Re: a question about my childs cf and pseudomonas

December 7, 2002

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!

December 7, 2002

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

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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.

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

December 7, 2002

Thank you for the uplifting letter, I like to hear of older adults and

children doing well.

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December 7, 2002

Thank you for the uplifting letter, I like to hear of older adults and

children doing well.

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December 7, 2002

Thank you for the uplifting letter, I like to hear of older adults and

children doing well.

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December 7, 2002

I pray that this will go dorment for awhile, at least until she is older and

stronger. I had her tested every 1-2 months, so I think since she only

tested 1+ and is doing so well that we will pull through this like every

other day. She is just so young and things change so fast, each day is

different from the next. I think I might feel safer when she's up talking

back and being a little monkey like my son. I keep hoping docs are wrong and

there's a big chance that it will go away, She's too much of a fighter for

this to keep her down, nasty little bacteria.

docs always wanted to keep us in the hospital cause she spit green, but she

always has and her o2 is so good. They told me they had never heard of a

young baby coughing it up, but they also didn't think she could eat her

enzymes in pears at two months. She showed them!! suni in KS.

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December 7, 2002

Hi Suni (is that your name, I'm not sure?)

My daughter is 18 wcf. She first cultured pseudomonas a. when she was

about 2 1/2. At the time they didn't treat it. When she was around 5 she had a

flare up and they gave her inhaled Tobra (no TOBI then) for the first time. At

other times following she got cipro when she got sick and usually after some

other antibiotic didn't work. Sometimes they would give her inhaled Tobra

instead or maybe both, I can't exactly remember. When she was 9, almost 10, she

was admitted for her first tune-up.

When she was 11 she had one of her (12 or 13) sinus surgeries and was found to

be resistant to cipro, so she went on home IV's then, I think it was Tobra and

Ceftaz. For the next few years she was on and off IV's and she had several more

sinus surgeries, around once every 6 months. We had a falling out with her CF

docs and changed hospitals, that was when she was 13. She was on IV's after

that but that was the last time for over 3 years. Also she didn't culture

pseudomonas a.anymore, she cultured stenotrophomonas (SP?) maltophilia. It has

been like this ever since we changed hospitals except for once she had a slight

growth of psuedo. She has had staph in her cultures, the S Maltophilia and

sometimes aspergillus. I don't know why she doesn't culture psuedo anymore.

She is on Tobi now anyway and has been for I think around 2 years. The last time

she was in the hospital she was pretty sick with pneumonia and needed sinus

surgery again. I think she was put on Tobra and Ceftaz then too. And she

hasn't needed IV's since then, 3 years ago. I hope this isn't too confusing. I

don't know if she has psuedomonas in her lungs now or not. I honestly feel like

it's probably still there lurking, and the Tobi is keeping it in check. I hope.

Any questions, please feel free to ask if I can help make this clearer.

love,

Mom of Nick age 20 nocf

and age 18 wcf