Hal - Give this a Shot

[Guest guest]

Hi Hal,

I'm the father of 3 girls, the youngest has CF and is 16 mos. old.

She is off the charts in growth and has been very healthy since being

diagnosed during a bad case of bronchiolitis at 5 mos. CF was not

suspected however when undergoing a bronch checking for tracheo

malacia at our University hospital a sweat test was administered as

routine. Pseudomonas grew from the fluid taken in the bronch so she

was put on tobra, timentin and Tobi for 14 days. Since being

discharged she has grown Pseudomonas 3 more times - non-mucoid and

low pop. - along with acinetobacter baumanii and proteus miribilis

which were very sensitive bugs. When she grew Pa right after a round

of Tobi, her docs ordered another bronch. The same doc who performed

the first one did it and said the airways looked very good. He said

he got a very good specimen and that the bronch would be considered

the gold standard to determine what was in her lungs. It grew only

low pop. of Proteus and NO Pseudomonas.

Three months after the bronch her throat culture grew Psedomonas

again. My question is this: Can Pseudomonas simply hang around in

the sinuses and throat and not be in the lungs? And if so, isn't it

just a matter of time before it gets into the lungs? Abby's doctor

acts as if he doesn't really know and seems not to understand why she

has a pos. throat culture and neg. bronch culture.

She was treated with Tobi for this last pos. culture just recently

and the unofficial reading said it grew only normal flora.

Thanks for your time, Hal. Hey, do they know what CF genes you have?

Joe Reams

We just finished a month of Tobi and 2 weeks of Cipro. Her latest

throat culture only had normal flora

> Hi: Staph and/or pseudomonas in the sinuses are very difficult to

get

> rid of due to the structures of the various soft tissues and

cavities

> involved. However, there are a range of antibiotics and

methodologies to

> help alleviate sinus infections, but it is more difficult with

> aspergillus where the treatment is limited. I don't want to begin to

> tell you about my personal experiences with sinus infections,

polyps,

> surgeries, etc. I go back to the days when being drawn and

quartered was

> the only way to get relief. Today, treatments are relatively more

> humane. Those of us with CF have to adjust to living with an

insidious

> disease that makes us susceptible to bacteria, viruses, and mold.

The

> child that is able to be taught early to listen to what their body

is

> saying and have the discipline necessary to deal with the traumas

> obviously has a better chance to survive. Now, wouldn't that be

nice if

> every little one just acquiesced like a good little do-bee? I never

was

> sure which would get me first.CF, raising two children into (and

beyond)

> adulthood, or my creditors. Many times I thought it was a

conspiracy.

> Hal

> Re: Gosh!

>

> My oldest has pseudomonas in her sinuses. So are you saying there is

> know way

> of getting rid of it out of you sinuses? We have been trying

everything.

>

> Neblizing antibiotics through her nose and nothing seems to work.

Deb A

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