Stenotrophomonas Maltophilia

[Ratatosk]

I know this has been asked about before... I just got a call from the local clinic to tell me that all of DS's labs were back and everything was fine. I always request a paper copy 'cuz in the past they've told me things are fine, only to read he's cultured H. Flu, pseudo A., or when he was an infant -- enterbactor cholae (sp)

So I asked if the cultures were clear. Yes, they were normal, but... Looks like he's cultured Stenotrophomonas Maltophilia, but the doctor said being that he doesn't have any symptoms he doesn't recommend any antibiotics or anything. Sigh... But he's culturing something -- yes, but it's rare and light.

I called the release of info department to see if they'd sent the reports out yet or if I could stop by and get a copy to fax to DS's primary CF/ID doctor in the city. So they faxed all the info to them and I'm waiting for a call back. I just get so annoyed with our local clinic being so stingy with letting us know the results of his labs, cultures, etc., -- I'm supposed to be placated by a phone call.

I did read some info online about Steno and looked at previous posts. Looks like it's a bug that isn't sensitive to drugs used to treat pseudo. Are there usually any symptoms? Last night DS was eating ice cream and I noticed he had a bit of a cough, just when he ate it. I hate waiting for calls back from the clinic...

 

[Ratatosk]

I know this has been asked about before... I just got a call from the local clinic to tell me that all of DS's labs were back and everything was fine. I always request a paper copy 'cuz in the past they've told me things are fine, only to read he's cultured H. Flu, pseudo A., or when he was an infant -- enterbactor cholae (sp)

So I asked if the cultures were clear. Yes, they were normal, but... Looks like he's cultured Stenotrophomonas Maltophilia, but the doctor said being that he doesn't have any symptoms he doesn't recommend any antibiotics or anything. Sigh... But he's culturing something -- yes, but it's rare and light.

I called the release of info department to see if they'd sent the reports out yet or if I could stop by and get a copy to fax to DS's primary CF/ID doctor in the city. So they faxed all the info to them and I'm waiting for a call back. I just get so annoyed with our local clinic being so stingy with letting us know the results of his labs, cultures, etc., -- I'm supposed to be placated by a phone call.

I did read some info online about Steno and looked at previous posts. Looks like it's a bug that isn't sensitive to drugs used to treat pseudo. Are there usually any symptoms? Last night DS was eating ice cream and I noticed he had a bit of a cough, just when he ate it. I hate waiting for calls back from the clinic...

 

[Ratatosk]

I know this has been asked about before... I just got a call from the local clinic to tell me that all of DS's labs were back and everything was fine. I always request a paper copy 'cuz in the past they've told me things are fine, only to read he's cultured H. Flu, pseudo A., or when he was an infant -- enterbactor cholae (sp)

So I asked if the cultures were clear. Yes, they were normal, but... Looks like he's cultured Stenotrophomonas Maltophilia, but the doctor said being that he doesn't have any symptoms he doesn't recommend any antibiotics or anything. Sigh... But he's culturing something -- yes, but it's rare and light.

I called the release of info department to see if they'd sent the reports out yet or if I could stop by and get a copy to fax to DS's primary CF/ID doctor in the city. So they faxed all the info to them and I'm waiting for a call back. I just get so annoyed with our local clinic being so stingy with letting us know the results of his labs, cultures, etc., -- I'm supposed to be placated by a phone call.

I did read some info online about Steno and looked at previous posts. Looks like it's a bug that isn't sensitive to drugs used to treat pseudo. Are there usually any symptoms? Last night DS was eating ice cream and I noticed he had a bit of a cough, just when he ate it. I hate waiting for calls back from the clinic...

 

[Ratatosk]

I know this has been asked about before... I just got a call from the local clinic to tell me that all of DS's labs were back and everything was fine. I always request a paper copy 'cuz in the past they've told me things are fine, only to read he's cultured H. Flu, pseudo A., or when he was an infant -- enterbactor cholae (sp)

So I asked if the cultures were clear. Yes, they were normal, but... Looks like he's cultured Stenotrophomonas Maltophilia, but the doctor said being that he doesn't have any symptoms he doesn't recommend any antibiotics or anything. Sigh... But he's culturing something -- yes, but it's rare and light.

I called the release of info department to see if they'd sent the reports out yet or if I could stop by and get a copy to fax to DS's primary CF/ID doctor in the city. So they faxed all the info to them and I'm waiting for a call back. I just get so annoyed with our local clinic being so stingy with letting us know the results of his labs, cultures, etc., -- I'm supposed to be placated by a phone call.

I did read some info online about Steno and looked at previous posts. Looks like it's a bug that isn't sensitive to drugs used to treat pseudo. Are there usually any symptoms? Last night DS was eating ice cream and I noticed he had a bit of a cough, just when he ate it. I hate waiting for calls back from the clinic...

 

[Ratatosk]

I know this has been asked about before... I just got a call from the local clinic to tell me that all of DS's labs were back and everything was fine. I always request a paper copy 'cuz in the past they've told me things are fine, only to read he's cultured H. Flu, pseudo A., or when he was an infant -- enterbactor cholae (sp)

So I asked if the cultures were clear. Yes, they were normal, but... Looks like he's cultured Stenotrophomonas Maltophilia, but the doctor said being that he doesn't have any symptoms he doesn't recommend any antibiotics or anything. Sigh... But he's culturing something -- yes, but it's rare and light.

I called the release of info department to see if they'd sent the reports out yet or if I could stop by and get a copy to fax to DS's primary CF/ID doctor in the city. So they faxed all the info to them and I'm waiting for a call back. I just get so annoyed with our local clinic being so stingy with letting us know the results of his labs, cultures, etc., -- I'm supposed to be placated by a phone call.

I did read some info online about Steno and looked at previous posts. Looks like it's a bug that isn't sensitive to drugs used to treat pseudo. Are there usually any symptoms? Last night DS was eating ice cream and I noticed he had a bit of a cough, just when he ate it. I hate waiting for calls back from the clinic...

 

[Ratatosk]

I know this has been asked about before... I just got a call from the local clinic to tell me that all of DS's labs were back and everything was fine. I always request a paper copy 'cuz in the past they've told me things are fine, only to read he's cultured H. Flu, pseudo A., or when he was an infant -- enterbactor cholae (sp)

So I asked if the cultures were clear. Yes, they were normal, but... Looks like he's cultured Stenotrophomonas Maltophilia, but the doctor said being that he doesn't have any symptoms he doesn't recommend any antibiotics or anything. Sigh... But he's culturing something -- yes, but it's rare and light.

I called the release of info department to see if they'd sent the reports out yet or if I could stop by and get a copy to fax to DS's primary CF/ID doctor in the city. So they faxed all the info to them and I'm waiting for a call back. I just get so annoyed with our local clinic being so stingy with letting us know the results of his labs, cultures, etc., -- I'm supposed to be placated by a phone call.

I did read some info online about Steno and looked at previous posts. Looks like it's a bug that isn't sensitive to drugs used to treat pseudo. Are there usually any symptoms? Last night DS was eating ice cream and I noticed he had a bit of a cough, just when he ate it. I hate waiting for calls back from the clinic...

 

[amber682]

Okay, first off, I'd be a little ticked if my son's clinic called and said his cultures were normal, only to find out he's actually culturing something new. Even if they're not going to do anyhting about it, you'd think they'd atleast let you know. If he just cultured it why don't they atleast try to get rid of it before it's settled in for good?

Vinny has been culturing steno since last August. It has shown up on every culture every two months since then. There's been a few times where he got this junky cough, with no other symptoms, that didn't go away after a few days on it's own. The doctor always calles in Bactrim and that gets rid of it. I always assumed it was the steno acting up, but he cultures staph just about every time too, so I'm not sure. One time only Bactrim didn't help and they called in Augmentin, which did help. But the time after that Bactrim worked again.

The good thing about steno is that they don't really think it causes problems like PA does, although Vin did need oral anti's a few times this year. The bad thing is it's more resistant to certain drugs (but you could still do combos, like Tobra and ceftaz). Vinny's doctors always tell me not to worry about it and that it may not even do much damage, but it still makes me uneasy.

 

[amber682]

Okay, first off, I'd be a little ticked if my son's clinic called and said his cultures were normal, only to find out he's actually culturing something new. Even if they're not going to do anyhting about it, you'd think they'd atleast let you know. If he just cultured it why don't they atleast try to get rid of it before it's settled in for good?

Vinny has been culturing steno since last August. It has shown up on every culture every two months since then. There's been a few times where he got this junky cough, with no other symptoms, that didn't go away after a few days on it's own. The doctor always calles in Bactrim and that gets rid of it. I always assumed it was the steno acting up, but he cultures staph just about every time too, so I'm not sure. One time only Bactrim didn't help and they called in Augmentin, which did help. But the time after that Bactrim worked again.

The good thing about steno is that they don't really think it causes problems like PA does, although Vin did need oral anti's a few times this year. The bad thing is it's more resistant to certain drugs (but you could still do combos, like Tobra and ceftaz). Vinny's doctors always tell me not to worry about it and that it may not even do much damage, but it still makes me uneasy.

 

[amber682]

Okay, first off, I'd be a little ticked if my son's clinic called and said his cultures were normal, only to find out he's actually culturing something new. Even if they're not going to do anyhting about it, you'd think they'd atleast let you know. If he just cultured it why don't they atleast try to get rid of it before it's settled in for good?

Vinny has been culturing steno since last August. It has shown up on every culture every two months since then. There's been a few times where he got this junky cough, with no other symptoms, that didn't go away after a few days on it's own. The doctor always calles in Bactrim and that gets rid of it. I always assumed it was the steno acting up, but he cultures staph just about every time too, so I'm not sure. One time only Bactrim didn't help and they called in Augmentin, which did help. But the time after that Bactrim worked again.

The good thing about steno is that they don't really think it causes problems like PA does, although Vin did need oral anti's a few times this year. The bad thing is it's more resistant to certain drugs (but you could still do combos, like Tobra and ceftaz). Vinny's doctors always tell me not to worry about it and that it may not even do much damage, but it still makes me uneasy.

 

[amber682]

Okay, first off, I'd be a little ticked if my son's clinic called and said his cultures were normal, only to find out he's actually culturing something new. Even if they're not going to do anyhting about it, you'd think they'd atleast let you know. If he just cultured it why don't they atleast try to get rid of it before it's settled in for good?

Vinny has been culturing steno since last August. It has shown up on every culture every two months since then. There's been a few times where he got this junky cough, with no other symptoms, that didn't go away after a few days on it's own. The doctor always calles in Bactrim and that gets rid of it. I always assumed it was the steno acting up, but he cultures staph just about every time too, so I'm not sure. One time only Bactrim didn't help and they called in Augmentin, which did help. But the time after that Bactrim worked again.

The good thing about steno is that they don't really think it causes problems like PA does, although Vin did need oral anti's a few times this year. The bad thing is it's more resistant to certain drugs (but you could still do combos, like Tobra and ceftaz). Vinny's doctors always tell me not to worry about it and that it may not even do much damage, but it still makes me uneasy.

 

[amber682]

Okay, first off, I'd be a little ticked if my son's clinic called and said his cultures were normal, only to find out he's actually culturing something new. Even if they're not going to do anyhting about it, you'd think they'd atleast let you know. If he just cultured it why don't they atleast try to get rid of it before it's settled in for good?

Vinny has been culturing steno since last August. It has shown up on every culture every two months since then. There's been a few times where he got this junky cough, with no other symptoms, that didn't go away after a few days on it's own. The doctor always calles in Bactrim and that gets rid of it. I always assumed it was the steno acting up, but he cultures staph just about every time too, so I'm not sure. One time only Bactrim didn't help and they called in Augmentin, which did help. But the time after that Bactrim worked again.

The good thing about steno is that they don't really think it causes problems like PA does, although Vin did need oral anti's a few times this year. The bad thing is it's more resistant to certain drugs (but you could still do combos, like Tobra and ceftaz). Vinny's doctors always tell me not to worry about it and that it may not even do much damage, but it still makes me uneasy.

 

[amber682]

Okay, first off, I'd be a little ticked if my son's clinic called and said his cultures were normal, only to find out he's actually culturing something new. Even if they're not going to do anyhting about it, you'd think they'd atleast let you know. If he just cultured it why don't they atleast try to get rid of it before it's settled in for good?

Vinny has been culturing steno since last August. It has shown up on every culture every two months since then. There's been a few times where he got this junky cough, with no other symptoms, that didn't go away after a few days on it's own. The doctor always calles in Bactrim and that gets rid of it. I always assumed it was the steno acting up, but he cultures staph just about every time too, so I'm not sure. One time only Bactrim didn't help and they called in Augmentin, which did help. But the time after that Bactrim worked again.

The good thing about steno is that they don't really think it causes problems like PA does, although Vin did need oral anti's a few times this year. The bad thing is it's more resistant to certain drugs (but you could still do combos, like Tobra and ceftaz). Vinny's doctors always tell me not to worry about it and that it may not even do much damage, but it still makes me uneasy.

 

[Ratatosk]

CF doctor in the City indicated that the steno is sensitive to Septra and another med. It's resistant to cefta(sp). The nurse noticed that DS might be allergic -- when he was 3 months old, he developed spots; however, since that time he's developed spots around the same time from mosquito bits. Also, she said he'd be photosensitive on septra. We already make sure he wears and hat and slather him with sunblock since he's so light complected. What are others experiences with this med? Do we need to get him a burqua or just be even more vigilant?

 

[Ratatosk]

CF doctor in the City indicated that the steno is sensitive to Septra and another med. It's resistant to cefta(sp). The nurse noticed that DS might be allergic -- when he was 3 months old, he developed spots; however, since that time he's developed spots around the same time from mosquito bits. Also, she said he'd be photosensitive on septra. We already make sure he wears and hat and slather him with sunblock since he's so light complected. What are others experiences with this med? Do we need to get him a burqua or just be even more vigilant?

 

[Ratatosk]

CF doctor in the City indicated that the steno is sensitive to Septra and another med. It's resistant to cefta(sp). The nurse noticed that DS might be allergic -- when he was 3 months old, he developed spots; however, since that time he's developed spots around the same time from mosquito bits. Also, she said he'd be photosensitive on septra. We already make sure he wears and hat and slather him with sunblock since he's so light complected. What are others experiences with this med? Do we need to get him a burqua or just be even more vigilant?

 

[Ratatosk]

CF doctor in the City indicated that the steno is sensitive to Septra and another med. It's resistant to cefta(sp). The nurse noticed that DS might be allergic -- when he was 3 months old, he developed spots; however, since that time he's developed spots around the same time from mosquito bits. Also, she said he'd be photosensitive on septra. We already make sure he wears and hat and slather him with sunblock since he's so light complected. What are others experiences with this med? Do we need to get him a burqua or just be even more vigilant?

 

[Ratatosk]

CF doctor in the City indicated that the steno is sensitive to Septra and another med. It's resistant to cefta(sp). The nurse noticed that DS might be allergic -- when he was 3 months old, he developed spots; however, since that time he's developed spots around the same time from mosquito bits. Also, she said he'd be photosensitive on septra. We already make sure he wears and hat and slather him with sunblock since he's so light complected. What are others experiences with this med? Do we need to get him a burqua or just be even more vigilant?

 

[Ratatosk]

CF doctor in the City indicated that the steno is sensitive to Septra and another med. It's resistant to cefta(sp). The nurse noticed that DS might be allergic -- when he was 3 months old, he developed spots; however, since that time he's developed spots around the same time from mosquito bits. Also, she said he'd be photosensitive on septra. We already make sure he wears and hat and slather him with sunblock since he's so light complected. What are others experiences with this med? Do we need to get him a burqua or just be even more vigilant?

 

[Rebjane]

My daughter is on bactrim, which you also have to be very careful about being in the sun. We do sunscreen/hat, and avoid the rays at their strongest, noon time hour. We live in a cold part of the country so usually we don't see too many super strong sunny days. Some of the cute "rash guard" shirts for the beach have built in suncreen, my son without CF has one. I think they are pretty cool, better than a burqua<img src="i/expressions/face-icon-small-smile.gif" border="0"> We also encourage lots, lots fluids. Yesterday was very hot and I can't believe how much my daughter with CF can drink, Sh emust have drank 4 lemonades in less than 2 hours, when we were outside.

 

[Rebjane]

My daughter is on bactrim, which you also have to be very careful about being in the sun. We do sunscreen/hat, and avoid the rays at their strongest, noon time hour. We live in a cold part of the country so usually we don't see too many super strong sunny days. Some of the cute "rash guard" shirts for the beach have built in suncreen, my son without CF has one. I think they are pretty cool, better than a burqua<img src="i/expressions/face-icon-small-smile.gif" border="0"> We also encourage lots, lots fluids. Yesterday was very hot and I can't believe how much my daughter with CF can drink, Sh emust have drank 4 lemonades in less than 2 hours, when we were outside.