Re: 1st time w/ pseudomas aeruginosa

[Guest guest]

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

[Guest guest]

,

I hope your clinic has started treating the PA right away. My

clinic JUST started this kind of treatment. My daughter just

cultured it a week ago and if she had cultured it even a month before

they probably would have done NOTHING! Many of the kids that they

did not treat right away now do not " qualify " for their new

erradication program??? They put Hannah (3) on Cipro and Tobi to try

to get rid of it. Good luck and fight for it!

(Hannah 3 wcf and Tommy 5 1/2 wocf)

> 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

[Guest guest]

,

I hope your clinic has started treating the PA right away. My

clinic JUST started this kind of treatment. My daughter just

cultured it a week ago and if she had cultured it even a month before

they probably would have done NOTHING! Many of the kids that they

did not treat right away now do not " qualify " for their new

erradication program??? They put Hannah (3) on Cipro and Tobi to try

to get rid of it. Good luck and fight for it!

(Hannah 3 wcf and Tommy 5 1/2 wocf)

> 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

[Guest guest]

,

I hope your clinic has started treating the PA right away. My

clinic JUST started this kind of treatment. My daughter just

cultured it a week ago and if she had cultured it even a month before

they probably would have done NOTHING! Many of the kids that they

did not treat right away now do not " qualify " for their new

erradication program??? They put Hannah (3) on Cipro and Tobi to try

to get rid of it. Good luck and fight for it!

(Hannah 3 wcf and Tommy 5 1/2 wocf)

> 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