STENOTROPHOMONAS

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rachelsmom

New member
I am currently going through IV antibiotics for the second time in six weeks with my daughter. Her bronch showed over 100,000 stenotrophomonas. She has had this in the past and I was told that the docs arent sure how big a part this bacteria plays in CF.

I feel like it is causing all her symptoms right now. She is fatigued and short of breath all the time without even really exerting herself.
Does anyone know anything about this particular bacteria?

I am starting to feel very frustrated.

Thanks for your help!

Teri-8 year old daughter wcf
 
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anonymous

New member
Teri,
I know nothing of the original topic you brought up, but will tell you that TOBI makes me short of breath pretty bad. Is she on TOBI and if so, on the month that she is not taking it, doesn the shortness of breath seem to lessen?
Just a thought. I'm sure I'm the exception here, so I don't want everyone to question TOBI just because of my experience, but just wanted to throw this out there to see if you notice a pattern of increased shortness of breath while on the TOBI cycle.
 
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anonymous

New member
Hi. Our 7 yr old has had lots of syptoms related to steno.,which we were originally told was not clinically significant.(Whoops!!) Now going thru the same rigamarole w/ MRSA. I'd say, insist they treat it early and often-err on the side of caution. And if the child is having symptoms and that's what they are culturing, treat it, don't deny it!!(Or let the docs deny its significance). My two cents. Good luck.
 
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anonymous

New member
I first started growing stenotrophomonas about 7 or 8 yrs ago. I don't think it greatly changed my health status, but it was sometimes harder to get rid of, because it doesn't respond to the same antibiotic and pseudomonas. Stenotrophomonas definitely isn't as deleterious as Cepacia, for example. I usually go on tetracycline for it. A few times, I have done IV Bactrum, but that really bothers my stomach.
Mary 22w/CF
 
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anonymous

New member
i was also extremely short of breath the months on tobi inhaled... plus, i had such terrible coughing fits that i gagged and couldn't breath at night when i was on it (plus, after 2+ years of being on it, my pft's were the same or worse, as was my hospital visits). my doc took me off and put me on inhaled colistyn instead (28 day cycles). that is so much better. just a thought for anyone that has the shortness of breath from tobi. i sometimes think these new drugs that come out are so popluar and widely prescribed that everyone assumes they will be helped by them, when in fact, not all are (i know of 2 others at my CF clinic that couldn't tolerate tobi inhaled).....(sorry to get off topic a bit). take care.
 
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anonymous

New member
my son was diag. with sten. He is about to get a pic line and start meds. I don't know which ones yet. He also has staph and pseud. A. We don't know how long he has had sten. this is his first culture in a long long time. He is grouchy and had dark sinus eyes. I read in a website that sten. is aquatic. We do have a pool. Who knows, its aggravating. What has helped you and should we ask for a culture when he is done with his meds?
 
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rachelsmom

New member
Well I dont think you should assume that he got the sten from your pool. I have been doing the same things for the past week. Where did she get it. We have a leaky shower faucet. My parents have a boat and she swims in lakes.....She loves to eat ice from ice machines at her aunts and grandmas. I think we could make ourselves crazy trying to figure it out. The doc said it is everywhere. You cant keep them from swimming but I guess just be as careful as you can. My doctor told me that they do not automatically send the steno for a sensitivity. This is what happened in August when we were in the hosp. The meds helped her enough to improve her symptoms but when they took her off the PICC line it came right back. This time they sent the culture for a sensitivity and found out it is resistant to all meds by themselves so they have to send for a synergy?? study to find the right combo to use on the steno. Hopefully this will help. She also grew a fungus which could be part of the problem as well maybe you should check that out as well. Good Luck and let me know what you find out.

Thanks,

Teri
 
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anonymous

New member
Hi Teri, Do you think we are doing the wrong thing by homeschooling our other children as well as the 10 yr old cf child? The children are driving me nuts as I am stressing out about our Insurance delaying this whole IV process. I cant really think clearly enough to make any decisions.
 
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anonymous

New member
I dont know what your situation is, but I think you have to do what is right for you. If homeschooling is what suits your needs then I think it is the right thing to do. I know some places like the YMCA offer programs for children that are homeschooled. Maybe a couple of hours of swimming and exercise (which would also help your CF child) this would also give you a break to regroup during the day.

If it is not what you thought then I would consider putting them back in regular school. You could talk with your CF social worker about helping you come up with an IEP for your 10 yr old that way when he is not feeling well or going through a bad spell you can get the help you need to keep him up to speed.

Let me know how it goes.

Good Luck and remember you are not alone <img src="i/expressions/face-icon-small-smile.gif" border="0">

Teri
 
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