My daughter has been in the hospital for a week now. Her cultures finally came back Monday showing she was growing stenotrophomonas maltophilia. I have never heard of this bug before, but apparently her strain is resistant to both of the antibiotics used to treat it which the doctor said he has never seen. They have shipped her cultures to Canada so they can hopefully find a treatment. I was just wondering if anyone else has dealt with this. How common is it? How well does it respond to antibiotics once one is found? Sorry so many questions...just new to this. She has tested positive for psuedomonas before, but has been free of that for 3 years now. This just threw me for a loop. Thanks in advance.
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question for anyone who can help
- Thread starter anonymous
- Start date
My three year old daughter has cultured stenotrophomonas on and off for over two years now. Once she cultured two strains of it. Fortunately, her strains are sensitive to Bactrim (oral), Timentim (IV) and Gentomycin (IV).
HOWEVER, she has had several rounds of IVs, and months of Bactrim and she still always cultures it again. The meds seem to hold it at bay or minimize it - but it is not eradicated.
The doctors say it is not as virulent as pseudomonas or other bugs, but its constant presence definitely seems to prevent her from staying healthy for too long. It seems to be a very resistant bug.
Maria (mom to Sami, 3 years old w/cf)
HOWEVER, she has had several rounds of IVs, and months of Bactrim and she still always cultures it again. The meds seem to hold it at bay or minimize it - but it is not eradicated.
The doctors say it is not as virulent as pseudomonas or other bugs, but its constant presence definitely seems to prevent her from staying healthy for too long. It seems to be a very resistant bug.
Maria (mom to Sami, 3 years old w/cf)
I have cultured that many of times. I go into the hospital once a year and I am given ceptazadime( sorry for misspelling), cefepime, and I use to ALWAYS get tobra but last hospital visit I was throwing up and running hight fevers from the tobra so we stopped it thru the IV and I inhaled TOBI thru the neb.
Doctor has not mentioned much else about it, but I am learning that I need to be more proactive about the bugs I am carrying and to ask more questions.
Not sure if that helps, but thought I would share.
Jennifer 34 years old with CF and CFRD
Doctor has not mentioned much else about it, but I am learning that I need to be more proactive about the bugs I am carrying and to ask more questions.
Not sure if that helps, but thought I would share.
Jennifer 34 years old with CF and CFRD
Well, I finally called my daughters actual pulmonary Dr. (we never see him once she is admitted) to try and find out what they are going to do and he hadn't even had an update on her in a couple of days! I was not happy to hear that, then the nurse tells me that she has cultured this several times before but that it wasn't resistant then! This is the FIRST time they have even mentioned this. I was not at all happy with our dr. yesterday.
john81john
New member
Hi,
I have this bug since 1997, up to 2002 it was sensitive to many antb.. But my doc. said its not necessery to treat it, that was fault...Now its resistent to many of them, I was taking Colymicin (inhale) and Cotrimoxazol, but it made a resistence too.
I have taken I.V. Fortum and netylmycin plus orally Cotrimoxazol in April, this helped...in last 3 cultures it wasnt
...there are studies that this bug is fighting with PA and B. cepacia about his space and sources in CF lungs, some doc. say its better to be colonised with Steno. than with PA or Burk. cepacia, but of course its depend on it how do you (your DD) feel...
I have this bug since 1997, up to 2002 it was sensitive to many antb.. But my doc. said its not necessery to treat it, that was fault...Now its resistent to many of them, I was taking Colymicin (inhale) and Cotrimoxazol, but it made a resistence too.
I have taken I.V. Fortum and netylmycin plus orally Cotrimoxazol in April, this helped...in last 3 cultures it wasnt
...there are studies that this bug is fighting with PA and B. cepacia about his space and sources in CF lungs, some doc. say its better to be colonised with Steno. than with PA or Burk. cepacia, but of course its depend on it how do you (your DD) feel...
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>john81john</b></i>
...there are studies that this bug is fighting with PA and B. cepacia about his space and sources in CF lungs, some doc. say its better to be colonised with Steno. than with PA or Burk. cepacia, but of course its depend on it how do you (your DD) feel...</end quote></div>
That's interesting, one of my kids has psuedo, the other steno. They also have a mycobacterium so honestly I can't remember what med is for what thing. Good link anon- thanks.
...there are studies that this bug is fighting with PA and B. cepacia about his space and sources in CF lungs, some doc. say its better to be colonised with Steno. than with PA or Burk. cepacia, but of course its depend on it how do you (your DD) feel...</end quote></div>
That's interesting, one of my kids has psuedo, the other steno. They also have a mycobacterium so honestly I can't remember what med is for what thing. Good link anon- thanks.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>
That's interesting, one of my kids has psuedo, the other steno. They also have a mycobacterium so honestly I can't remember what med is for what thing. Good link anon- thanks.</end quote></div>
I checked, it was bactrim for the steno.
That's interesting, one of my kids has psuedo, the other steno. They also have a mycobacterium so honestly I can't remember what med is for what thing. Good link anon- thanks.</end quote></div>
I checked, it was bactrim for the steno.