Re: Lung Involement?? QUESTION

[Guest guest]

To me that would mean no infections, PA, coughing, pneumonias. If I heard

that I would think no lung infections w/ increased coughing...but what do I

know......

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

PLENTY! n

Re: Lung Involement?? QUESTION

> To me that would mean no infections, PA, coughing, pneumonias. If I heard

> that I would think no lung infections w/ increased coughing...but what do

I

> know......

>

> Rosemary in NY with 3 children (13, 11 and 7)

> with CF. I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>

[Guest guest]

Dear ,

I don't understand this either. People say " my child doesn't have any lung

involvement " but then they will say " So in so (my child) was on Tobra etc IV's

for 14 days " What are they treating if it isn't lung involvement? I think

pretty much any child with CF who coughs has some lung involvement. do they

mean their child hasn't had pneumonia yet? I don't get it either.

love,

M

[Guest guest]

In a message dated 11/27/2003 3:10:23 PM Central Standard Time,

brmorey@... writes:

Dear ,

I don't understand this either. People say " my child doesn't have any lung

involvement " but then they will say " So in so (my child) was on Tobra etc IV's

for 14 days " What are they treating if it isn't lung involvement? I think

pretty much any child with CF who coughs has some lung involvement. do they

mean their child hasn't had pneumonia yet? I don't get it either.

love,

M

It means there is not pseudomonas in the lungs yet. Once pseudomonas gets

into the lungs it start eating away at the lungs and starts to damage the lungs.

It can be in the airway and not in the lungs. That is why they do

bronchoscopes to see if it is in the lungs. The antibiotics is to help

irradicate it. Deb

A

[Guest guest]

In a message dated 11/28/2003 8:33:37 PM Central Standard Time,

palazo_a@... writes:

Deb,

With all due respect, a has had lung involvement since diagnosis

at age 8, almost 9, and culture PA for the first time a few weeks ago.

What do you mean by involvement? Deb A

[Guest guest]

Deb,

With all due respect, a has had lung involvement since diagnosis

at age 8, almost 9, and culture PA for the first time a few weeks ago.

> In a message dated 11/27/2003 3:10:23 PM Central Standard Time,

> brmorey@i... writes:

> Dear ,

> I don't understand this either. People say " my child doesn't have

any lung

> involvement " but then they will say " So in so (my child) was on

Tobra etc IV's

> for 14 days " What are they treating if it isn't lung involvement?

I think

> pretty much any child with CF who coughs has some lung

involvement. do they

> mean their child hasn't had pneumonia yet? I don't get it either.

> love,

> M

> It means there is not pseudomonas in the lungs yet. Once

pseudomonas gets

> into the lungs it start eating away at the lungs and starts to

damage the lungs.

> It can be in the airway and not in the lungs. That is why they do

> bronchoscopes to see if it is in the lungs. The antibiotics is to

help irradicate it. Deb

> A

>

>

>

[Guest guest]

a's cf has only manifested itself in her respiratory tract, so

far. At diagnosis May 2002, her culture showed growth of normal

flora, which is good. She had a pnumonia, collapsed lung, that would

not go away, hence the lung damaged, and subsequent diagnosis. She

was asyntomatic until her lungs started to get sick. So, she has the

cough, which is a byproduct of the bronchiectasis and fibrosis that

is consistent with CF. On her last x-ray, two days ago, her lungs are

looking a lot better than ever, but the damage, although small it is

there. She had a flare up in January nothing grew then and the

latest one was a couple of weeks ago and that was the first time that

she cultured PA's.

> In a message dated 11/28/2003 8:33:37 PM Central Standard Time,

> palazo_a@b... writes:

> Deb,

>

> With all due respect, a has had lung involvement since

diagnosis

> at age 8, almost 9, and culture PA for the first time a few weeks

ago.

>

>

> What do you mean by involvement? Deb A

>

>

>

[Guest guest]

Oh Ok I think I see what you mean. But to me the " airway " is the bronchioles

and the bronchioles are a part of the lung. You can have a bronchiole infection

without pneumonia so I guess that is what they mean. I consider a bronchitis to

be a lung infection.

love,

M

[Guest guest]

In a message dated 11/28/2003 10:59:19 PM Eastern Standard Time,

palazo_a@... writes:

> she has the

> cough, which is a byproduct of the bronchiectasis and fibrosis that

> is consistent with CF

That my daughter has. How old is yours? I HATE when my Dr. says " her xray

is consistent with that of a 12 yr. w/ CF " . What pray tell is that actually

telling me. i would rather know if SHE is doing bad/good and what it indicates.

I think medical school teaches Dr. how to NOT answer a question (i.e.

Welll, they all PRESENT different or lets WAIT and see " ) Why can't they said " I

have no freaking clue!!!!!!!! "

Just kidding..........nah.........Its late and I am cranky and tired.

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

My a is 10 and you are right half of the time doctors do not know

anymore than we do. Rosemary are your kids taking Inositol?

> In a message dated 11/28/2003 10:59:19 PM Eastern Standard Time,

> palazo_a@b... writes:

>

> > she has the

> > cough, which is a byproduct of the bronchiectasis and fibrosis

that

> > is consistent with CF

>

> That my daughter has. How old is yours? I HATE when my Dr.

says " her xray

> is consistent with that of a 12 yr. w/ CF " . What pray tell is that

actually

> telling me. i would rather know if SHE is doing bad/good and what

it indicates.

> I think medical school teaches Dr. how to NOT answer a question

(i.e.

> Welll, they all PRESENT different or lets WAIT and see " ) Why can't

they said " I

> have no freaking clue!!!!!!!! "

>

> Just kidding..........nah.........Its late and I am cranky and

tired.

>

> Rosemary in NY with 3 children (13, 11 and 7)

> with CF. I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>

[Guest guest]

Angie - knock wood Anytime I say that they get sick. I think I jinx myself!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

,

When I say my son has " no lung involvement " , I mean he has never ever

had any chest congestion, not even a cold. He has cultured staph a.

twice but it is always gone by the next culture. He rarely ever

coughs. He has had the sniffles and nasal congestion occasionally

but it always stays in his head, never gets down in his chest. To me

that is pretty clearly " no lung involvement " . We still do cpt twice

a day and he gets pulmozyme, so that hopefully we can continue to

say " no lung involvement " for a little longer. (A lot longer?)

Angie P. (Ma to JC, 3yo, wcf)

> What does it mean when someone says " my child has not had any lung

involment yet " ??

> Liam has had Staph and haemopolis (Sp?) But have been treated, does

that mean he has had lung involement or not??

> mum to Liam wcf 15mths

>

>

[Guest guest]

Hi ,

what is Inositol?

just curious,

M

Re: Lung Involement?? QUESTION

My a is 10 and you are right half of the time doctors do not know

anymore than we do. Rosemary are your kids taking Inositol?