Re: 1st time w/ pseudomas aeruginosa

[Guest guest]

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

[Guest guest]

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

[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]

-

Just wanted to share our experience with PA. My son culured for the first

time last October. We did three rounds of TOBI, 30 days each, every other

month. After the first month of treatment, he cultured negative, and has

been negative for just over a year now, testing every 3 months -

prayerfully. He did have a couple of months of being positive for staph,

but since April, has had nothing culture. Best of luck to you. I sure hope

they treat it right away. I understand that with the first detection, you

have a GREAT chance of getting rid of it!!

Melinda - 2 sons wcf, 4 years and 7 months, and sister 26 wcf

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

[Guest guest]

-

Just wanted to share our experience with PA. My son culured for the first

time last October. We did three rounds of TOBI, 30 days each, every other

month. After the first month of treatment, he cultured negative, and has

been negative for just over a year now, testing every 3 months -

prayerfully. He did have a couple of months of being positive for staph,

but since April, has had nothing culture. Best of luck to you. I sure hope

they treat it right away. I understand that with the first detection, you

have a GREAT chance of getting rid of it!!

Melinda - 2 sons wcf, 4 years and 7 months, and sister 26 wcf

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

[Guest guest]

-

Just wanted to share our experience with PA. My son culured for the first

time last October. We did three rounds of TOBI, 30 days each, every other

month. After the first month of treatment, he cultured negative, and has

been negative for just over a year now, testing every 3 months -

prayerfully. He did have a couple of months of being positive for staph,

but since April, has had nothing culture. Best of luck to you. I sure hope

they treat it right away. I understand that with the first detection, you

have a GREAT chance of getting rid of it!!

Melinda - 2 sons wcf, 4 years and 7 months, and sister 26 wcf

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

[Guest guest]

Hi,

Thank you,

I have received some good information and am ready for the drs call tomorrow

concerning Adam. The unknown is frustrating. If there is a parent whose child

goes to Dallas Children's Medical Center and you can shed light on how that

group handles pseudomas aeruginosa, please contact me.

W. mom to twins Adam and Alec w/cf (7) , Chance (13) ncf and Chase (16)

ncf

msulli4@... wrote:

> 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

>

> ________________________________________________________________

> Sign Up for Juno Platinum Internet Access Today

> Only $9.95 per month!

> Visit www.juno.com

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Uh, oh... " The nurse wanted to know where I received my information. "

Over the years, I've learned this is either a good or bad omen. Did

the nurse seem impressed or defensive about your knowledge? Sometimes

medical caregivers get really " anxious " when faced with knowledgeable

parents.

It's stupid, I know, because the more information you have the more

you can participate in decisions. BUT there are still a few doctors,

nurses, technicians, etc. who don't want a parent's input -- they

just want to get through the day using what they know and with as

little new thinking or hassles as necessary.

I know lots of doctors and nurses aren't like that -- but I know

there are many exactly like that. I hope Adam's medical caregivers

are the " impressed with your knowledge " type, not the other type.

But I don't understand the reluctance about Zithromax. If he's

definitely culturing PA, then there's some underlying inflammation

REGARDLESS of symptoms -- and the Zithromax will address it and

prevent further damage.

I'd really insist upon Zithromax whenever there's a positive PA

culture. And studies show Cipro's power is boosted when given with

Zithromax.

I can try to locate that study again for you. Or maybe Torsten has

that one handy.

Kim

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

Hi everyone,

The drs are treating Adam's new friends with Cipro and Tobi. We are

waiting for the insurance to approve Tobi The drs said no to

Zithromax, x ray, and ct scan, because Adam isn't having any problems

yet. I wanted a xray to see how extensive the lungs are involved or

maybe the pseudos are still in the airway.

The next xray is not scheduled until April.Thank you for all of the

information.

The nurse wanted to know where I received my information.

W. mom to Adam and Alec both 7 w/cf, Chance 13ncf and Chase

16 ncf

[Guest guest]

Uh, oh... " The nurse wanted to know where I received my information. "

Over the years, I've learned this is either a good or bad omen. Did

the nurse seem impressed or defensive about your knowledge? Sometimes

medical caregivers get really " anxious " when faced with knowledgeable

parents.

It's stupid, I know, because the more information you have the more

you can participate in decisions. BUT there are still a few doctors,

nurses, technicians, etc. who don't want a parent's input -- they

just want to get through the day using what they know and with as

little new thinking or hassles as necessary.

I know lots of doctors and nurses aren't like that -- but I know

there are many exactly like that. I hope Adam's medical caregivers

are the " impressed with your knowledge " type, not the other type.

But I don't understand the reluctance about Zithromax. If he's

definitely culturing PA, then there's some underlying inflammation

REGARDLESS of symptoms -- and the Zithromax will address it and

prevent further damage.

I'd really insist upon Zithromax whenever there's a positive PA

culture. And studies show Cipro's power is boosted when given with

Zithromax.

I can try to locate that study again for you. Or maybe Torsten has

that one handy.

Kim

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

Hi everyone,

The drs are treating Adam's new friends with Cipro and Tobi. We are

waiting for the insurance to approve Tobi The drs said no to

Zithromax, x ray, and ct scan, because Adam isn't having any problems

yet. I wanted a xray to see how extensive the lungs are involved or

maybe the pseudos are still in the airway.

The next xray is not scheduled until April.Thank you for all of the

information.

The nurse wanted to know where I received my information.

W. mom to Adam and Alec both 7 w/cf, Chance 13ncf and Chase

16 ncf

[Guest guest]

Uh, oh... " The nurse wanted to know where I received my information. "

Over the years, I've learned this is either a good or bad omen. Did

the nurse seem impressed or defensive about your knowledge? Sometimes

medical caregivers get really " anxious " when faced with knowledgeable

parents.

It's stupid, I know, because the more information you have the more

you can participate in decisions. BUT there are still a few doctors,

nurses, technicians, etc. who don't want a parent's input -- they

just want to get through the day using what they know and with as

little new thinking or hassles as necessary.

I know lots of doctors and nurses aren't like that -- but I know

there are many exactly like that. I hope Adam's medical caregivers

are the " impressed with your knowledge " type, not the other type.

But I don't understand the reluctance about Zithromax. If he's

definitely culturing PA, then there's some underlying inflammation

REGARDLESS of symptoms -- and the Zithromax will address it and

prevent further damage.

I'd really insist upon Zithromax whenever there's a positive PA

culture. And studies show Cipro's power is boosted when given with

Zithromax.

I can try to locate that study again for you. Or maybe Torsten has

that one handy.

Kim

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

Hi everyone,

The drs are treating Adam's new friends with Cipro and Tobi. We are

waiting for the insurance to approve Tobi The drs said no to

Zithromax, x ray, and ct scan, because Adam isn't having any problems

yet. I wanted a xray to see how extensive the lungs are involved or

maybe the pseudos are still in the airway.

The next xray is not scheduled until April.Thank you for all of the

information.

The nurse wanted to know where I received my information.

W. mom to Adam and Alec both 7 w/cf, Chance 13ncf and Chase

16 ncf

[Guest guest]

The nurse was okay until I started pushing for the items after she told me the

drs said no. If you can find or let me know where I could look for the study

concerning the combination of the 2 drugs, I would appreciate it. We are going

in tomorrow for a refresher course in CPT.

W. mom to Adam and Alec both 7 wcf

" paynekimj " wrote:

> Uh, oh... " The nurse wanted to know where I received my information. "

>

> Over the years, I've learned this is either a good or bad omen. Did

> the nurse seem impressed or defensive about your knowledge? Sometimes

> medical caregivers get really " anxious " when faced with knowledgeable

> parents.

>

> It's stupid, I know, because the more information you have the more

> you can participate in decisions. BUT there are still a few doctors,

> nurses, technicians, etc. who don't want a parent's input -- they

> just want to get through the day using what they know and with as

> little new thinking or hassles as necessary.

>

> I know lots of doctors and nurses aren't like that -- but I know

> there are many exactly like that. I hope Adam's medical caregivers

> are the " impressed with your knowledge " type, not the other type.

>

> But I don't understand the reluctance about Zithromax. If he's

> definitely culturing PA, then there's some underlying inflammation

> REGARDLESS of symptoms -- and the Zithromax will address it and

> prevent further damage.

>

> I'd really insist upon Zithromax whenever there's a positive PA

> culture. And studies show Cipro's power is boosted when given with

> Zithromax.

>

> I can try to locate that study again for you. Or maybe Torsten has

> that one handy.

>

> Kim

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

>

>

> -------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

>

> ------------------------------------

>

>

>