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Re: re;PA

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,

Thanks for the encouragement! What is colistin?? Is it like Tobi? I

have heard a few people talk about it but never knew what it is. WE

will stick with this and fight to get rid of the PA!

Thanks

> ,

>

> Eilish hasn't cultured it for 2 years. But she was only 2 when she

> first cultured it, and I thought it was the end of the world. So we

> started on 3 months of Cipro. and Colistin and then had a

broncoscopy to

> see if its still there which it was so the 3 months was repeated

again.

> This cycle went on for 12 months, but it finally went and hasn't

> reappeared. Stick with it.

>

> (Australia)

>

> Cutured positive for PA...new to Tobi..HELP!

>

>

> Ok I need some help here.

>

> WE had a clinic visit last week. Hh has gained 3 pounds since

> September and is now at the 50th percentile for height and weight.

> They did a culture just to check. I was feeling pretty good about

> her health...THat was a REALLY stupid thing to do..the minute I let

> my guard down something always happens! Well I called today

because

> I had not heard yet and the news was not good! She has cultured

PA.

> I THOUGHT she had never cultured it before (no one had told us that

> she did) but apparently almost 2 years ago she cultured for it but

> then has not again until now. Thank God that our clinic has JUST

> decided that whenever someone cultures PA they are going to try to

> erradicate it. We will be starting Cipro and Tobi both twice a day

> as soon as we can get the meds. Here are my questions: I know I

can

> give the Tobi AFTER her vest treatment (which I give her albuterol

> during) but when I asked the respiratory therapist how much BEFORE

> the vest treatment can I give it to her she did not know??? I want

> to try to get the treatments about 12 hours apart and I am not sure

> that her bedtime will be the best time. (I have to currently get

her

> up at 6am to do her morning routine but I wil have to add about 1/2

> hour to that now) So her 8pm bedtime may not be the best time to

do

> the Tobi.

>

> I would like to do it like at 6p.m. with her vest 1 hour to 1 1/2

> hours after it. Has anyone ever been told that they can do the

Tobi

> a given length of time BEFORE a vest treatment?????

>

> Also what else do I need to know about Tobi and Cipro? A friend

said

> she herad that you had to be careful when to give the Adeks with

> these treatments???? The Clinic did not mention this?

>

> I am trying to focus on the fight but am really upset that she has

> PA. I hoped that we could avoid it until much later (Hannah will

be

> 3 on January 11) I realize we have been very forunate so far in

that

> she has not been really respiratorally involved. Her only hospital

> stay has been for Other cf problems.

>

> WE would appreciate ANY advice or words of wisdom. You can bet we

> are going to focus on making this a GREAT Christmas and then mabye

we

> will find out that the meds worked and we got rid of the PA..

>

>

> Hugs to all the little ones!!!

>

> mommy to Hannah wcf and Tommy wocf/asthma

>

>

>

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

> 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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