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Abby's CF team of doctors was split on whether or not to treat her

recently cultured Pa. The bronch did not grow Pa in July but she has

cultured via throat swab 3 times in a row. They decided to do one

round of Tobi and Cipro. We don't know what to think. We're afraid

if we just keep chasing the Pa around it's going to become

resistant. If anything I would think we would blow it away with the

big guns like IV stuff for 2 or 3 weeks like they do in Denmark. If

we leave it alone I'm afraid it will get in the lungs and become

chronic. Last time we did Tobi and Cipro she cultured it again just

a few days after the cycle was over. However it was only a two week

cycle. (?)

If anyone has any ideas, let me know.

Thanks,

Joe

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Joe,

this is all new to me too. I know you are worried. My cf

coordinator told me that there is a huge debate in the medical cf

community about how to treat early pa cultures. She said there is a

small study that shows that inhaled TOBI had the same success at

IV's, so it leaves the doctors wondering which is really the best

course to take. They have already discussed with us the possibility

of doing IV's if the TOBI does not help after one cycle. I am all

for being aggressive. I just wish a doctor could walk in a room and

be able to give us a protocol to follow and know with certainty it

would be successful. It seems to be one being guessing game.

Sara

> Abby's CF team of doctors was split on whether or not to treat her

> recently cultured Pa. The bronch did not grow Pa in July but she

has

> cultured via throat swab 3 times in a row. They decided to do one

> round of Tobi and Cipro. We don't know what to think. We're

afraid

> if we just keep chasing the Pa around it's going to become

> resistant. If anything I would think we would blow it away with

the

> big guns like IV stuff for 2 or 3 weeks like they do in Denmark.

If

> we leave it alone I'm afraid it will get in the lungs and become

> chronic. Last time we did Tobi and Cipro she cultured it again

just

> a few days after the cycle was over. However it was only a two

week

> cycle. (?)

>

> If anyone has any ideas, let me know.

>

> Thanks,

>

> Joe

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Joe,

We were told the same thing as Sara. Evidently, there are two

schools of thought. One believes that the way to go is IV and the

other one believes Tobi does the trick.

We are doing tobi and just finished levaquin, 3 weeks course, and

will continue Tobi for a while. Somebody here, I forget who, said

that they had been successful with a 3 month course of Tobi.

I do not know if I helped you but it is very frustrating. As Sara, I

feel like doctors still do no know what will work and I believe the

reason is because of the pathology of the disease. One thing

scientists do agree on is that the disease manifests on each patient

differently, it is believed, correct me if I am wrong, that the

penetration of the gene will make the disease more or less severe.

Hence, what may work for one patient may not be as effective for

another one.

Love to you and your precious brood,

> > Abby's CF team of doctors was split on whether or not to treat

her

> > recently cultured Pa. The bronch did not grow Pa in July but she

> has

> > cultured via throat swab 3 times in a row. They decided to do

one

> > round of Tobi and Cipro. We don't know what to think. We're

> afraid

> > if we just keep chasing the Pa around it's going to become

> > resistant. If anything I would think we would blow it away with

> the

> > big guns like IV stuff for 2 or 3 weeks like they do in Denmark.

> If

> > we leave it alone I'm afraid it will get in the lungs and become

> > chronic. Last time we did Tobi and Cipro she cultured it again

> just

> > a few days after the cycle was over. However it was only a two

> week

> > cycle. (?)

> >

> > If anyone has any ideas, let me know.

> >

> > Thanks,

> >

> > Joe

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My almost 2 year old is in a similar position to Abby in that he is

intermittenly culturing non mucoid PA and we have gone through many

debates about whether or not to treat and if yes, how?

My only comment since I obviously have no real answers is to remember

a hospitalization and IVs do not come without risks, was

hospitalized with RSV for 2 nights last winter and has cultured MRSA

ever since. Not a problem now but may be in the long run.

My feeling right now is to keep him away from the hospital as much as

possible.

If you decide to go for the IV's look into doing some of the time at

home!

Tina mom to almost 2 with CF and Zoe 3 no CF

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Our son has cultured PA twice over the last year and a half and now just

came back with small amounts of MRSA, no PA. We have done two rounds of 28

day inhaled Tobi. Our docs opinion is try Tobi while he is asymptomatic,

see if it works. It he begins having issues with PA, then he would move on

to other antibiotics, possibly IV. I tend to agree given the small study

that said inhaled Tobi is as effective as IVs. Plus, the 28 day on off

regimen has been shown in studies to limit significantly resistance.

I listened to some of the CRFI 2003 conference on the www.Cfri.org website

(go to the bottom of the home page and there is a link to mp3 files). One

track in particular was interesting titled 'Latest research'. A research

doctor talked about his program of using blood tests and CT scans in

conjunction with swabs to detect PA. He said that you can find it 6-12

months earlier than cultures and treat it quickly and strongly, and

preventing kids from having to go to the hospital once PA has dug in. The

last 3 files in the series are parents in our same boat asking questions

about how to get thier clinics on board. very interesting...

PR dad to 3yr wCF, 1yr wocf

Sincerely,

PR

>

>Reply-To: cfparents

>To: cfparents

>Subject: To treat or not to treat

>Date: Sat, 15 Nov 2003 15:14:36 -0000

>

>Abby's CF team of doctors was split on whether or not to treat her

>recently cultured Pa. The bronch did not grow Pa in July but she has

>cultured via throat swab 3 times in a row. They decided to do one

>round of Tobi and Cipro. We don't know what to think. We're afraid

>if we just keep chasing the Pa around it's going to become

>resistant. If anything I would think we would blow it away with the

>big guns like IV stuff for 2 or 3 weeks like they do in Denmark. If

>we leave it alone I'm afraid it will get in the lungs and become

>chronic. Last time we did Tobi and Cipro she cultured it again just

>a few days after the cycle was over. However it was only a two week

>cycle. (?)

>

>If anyone has any ideas, let me know.

>

>Thanks,

>

>Joe

>

_________________________________________________________________

MSN Messenger with backgrounds, emoticons and more.

http://www.msnmessenger-download.com/tracking/cdp_customize

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Thanks to all who responded. P R, when the doctors spoke of treating

it " quickly and strongly " what was he suggesting using? Tobi? Or

did he imply IV a.b's? Usually the 28 day on 28 day off Tobi regimen

is for management of mucoid Pa - I'm pretty sure although our docs

almost put Abby on it for a year when she was released from the

hospital the first time. They decided at the last minute not to

since she had a clear swab.

The thing that scares me the most is the possibility of chasing the

Pa around and making it retreat down deep and possibly build up

resistance - when you could pound the hell out of it with IV drugs

AND Tobi like the Danes do. Only they use Colistin. Ever seen how

low their CF w/Pa numbers are? They must be doing something right.

Anyway, I appreciate y'all taking the time to respond, and it did

help.

Joe

> Our son has cultured PA twice over the last year and a half and now

just

> came back with small amounts of MRSA, no PA. We have done two

rounds of 28

> day inhaled Tobi. Our docs opinion is try Tobi while he is

asymptomatic,

> see if it works. It he begins having issues with PA, then he would

move on

> to other antibiotics, possibly IV. I tend to agree given the small

study

> that said inhaled Tobi is as effective as IVs. Plus, the 28 day on

off

> regimen has been shown in studies to limit significantly resistance.

>

> I listened to some of the CRFI 2003 conference on the www.Cfri.org

website

> (go to the bottom of the home page and there is a link to mp3

files). One

> track in particular was interesting titled 'Latest research'. A

research

> doctor talked about his program of using blood tests and CT scans

in

> conjunction with swabs to detect PA. He said that you can find it

6-12

> months earlier than cultures and treat it quickly and strongly,

and

> preventing kids from having to go to the hospital once PA has dug

in. The

> last 3 files in the series are parents in our same boat asking

questions

> about how to get thier clinics on board. very interesting...

>

> PR dad to 3yr wCF, 1yr wocf

>

>

>

> Sincerely,

> PR

>

>

>

>

>

> >From: " Joe " <reamsfarm@m...>

> >Reply-To: cfparents

> >To: cfparents

> >Subject: To treat or not to treat

> >Date: Sat, 15 Nov 2003 15:14:36 -0000

> >

> >Abby's CF team of doctors was split on whether or not to treat her

> >recently cultured Pa. The bronch did not grow Pa in July but she

has

> >cultured via throat swab 3 times in a row. They decided to do one

> >round of Tobi and Cipro. We don't know what to think. We're

afraid

> >if we just keep chasing the Pa around it's going to become

> >resistant. If anything I would think we would blow it away with

the

> >big guns like IV stuff for 2 or 3 weeks like they do in Denmark.

If

> >we leave it alone I'm afraid it will get in the lungs and become

> >chronic. Last time we did Tobi and Cipro she cultured it again

just

> >a few days after the cycle was over. However it was only a two

week

> >cycle. (?)

> >

> >If anyone has any ideas, let me know.

> >

> >Thanks,

> >

> >Joe

> >

>

> _________________________________________________________________

> MSN Messenger with backgrounds, emoticons and more.

> http://www.msnmessenger-download.com/tracking/cdp_customize

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Hey Joe,

Another thing to think about is that Abby is really young. IV's do

not come with some risk, after all is going straight into her veins.

One of our members have a cf child that had some kidney damaged due

to IV's. So, if the doctors put her on IV, emphasize to the health

care people, to check levels on her blood. I am not trying to scare

you, but you may know by now how I feel about health care workers in

this country.

> > Our son has cultured PA twice over the last year and a half and

now

> just

> > came back with small amounts of MRSA, no PA. We have done two

> rounds of 28

> > day inhaled Tobi. Our docs opinion is try Tobi while he is

> asymptomatic,

> > see if it works. It he begins having issues with PA, then he

would

> move on

> > to other antibiotics, possibly IV. I tend to agree given the

small

> study

> > that said inhaled Tobi is as effective as IVs. Plus, the 28 day

on

> off

> > regimen has been shown in studies to limit significantly

resistance.

> >

> > I listened to some of the CRFI 2003 conference on the

www.Cfri.org

> website

> > (go to the bottom of the home page and there is a link to mp3

> files). One

> > track in particular was interesting titled 'Latest research'. A

> research

> > doctor talked about his program of using blood tests and CT scans

> in

> > conjunction with swabs to detect PA. He said that you can find

it

> 6-12

> > months earlier than cultures and treat it quickly and strongly,

> and

> > preventing kids from having to go to the hospital once PA has dug

> in. The

> > last 3 files in the series are parents in our same boat asking

> questions

> > about how to get thier clinics on board. very interesting...

> >

> > PR dad to 3yr wCF, 1yr wocf

> >

> >

> >

> > Sincerely,

> > PR

> >

> >

> >

> >

> >

> > >From: " Joe " <reamsfarm@m...>

> > >Reply-To: cfparents

> > >To: cfparents

> > >Subject: To treat or not to treat

> > >Date: Sat, 15 Nov 2003 15:14:36 -0000

> > >

> > >Abby's CF team of doctors was split on whether or not to treat

her

> > >recently cultured Pa. The bronch did not grow Pa in July but

she

> has

> > >cultured via throat swab 3 times in a row. They decided to do

one

> > >round of Tobi and Cipro. We don't know what to think. We're

> afraid

> > >if we just keep chasing the Pa around it's going to become

> > >resistant. If anything I would think we would blow it away with

> the

> > >big guns like IV stuff for 2 or 3 weeks like they do in

Denmark.

> If

> > >we leave it alone I'm afraid it will get in the lungs and become

> > >chronic. Last time we did Tobi and Cipro she cultured it again

> just

> > >a few days after the cycle was over. However it was only a two

> week

> > >cycle. (?)

> > >

> > >If anyone has any ideas, let me know.

> > >

> > >Thanks,

> > >

> > >Joe

> > >

> >

> > _________________________________________________________________

> > MSN Messenger with backgrounds, emoticons and more.

> > http://www.msnmessenger-download.com/tracking/cdp_customize

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Point taken. I still believe the reason she still has the stuff is

that they did a shotty job administering the drugs in the hospital.

She was day 5 into the treatment before they had the drug level high

enough. They would come in an hour after her dose to get a peak or

an hour before to get a valley. I loved the nurses but fireballs

they weren't. (Some anyway.)

Joe

> > > Our son has cultured PA twice over the last year and a half and

> now

> > just

> > > came back with small amounts of MRSA, no PA. We have done two

> > rounds of 28

> > > day inhaled Tobi. Our docs opinion is try Tobi while he is

> > asymptomatic,

> > > see if it works. It he begins having issues with PA, then he

> would

> > move on

> > > to other antibiotics, possibly IV. I tend to agree given the

> small

> > study

> > > that said inhaled Tobi is as effective as IVs. Plus, the 28

day

> on

> > off

> > > regimen has been shown in studies to limit significantly

> resistance.

> > >

> > > I listened to some of the CRFI 2003 conference on the

> www.Cfri.org

> > website

> > > (go to the bottom of the home page and there is a link to mp3

> > files). One

> > > track in particular was interesting titled 'Latest research'.

A

> > research

> > > doctor talked about his program of using blood tests and CT

scans

> > in

> > > conjunction with swabs to detect PA. He said that you can find

> it

> > 6-12

> > > months earlier than cultures and treat it quickly and

strongly,

> > and

> > > preventing kids from having to go to the hospital once PA has

dug

> > in. The

> > > last 3 files in the series are parents in our same boat asking

> > questions

> > > about how to get thier clinics on board. very interesting...

> > >

> > > PR dad to 3yr wCF, 1yr wocf

> > >

> > >

> > >

> > > Sincerely,

> > > PR

> > >

> > >

> > >

> > >

> > >

> > > >From: " Joe " <reamsfarm@m...>

> > > >Reply-To: cfparents

> > > >To: cfparents

> > > >Subject: To treat or not to treat

> > > >Date: Sat, 15 Nov 2003 15:14:36 -0000

> > > >

> > > >Abby's CF team of doctors was split on whether or not to treat

> her

> > > >recently cultured Pa. The bronch did not grow Pa in July but

> she

> > has

> > > >cultured via throat swab 3 times in a row. They decided to do

> one

> > > >round of Tobi and Cipro. We don't know what to think. We're

> > afraid

> > > >if we just keep chasing the Pa around it's going to become

> > > >resistant. If anything I would think we would blow it away

with

> > the

> > > >big guns like IV stuff for 2 or 3 weeks like they do in

> Denmark.

> > If

> > > >we leave it alone I'm afraid it will get in the lungs and

become

> > > >chronic. Last time we did Tobi and Cipro she cultured it

again

> > just

> > > >a few days after the cycle was over. However it was only a

two

> > week

> > > >cycle. (?)

> > > >

> > > >If anyone has any ideas, let me know.

> > > >

> > > >Thanks,

> > > >

> > > >Joe

> > > >

> > >

> > >

_________________________________________________________________

> > > MSN Messenger with backgrounds, emoticons and more.

> > > http://www.msnmessenger-download.com/tracking/cdp_customize

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----- Original Message -----

....when you could pound the hell out of it with IV drugs

AND Tobi like the Danes do. Only they use Colistin. Ever seen how low

their CF w/Pa numbers are? They must be doing something right.

Hi Joe,

the danish numbers of Pa-infections have been low long before TOBI came to

the market. It is only available in Denmark since 2000.

The one thing that the Danes do very right imho is, that they strictly

seperate the patients with Pseudomonas and those without. They have

different clinic days for positive and negative patients and during hospital

stays they have separate wards. And so they have hardly any new pseudomonas

infections. Although there is no medical proof it's obvious to me that

patient to patient infection is a far greater risk that catching pseudomonas

from the environment.

Peace

Torsten, dad of Fiona 6wcf and Sebastian 6months wocf

e-mail: torstenkrafft@...

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The Danes really have it down! I have heard Neils Hoiby speak many

times--many in the audience wished that we could move to Denmark, and take

our families with

us! Love to all at cfparents!

n Rojas

Re: Re: To treat or not to treat

>

>

> ----- Original Message -----

>

> ...when you could pound the hell out of it with IV drugs

> AND Tobi like the Danes do. Only they use Colistin. Ever seen how low

> their CF w/Pa numbers are? They must be doing something right.

>

> Hi Joe,

>

> the danish numbers of Pa-infections have been low long before TOBI came to

> the market. It is only available in Denmark since 2000.

>

> The one thing that the Danes do very right imho is, that they strictly

> seperate the patients with Pseudomonas and those without. They have

> different clinic days for positive and negative patients and during

hospital

> stays they have separate wards. And so they have hardly any new

pseudomonas

> infections. Although there is no medical proof it's obvious to me that

> patient to patient infection is a far greater risk that catching

pseudomonas

> from the environment.

>

> Peace

> Torsten, dad of Fiona 6wcf and Sebastian 6months wocf

> e-mail: torstenkrafft@...

>

>

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

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