and he'd need to have two clear cultures. He had no symptoms at the time. He wasn't put on cipro until he had an exacerbation. DS rarely has symptoms -- really only a stuffy nose from time to time ----so when he does culture something, it's a sucker punch.

Talking to other parents, different clinics handle this quiet differently. Some patients are put on it as a maintenance medication. Another person told me their clinic puts them on one course of tobi and cipro and that's it.
 
R

Ratatosk

Administrator
Staff member
When DS first cultured pseudo, he was put on tobi every other month and we were told he'd be on it for at least 6 months and he'd need to have two clear cultures. He had no symptoms at the time. He wasn't put on cipro until he had an exacerbation. DS rarely has symptoms -- really only a stuffy nose from time to time ----so when he does culture something, it's a sucker punch.
<br />
<br />Talking to other parents, different clinics handle this quiet differently. Some patients are put on it as a maintenance medication. Another person told me their clinic puts them on one course of tobi and cipro and that's it.
 
M

Mommy2Zeke

Guest
It's my understanding that we will start with the three months of Tobi, one month of Cipro, then if he's still culturing it after three months of Tobi, we'll go to the standard one month on- one month off.
 
M

Mommy2Zeke

Guest
It's my understanding that we will start with the three months of Tobi, one month of Cipro, then if he's still culturing it after three months of Tobi, we'll go to the standard one month on- one month off.
 
M

Mommy2Zeke

Guest
It's my understanding that we will start with the three months of Tobi, one month of Cipro, then if he's still culturing it after three months of Tobi, we'll go to the standard one month on- one month off.
 
M

MDad

New member
Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.

Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.

and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.
 
M

MDad

New member
Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.

Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.

and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.
 
M

MDad

New member
Hi,in a similar situation with pseudomonas in a young baby.Looking for any parent with experience of Tobi in a very young child (13 mths) Need help with tips on successfully getting the nebs done without trauma for all concerned.
<br />
<br />Also confused by dosage. Hospital and pharmacist gave conflicting information.I will clarify it with them but just wanted some comparisons for peace of mind.
<br />
<br />and while I'm asking, we don't have the vest so all physio done by hand.She does not tolerate it very well. Any ideas what to do ? She's not at a stage yet where things like TV or DVDs would distract her.
 
P

pipersmom

New member
Jen- There are different schools of thought on whether pseudo can be kicked or not. Some think that once you've cultured it 2x, even if another culture is clear, it's still there, just not showing up on the cultures. Others think you can get rid of it. Piper was culturing it at diagnosis (4 months old), and cultured it until she was 4 or so. In those 4 yrs, she had around 4 hospitalizations. Not great, but not horrible. I'd like to think it's gone, but we've continued doing TOBI, etc. I would say what they're doing with the TOBI and Cipro is pretty typical as long as he's asymptomatic. I know it's hard, but try not to let it get you too worried. *hug*
 
P

pipersmom

New member
Jen- There are different schools of thought on whether pseudo can be kicked or not. Some think that once you've cultured it 2x, even if another culture is clear, it's still there, just not showing up on the cultures. Others think you can get rid of it. Piper was culturing it at diagnosis (4 months old), and cultured it until she was 4 or so. In those 4 yrs, she had around 4 hospitalizations. Not great, but not horrible. I'd like to think it's gone, but we've continued doing TOBI, etc. I would say what they're doing with the TOBI and Cipro is pretty typical as long as he's asymptomatic. I know it's hard, but try not to let it get you too worried. *hug*
 
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