Steno Maltophilis

[Itsgottabgordon]

Hi,
My daughter aged 16yrs (CF) has recentley grown Stenomaltophilis, The Dr has told us it is common in CF but it is the first time in her 16yrs that we have heard of it, does anyone know what it is?
She always gets Staph and occasionally Pseudomonas, aspergilous and H.Influenzae, and a couple of other strange ones but has never had this.
Unfortunately the weather over here has been awful recently so it is a good breeding ground for bugs and Amy is now on her 4th lot of Iv antibiotics this year. She stays in hospital for the first couple of doses then we have her at home whilst I administer the 2wk course myself.
Does everyone in europe do home Ivs? Amy is currently on Vancomycin (supposedly the bleach of all antibiotics!) and Ceftazadime, she takes Flucloxacillin 4 times daily as a prophylactic drug, alsong with Tobramycin nebulisers, vitamin e capsules, multi vitamin capsules and her creon. She is also Diabetic on insulin.
I would love to hear from anyone with a child with CF around the same age or from anyone who has grown stenomaltophilia.

 

[Itsgottabgordon]

Hi,
My daughter aged 16yrs (CF) has recentley grown Stenomaltophilis, The Dr has told us it is common in CF but it is the first time in her 16yrs that we have heard of it, does anyone know what it is?
She always gets Staph and occasionally Pseudomonas, aspergilous and H.Influenzae, and a couple of other strange ones but has never had this.
Unfortunately the weather over here has been awful recently so it is a good breeding ground for bugs and Amy is now on her 4th lot of Iv antibiotics this year. She stays in hospital for the first couple of doses then we have her at home whilst I administer the 2wk course myself.
Does everyone in europe do home Ivs? Amy is currently on Vancomycin (supposedly the bleach of all antibiotics!) and Ceftazadime, she takes Flucloxacillin 4 times daily as a prophylactic drug, alsong with Tobramycin nebulisers, vitamin e capsules, multi vitamin capsules and her creon. She is also Diabetic on insulin.
I would love to hear from anyone with a child with CF around the same age or from anyone who has grown stenomaltophilia.

 

[Itsgottabgordon]

Hi,
My daughter aged 16yrs (CF) has recentley grown Stenomaltophilis, The Dr has told us it is common in CF but it is the first time in her 16yrs that we have heard of it, does anyone know what it is?
She always gets Staph and occasionally Pseudomonas, aspergilous and H.Influenzae, and a couple of other strange ones but has never had this.
Unfortunately the weather over here has been awful recently so it is a good breeding ground for bugs and Amy is now on her 4th lot of Iv antibiotics this year. She stays in hospital for the first couple of doses then we have her at home whilst I administer the 2wk course myself.
Does everyone in europe do home Ivs? Amy is currently on Vancomycin (supposedly the bleach of all antibiotics!) and Ceftazadime, she takes Flucloxacillin 4 times daily as a prophylactic drug, alsong with Tobramycin nebulisers, vitamin e capsules, multi vitamin capsules and her creon. She is also Diabetic on insulin.
I would love to hear from anyone with a child with CF around the same age or from anyone who has grown stenomaltophilia.

 

[Itsgottabgordon]

Hi,
My daughter aged 16yrs (CF) has recentley grown Stenomaltophilis, The Dr has told us it is common in CF but it is the first time in her 16yrs that we have heard of it, does anyone know what it is?
She always gets Staph and occasionally Pseudomonas, aspergilous and H.Influenzae, and a couple of other strange ones but has never had this.
Unfortunately the weather over here has been awful recently so it is a good breeding ground for bugs and Amy is now on her 4th lot of Iv antibiotics this year. She stays in hospital for the first couple of doses then we have her at home whilst I administer the 2wk course myself.
Does everyone in europe do home Ivs? Amy is currently on Vancomycin (supposedly the bleach of all antibiotics!) and Ceftazadime, she takes Flucloxacillin 4 times daily as a prophylactic drug, alsong with Tobramycin nebulisers, vitamin e capsules, multi vitamin capsules and her creon. She is also Diabetic on insulin.
I would love to hear from anyone with a child with CF around the same age or from anyone who has grown stenomaltophilia.

 

[Itsgottabgordon]

Hi,
My daughter aged 16yrs (CF) has recentley grown Stenomaltophilis, The Dr has told us it is common in CF but it is the first time in her 16yrs that we have heard of it, does anyone know what it is?
She always gets Staph and occasionally Pseudomonas, aspergilous and H.Influenzae, and a couple of other strange ones but has never had this.
Unfortunately the weather over here has been awful recently so it is a good breeding ground for bugs and Amy is now on her 4th lot of Iv antibiotics this year. She stays in hospital for the first couple of doses then we have her at home whilst I administer the 2wk course myself.
Does everyone in europe do home Ivs? Amy is currently on Vancomycin (supposedly the bleach of all antibiotics!) and Ceftazadime, she takes Flucloxacillin 4 times daily as a prophylactic drug, alsong with Tobramycin nebulisers, vitamin e capsules, multi vitamin capsules and her creon. She is also Diabetic on insulin.
I would love to hear from anyone with a child with CF around the same age or from anyone who has grown stenomaltophilia.

 

[Jane]

Fourth round? Oh that stinks.

My son grew it a few years ago. They also gave him Vanco IV. He's been on other things since for different bugs too. SO far the SM hasn't come back.

Hope it gets knocked out with this round of vanco! Good luck!

 

[Jane]

Fourth round? Oh that stinks.

My son grew it a few years ago. They also gave him Vanco IV. He's been on other things since for different bugs too. SO far the SM hasn't come back.

Hope it gets knocked out with this round of vanco! Good luck!

 

[Jane]

Fourth round? Oh that stinks.

My son grew it a few years ago. They also gave him Vanco IV. He's been on other things since for different bugs too. SO far the SM hasn't come back.

Hope it gets knocked out with this round of vanco! Good luck!

 

[Jane]

Fourth round? Oh that stinks.

My son grew it a few years ago. They also gave him Vanco IV. He's been on other things since for different bugs too. SO far the SM hasn't come back.

Hope it gets knocked out with this round of vanco! Good luck!

 

[Jane]

Fourth round? Oh that stinks.

My son grew it a few years ago. They also gave him Vanco IV. He's been on other things since for different bugs too. SO far the SM hasn't come back.

Hope it gets knocked out with this round of vanco! Good luck!

 

[Samismom]

Our 4 year old daughter has cultured steno on and off beginning at the age of 14 months. She now almost always cultures it. Most of the time she exhibits no symptoms (cough etc.) when she cultures it. However, when it seems to be getting out of hand, or when she cultures steno in addition to some other bug (pseudomonas, H. Flu, staph) she is usually treated.

They start with Bactrim. When Sam was younger, the Bactrim never seemed to be enough and she would end up on IVs usually Tobra and Timentim. After the IVs, she usually would not culture it for a month or two, but it always returned.

Something that I found interesting was when Sam was treated for Steno (with symptoms) with Bactrim for a period of about 6 weeks. She got rid of the Steno but guess what popped up on her next culture - pseudomonas. I read somewhere that Steno and Pseudomonas do not like to co-exist. I asked our doc, if perhaps by weakening the Steno, we made way for the pseudomonas. She was skeptical, but said that studies have been made regarding the two bugs and their relationship.

Anyway, I told our CF team that I much rather leave the Steno alone (if it is not causing symptoms). If it somehow is keeping the pseudomonas at bay, it might not be such a bad bug after all.

Maria (mom to Samantha w/CF)

 

[Samismom]

Our 4 year old daughter has cultured steno on and off beginning at the age of 14 months. She now almost always cultures it. Most of the time she exhibits no symptoms (cough etc.) when she cultures it. However, when it seems to be getting out of hand, or when she cultures steno in addition to some other bug (pseudomonas, H. Flu, staph) she is usually treated.

They start with Bactrim. When Sam was younger, the Bactrim never seemed to be enough and she would end up on IVs usually Tobra and Timentim. After the IVs, she usually would not culture it for a month or two, but it always returned.

Something that I found interesting was when Sam was treated for Steno (with symptoms) with Bactrim for a period of about 6 weeks. She got rid of the Steno but guess what popped up on her next culture - pseudomonas. I read somewhere that Steno and Pseudomonas do not like to co-exist. I asked our doc, if perhaps by weakening the Steno, we made way for the pseudomonas. She was skeptical, but said that studies have been made regarding the two bugs and their relationship.

Anyway, I told our CF team that I much rather leave the Steno alone (if it is not causing symptoms). If it somehow is keeping the pseudomonas at bay, it might not be such a bad bug after all.

Maria (mom to Samantha w/CF)

 

[Samismom]

Our 4 year old daughter has cultured steno on and off beginning at the age of 14 months. She now almost always cultures it. Most of the time she exhibits no symptoms (cough etc.) when she cultures it. However, when it seems to be getting out of hand, or when she cultures steno in addition to some other bug (pseudomonas, H. Flu, staph) she is usually treated.

They start with Bactrim. When Sam was younger, the Bactrim never seemed to be enough and she would end up on IVs usually Tobra and Timentim. After the IVs, she usually would not culture it for a month or two, but it always returned.

Something that I found interesting was when Sam was treated for Steno (with symptoms) with Bactrim for a period of about 6 weeks. She got rid of the Steno but guess what popped up on her next culture - pseudomonas. I read somewhere that Steno and Pseudomonas do not like to co-exist. I asked our doc, if perhaps by weakening the Steno, we made way for the pseudomonas. She was skeptical, but said that studies have been made regarding the two bugs and their relationship.

Anyway, I told our CF team that I much rather leave the Steno alone (if it is not causing symptoms). If it somehow is keeping the pseudomonas at bay, it might not be such a bad bug after all.

Maria (mom to Samantha w/CF)

 

[Samismom]

Our 4 year old daughter has cultured steno on and off beginning at the age of 14 months. She now almost always cultures it. Most of the time she exhibits no symptoms (cough etc.) when she cultures it. However, when it seems to be getting out of hand, or when she cultures steno in addition to some other bug (pseudomonas, H. Flu, staph) she is usually treated.

They start with Bactrim. When Sam was younger, the Bactrim never seemed to be enough and she would end up on IVs usually Tobra and Timentim. After the IVs, she usually would not culture it for a month or two, but it always returned.

Something that I found interesting was when Sam was treated for Steno (with symptoms) with Bactrim for a period of about 6 weeks. She got rid of the Steno but guess what popped up on her next culture - pseudomonas. I read somewhere that Steno and Pseudomonas do not like to co-exist. I asked our doc, if perhaps by weakening the Steno, we made way for the pseudomonas. She was skeptical, but said that studies have been made regarding the two bugs and their relationship.

Anyway, I told our CF team that I much rather leave the Steno alone (if it is not causing symptoms). If it somehow is keeping the pseudomonas at bay, it might not be such a bad bug after all.

Maria (mom to Samantha w/CF)

 

[Samismom]

Our 4 year old daughter has cultured steno on and off beginning at the age of 14 months. She now almost always cultures it. Most of the time she exhibits no symptoms (cough etc.) when she cultures it. However, when it seems to be getting out of hand, or when she cultures steno in addition to some other bug (pseudomonas, H. Flu, staph) she is usually treated.

They start with Bactrim. When Sam was younger, the Bactrim never seemed to be enough and she would end up on IVs usually Tobra and Timentim. After the IVs, she usually would not culture it for a month or two, but it always returned.

Something that I found interesting was when Sam was treated for Steno (with symptoms) with Bactrim for a period of about 6 weeks. She got rid of the Steno but guess what popped up on her next culture - pseudomonas. I read somewhere that Steno and Pseudomonas do not like to co-exist. I asked our doc, if perhaps by weakening the Steno, we made way for the pseudomonas. She was skeptical, but said that studies have been made regarding the two bugs and their relationship.

Anyway, I told our CF team that I much rather leave the Steno alone (if it is not causing symptoms). If it somehow is keeping the pseudomonas at bay, it might not be such a bad bug after all.

Maria (mom to Samantha w/CF)

 

[Ratatosk]

DS cultured this past spring. I had noticed a little bit of a cough, as if he'd swallowed wrong more recently. He was put on septra for it. Hasn't been back for cultures. He also has cultured psuedo and H Flu in the past too, but the latter not since he started zithromax.

 

[Ratatosk]

DS cultured this past spring. I had noticed a little bit of a cough, as if he'd swallowed wrong more recently. He was put on septra for it. Hasn't been back for cultures. He also has cultured psuedo and H Flu in the past too, but the latter not since he started zithromax.

 

[Ratatosk]

DS cultured this past spring. I had noticed a little bit of a cough, as if he'd swallowed wrong more recently. He was put on septra for it. Hasn't been back for cultures. He also has cultured psuedo and H Flu in the past too, but the latter not since he started zithromax.

 

[Ratatosk]

DS cultured this past spring. I had noticed a little bit of a cough, as if he'd swallowed wrong more recently. He was put on septra for it. Hasn't been back for cultures. He also has cultured psuedo and H Flu in the past too, but the latter not since he started zithromax.

 

[Ratatosk]

DS cultured this past spring. I had noticed a little bit of a cough, as if he'd swallowed wrong more recently. He was put on septra for it. Hasn't been back for cultures. He also has cultured psuedo and H Flu in the past too, but the latter not since he started zithromax.