Need opinions... please read

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HelpCureCF

New member
What does everyone else do?
My daughter who is 21 months old, just cultured PA for the 1st time last month.
She just finished 28 days of Tobi/Cipro. On day 29 we did a repeat culture which we are waiting for the results..(should hear on Monday)
It was non mucoid..if that helps....
Her doc wants us to do 28 days on/28 days off of Tobi if she cultures negative for PA.......he said that you can't be sure it's gone without doing a broncoscope (which he feels is very invasive).
I have a girlfriend who also has a child with Cf and she says that her doc does not do any more Tobi if her child cultures negative for PA.......until he cultures postive again......our doc feels that you won't culture it again if you take Tobi 28 days off/28 days off.....
Opinions needed desperately...I hate that docs don't do things the same way...and we are constantly comparing treatments.....
and are arguing over who is right.....it is taking it's toll on our friendship. Just so you know....my friends kid goes to the CF center that we left..(we hated it there....we didn't like that CF kids were all in the waiting room together playing with toys ?!??!?! and seen on the same day)...My daughter goes to a pediatric Pulmonolgist and a pediatric Gastro doc..cf kids are stratigically (sp?) scattered throughout the month...and they never come in contact with another...and we couldn't be happier with our daughter's care...but need opinions on how your providers treat PA.
Thank you so much in advance.......
 
D

DEES4

New member
My 2 1/2 year old son cultured PA (non mucoid also) a few months back. We did the Tobi for 28 days and then he cultured negative and no further treatment was done. I also hate how all clinics are different........you would think they would all go by the same guidelines....it drives me crazy.
Hope your daughter is negative this time....keep us updated.
Carrie
 
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HelpCureCF

New member
wow Amy !!
You weren't kidding....your opinion was nothing like either of ours....thank you so much for responding. You would do a broncoscope on a 21 month old that cultured PA once and has no symptoms at all? interesting......
 
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HelpCureCF

New member
Thanks Carrie. Looks like your clinic does things the way my friends clinic does. So confusing and I just want to do the "right" thing............PLEASE kEEP the responses coming !!!!
 
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HelpCureCF

New member
amy....you mentioned sputum culture..my daughter gets throat cultures ...is that the same thing??? She doesn't cough or produce sputum
 
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coltsfan715

New member
I agree with Amy about being agressive with treatment. At the same time though I think that trying the TOBI first was a good move. I have noticed with alot of kids I have met with CF and in having talked to their parents - the first time they culture Psuedo they all did TOBI and it seemed to eradicate the problem. I think another round of TOBI is not a bad idea even if the culture comes back negative because as Amy said your daughter could have simply coughed sputum from an area that does not have the Psuedo. I kind of see the extra month of TOBI as being taken for good measure. If the doc wanted to put her on an indefinite regimine of 28 days on/off, even if her cultures come back negative, then I would maybe question why.

As for the bronch. I have had one, but personally do not see why you would want to put your daughter through that if you did not have too. I have only had 1 and it was done roughly a yr ago in attempts to clear a blockage in my airway that was starting to cause a collapse of my lung. The doc took a ton of mucus out of my airways and ran cultures on several samples to have them come back showing I was NOT culturing Psuedo. To put this in perspective for you I was 23 at the time and have cultured Psuedo on every culture that I can remember - at least 10 years back probably more - with exception for the cultures that were retrieved from the bronch. Yes you can get into other areas within the lungs with a bronch and it may be more accurate in some ways, but they are not failproof either. That is why I do not think that I would go that route if it were my child ... unless there was a serious problem that they could not pinpoint and they thought a bronch would help. I am not saying that they are bad, but like your doc was saying they are invasive. If you are interested in going that route I would ask him to explain to you the details of it and risks/benefits and so on.

I hope the cultures come back negative and that the next dose of TOBI - if she does indeed take another 28days worth - goes well ... and quickly.

Take Care,
Lindsey
 
M

Mockingbird

New member
Personally, I perfer the less aggressive treatments because it fits with the life I am trying to live. If I'm doing aggressive treatments all the time, I just end up with a bad attitude and end up getting sick anyway. With the less aggressive treatments, however, I am happier and have less stress because I am able to accomplish the things I want to acomplish, and I find that I am healthier.

I am glad doctors do things differently, because people are all different from each other, and therefore require different care. The next time you and your friend compare treatments, remember that different treatments work for different people, and you're really just comparing apples to oranges.
 
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HelpCureCF

New member
mockingbird,
Thanks for your reply. I agree with you that people are different, although...I thought that PA is PA and it would be nice if there was one right wayb to treat it and get rid of it...love the art work
 
J

JRPandTJP

New member
OUr son culture PA at 15 months. We opted for the inhaled TOBI, 28 days, recultured after treatment and was negative...has stayed negative and it now 26 months. We added inhaled and oral GSH though around 18 months, so that may account for the negatives (no guarantees of course). Our clinic said they are aggressive with PA the first culture but don't recommend IV antibiotics typically because they, over time (since most will need it over the course of childhood) can cause hearing impairment and is overkill in most cases. It was an option if we wanted it though.

IF PA can be hiding anytime, even with neg. cultures and without causing symptoms, why be so aggressive? Are you suggesting rountine IV antibiotics as a way of preventing PA? I think this would be detrimental to a little ones long term health, but that's my opinion.

I like to take a more preventative approach through diet, nutrition and supplements to give his body what it need to fight infection, keep inflammation at bay, and keep GSH in the system/lungs to keep bacteria from setting up shop. Of course keeping tabs on it as best we can through cultures, clinic appt., and watching his symtoms (weight, appetite, growth, coughing, mucus production, ect) is critical too.

Truthfully, I don't think any one way is perfect, but for us the latter sits better. We are all just trying to do our best with the information we are given and find on our own.
 
A

anonymous

New member
My son cultured pseudomonas two years ago at his first birthday. I wanted to do IV's, but his doctor told me no he wanted to try inhaled tobi. The Tobi worked and my son has not cultured it again. He inhaled the Tobi for 3 months. Then we started it again after three months and he had bronchial spasms. Perhaps there is a reason why they say month on-month off.

Megan- my kids take the oral GSH (1/2 tsp per day). I buy it from Wellness Pharmacy
<a target=_blank class=ftalternatingbarlinklarge href="http://www.wellnesshealth.com/default.asp?id=5
">http://www.wellnesshealth.com/default.asp?id=5
</a>
Sharon, mom of Sophia, 5 and Jack, 3 both with cf
 
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anonymous

New member
My understanding is that if you're aggressive at first you can stop the strain from really getting settled in and the lungs colonized (If it hangs around for a while it becomes a mucoid slimey colonization that becomes permanent) That they used to think that they couldn't stop an infection from becoming a permanent colonization but now they find they can. (This old idea is why I think the older adult CF population sometimes replies "why worry about PA, you'll get colonized with it anyway" which is true, but doesn't have to mean you'll become colonized after the first infection.)

My understanding of why inhaled rather than IV is become inhaled is not systemic and so therefore avoids the more severe side effects inherent in systemic. Also systemic means that it goes after any bacteria anywhere in the body (not just the lungs) and therefore runs the risk (if the kid is colonized with bacteria elsewhere) of making that other bacteria resistent to tobramycin.
 
A

anonymous

New member
Thanks Sharon. I am going to order some and check with our CF doctor. Does it have a taste? Why did you start using it and have you noticed any positve outcomes?

Megan
 
A

Alyssa

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

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



amy....you mentioned sputum culture..my daughter gets throat cultures ...is that the same thing??? She doesn't cough or produce sputum</end quote></div>



same thing. they do a throat culture to induce sputum production.</end quote></div>




****
Amy and HelpCureCF -- I understand your question differently than Amy (I think)

I do not think a throat culture (also called throat swab) is the same thing as a sputum culture. When someone cannot cough up a sputum sample, they do a throat swab -- they use basically a big q-tip and wipe the back of the throat -- from that they can tell what is growing in the throat, which "might" indicate what is growing in the lungs.

A sputum culture, checks what is growing in that particular sample of gunk coughed up out of the lungs.
 
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rcq925

New member
I agree with Amy!

My duaghter Hayley is 2½ and also just cultured PA for the first time. My doctor wanted to do Cipro and I pushed for the IV's and won! SHe did two weeks of Tobramycin and Fortaz. The IV antibiotics can be very safe, if they do the appropriate blood level checks, which we do at least every two days while she is on IV Tobramycin. She had a followup culture which was clear and has not done any further treatments.

In my opinion, while they are young and especially if it is the first PA culture you should do IV's because as Amy said it gets in the blood stream and to the infection faster with a better chance of erradicating the PA!!

Good luck with whatever you decide!!
 
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