Re: Culture's are back........

[Guest guest]

Katy,

Our Abby has cultured non-mucoid Pa off and on since being diagnosed

at 5 mos. She also is now on a course of TOBI and Cipro. The Pa

hasn't caused any symptoms whatsoever but we're hoping to get rid of

it at least for awhile. I'm thinking we'll have Abby on TOBI until

she's had a couple of clear (Pa-free, at least) throat cultures.

Abby's B-day is 8-7-02. She is doing awesome even though she has

been culturing this bug. She weighs 28 lbs. and is 32 " . Like you,

we hope and pray she stays healthy and will do whatever we can to see

to it. Good luck with the TOBI and if you need any pointers I'll be

glad to share them. We're on our 3rd round of it at home.

Joe (Dad of Kelsi, 7; Chloe, 2.5 and Abby 15 mos. w/cf)

> Hi all! Well, Piper went to clinic on Monday for her regular

checkup, and since she has cultured Staph twice since July, they

repeated her throat swab. We got a call from the CF Specialty Nurse

today to let us know that Piper had cultured Staph again along with

Pseudomonas. It was kind of a low blow for us, we knew that

eventually she would culture it, but we had hoped that it would be a

while before she did. Anyway, her doc is putting her on Tobi and

Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

Zantac, Prevacid, Reglan, and her enzymes).

>

> I just needed to get this out, our families don't understand the

significance of her culturing this, but oh well, I guess ignorance is

bliss........

>

>

> Katy

> Mom to Austin 4 no CF & Piper 16 months w/CF

>

>

>

>

>

>

>

[Guest guest]

Hi Katy,

Dont worry I was devastated when my now 2 year old, cultured staph and

pseudomonas...he was only 8 months old at the time. But in reality they all get

it at some time or another, it doesnt really seem to change things much, they

just give you different antibiotics when they get sick. My family didnt seem to

understand why I was upset either...I guess it just seemed like we were getting

deeper and deeper into the disease!!! Hope you are feeling better and dont

worry!!

-mum to , 2 1/2 with CF

Katy wrote:

Hi all! Well, Piper went to clinic on Monday for her regular checkup, and since

she has cultured Staph twice since July, they repeated her throat swab. We got

a call from the CF Specialty Nurse today to let us know that Piper had cultured

Staph again along with Pseudomonas. It was kind of a low blow for us, we knew

that eventually she would culture it, but we had hoped that it would be a while

before she did. Anyway, her doc is putting her on Tobi and Cipro in addition to

her other meds (albuterol, Vitamax, Zyrtec, Zantac, Prevacid, Reglan, and her

enzymes).

I just needed to get this out, our families don't understand the significance of

her culturing this, but oh well, I guess ignorance is bliss........

Katy

Mom to Austin 4 no CF & Piper 16 months w/CF

[Guest guest]

Joe,

Thanks so much!!! I don't know if Piper's PA is non-mucoid or not. I was just

so overwhelmed with the news I didn't even think to ask. What is the difference

between muciod and non-mucoid?

Katy

mom to Austin 4 no CF & Piper 16 months w/CF

Joe wrote:

Katy,

Our Abby has cultured non-mucoid Pa off and on since being diagnosed

at 5 mos. She also is now on a course of TOBI and Cipro. The Pa

hasn't caused any symptoms whatsoever but we're hoping to get rid of

it at least for awhile. I'm thinking we'll have Abby on TOBI until

she's had a couple of clear (Pa-free, at least) throat cultures.

Abby's B-day is 8-7-02. She is doing awesome even though she has

been culturing this bug. She weighs 28 lbs. and is 32 " . Like you,

we hope and pray she stays healthy and will do whatever we can to see

to it. Good luck with the TOBI and if you need any pointers I'll be

glad to share them. We're on our 3rd round of it at home.

Joe (Dad of Kelsi, 7; Chloe, 2.5 and Abby 15 mos. w/cf)

> Hi all! Well, Piper went to clinic on Monday for her regular

checkup, and since she has cultured Staph twice since July, they

repeated her throat swab. We got a call from the CF Specialty Nurse

today to let us know that Piper had cultured Staph again along with

Pseudomonas. It was kind of a low blow for us, we knew that

eventually she would culture it, but we had hoped that it would be a

while before she did. Anyway, her doc is putting her on Tobi and

Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

Zantac, Prevacid, Reglan, and her enzymes).

>

> I just needed to get this out, our families don't understand the

significance of her culturing this, but oh well, I guess ignorance is

bliss........

>

>

> Katy

> Mom to Austin 4 no CF & Piper 16 months w/CF

>

>

>

>

>

>

>

[Guest guest]

Katy,

My cultured PA for the first time in October. I panicked! I

posted a message on here explaining my dismay and the others here

gave me such wonderful feedback that I realized that this is not the

end of the world. I feel so much better now! I totally understand

how you feel and can sympathize. The main thing I got from everyone

here is that things could be worse!

Hang in there, she is going to be ok

e, mom to a.k.a. Contessa jr. ( because she is in a

frightful mood this evening) 10 wcf and Ian 13 nocf.

[Guest guest]

e,

Thank you!! This list is so wonderful because there are many times when I just

need reassurement (like this one). I am still new to this disease as Piper was

diagnosed a year ago on the 15th. So this has not been the best of weeks for

me. But thank you again, from the bottom of my heart and I hope that your

is doing good too!!

Katy

mom to Austin 4 no CF & Piper 16 months w/CF

e wrote:

Katy,

My cultured PA for the first time in October. I panicked! I

posted a message on here explaining my dismay and the others here

gave me such wonderful feedback that I realized that this is not the

end of the world. I feel so much better now! I totally understand

how you feel and can sympathize. The main thing I got from everyone

here is that things could be worse!

Hang in there, she is going to be ok

e, mom to a.k.a. Contessa jr. ( because she is in a

frightful mood this evening) 10 wcf and Ian 13 nocf.

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

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.

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

[Guest guest]

PA is just a bacterium, also commonly found on burn patients--Mucoid PA is a

bio

film which covers the cells of the airways and prevents antibiotic treatment

from

reaching the airway cells--this is the " nutshell " explanation. I do not

have mucoid--

yet. Love, n Rojas, who wishes you and your child the very best

Re: Re: Culture's are back........

> Joe,

>

> Thanks so much!!! I don't know if Piper's PA is non-mucoid or not. I was

just so overwhelmed with the news I didn't even think to ask. What is the

difference between muciod and non-mucoid?

>

> Katy

> mom to Austin 4 no CF & Piper 16 months w/CF

>

> Joe wrote:

> Katy,

>

> Our Abby has cultured non-mucoid Pa off and on since being diagnosed

> at 5 mos. She also is now on a course of TOBI and Cipro. The Pa

> hasn't caused any symptoms whatsoever but we're hoping to get rid of

> it at least for awhile. I'm thinking we'll have Abby on TOBI until

> she's had a couple of clear (Pa-free, at least) throat cultures.

> Abby's B-day is 8-7-02. She is doing awesome even though she has

> been culturing this bug. She weighs 28 lbs. and is 32 " . Like you,

> we hope and pray she stays healthy and will do whatever we can to see

> to it. Good luck with the TOBI and if you need any pointers I'll be

> glad to share them. We're on our 3rd round of it at home.

>

>

> Joe (Dad of Kelsi, 7; Chloe, 2.5 and Abby 15 mos. w/cf)

>

>

>

>

>

>

>

>

> > Hi all! Well, Piper went to clinic on Monday for her regular

> checkup, and since she has cultured Staph twice since July, they

> repeated her throat swab. We got a call from the CF Specialty Nurse

> today to let us know that Piper had cultured Staph again along with

> Pseudomonas. It was kind of a low blow for us, we knew that

> eventually she would culture it, but we had hoped that it would be a

> while before she did. Anyway, her doc is putting her on Tobi and

> Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

> Zantac, Prevacid, Reglan, and her enzymes).

> >

> > I just needed to get this out, our families don't understand the

> significance of her culturing this, but oh well, I guess ignorance is

> bliss........

> >

> >

> > Katy

> > Mom to Austin 4 no CF & Piper 16 months w/CF

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Katy,

I know that it is scary when they culture pseudomonas, but some people DO get

rid of it. cultured it from diagnosis at 9 & 1/2 months up until a few

months ago. I am glad they are dealing with it. I swear the Tobi keeps it at

bay and helps to get rid of it.

(OK, where is that soapbox?......Oh, here it is.......I am stepping up onto the

soapbox now)

Since Piper is so small, PLEASE request/insist that they monitor her Tobi levels

for a few days. The doc will tell you that since it is inhaled it is not

getting into the bloodstream as much as if it were IV. True but Anything that

goes into the lungs CAN get into the bloodstream, (that IS how oxygen gets into

the blood after all) and the dose in the box is for people 6 and up, not 16

month old babies whose lungs are smaller. When went on the Tobi at about

the same age, her doc and I agreed that we should monitor her Tobi levels and lo

and behold, they were elevated when on the full dose. We cut the dose to a half

of a vial and her numbers came back fine. Too much Tobi can cause all sorts of

problems.

this is my big thing about little babies being put on Tobi, It works and is

good, but MAN, Why don't the doc's think about this when prescribing it for kids

under 6?

(This is me, stepping off the soapbox now)

I hope it all works out.

Mom of 5 with CF

Culture's are back........

Hi all! Well, Piper went to clinic on Monday for her regular checkup, and

since she has cultured Staph twice since July, they repeated her throat swab.

We got a call from the CF Specialty Nurse today to let us know that Piper had

cultured Staph again along with Pseudomonas. It was kind of a low blow for us,

we knew that eventually she would culture it, but we had hoped that it would be

a while before she did. Anyway, her doc is putting her on Tobi and Cipro in

addition to her other meds (albuterol, Vitamax, Zyrtec, Zantac, Prevacid,

Reglan, and her enzymes).

I just needed to get this out, our families don't understand the significance

of her culturing this, but oh well, I guess ignorance is bliss........

Katy

Mom to Austin 4 no CF & Piper 16 months w/CF

[Guest guest]

Katy,

We just went through this two weeks ago. Zach cultured PA for the

first time and I was so disappointed. We had hoped we could avoid

this for a long time, but that was not to be. I also didn't ask

about the mucoid stuff either. I didn't know what to say when the

doctor called. I think I just said OK alot.

I know what you mean when you say that your family does not

understand. I called the grandparents to tell them. My mom said

she was starting to dred my phone calls. 's mom just didn't

say much at all.

I hope Piper does well with the TOBI. Poor little Zach is so hoarse

we can't tell what he is trying to say.

Sara- mommy of Zach 21 months

> Hi all! Well, Piper went to clinic on Monday for her regular

checkup, and since she has cultured Staph twice since July, they

repeated her throat swab. We got a call from the CF Specialty Nurse

today to let us know that Piper had cultured Staph again along with

Pseudomonas. It was kind of a low blow for us, we knew that

eventually she would culture it, but we had hoped that it would be a

while before she did. Anyway, her doc is putting her on Tobi and

Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

Zantac, Prevacid, Reglan, and her enzymes).

>

> I just needed to get this out, our families don't understand the

significance of her culturing this, but oh well, I guess ignorance

is bliss........

>

>

> Katy

> Mom to Austin 4 no CF & Piper 16 months w/CF

>

>

>

>

>

>

>

[Guest guest]

Sara,

Please, Get his peak and trough levels checked!

Re: Culture's are back........

Katy,

We just went through this two weeks ago. Zach cultured PA for the

first time and I was so disappointed. We had hoped we could avoid

this for a long time, but that was not to be. I also didn't ask

about the mucoid stuff either. I didn't know what to say when the

doctor called. I think I just said OK alot.

I know what you mean when you say that your family does not

understand. I called the grandparents to tell them. My mom said

she was starting to dred my phone calls. 's mom just didn't

say much at all.

I hope Piper does well with the TOBI. Poor little Zach is so hoarse

we can't tell what he is trying to say.

Sara- mommy of Zach 21 months

> Hi all! Well, Piper went to clinic on Monday for her regular

checkup, and since she has cultured Staph twice since July, they

repeated her throat swab. We got a call from the CF Specialty Nurse

today to let us know that Piper had cultured Staph again along with

Pseudomonas. It was kind of a low blow for us, we knew that

eventually she would culture it, but we had hoped that it would be a

while before she did. Anyway, her doc is putting her on Tobi and

Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

Zantac, Prevacid, Reglan, and her enzymes).

>

> I just needed to get this out, our families don't understand the

significance of her culturing this, but oh well, I guess ignorance

is bliss........

>

>

> Katy

> Mom to Austin 4 no CF & Piper 16 months w/CF

>

>

>

>

>

>

>

[Guest guest]

I am going to call about that. How do you pronounce the trough?

Does it rhyme with grow? I don't want to sound like I don't know

what I am talking about when I call.

How often do they do they draw for blood? Also what is the time

frame from treatment time to blood test time?

We live close to our local hospital that could do the tests. The cf

clinic is 2.5 hours away and it would be easier to do the test here.

Also, does it take a while to get the results back? Zach only has

10 days left of the TOBI.

Thanks for the warning. I knew about the dangers, but honestly I

assumed it was for the iv's not the inhaled stuff. So much to

learn...

Sara

> > Hi all! Well, Piper went to clinic on Monday for her regular

> checkup, and since she has cultured Staph twice since July, they

> repeated her throat swab. We got a call from the CF Specialty

Nurse

> today to let us know that Piper had cultured Staph again along

with

> Pseudomonas. It was kind of a low blow for us, we knew that

> eventually she would culture it, but we had hoped that it would

be a

> while before she did. Anyway, her doc is putting her on Tobi

and

> Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

> Zantac, Prevacid, Reglan, and her enzymes).

> >

> > I just needed to get this out, our families don't understand

the

> significance of her culturing this, but oh well, I guess

ignorance

> is bliss........

> >

> >

> > Katy

> > Mom to Austin 4 no CF & Piper 16 months w/CF

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

trough is pronounced tr off or troff

dwson2 wrote:I am going to call about that. How do you

pronounce the trough?

Does it rhyme with grow? I don't want to sound like I don't know

what I am talking about when I call.

How often do they do they draw for blood? Also what is the time

frame from treatment time to blood test time?

We live close to our local hospital that could do the tests. The cf

clinic is 2.5 hours away and it would be easier to do the test here.

Also, does it take a while to get the results back? Zach only has

10 days left of the TOBI.

Thanks for the warning. I knew about the dangers, but honestly I

assumed it was for the iv's not the inhaled stuff. So much to

learn...

Sara

> > Hi all! Well, Piper went to clinic on Monday for her regular

> checkup, and since she has cultured Staph twice since July, they

> repeated her throat swab. We got a call from the CF Specialty

Nurse

> today to let us know that Piper had cultured Staph again along

with

> Pseudomonas. It was kind of a low blow for us, we knew that

> eventually she would culture it, but we had hoped that it would

be a

> while before she did. Anyway, her doc is putting her on Tobi

and

> Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

> Zantac, Prevacid, Reglan, and her enzymes).

> >

> > I just needed to get this out, our families don't understand

the

> significance of her culturing this, but oh well, I guess

ignorance

> is bliss........

> >

> >

> > Katy

> > Mom to Austin 4 no CF & Piper 16 months w/CF

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Rimes with trowf, or hawf, etc. n--Emglish is nuts!

Re: Culture's are back........

> I am going to call about that. How do you pronounce the trough?

> Does it rhyme with grow? I don't want to sound like I don't know

> what I am talking about when I call.

> How often do they do they draw for blood? Also what is the time

> frame from treatment time to blood test time?

> We live close to our local hospital that could do the tests. The cf

> clinic is 2.5 hours away and it would be easier to do the test here.

> Also, does it take a while to get the results back? Zach only has

> 10 days left of the TOBI.

> Thanks for the warning. I knew about the dangers, but honestly I

> assumed it was for the iv's not the inhaled stuff. So much to

> learn...

> Sara

>

> > > Hi all! Well, Piper went to clinic on Monday for her regular

> > checkup, and since she has cultured Staph twice since July, they

> > repeated her throat swab. We got a call from the CF Specialty

> Nurse

> > today to let us know that Piper had cultured Staph again along

> with

> > Pseudomonas. It was kind of a low blow for us, we knew that

> > eventually she would culture it, but we had hoped that it would

> be a

> > while before she did. Anyway, her doc is putting her on Tobi

> and

> > Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

> > Zantac, Prevacid, Reglan, and her enzymes).

> > >

> > > I just needed to get this out, our families don't understand

> the

> > significance of her culturing this, but oh well, I guess

> ignorance

> > is bliss........

> > >

> > >

> > > Katy

> > > Mom to Austin 4 no CF & Piper 16 months w/CF

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

it's pronounced " troff " (rhymes with off) They usually want to take the levels

just before the dose and then again very soon after. (our ped has her office in

a small local hospital so we did the treatments their in the office and then

went back for the 2nd draw) It should just be the 2 draws. and then they check

the levels. As I recall it was only a day or two to get the results. is he

going to be on it every other month or is it a one shot deal? does

alternate months.

I hope the docs are willing to do this without a fight. (apparently some CF

docs really feel like they are being threatened and refuse to do the simple

blood test)

Re: Culture's are back........

I am going to call about that. How do you pronounce the trough?

Does it rhyme with grow? I don't want to sound like I don't know

what I am talking about when I call.

How often do they do they draw for blood? Also what is the time

frame from treatment time to blood test time?

We live close to our local hospital that could do the tests. The cf

clinic is 2.5 hours away and it would be easier to do the test here.

Also, does it take a while to get the results back? Zach only has

10 days left of the TOBI.

Thanks for the warning. I knew about the dangers, but honestly I

assumed it was for the iv's not the inhaled stuff. So much to

learn...

Sara

> > Hi all! Well, Piper went to clinic on Monday for her regular

> checkup, and since she has cultured Staph twice since July, they

> repeated her throat swab. We got a call from the CF Specialty

Nurse

> today to let us know that Piper had cultured Staph again along

with

> Pseudomonas. It was kind of a low blow for us, we knew that

> eventually she would culture it, but we had hoped that it would

be a

> while before she did. Anyway, her doc is putting her on Tobi

and

> Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

> Zantac, Prevacid, Reglan, and her enzymes).

> >

> > I just needed to get this out, our families don't understand

the

> significance of her culturing this, but oh well, I guess

ignorance

> is bliss........

> >

> >

> > Katy

> > Mom to Austin 4 no CF & Piper 16 months w/CF

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

,

Thanks for the info, I didn't know about the age thing. I will definately ask

about that tomorrow. Our pharmacy had to order the meds and it won't be in

until tomorrow, so hopefully I can find something out before she starts the

meds.

Katy

mom to Austin 4 no CF & Piper 16 months w/CF

ANDREA FITTING wrote:

Katy,

I know that it is scary when they culture pseudomonas, but some people DO get

rid of it. cultured it from diagnosis at 9 & 1/2 months up until a few

months ago. I am glad they are dealing with it. I swear the Tobi keeps it at bay

and helps to get rid of it.

(OK, where is that soapbox?......Oh, here it is.......I am stepping up onto the

soapbox now)

Since Piper is so small, PLEASE request/insist that they monitor her Tobi levels

for a few days. The doc will tell you that since it is inhaled it is not getting

into the bloodstream as much as if it were IV. True but Anything that goes into

the lungs CAN get into the bloodstream, (that IS how oxygen gets into the blood

after all) and the dose in the box is for people 6 and up, not 16 month old

babies whose lungs are smaller. When went on the Tobi at about the same

age, her doc and I agreed that we should monitor her Tobi levels and lo and

behold, they were elevated when on the full dose. We cut the dose to a half of a

vial and her numbers came back fine. Too much Tobi can cause all sorts of

problems.

this is my big thing about little babies being put on Tobi, It works and is

good, but MAN, Why don't the doc's think about this when prescribing it for kids

under 6?

(This is me, stepping off the soapbox now)

I hope it all works out.

Mom of 5 with CF

Culture's are back........

Hi all! Well, Piper went to clinic on Monday for her regular checkup, and since

she has cultured Staph twice since July, they repeated her throat swab. We got a

call from the CF Specialty Nurse today to let us know that Piper had cultured

Staph again along with Pseudomonas. It was kind of a low blow for us, we knew

that eventually she would culture it, but we had hoped that it would be a while

before she did. Anyway, her doc is putting her on Tobi and Cipro in addition to

her other meds (albuterol, Vitamax, Zyrtec, Zantac, Prevacid, Reglan, and her

enzymes).

I just needed to get this out, our families don't understand the significance of

her culturing this, but oh well, I guess ignorance is bliss........

Katy

Mom to Austin 4 no CF & Piper 16 months w/CF

[Guest guest]

Katy, thank you for a really good post!

Love, n Rojas

Culture's are back........

>

>

> Hi all! Well, Piper went to clinic on Monday for her regular checkup, and

since she has cultured Staph twice since July, they repeated her throat

swab. We got a call from the CF Specialty Nurse today to let us know that

Piper had cultured Staph again along with Pseudomonas. It was kind of a low

blow for us, we knew that eventually she would culture it, but we had hoped

that it would be a while before she did. Anyway, her doc is putting her on

Tobi and Cipro in addition to her other meds (albuterol, Vitamax, Zyrtec,

Zantac, Prevacid, Reglan, and her enzymes).

>

> I just needed to get this out, our families don't understand the

significance of her culturing this, but oh well, I guess ignorance is

bliss........

>

>

> Katy

> Mom to Austin 4 no CF & Piper 16 months w/CF

>

>

>

>

>

>

>