Pseudomonas management

[anonymous]

Amy-
Sophia has not been treated for staff. Her cf doctor does not see the need to treat it. Other than culturing it occassionally there are indications that she is having any problems with it. I have heard of some cf doctors who do treat it though.

Tammy-
We do have a lot in common. Two little ones with cf keep me busy. But I love every minute with them!!

Sharon, mom of Sophia 3.5 and Jack 1.5 both with cf.

 

[lovemygirl]

My 4 yr old cultured pseudamonas in Oct for the first time. Her next culture in Jan came back negative. She is taking Tobramycin twice a day. We were thrilled to get back the neg culture only 3 months later but now she is coughing again. We put her on Ceftin last week but it seems to be getting worse, not better. I spoke to one of the CF respirologists late last time (we have 24 hr paging) and he thinks the pseudamonas might be back, based on what I have told him.
Is it common for it to come back so soon? Can they really determine if it is back without a throat culture? He asked that I wait until Sunday and then put her back on Cipro if it is not better withthe Ceftin.
If she got it back so soon after the first bout is there any chance that we can still beat it?

 

[NoDayButToday]

Lovemygirl,
There was a time that once you got pseudomonas, you had it. I think that has changed to a degree in recent years, but it still is a pretty smart little bug. Here are the possibilities in my mind about your daughter-- #1. She never actually was rid of pseudomonas, it is just that the most recent culture was not a good enough specimen to properly analyze. #2 It did go away and come back, it is possible for that to happen. #3 She is feeling sick from something that is not pseudomonas entirely-- meaning she is sick from another bug that does not respond to anti-pseudomonas drugs.
I think it is possible to still beat pseudomonas, but it will bne hard to do, and thats why most people with CF culture pseudomonas regularly. It stops being about eradicating the pseudomonas and more about controlling it. Its a new CF phase when this happens, but the change is slight.

 

[anonymous]

I have a question, in my recent sputem it said that there was a heavy growth of pseudemonas. Does anyone know, is it as simple as the sputem cultering like 50% pseud or 3% pseud(which would be minimle growth) If anyone can answer (or understand!) my question, I'd love to hear answers,Thanx Shamrock

 

[anonymous]

My dd cultured pseudo last July (in her first culture) so she did a month of TOBI (along with a common oral can't remember which one), didn't culture it the month after that but did culture it again in October so she did another round of TOBI with Cipro (liquid-which she HATED!) and didn't culture pseudo in December or January. We have continuued doing TOBI even though she hasn't cultured it to be sure it isn't hiding in there and if she doesn't culture it again in April, we will stay off TOBI until she cultures it again (hopefully never!)

On my dd's result sheet, it tells us "how much" pseudo she cultured, hers always says FEW. Also, pseudo is all over the place (mouth, hands, nose, skin, etc) so it is really hard to tell where it comes from and a positive culture can be showing pseudo that is just in the mouth/throat so sometimes if someone only cultures it once and not again for a long time, one can suspect that it may have not been in the lungs in the first place...that is what I was told anyway (I am no expert!).

My dd has always cultured staph and it isn't treated unless it causes problems bc her DR doesn't want to over antibiotic. Oh ya, and a person can have pseudo and show NO symptoms (for a while anyway, I imagine it eventually will show its ugly self) bc my daughter has never had any resp. symptoms other than getting an occasional cold/cough which goes away on its own (just like kids wout cf, so we don't really consider that a symptom.

HTH,
Kelli

<a target=new class=ftalternatingbarlinklarge href="http://sydneymyers-ivil.tripod.com/">http://sydneymyers-ivil.tripod.com/</a>

 

[Aussimum]

With pseudomonas I find that my daughter gets sick very quickly with high temps and goes right off her food as opposed to other type of infections - she also has a deeper and wetter cough immediately as opposed to other infections which are slower to worsen. Everyone is different though - it will show up on a cough specimen so don't worry about it!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

they told you not to give her tobi untill 5 because it will really impact there speech and hearing if you do.My son was 1 yr when they put him on it and it now has been proven that it causes hearing and speech problems if used at such a young age. My son is now 7 and still in speech at school.

 

[anonymous]

Our doc recomanded us ciprinol(tb) and gentamicin in neb(tobramicin is not found here), but only 10days a month because can will have hear problems. Now she is on augumentin for her staph.
carmenada

 

[arabeth]

Hi everyone... I haven't been on for a while and was just catching up and wanted to respond to this one. My 2 daughters with CF are 10 and 6. The younger one was the first to culture pseudomonias at about age 3. She was initially treated with Colomycin (every other month for about 9 months I believe). My older daughter did not culture it during that time. Then about a year later they both cultured it. They were then put on TOBI every other month. They were kept on TOBI that way until they had a minimum of 3 clean cultures (about a year total) then finally quit taking it. They both hate the taste and smell, but it's worth it in the end if it keeps it under control. Oh, and they never had any symptoms at all. For now they both appear to be clear of it but we recently moved and have our first appt at our new CF Center in San Antonio next week so we'll see how it goes.

As for Staph and whether they treat it, my older daughter consistantly cultures staph. She has never had any symptons from it but they always treat it, without exception. We were going to the CF Center in Minneapolis for the past 4 years and they are reputed to be extremely agressive, so maybe that's why. She is always given an antibiotic (usually Duracef) when she cultures it. Even if it isn't causing problems, it shouldn't be there, at least that's the way they think. I guess my question is, wouldn't it continue to multiply and get worse if it's not treated? Then it would eventually be bad enough to cause problems... And wouldn't it be easier to treat when it first shows up? Those are intended as questions, not statements. I just wonder if it is necessary to give her the antibiotics every time... I would rather be safe than sorry, but I'd also like to hear what others have been told.

Thanks all!

 

[anonymous]

Hi, quick question here: when you guys say speech problems, do you mean delayed speech when hearing is damaged?

I ask bc my daughter (21 months) has been on TOBI 5 times since her diagnosis less than a year ago. Her hearing seems fine (she can hear a whisper from across the room) but having her on TOBI makes me really nervous... I will be sure to discuss this with her CF doc at her next appt. (this month) too.

Thanks for your thoughts and wisdom!
Kelli (mom of Sydney 21 months wcf)

 

[anonymous]

I am very curious about this proven hearing and speech probs.
My son was on TOBI at 11 months for 3 months, 2 weeks IV and 2 months nebulized.
He is now 23 months old, and has only started to babble, he doesn't even flinch at really loud noises and I am feeling increasing concerned about his hearing.
I have asked the hospital for a follow up hearing test which they will do but tell me it won't be caused by the Tobi?
Rebekah
Mother to Matt 23mths w/CF

 

[anonymous]

I have two children with CF and our two year old has Pseudomonas and our three year old doesn't but the doctor has said that our oldest will probably end up getting it.