Re: 1st time w/ pseudomas aeruginosa

December 17, 2002

I don't have an answer for you but I just wanted to say good luck with the

treatment. And to say hi to the other . Now I remember, there was a

mom of triplets, you mom of twins, and me mom of two, no multiples.

I can't see how you could keep Alec from getting the pseudo. But someone else

asked, if your kid gets pseudo are they OK and the family? We are all OK and

's had pseudo for about 16 yrs. If you ever saw her you'd never guess she

has CF, unless if she was having an exaserbation and she coughed. We are still

married, we are all OK!

:Love,

M

1st time w/ pseudomas aeruginosa

Found out today my son, Adam, has grown pseudomonas aeruginosa for the

1st time. On wed the drs will let us know what they will do. The nurse

said it is possible they will do nothing. I would like to hear from

others about their treatment concerning this bacteria. I was shocked

when they told me, because Adam has no symptoms of cf. We only know

about Adam because his twin brother had some problems when he was a

toddler. Since the boys were dx at 18 mths and 19 mths, Alec has been on

Creon 10 and Adek. Adam takes nothing. Some of our questions--Can drs

determine how much of the lungs are affected?, Is it a slow growing

bacteria?, How do we protect Alec from it?

W. (one of the original 3 s) mom to Adam and Alec both 7

wcf plus Chance 13 ncf and Chase 16 ncf

December 17, 2002

Hi ,

I think it is common sense in the US now too, that Pseudomonas needs

to be treated agressively ON FIRST DETECTION. When you wait until

symptoms occur the damage is already done and hard to reverse. On top

of that there is the risk of cross-infection of Alec, so I hope this

clinic is run by docs and not by nurses.

I think at this stage you can't tell how much of the lung is affected

(maybe it's not in the lung yet but only in the upper airways) and

you can't predict the course of the infection. Obviously Adam has

some " good genes " that have kept him healthy so far. It is to hope

that they will help to keep Pseudomonas at bay too and that the

antibiotics (TOBI alone or a combo of Cipro and TOBI) will be able to

eradicate the buggers.

Good Luck!

Torsten

> Found out today my son, Adam, has grown pseudomonas aeruginosa for

the

> 1st time. On wed the drs will let us know what they will do. The

nurse

> said it is possible they will do nothing. I would like to hear from

> others about their treatment concerning this bacteria. I was shocked

> when they told me, because Adam has no symptoms of cf. We only know

> about Adam because his twin brother had some problems when he was a

> toddler. Since the boys were dx at 18 mths and 19 mths, Alec has

been on

> Creon 10 and Adek. Adam takes nothing. Some of our questions--Can

drs

> determine how much of the lungs are affected?, Is it a slow growing

> bacteria?, How do we protect Alec from it?

> W. (one of the original 3 s) mom to Adam and Alec both

7

> wcf plus Chance 13 ncf and Chase 16 ncf

December 17, 2002

Hi ,

I agree, hit it hard at first detection. And I'd opt for Cipro and

Zithromax along with inhaling TOBI. Zithromax will reduce immediate

inflammation caused by the PA. And studies show a combo of Zithromax

and Cipro works better than Cipro alone.

One other note, if you do the oral antibiotics, Cipro is often hard

on the gut, so get a good probiotic to keep the intestinal flora

healthy.

My son first cultured PA when he was about six years old. Not sure of

the timing because no one told us; I found out accidently about an

old lab report. He didn't have symptoms at the time of the culture so

the doctor opted not to treat. This was the standard US practice way

back then. Now, my son cultures two forms of PA. One is mucoid the

other isn't.

Best wishes to you whatever you decide to do.

Kim

Mom of (23 with asthma and cf) and (20 asthma no cf)

> > Found out today my son, Adam, has grown pseudomonas aeruginosa

for

> the

> > 1st time. On wed the drs will let us know what they will do. The

> nurse

> > said it is possible they will do nothing. I would like to hear

from

> > others about their treatment concerning this bacteria. I was

shocked

> > when they told me, because Adam has no symptoms of cf. We only

know

> > about Adam because his twin brother had some problems when he was

a

> > toddler. Since the boys were dx at 18 mths and 19 mths, Alec has

> been on

> > Creon 10 and Adek. Adam takes nothing. Some of our questions--

Can

> drs

> > determine how much of the lungs are affected?, Is it a slow

growing

> > bacteria?, How do we protect Alec from it?

> > W. (one of the original 3 s) mom to Adam and Alec

both

> 7

> > wcf plus Chance 13 ncf and Chase 16 ncf

December 17, 2002

Hi ,

I agree, hit it hard at first detection. And I'd opt for Cipro and

Zithromax along with inhaling TOBI. Zithromax will reduce immediate

inflammation caused by the PA. And studies show a combo of Zithromax

and Cipro works better than Cipro alone.

One other note, if you do the oral antibiotics, Cipro is often hard

on the gut, so get a good probiotic to keep the intestinal flora

healthy.

My son first cultured PA when he was about six years old. Not sure of

the timing because no one told us; I found out accidently about an

old lab report. He didn't have symptoms at the time of the culture so

the doctor opted not to treat. This was the standard US practice way

back then. Now, my son cultures two forms of PA. One is mucoid the

other isn't.

Best wishes to you whatever you decide to do.

Kim

Mom of (23 with asthma and cf) and (20 asthma no cf)

> > Found out today my son, Adam, has grown pseudomonas aeruginosa

for

> the

> > 1st time. On wed the drs will let us know what they will do. The

> nurse

> > said it is possible they will do nothing. I would like to hear

from

> > others about their treatment concerning this bacteria. I was

shocked

> > when they told me, because Adam has no symptoms of cf. We only

know

> > about Adam because his twin brother had some problems when he was

a

> > toddler. Since the boys were dx at 18 mths and 19 mths, Alec has

> been on

> > Creon 10 and Adek. Adam takes nothing. Some of our questions--

Can

> drs

> > determine how much of the lungs are affected?, Is it a slow

growing

> > bacteria?, How do we protect Alec from it?

> > W. (one of the original 3 s) mom to Adam and Alec

both

> 7

> > wcf plus Chance 13 ncf and Chase 16 ncf

December 17, 2002

Hi ---don't panic. Your son is doing well to just now have this growing.

My daughter showed PA in a culture earlier this year and she was only 2 at the

time. X-rays will help determine the extent of the bug and there is now a high

resolution cat scan that can be done for the best information. The next step

would be a bronchoscopy. My daughter was hospitalized for 10 days in March and

has had clean cultures and xrays ever since. That doesn't mean it's gone, but

it's not currently posing a problem. I know that this is frightening and

overwhelming and you want a lot of information. Stay in close contact with your

doctors and trust your instincts. Things will be fine. Lots of hand washing to

protect your other son, don't share towels, the usual precautions and he'll be

fine. Hang in there.

mary,mom of 3----one pwcf

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December 17, 2002