How have many of you found out, you have the "Pseudo bug" or any other bugs/infection?

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eli

New member
How have many of you found out, you have the "Pseudo bug" or any other bugs/infection?

The reason for my asking is that, the docs like to de yearly bronchs for the first five years at our clinic and i'm not too comfortable with it being done for no apparent reason.
eg, if they had seriouse concerns that she might be growing somthing and were extremely worried, then i would proeed. But if its just part of practice, which it is then i don't want to put my daughter through it.

So, what i realy want to know is should i go ahead with it, or just push to have regular sputem cultures done instead. Remembering they don't do cultures at our clinic.
Oh, i can see this will be a big fight at our next appointment.

Please help!
 
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fugikitten2087

New member
How have many of you found out, you have the "Pseudo bug

Most times my sputum samples are enough to please them. How ever sometimes a bacteria can hide or another one makes it less noticable, so it's not a bad idea. I've had one and I know it wasnt a pleasent expeirence but because of it I know exactlly what I grow.
 
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Emily65Roses

New member
How have many of you found out, you have the "Pseudo bug

Yearly bronchs? Yikes. I've always does cultures (Q tips when I couldn't cough up on purpose and now spit cups), every visit. They know I grow 3 pseudos, MRSA, and staph... all from cultures only.

But I've never had a bronch. I would say it's not a BAD idea to get one, but it's not really necessary unless she's showing signs of "less than okay"ness.
 
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HairGirl

New member
How have many of you found out, you have the

As far back as I can remember I've only done Sputum samples. Personally I might fight this one! If a bronch is a bit evasive I would fight if it is absolutely necessary. Why don't they like to do Sputum cultures???? Maybe they should??????
 
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NoExcuses

New member
How have many of you found out, you have the "Pseudo bug

things have changed since I was young, i know.

my understanding is that the philosophy in the 1st years of CF is to identify bugs IMMEDIATELY to raise the chances of eliminating the bug.... instead of just supressing growth.

Since bronchs are more accurate than sputum cultures, they can help facilitate the above stated goal. If you don't know what bugs are growing, you can't treat to eradicate.

The later kids are colonized with PA the more lung function can be preserved.

Maybe call the CF and get their opinion? Or call the clinic in Minnesota and see what they do...
 
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littledebbie

New member
How have many of you found out, you have the "Pseudo bug

I have never had a bronch but as others have said I know things
have changed.  Still it seems a little much to me.
 Theres never anything wrong with asking more questions and
pestering until you feel satisfied with the way you are proceeding.
 Your her best advocate you know her better than anyone at
this point.<br>
<br>
 Also, be sure to really look into what goes into a bronch for
a little one. If theres one pet peeve I have (and trust me I
have more than one..he he he)it's when docs minimize procedures as
"standard" "routine" "minor" -yah
okay than how about you go have one buddy?  yah that's what i
thought.....how about their little one....uhh huh....yah.<br>
<br>
Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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eli

New member
How have many of you found out, you have the "Pseudo bug

Thanks for your input, guy's.

Another thing i forgot to mention is, if this is such a good idea like they assure me it is, than why aren't clinics all over the globe putting it into practice.
I mean shouldn't everyone be doing it to the under 5's to revent infection. Like Amy states, its better to treat it earlier and preserve lung function.

I don't know what to do, i have too many mixed emotions on the whole thing. Well, i guess i have 4-5 more months to think about my decision.

Thanks again.
 
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Jem

New member
How have many of you found out, you have the

Maybe you could talk to other parents at the clinic where you go whose children have had these bronchs and ask them if they feel this has been valuable to them? I have had 2 but that was at age 19 and 39, just prior to both of my surgeries. As an adult I wouldn't want to have it unless the doctor could really prove to me that it was absolutely necessary. I wish you well in making your decision. It's good you have a few months to research this beforehand. Good Luck!
 
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anonymous

New member
How have many of you found out, you have the

My son w/CF is 3 and will have his 2nd bronch. this summer because he's had intermittent positive cultures for pseudomonas and will be going in the hospital for IV, which means sedation for a picc line anyway.

But we've had a discussion with the Dr. about bronchoscopies before and my position was to avoid invasive procedures that pose risks and require sedation unless the Dr. thinks the bronch. will reveal something that will lead her to change medications/treatments. In other words: What might change about our son's treatments if you do this? He's already doing Tobi and periodic oral antibiotics and all the other usual stuff and we already know he's cultured PsA so what else are you looking for that you don't already know?
 
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JazzysMom

New member
How have many of you found out, you have the

I find it a very invasive procedure even tho I have never personally had one. I understand the findings that might come from it versus a standard sputum or swap culture, but unless a child shows symptoms or a sputum/swap culture shows something I wouldnt allow it on my child or myself. Its kind of a catch 22 scenario. You dont want unneccesary procedures yet you dont want to miss something & have it come back you in the buttocks either. Maybe you could compromise like have one done this year so you have a true starting point & then pace the otherones accordingly instead of annually. This is one bad thing about how different procedures work according to the clinics. I wish there was an easy answer for you!
 
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anonymous

New member
How have many of you found out, you have the

Eli,

CF treatments vary WIDELY across the world. Some clinics are just more innovative than others.

We have that Minnesota clinic in the US that's always doing something different than the rest of the US. Their patients live longer and healthier lives than any other patients in the US.

Sometimes different isn't bad. <img src="i/expressions/face-icon-small-smile.gif" border="0"> It can be innovative.

I would recommend that you get SKYPE for your computer and call Minnesota for free. Or get a hold of their email address and email them. Or find someone on this site who goes to the clinic and get an email address of a doc or nurse to ask what they think of yearly bronchs.

But as I told you last night - good for you for asking questions and figuring out what everything is all about. Your daughter will only be healthier for it!
 
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anonymous

New member
How have many of you found out, you have the

If I were you I would ask the doctor for the journal article names that support the bronching as much as they do. Also, do your own research in the meantime for these articles online. It's unlikely he's just doing this because he thinks it's a good idea. If this is so get him to admit this and ask him for his writings on this unpublished even he should be willing to share if your kid is one of his guinea pigs. It will probably be an eye opener to you. Secondly, you might want to research how far researchers are thinking they are from nailing the pseudo. a. vaccine then balance the risks of bronchs and make a decision.

Wouldn't it be a shame if you declined the bronch's and then 6 mo. after (s)he cultured pseudo. the vaccine was released. Most likely vaccines will only stop pseudo in people that have never cultured it.

Without pseudo most of us would have little lung involvement - pseudo is hte gateway bug for all the other bad bugs.

If I had a kid with CF I think that his intentions might be for the best with the vaccine around the corner (maybe?). I would learn how to best administer a bronch without cross-contam and make sure they are doing this method. sorry for the crappy sentances. trying to type fast.
 
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Alyssa

New member
How have many of you found out, you have the

Gee, I would be torn by this situation. On the one hand I wouldn't want to miss out on the opportunity to "jump on treating a bug as soon as possible" and, maybe like the others have said, things are (or could be) changing. But I also think yearly bronchs without any symptoms would be an unnecessary risk. <b>Especially</b> if they do not see what they find in a sputum sample first.

How much lung involvement does your daughter have? Has she ever tested positive for any bugs? Has she ever tested positive for PA?

All I know for sure is the CFF has set a guideline for sputum cultures every three months (throat swabs if no sputum is available) This is just the normal check up and see what's happening (you of course can always be checked sooner or more often if your situation calls for it)

Overall, I'd have to say my gut instinct would be to hold off, find out more and decide later (which is exactly what you are doing) :)
 
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Scarlett81

New member
How have many of you found out, you have the

Well-what you and your team do is your business, but sinced you asked<img src="i/expressions/face-icon-small-smile.gif" border="0">....I think doing yearly bronchs (in most cases) if there's no apparent need is useless and dangerous. Of course there's concern from the "germ" end, but while brochs are relatively safe, it's not like they're risk free. And I don't say that to concern you or make anyone upset, but they are invasive!
I haven't had a broch in 17 yrs. My doc thought of doing one on me last year when I was pretty sick, but she debated the issue for a week-seriosuly thought it over b/c there is a risk. In the end she felt I didn't need it.
I stick to cultures-and if my doc came to me and said-you really need a bronch then I'd go ahead with it.
 
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anonymous

New member
How have many of you found out, you have the

Hi Eli,

My daughter is three and has had three bronchoscopies. The first was done at around seven months of age because she was having a lot of respiratory problems and continuously culturing "normal flora". The bronch culture resulted in pseudomonas.

The second was done around a year later, again because of increased respiratory problems despite normal throat cultures. This bronch culture resulted in stenotrophomonas.

The third was done at about two 1/2 years of age because the doctor suspected aspiration due to reflux. This was confirmed by the cultures.

So, we have learned a lot through this procedure. But, I would not agree to a bronch unless it was absolutely needed. It is invasive, involves sedation and has some risks. I wouldn't subject my daughter to it unless it was necessary.

Maria (mom to three daughters, the youngest Samantha w/cf)
 
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NoExcuses

New member
How have many of you found out, you have the

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

If I were you I would ask the doctor for the journal article names that support the bronching as much as they do. Also, do your own research in the meantime for these articles online. It's unlikely he's just doing this because he thinks it's a good idea. If this is so get him to admit this and ask him for his writings on this unpublished even he should be willing to share if your kid is one of his guinea pigs. It will probably be an eye opener to you. Secondly, you might want to research how far researchers are thinking they are from nailing the pseudo. a. vaccine then balance the risks of bronchs and make a decision.



Wouldn't it be a shame if you declined the bronch's and then 6 mo. after (s)he cultured pseudo. the vaccine was released. Most likely vaccines will only stop pseudo in people that have never cultured it.



Without pseudo most of us would have little lung involvement - pseudo is hte gateway bug for all the other bad bugs.



If I had a kid with CF I think that his intentions might be for the best with the vaccine around the corner (maybe?). I would learn how to best administer a bronch without cross-contam and make sure they are doing this method. sorry for the crappy sentances. trying to type fast.</end quote></div>

great post, lauren. i agree 100%
 
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anonymous

New member
How have many of you found out, you have the

Both my kids have had bronchs prior to sinus surgery. I was opposed to it the first time, thinking it was unnecessary. But it was then that they first found the mycobacteria in Jesse. If I had declined, we wouldn't have known about the presence of this bug until the boys became sick. Knowing it when we did gave us two years of testing so this spring when Josh got sick, we had a plan for what to do.
 
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anonymous

New member
How have many of you found out, you have the

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Both my kids have had bronchs prior to sinus surgery. I was opposed to it the first time, thinking it was unnecessary. But it was then that they first found the mycobacteria in Jesse. If I had declined, we wouldn't have known about the presence of this bug until the boys became sick. Knowing it when we did gave us two years of testing so this spring when Josh got sick, we had a plan for what to do.</end quote></div>

ooops that was me, Jane
 
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