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Re: PA and Tobi question

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I do and I would continue. There are many schools of thought on this but I

think the PA hides. When you have an infection you run the risk of it acting

up and the kids getting sicker....

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

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e,

Abby (16 mos.) just finished a cycle of Tobi and Cipro because of non-

mucoid Pa growing from a throat culture. After reading some things

and writing with M. I learned that some places (Canada for one)

keep the Tobi going until it hasn't shown up in at least 2

consecutive cultures spaced 3 mos. apart. I asked Abby's doctor

about doing this with Abby and he didn't want to. The main reason

was because he said studies showed that it wasn't productive since it

didn't seem to make a difference in the Pa reappearing. I can't

remember exactly how he put it but he read an entire abstract to me

over the phone which was the study he was basing his decision on.

Secondary reasons were the medicine causing side effects and her age.

I've heard information contrary to that however, such as that from

Canada. We have stopped the Tobi at 31 days (we had some leftover)

and are waiting on the official results from her culture. I plan to

have several more cultures done if this one is neg. for Pa.

Joe

> For those of you with children ( or you yourselves) who have had

PA,

> but it has not shown up for months or years.....do you still do

> Tobi? 's doctor wants her to continue doing Tobi even though

> her culture came back neg for PA. I know that does not necessarily

> mean anything and of course I am going t keeep giving her

> treatments. I was just wondering if her cultures keep coming back

> negative will we still have to do treatments? Does this make sense?

>

> Love,

> e, who is 3 inches shorter from all of the shopping/walking

I

> have been doing. But am I getting any thinner? NO! Oh it is so not

> fair!

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e,

I love how you signed this post. I think that I am shrinking too,

but I'm a grandma so I am supposed to shrink. I just wish that I

would shrink in diameter also.

Gale

> For those of you with children ( or you yourselves) who have had

PA,

> but it has not shown up for months or years.....do you still do

> Tobi? 's doctor wants her to continue doing Tobi even though

> her culture came back neg for PA. I know that does not necessarily

> mean anything and of course I am going t keeep giving her

> treatments. I was just wondering if her cultures keep coming back

> negative will we still have to do treatments? Does this make sense?

>

> Love,

> e, who is 3 inches shorter from all of the shopping/walking

I

> have been doing. But am I getting any thinner? NO! Oh it is so not

> fair!

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We just recently had 's culture come back negative for PA for the first

time ever. She has had it since diagnosis. We are keeping her on the Tobi as a

preventative measure if it is REALLY not there. also, since sometimes the

levels are so low that the culture comes back neg but it might still be there,

as a just in case type of thing. If she remains free of the PA for a while then

the doc might take her off of the Tobi. (I hope this made sense to you!)

mom of 5 with CF and 10 weeks along

PA and Tobi question

For those of you with children ( or you yourselves) who have had PA,

but it has not shown up for months or years.....do you still do

Tobi? 's doctor wants her to continue doing Tobi even though

her culture came back neg for PA. I know that does not necessarily

mean anything and of course I am going t keeep giving her

treatments. I was just wondering if her cultures keep coming back

negative will we still have to do treatments? Does this make sense?

Love,

e, who is 3 inches shorter from all of the shopping/walking I

have been doing. But am I getting any thinner? NO! Oh it is so not

fair!

-------------------------------------------

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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Hi, e

I am an aunt, not a mom, so I don't have ALL the facts, but as far as I know my

niece will be on Tobi all the time regardless of culture. I remember asking my

sister how long and she thought would always be on it. So, I, as the aunt,

have been wondering the same thing. Not that it will matter because if 's

doctors want her on it, she will stay on it. I imagine that sometimes something

will culture negative because there is so little of it. If you do without the

tobi, couldn't it just begin to grow again? On the flip side, if it cultures

negative for lengthy periods of time do you still continue? Is there a chance of

resistance down the road? I, too, would be interested in what others have to

say.

Love,

Jill- loving aunt to , 10, and many others.

PA and Tobi question

For those of you with children ( or you yourselves) who have had PA,

but it has not shown up for months or years.....do you still do

Tobi? 's doctor wants her to continue doing Tobi even though

her culture came back neg for PA. I know that does not necessarily

mean anything and of course I am going t keeep giving her

treatments. I was just wondering if her cultures keep coming back

negative will we still have to do treatments? Does this make sense?

Love,

e, who is 3 inches shorter from all of the shopping/walking I

have been doing. But am I getting any thinner? NO! Oh it is so not

fair!

-------------------------------------------

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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