Re: Thankyou to all and have some questions about Pseudomonas

[Guest guest]

In a message dated 1/20/2004 4:27:06 PM Central Standard Time,

findacureforcf@... writes:

,

Pseudomonas will not affect anyone else that does not have CF. Pseudomonas

only breeds in wet areas and kids with CF have sticky mucus that is wet and

sticky so pseudomonas will breed in those areas any other kid that does not have

CF does not have sticky mucus so the kids in school do not have any fears about

get sick from you son having pseudomonas. If they do get pseudomonas in there

throat they can cough it out but our kids can't because there mucus is

sticky. So tell your school there is nothing to worry about unless the other

kids

you are worried about has CF. Oh and about the time it takes to do Tobi it

usually takes 30 to 40 minutes for my girls to get through it and I have talked

to

our doctors about and he says the most important part of the treatment is

about the first 20 minutes so when 30 minutes are up we are done if it is all

gone

or not. I hope this helps. Deb A

[Guest guest]

,

I don't know about the school issues, I do know that PA can be harmful to CF

patients and also Cancer patients.

On the Nebulizer question, are you using the Pari LC Plus Reusable? Is he using

a mask? If you are and he is, take the valve off the top of the neb. It has a

blue valve, if you are using a mask this part should be removed. It will cut

the time down to about 7 or 8 minutes.

Katy

Mom to Austin 4 no CF & Piper 18 months w/CF

[Guest guest]

I only knwo this because we went for a week with the valve in and it taking 45

min+ before I finally asked someone : )

Katy

Beverley Donelson wrote:

GREAT SUGGESTION. I wish all knew this. Bless you . We'll just send

folks to you for helpers :) hehe thanks -I mean that too!!

LOVE & HUGS, grandmomBEv

Re: Thankyou to all and have some questions about

Pseudomonas

,

I don't know about the school issues, I do know that PA can be harmful

to CF patients and also Cancer patients.

On the Nebulizer question, are you using the Pari LC Plus Reusable? Is

he using a mask? If you are and he is, take the valve off the top of

the neb. It has a blue valve, if you are using a mask this part should

be removed. It will cut the time down to about 7 or 8 minutes.

Katy

Mom to Austin 4 no CF & Piper 18 months w/CF

[Guest guest]

GREAT SUGGESTION. I wish all knew this. Bless you . We'll just send

folks to you for helpers :) hehe thanks -I mean that too!!

LOVE & HUGS, grandmomBEv

Re: Thankyou to all and have some questions about

Pseudomonas

,

I don't know about the school issues, I do know that PA can be harmful

to CF patients and also Cancer patients.

On the Nebulizer question, are you using the Pari LC Plus Reusable? Is

he using a mask? If you are and he is, take the valve off the top of

the neb. It has a blue valve, if you are using a mask this part should

be removed. It will cut the time down to about 7 or 8 minutes.

Katy

Mom to Austin 4 no CF & Piper 18 months w/CF

[Guest guest]

50 min is a long time for Tobi. it takes about 15 min for 's dose (she

takes a 1/2 vial) so a standard dose shouldn't take more than 30 min or so.

Have you discussed getting his levels checked? I won't get on the soapbox but

PLEASE keep an eye on this as he could get very sick from too much. (don't take

" it doesn't go into the bloodstream " as an answer.......how else do we get

oxygen in our bloodstream?)

As far as contagious goes I wouldn't worry too much unless another kid has CF or

something else that makes the mucus thick to trap the pseudomonas in the lungs.

I would think that other people will just fight it off.

Mom of 5 with CF and one on the way

Thankyou to all and have some questions about Pseudomonas

I want to take a moment to thank all of you for responding to my post about

the dreadful bacteria pseudomonas, I am still upset, but in a more positive

way. is doing really well with the Cipro and the Tobi, so here is

hoping

and praying that the throat swab comes back clean at our next clinic visit. I

have a few questions about the pseudomonas, first question is... How long

should it take the tobi to complete in the nebulizer? Right now it is taking

over

50 minutes to do, let me tell you that is a long time for a five year old.

Next question.... goes to a school that has a lot of children that

have

medical issues, Some have lung problems and some have compromised immune

systems. I told his school that should not come into contact with

these

children in fear that they may be susceptible to the bacteria, OK, Is

contagious? Is he contagious while on the tobi and cipro? I know it won't

affect

healthy people but what about the ones I listed, I Don't want to go overboard

but I feel that these precautions wouldn't hurt. What do you all think, Am I

making too big of a deal about it? His doctors have said he could go back to

school, but that's all I know, Are there any safeguards that need to be in

place

while at school? I had a meeting with the school nurse and the principal

explaining my concerns, but none of us are really sure on what to do. They are

going to make sure that and the other children are kept seperate, not

that

is going to be a big deal, but we don't want to take any chances. I called

and left a message at our CF clinic, but I am eager to hear what you all have

to

say.

Once again. Thankyou,

, mommy of 5 years old w/cf/adhd and 2 years old no CF

[Guest guest]

In a message dated 1/20/2004 7:59:36 PM Eastern Standard Time,

baileyk80@... writes:

> Pari LC Plus Reusable? Is he using a mask? If you are and he is, take the

> valve off the top of the neb. It has a blue valve, if you are using a mask

> this part should be removed. It will cut the time down to about 7 or 8

> minutes.

>

Yes...done that...I phrased it wrong - I meant air compressor unit.........

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 "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

[Guest guest]

It takes a 20 min for tobi and about 10 min for pulmozyme, we do

have a Pari, but somebody wrote " 8 mins " , I like that, :-)

About other kids getting sick from your kid, I have often wonder

that. This Christmas we went to a party and there was a child that

has cancer, she had a mask on, so I kept a far from this child.

> 50 min is a long time for Tobi. it takes about 15 min for 's

dose (she takes a 1/2 vial) so a standard dose shouldn't take more

than 30 min or so. Have you discussed getting his levels checked? I

won't get on the soapbox but PLEASE keep an eye on this as he could

get very sick from too much. (don't take " it doesn't go into the

bloodstream " as an answer.......how else do we get oxygen in our

bloodstream?)

> As far as contagious goes I wouldn't worry too much unless another

kid has CF or something else that makes the mucus thick to trap the

pseudomonas in the lungs. I would think that other people will just

fight it off.

>

> Mom of 5 with CF and one on the way

> Thankyou to all and have some questions

about Pseudomonas

>

>

> I want to take a moment to thank all of you for responding to my

post about

> the dreadful bacteria pseudomonas, I am still upset, but in a

more positive

> way. is doing really well with the Cipro and the Tobi, so

here is hoping

> and praying that the throat swab comes back clean at our next

clinic visit. I

> have a few questions about the pseudomonas, first question is...

How long

> should it take the tobi to complete in the nebulizer? Right now

it is taking over

> 50 minutes to do, let me tell you that is a long time for a five

year old.

> Next question.... goes to a school that has a lot of

children that have

> medical issues, Some have lung problems and some have compromised

immune

> systems. I told his school that should not come into

contact with these

> children in fear that they may be susceptible to the bacteria,

OK, Is

> contagious? Is he contagious while on the tobi and cipro? I know

it won't affect

> healthy people but what about the ones I listed, I Don't want to

go overboard

> but I feel that these precautions wouldn't hurt. What do you all

think, Am I

> making too big of a deal about it? His doctors have said he could

go back to

> school, but that's all I know, Are there any safeguards that need

to be in place

> while at school? I had a meeting with the school nurse and the

principal

> explaining my concerns, but none of us are really sure on what to

do. They are

> going to make sure that and the other children are kept

seperate, not that

> is going to be a big deal, but we don't want to take any chances.

I called

> and left a message at our CF clinic, but I am eager to hear what

you all have to

> say.

> Once again. Thankyou,

>

> , mommy of 5 years old w/cf/adhd and 2 years

old no CF

>

>

>

[Guest guest]

So, the first 20 mins are the most important time, good to know.

Sometimes I feel like the moisture/sweat of the treatment itself,

drips back in.

Thanks,

> In a message dated 1/20/2004 4:27:06 PM Central Standard Time,

> findacureforcf@a... writes:

> ,

> Pseudomonas will not affect anyone else that does not have CF.

Pseudomonas

> only breeds in wet areas and kids with CF have sticky mucus that is

wet and

> sticky so pseudomonas will breed in those areas any other kid that

does not have

> CF does not have sticky mucus so the kids in school do not have any

fears about

> get sick from you son having pseudomonas. If they do get

pseudomonas in there

> throat they can cough it out but our kids can't because there mucus

is

> sticky. So tell your school there is nothing to worry about unless

the other kids

> you are worried about has CF. Oh and about the time it takes to do

Tobi it

> usually takes 30 to 40 minutes for my girls to get through it and I

have talked to

> our doctors about and he says the most important part of the

treatment is

> about the first 20 minutes so when 30 minutes are up we are done if

it is all gone

> or not. I hope this helps. Deb A

>

>

>

[Guest guest]

Hi ,

This is probably late but I wanted to write. I am glad you are feeling more

reassured about the pseudomonas. 50 minutes is too long. You need a different

nebulizer or maybe compressor. Those things don't last forever. It should take

about 20-30 minutes. As for him being around other children unless they have cf

it should be ok. Even children with other lung problems don't get pseudo as

far as I know.

Keep us posted. Is doing better?

love,

M