SARAH re;PA

[Guest guest]

,

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

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