Okay, almost in tears-frustrated

[BabyBeauty]

My daughter has cultured psuedomonas twice. We go in June 8th for a throat culture. It was my understanding we would go into the hospital if she cultures again. My dr says there is no proof that IV treatment would get rid of it. I feel like he is telling us not to do the hospital and just be considered colonized. Isn't colonization bad? Wouldn't he want to at least try to get rid of it another way? I am CONFUSED!!!

 

[BabyBeauty]

My daughter has cultured psuedomonas twice. We go in June 8th for a throat culture. It was my understanding we would go into the hospital if she cultures again. My dr says there is no proof that IV treatment would get rid of it. I feel like he is telling us not to do the hospital and just be considered colonized. Isn't colonization bad? Wouldn't he want to at least try to get rid of it another way? I am CONFUSED!!!

 

[BabyBeauty]

My daughter has cultured psuedomonas twice. We go in June 8th for a throat culture. It was my understanding we would go into the hospital if she cultures again. My dr says there is no proof that IV treatment would get rid of it. I feel like he is telling us not to do the hospital and just be considered colonized. Isn't colonization bad? Wouldn't he want to at least try to get rid of it another way? I am CONFUSED!!!

 

[jpetersen]

I'm 31 and have had pseudomonas my whole life. There is no guarantee that it will ever get eradicated. Just being in the hospital or clinc is a risk of getting it or getting a worse form. Perhaps ask about home IVs to rid it. Tobramyacin and another antibiotic in conjunction just might do it, so it's worth asking about - but I'd avoid the hospital.

 

[jpetersen]

I'm 31 and have had pseudomonas my whole life. There is no guarantee that it will ever get eradicated. Just being in the hospital or clinc is a risk of getting it or getting a worse form. Perhaps ask about home IVs to rid it. Tobramyacin and another antibiotic in conjunction just might do it, so it's worth asking about - but I'd avoid the hospital.

 

[jpetersen]

I'm 31 and have had pseudomonas my whole life. There is no guarantee that it will ever get eradicated. Just being in the hospital or clinc is a risk of getting it or getting a worse form. Perhaps ask about home IVs to rid it. Tobramyacin and another antibiotic in conjunction just might do it, so it's worth asking about - but I'd avoid the hospital.

 

[Rebjane]

My daughter has not yet cultured pseudomonas however, she has cultured MRSA since she was 2 1/2 years old. I just thought I would offer some support. Before the MRSA culture, my daughter had cultured normal flora. I was devastated when I got the call; truly cried, screamed.

She did need eventually to go in for IV's that year after a particularly bad exacerbation. She is colonized with MRSA. Her counts tend to be low, sometimes it doesn't show up but we always assume it is there. Still with our vigilent care she has done well.

She is 7 1/2, in first grade and has not been admitted to the hospital since she was 2 1/2. Her PFT's tend to be above 100%. It is WORK.

I am also of the philosophy to avoid admitting to the hospital; to avoid picking up something else. Though, she is your daughter and you are looking out or her best interests. You know her best...Does she have any symptoms? Cough etc?

 

[Rebjane]

My daughter has not yet cultured pseudomonas however, she has cultured MRSA since she was 2 1/2 years old. I just thought I would offer some support. Before the MRSA culture, my daughter had cultured normal flora. I was devastated when I got the call; truly cried, screamed.

She did need eventually to go in for IV's that year after a particularly bad exacerbation. She is colonized with MRSA. Her counts tend to be low, sometimes it doesn't show up but we always assume it is there. Still with our vigilent care she has done well.

She is 7 1/2, in first grade and has not been admitted to the hospital since she was 2 1/2. Her PFT's tend to be above 100%. It is WORK.

I am also of the philosophy to avoid admitting to the hospital; to avoid picking up something else. Though, she is your daughter and you are looking out or her best interests. You know her best...Does she have any symptoms? Cough etc?

 

[Rebjane]

My daughter has not yet cultured pseudomonas however, she has cultured MRSA since she was 2 1/2 years old. I just thought I would offer some support. Before the MRSA culture, my daughter had cultured normal flora. I was devastated when I got the call; truly cried, screamed.
<br />
<br />She did need eventually to go in for IV's that year after a particularly bad exacerbation. She is colonized with MRSA. Her counts tend to be low, sometimes it doesn't show up but we always assume it is there. Still with our vigilent care she has done well.
<br />
<br />She is 7 1/2, in first grade and has not been admitted to the hospital since she was 2 1/2. Her PFT's tend to be above 100%. It is WORK.
<br />
<br />I am also of the philosophy to avoid admitting to the hospital; to avoid picking up something else. Though, she is your daughter and you are looking out or her best interests. You know her best...Does she have any symptoms? Cough etc?

 

[ktsmom]

I would ask a few more questions. Is it mucoid or non-mucoid? What has the treatment been so far? When my daughter cultured PA, it was non-mucoid and my recollectoin is that we did TOBI for 6 months straight and also Cipro. And TOBI 28 on/off since.

Just based on your post it seems like your doc is resigned to her culturing PA, kinda like "that's what people with CF do". And although it is true that you may never eradicate it, I would strongly encourage you to get more info. I agree with Jesse, ask about home IVs and try to avoid the hospital!

 

[ktsmom]

I would ask a few more questions. Is it mucoid or non-mucoid? What has the treatment been so far? When my daughter cultured PA, it was non-mucoid and my recollectoin is that we did TOBI for 6 months straight and also Cipro. And TOBI 28 on/off since.

Just based on your post it seems like your doc is resigned to her culturing PA, kinda like "that's what people with CF do". And although it is true that you may never eradicate it, I would strongly encourage you to get more info. I agree with Jesse, ask about home IVs and try to avoid the hospital!

 

[ktsmom]

I would ask a few more questions. Is it mucoid or non-mucoid? What has the treatment been so far? When my daughter cultured PA, it was non-mucoid and my recollectoin is that we did TOBI for 6 months straight and also Cipro. And TOBI 28 on/off since.
<br />
<br />Just based on your post it seems like your doc is resigned to her culturing PA, kinda like "that's what people with CF do". And although it is true that you may never eradicate it, I would strongly encourage you to get more info. I agree with Jesse, ask about home IVs and try to avoid the hospital!

 

[BaylorCrew07]

I wouldn't rush to the hospital either; I try to avoid it if possible to keep from getting infections there.

I've had psuedo for as long as I can remember (over 5 years; I was dx late) and have never been on IV's. Even if your daughter has colonized psuedo, it's not the worst bug to get, and it IS very common. That said, still be aggressive with treatments, vest, etc!

I haven't cultured psuedo in over 2 years, but I doubt it's completely gone - I'm assuming it's still in there somewhere, but who knows. TOBI or Cayston should be standard treatment for it, the only reason you would need IV's/hospital is if she is having an exacerbation or something. Has she had any change of symptoms, or just cultured it w/ no change of symptoms?

Hopefully the next culture is clear and you can rest easy, but if not, you will find a lot of support and good info here

 

[BaylorCrew07]

I wouldn't rush to the hospital either; I try to avoid it if possible to keep from getting infections there.

I've had psuedo for as long as I can remember (over 5 years; I was dx late) and have never been on IV's. Even if your daughter has colonized psuedo, it's not the worst bug to get, and it IS very common. That said, still be aggressive with treatments, vest, etc!

I haven't cultured psuedo in over 2 years, but I doubt it's completely gone - I'm assuming it's still in there somewhere, but who knows. TOBI or Cayston should be standard treatment for it, the only reason you would need IV's/hospital is if she is having an exacerbation or something. Has she had any change of symptoms, or just cultured it w/ no change of symptoms?

Hopefully the next culture is clear and you can rest easy, but if not, you will find a lot of support and good info here

 

[BaylorCrew07]

I wouldn't rush to the hospital either; I try to avoid it if possible to keep from getting infections there.
<br />
<br />I've had psuedo for as long as I can remember (over 5 years; I was dx late) and have never been on IV's. Even if your daughter has colonized psuedo, it's not the worst bug to get, and it IS very common. That said, still be aggressive with treatments, vest, etc!
<br />
<br />I haven't cultured psuedo in over 2 years, but I doubt it's completely gone - I'm assuming it's still in there somewhere, but who knows. TOBI or Cayston should be standard treatment for it, the only reason you would need IV's/hospital is if she is having an exacerbation or something. Has she had any change of symptoms, or just cultured it w/ no change of symptoms?
<br />
<br />Hopefully the next culture is clear and you can rest easy, but if not, you will find a lot of support and good info here

 

[Ratatosk]

DS first cultured nonmucoid pseudo when he was 3 months old. And it was a shock. And each time he's cultured it -- most of the time NO symptoms whatsoever -- it does worry me. He's pretty much been on tobi every other month since -- forever... You're not alone in your concerns, but you can't let the what-if and worries rule your life.

If she's happy, healthy and a busy little girl just enjoy her! I know, easier said than done. We all worry. When I get overwhelmed and in a panic I try to focus on the good times -- something funny ds has done or something amazing that he's done that makes me proud. It helps to break that cycle of worry where my mind just races. <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I agree with avoiding the germy hospital if at all possible.

 

[Ratatosk]

DS first cultured nonmucoid pseudo when he was 3 months old. And it was a shock. And each time he's cultured it -- most of the time NO symptoms whatsoever -- it does worry me. He's pretty much been on tobi every other month since -- forever... You're not alone in your concerns, but you can't let the what-if and worries rule your life.

If she's happy, healthy and a busy little girl just enjoy her! I know, easier said than done. We all worry. When I get overwhelmed and in a panic I try to focus on the good times -- something funny ds has done or something amazing that he's done that makes me proud. It helps to break that cycle of worry where my mind just races. <img src="i/expressions/face-icon-small-smile.gif" border="0">

And I agree with avoiding the germy hospital if at all possible.

 

[Ratatosk]

DS first cultured nonmucoid pseudo when he was 3 months old. And it was a shock. And each time he's cultured it -- most of the time NO symptoms whatsoever -- it does worry me. He's pretty much been on tobi every other month since -- forever... You're not alone in your concerns, but you can't let the what-if and worries rule your life.
<br />
<br />If she's happy, healthy and a busy little girl just enjoy her! I know, easier said than done. We all worry. When I get overwhelmed and in a panic I try to focus on the good times -- something funny ds has done or something amazing that he's done that makes me proud. It helps to break that cycle of worry where my mind just races. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />And I agree with avoiding the germy hospital if at all possible.

 

[BabyBeauty]

Okay I am feeling better about this. I guess I misunderstood that if you have psuedo then you go straight to the hospital and there were no questions. I didn't realized you could keep on TOBI or do home IV's. We are learning as we go....

Thank God for this site! I don't know what I would do without my second opinions!!!!

 

[BabyBeauty]

Okay I am feeling better about this. I guess I misunderstood that if you have psuedo then you go straight to the hospital and there were no questions. I didn't realized you could keep on TOBI or do home IV's. We are learning as we go....

Thank God for this site! I don't know what I would do without my second opinions!!!!