Re: a question about my childs cf and pseudomonas

[Guest guest]

Hi, if the PA was detected solely by throat culture there is still the hope

that it is primarily in the sinuses and not the lungs. A good ENT doctoris a

blessing for many with cf--was for me!

Best of luck to you all in this,

n, wcf, cfrd, who grows pseudomonas, is now 65, and whose

children are older adults: two carriers and youngest wcf, 36 with low

level PA--all surviving, and wish we could send our dna or whatever it

is that is in our clan to you! My cfkid and I have both had roto-rooter

sinus surgeries and have done so much better as a result!

[Guest guest]

Hi, if the PA was detected solely by throat culture there is still the hope

that it is primarily in the sinuses and not the lungs. A good ENT doctoris a

blessing for many with cf--was for me!

Best of luck to you all in this,

n, wcf, cfrd, who grows pseudomonas, is now 65, and whose

children are older adults: two carriers and youngest wcf, 36 with low

level PA--all surviving, and wish we could send our dna or whatever it

is that is in our clan to you! My cfkid and I have both had roto-rooter

sinus surgeries and have done so much better as a result!

[Guest guest]

My daughter also cultured positive pseduomonas a couple of years ago (she's five

now). She went on TOBI (an inhaled antibiotic) and hasn't cultured positive for

it in a long time. I never noticed a difference in her health when she " had " it

and when she didn't. Some people say that once you have it you can never get

rid of it but she hasn't had a positive culutre for it in such a long time.

Lori in Florida, Mom to 3, 1wcf

a question about my childs cf and pseudomonas

I'm 21, married, with two children. My daughter, nine months old has

cystic fibrosis. Dec.3 her throat culture came back positive for

pseudomonas. I know this makes the battle worse. I have been to

doctors in Wichita Ks., I am getting ready to see a new doctor in

Kansas City at the first of the week. I'm tired of doctors(I know I

need them}But I am ready to hear other peoples stories and opionions.

I'm making it my lifes' mission to find all the answers to make her

life easier. I would like to know what is up ahead on the road of

her childhood. It has already been hard, but I know not as hard as

many others. If you can tell me what you know of pseudomonas and

it's effects on children or tell me your story {mother's,

father's,grandparent's, patients, or friends} Please email me at

suni622@... ASAP Thank you

-------------------------------------------

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]

I have tried not to ask this stupid question , I thought I would be able to

figure out what this is.......I can't ;0)

Nanci

a question about my childs cf and pseudomonas

I'm 21, married, with two children. My daughter, nine months old has

cystic fibrosis. Dec.3 her throat culture came back positive for

pseudomonas. I know this makes the battle worse. I have been to

doctors in Wichita Ks., I am getting ready to see a new doctor in

Kansas City at the first of the week. I'm tired of doctors(I know I

need them}But I am ready to hear other peoples stories and opionions.

I'm making it my lifes' mission to find all the answers to make her

life easier. I would like to know what is up ahead on the road of

her childhood. It has already been hard, but I know not as hard as

many others. If you can tell me what you know of pseudomonas and

it's effects on children or tell me your story {mother's,

father's,grandparent's, patients, or friends} Please email me at

suni622@... ASAP Thank you

-------------------------------------------

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]

I have tried not to ask this stupid question , I thought I would be able to

figure out what this is.......I can't ;0)

Nanci

a question about my childs cf and pseudomonas

I'm 21, married, with two children. My daughter, nine months old has

cystic fibrosis. Dec.3 her throat culture came back positive for

pseudomonas. I know this makes the battle worse. I have been to

doctors in Wichita Ks., I am getting ready to see a new doctor in

Kansas City at the first of the week. I'm tired of doctors(I know I

need them}But I am ready to hear other peoples stories and opionions.

I'm making it my lifes' mission to find all the answers to make her

life easier. I would like to know what is up ahead on the road of

her childhood. It has already been hard, but I know not as hard as

many others. If you can tell me what you know of pseudomonas and

it's effects on children or tell me your story {mother's,

father's,grandparent's, patients, or friends} Please email me at

suni622@... ASAP Thank you

-------------------------------------------

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]

I have tried not to ask this stupid question , I thought I would be able to

figure out what this is.......I can't ;0)

Nanci

a question about my childs cf and pseudomonas

I'm 21, married, with two children. My daughter, nine months old has

cystic fibrosis. Dec.3 her throat culture came back positive for

pseudomonas. I know this makes the battle worse. I have been to

doctors in Wichita Ks., I am getting ready to see a new doctor in

Kansas City at the first of the week. I'm tired of doctors(I know I

need them}But I am ready to hear other peoples stories and opionions.

I'm making it my lifes' mission to find all the answers to make her

life easier. I would like to know what is up ahead on the road of

her childhood. It has already been hard, but I know not as hard as

many others. If you can tell me what you know of pseudomonas and

it's effects on children or tell me your story {mother's,

father's,grandparent's, patients, or friends} Please email me at

suni622@... ASAP Thank you

-------------------------------------------

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]

Positive pseudomonas, now personaly I'm still trying to find out more. I do

know that it is a bacteria that is pretty much everywhere. It doesn't mean

much danger to the normal lungs but in CF patients in causes bad infections,

in infants I've heard it can be deadly: I think that's if you don't catch it

in time. Docs say that it's almost impossible to get rid of, but that it

can lurk inside and not show up for many years; you pray that once a culture

comes bak negative that it will stay that way, it's that way with these

nasty bacterias. I know that one of the biggest breading grounds for

pseudomonas is standing water, like if you have a house plant in a vase of

water that isn't changed, or a fish tank that doesn't filter, dog water that

just sits there for day's or if a nebulizer isn't washed properly. I'm

still learning, but once you know it breads in standing water you can come

up with all kinds of ideas I guess. Now we had a 55 gallon fish tank,

filtered, taken care of, but when we moved, decided that we didn't like the

idea of all that water. Anyway I don't know much, I'm getting hope from many

mothers that this is just another hurdle to get past, and maybe with a

little faith my daughter will come through this just fine.

write anytime, Suni,(like sunny just spelled wierd)

>

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[Guest guest]

Positive pseudomonas, now personaly I'm still trying to find out more. I do

know that it is a bacteria that is pretty much everywhere. It doesn't mean

much danger to the normal lungs but in CF patients in causes bad infections,

in infants I've heard it can be deadly: I think that's if you don't catch it

in time. Docs say that it's almost impossible to get rid of, but that it

can lurk inside and not show up for many years; you pray that once a culture

comes bak negative that it will stay that way, it's that way with these

nasty bacterias. I know that one of the biggest breading grounds for

pseudomonas is standing water, like if you have a house plant in a vase of

water that isn't changed, or a fish tank that doesn't filter, dog water that

just sits there for day's or if a nebulizer isn't washed properly. I'm

still learning, but once you know it breads in standing water you can come

up with all kinds of ideas I guess. Now we had a 55 gallon fish tank,

filtered, taken care of, but when we moved, decided that we didn't like the

idea of all that water. Anyway I don't know much, I'm getting hope from many

mothers that this is just another hurdle to get past, and maybe with a

little faith my daughter will come through this just fine.

write anytime, Suni,(like sunny just spelled wierd)

>

_________________________________________________________________

MSN 8 helps eliminate e-mail viruses. Get 2 months FREE*.

http://join.msn.com/?page=features/virus

[Guest guest]

Sorry to write two emails right after each other, but could you also explain

tune-up for me, and how you know it's time for one?

Thank you, suni

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[Guest guest]

Suni,

My daughter Sharada is 5y 6mo old. She was detected for PA about 18

months back for the first time and was having her sputum culture

positive many times. During all the time she used to take inhaled

Tobra & oral Ciprofloxacin. PA came and went many times. Recently We

admitted her to hospital for the first time for 2 weeks for IV and

later her culture is negative & we hope that PA does not turn up

again for a long time.

She is very active & happy girl, goes to school & gives her mom a

tough time while at home.

Given the fact that we are staying in United Arab Emirates where CF

is not known much this is a good progress.

I am sure your daughter will do wonderful with a good care.

Thanks.

Shrikant

> My daughter also cultured positive pseduomonas a couple of years

ago (she's five now). She went on TOBI (an inhaled antibiotic) and

hasn't cultured positive for it in a long time. I never noticed a

difference in her health when she " had " it and when she didn't. Some

people say that once you have it you can never get rid of it but she

hasn't had a positive culutre for it in such a long time.

>

> Lori in Florida, Mom to 3, 1wcf

> a question about my childs cf and pseudomonas

>

>

> I'm 21, married, with two children. My daughter, nine months old

has

> cystic fibrosis. Dec.3 her throat culture came back positive for

> pseudomonas. I know this makes the battle worse. I have been to

> doctors in Wichita Ks., I am getting ready to see a new doctor in

> Kansas City at the first of the week. I'm tired of doctors(I

know I

> need them}But I am ready to hear other peoples stories and

opionions.

> I'm making it my lifes' mission to find all the answers to make

her

> life easier. I would like to know what is up ahead on the road

of

> her childhood. It has already been hard, but I know not as hard

as

> many others. If you can tell me what you know of pseudomonas and

> it's effects on children or tell me your story {mother's,

> father's,grandparent's, patients, or friends} Please email me at

> suni622@h... ASAP Thank you

>

>

>

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

> 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]

Suni,

My daughter Sharada is 5y 6mo old. She was detected for PA about 18

months back for the first time and was having her sputum culture

positive many times. During all the time she used to take inhaled

Tobra & oral Ciprofloxacin. PA came and went many times. Recently We

admitted her to hospital for the first time for 2 weeks for IV and

later her culture is negative & we hope that PA does not turn up

again for a long time.

She is very active & happy girl, goes to school & gives her mom a

tough time while at home.

Given the fact that we are staying in United Arab Emirates where CF

is not known much this is a good progress.

I am sure your daughter will do wonderful with a good care.

Thanks.

Shrikant

> My daughter also cultured positive pseduomonas a couple of years

ago (she's five now). She went on TOBI (an inhaled antibiotic) and

hasn't cultured positive for it in a long time. I never noticed a

difference in her health when she " had " it and when she didn't. Some

people say that once you have it you can never get rid of it but she

hasn't had a positive culutre for it in such a long time.

>

> Lori in Florida, Mom to 3, 1wcf

> a question about my childs cf and pseudomonas

>

>

> I'm 21, married, with two children. My daughter, nine months old

has

> cystic fibrosis. Dec.3 her throat culture came back positive for

> pseudomonas. I know this makes the battle worse. I have been to

> doctors in Wichita Ks., I am getting ready to see a new doctor in

> Kansas City at the first of the week. I'm tired of doctors(I

know I

> need them}But I am ready to hear other peoples stories and

opionions.

> I'm making it my lifes' mission to find all the answers to make

her

> life easier. I would like to know what is up ahead on the road

of

> her childhood. It has already been hard, but I know not as hard

as

> many others. If you can tell me what you know of pseudomonas and

> it's effects on children or tell me your story {mother's,

> father's,grandparent's, patients, or friends} Please email me at

> suni622@h... ASAP Thank you

>

>

>

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

> 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.

>

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

>

>

>