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

[Guest guest]

,

What are some of the problems associated with the TOBI? I did know

that it was associated with some ear problems and other side effects

but have never heard it was because of too much. I thought it was

just potential side effects of normal usage. They always told us

that the dose was the same for several reasons, but mostly it was

because the little ones aren't inhaling deeply and waste a lot of it.

What should I do - take her to the ped. for a blood test?

Joe

> 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

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