Re: OH MY GOD,I'M SO Scared

[Guest guest]

In a message dated 1/14/2004 9:10:51 AM Central Standard Time,

findacureforcf@... writes:

I just got a call from 's clinic, he cultured Pseudomonos, is

being placed onto Tobi and Cipro.I don't know what to do? I am so scared. How

is does this affect his health? I am at a loss, I need you all for support

right now, I can't stop crying. I am so worried, I feel like I was just

suckered

punched through my heart. Please someone talk to me.

,

It's OK everyone with CF eventually gets pseudomonas. He will be fine!! How

old is he?? Deb A

[Guest guest]

,

My son, who is 7 now, wa\s on the same meds for psuedomonas. They have

decreased but haven't gone completely away. We are trying and following all the

Dr.'s orders and although he still cultures them, they are not affecting his

health. Don't worry, which I know that's easier said than done, he'll be fine.

I was like you when he cultured them nasty little buggers. All you can do now

is to give him the meds and wait and see. But is you don't see improvement

in a week then I'd call the Dr. I'm guessing that your son is sick and that's

why they're treating?

Good luck and I hope he conquers.

from PA

[Guest guest]

Ditto on what Tina said. That's what I was trying to say.

from PA

[Guest guest]

,

It is ok! The good thing is that there is medication and treatments. You

caught it early and it can be treated with the TOBI.

Take a deep breath. Get a wash cloth and wipe your face. This is not the

end of the world. This is just another phase of CF.

You will get through this just like you got through the diagnosis steps and

so on. Every time we go to clinic or go to the doctor it is like we hold

our breath until everything is done and all the tests come back and we can

finally breath a sigh of relief. I once said to our cf doc that whenever I

come to clinic I am a worse basket case than my daughter because you are

just waiting for the other shoe to drop. I didn't know whether to be

optimistic or just panicky. He said how about if you just be cautiously

optimistic. We are a true barometer of how our children are. If they seem

to be doing fine then they probably are. If they are having a bad time or

their cough is a little more then they are probably coming down with

something. With my daughter the weather changes are rough on her and her

sinuses. If it would just stay warm or cold we would do great.

, you are a good Mom and take good care of your children. Everything

will be ok.

Tina W., mother of , 18yo wcf

OH MY GOD,I'M SO Scared

I just got a call from 's clinic, he cultured Pseudomonos, is

being placed onto Tobi and Cipro.I don't know what to do? I am so scared.

How

is does this affect his health? I am at a loss, I need you all for support

right now, I can't stop crying. I am so worried, I feel like I was just

suckered

punched through my heart. Please someone talk to me.

, mommy of 5 years old w/cf/adhd and 2 years old no cf

[Guest guest]

,

It will be alright. I was told by CF clinic that almost all people with CF

culture pseudomonas at one point or another. This is not the end of the world.

The Cipro and Tobi might just get rid of it. cultured pseudomonas from

diagnosis at 9 months until this past fall. She was sick a lot for the first 15

months after diagnosis but, honestly I think it was because she was so small.

She continued to culture it for 2 & 1/2 more years and wasn't sick at all! I

know this sounds really scary but it is not going to be a huge thing. I know it

stinks to think that he is growing something but it's really going to be

alright.

Mom of 5 with CF and one on the way

OH MY GOD,I'M SO Scared

I just got a call from 's clinic, he cultured Pseudomonos, is

being placed onto Tobi and Cipro.I don't know what to do? I am so scared. How

is does this affect his health? I am at a loss, I need you all for support

right now, I can't stop crying. I am so worried, I feel like I was just

suckered

punched through my heart. Please someone talk to me.

, mommy of 5 years old w/cf/adhd and 2 years old no cf

[Guest guest]

Hi there,

Dry your tears, the list is here. You will hear that it is very common

& they do treat it very strongly. No one wants that infection-BUT-It

happens to a big majority of folks with CF.

The great thing is they have caught it & are treating it.

Read all your folks replies .SMILE................. You will be doing

all you & they can & it will help a great deal

Now read all your post answers

:)

LOVE & HUGS, GrandmomBEV

OH MY GOD,I'M SO Scared

I just got a call from 's clinic, he cultured Pseudomonos,

is

being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

is does this affect his health? I am at a loss, I need you all for

support

right now, I can't stop crying. I am so worried, I feel like I was just

suckered

punched through my heart. Please someone talk to me.

, mommy of 5 years old w/cf/adhd and 2 years old no

cf

[Guest guest]

,

I felt the same way in November when I got the call. It was almost

as bad as the call about his diagnosis. Zach was only 21 months old

and I thought the end was near. Luckily everyone on this list gave

me great advice about PA, Tobi and everything else. How is

feeling?

Sara

> I just got a call from 's clinic, he cultured Pseudomonos,

is

> being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

> is does this affect his health? I am at a loss, I need you all for

support

> right now, I can't stop crying. I am so worried, I feel like I was

just suckered

> punched through my heart. Please someone talk to me.

>

> , mommy of 5 years old w/cf/adhd and 2 years

old no cf

>

>

>

[Guest guest]

Hi: Pseudomonas comes in many varieties, and is a common bug for those

with CF. Cipro is an excellent medication for controlling pseudomonas,

which usually colonizes the lungs. I can no longer tolerate Cipro, so I

use Augmentin or Levaquin when it flares up. It depends a lot on

's ability to respond to the medications, and by using Tobi as

well as Cipro, that's quite a punch! By the way, pseudomonas is almost

everywhere, and difficult to prevent. It is not as difficult to contain

as it was years ago, and just be calm and let the antibiotics take

charge. I also recommend Breyer's chocolate fudge swirl ice cream as an

antidote at least two hours after the Cipro! Hal

OH MY GOD,I'M SO Scared

I just got a call from 's clinic, he cultured Pseudomonos,

is

being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

is does this affect his health? I am at a loss, I need you all for

support

right now, I can't stop crying. I am so worried, I feel like I was just

suckered

punched through my heart. Please someone talk to me.

, mommy of 5 years old w/cf/adhd and 2 years old no

cf

[Guest guest]

,

I really don't what else to tell you. After reading all the other

responses I just have to say I agree with what everyone has said. My

son is almost two. He cultured PA for the first time in Oct. He was

hospitalized for 11 days, on IV antibiotics the whole time, Cipro and

Tobi. He is now on inhaled Tobi and Pulmicort 3x/day. His last culture

was clear, thank god! But we continue with the masks, we must continue

with the masks regardless because of the weather and they want three

clear cultures before changing anything. I know exactly how you feel

and ya it really sucks. I am so glad you have all of us, we all have

each other. NO one can understand like we can. You will get thru this,

you have to get thru this. needs you. He needs you to be

strong. You can do it.

Cheryl, mom to 3 boys, Zac almost 8 yrs. wocf, Jake 3 yrs. wocf,

almost 2 yrs. wcf

OH MY GOD,I'M SO Scared

I just got a call from 's clinic, he cultured Pseudomonos,

is

being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

is does this affect his health? I am at a loss, I need you all for

support

right now, I can't stop crying. I am so worried, I feel like I was just

suckered

punched through my heart. Please someone talk to me.

, mommy of 5 years old w/cf/adhd and 2 years old no

cf

[Guest guest]

Hal, you have the best advice. I love reading your posts. Thanks for

keeping some humour during the rough times.

Cheryl

OH MY GOD,I'M SO Scared

I just got a call from 's clinic, he cultured Pseudomonos,

is

being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

is does this affect his health? I am at a loss, I need you all for

support

right now, I can't stop crying. I am so worried, I feel like I was just

suckered

punched through my heart. Please someone talk to me.

, mommy of 5 years old w/cf/adhd and 2 years old no

cf

[Guest guest]

Hi ,

When 's ( 10wcf) doctor called and said that he had good news

and bad news. Good news was she did not culture MRSA, bad news is

she cultured PA ( to which my reply was oooohhh S@*T!). I cried, I

freaked out and then I posted on the board. The response was amazing

and it truly made me feel better. PA is not the end of the world.

Everything will be ok. I noticed that after we were on Tobi for a

few weeks, that culturing PA really did not change anything. Our

routine changed a bit, but other than that, things were no different

than before. 's next culture showed no PA, but the MRSA came

back. Pa seems to be a funny bug in the way that it can hang around,

it can come and go or one day can disappear.

Hang in there!!

e, mom to 10 wcf and Ian 13 nocf

[Guest guest]

Bev, I do like that one, " Dry your tears; the list is here! " Very good!

Thank you--that one brightened my fogged-in day out here! Love,

n

OH MY GOD,I'M SO Scared

I just got a call from 's clinic, he cultured Pseudomonos,

is

being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

is does this affect his health? I am at a loss, I need you all for

support

right now, I can't stop crying. I am so worried, I feel like I was just

suckered

punched through my heart. Please someone talk to me.

, mommy of 5 years old w/cf/adhd and 2 years old no

cf

[Guest guest]

Slow down take a breath, I have three daughters and two with CF, they both

culture pseudomonas. I don't know a lot about that bacteria, but i do know that

there are a lot of good meds out there to help. i was told by her doctors

that if they catch it early that they may be able to get rid of it, You are in

my prayers.

Sandy

Mother of three daughters 4 yo w/CF - Kenedy, 6 yo no CF - and 7 yo

w/CF - Kaylee

[Guest guest]

Dear ,

Everyone is right, most pwcf do culture pseudomonas. My daughter did at 2. At

the time they did not even treat it. Now they do, so feel better that it is

being treated. My daughter is now almost 20 and doing well, weird thing she

hasn't cultured pseudo since she was 13. We don't know if it is gone or hiding.

She is still on Tobi as prevention. We are here for you, if you have any

questions or problems, just ask. Most of us have been through it too, and it

will be OK.

love,

M

[Guest guest]

...please dont panic...everybody gets it!are you thinking od

cepacia that ur so upset.Antibiotics will take care of it, ssome in a

shorter time than in others.

My son had it 2x before...last time he was on iv antibiotis...dont

think its gone, but is staying on tobi every other month indefinitely

to help.I promise its common for cfers and im certain your drs will

handle it accordingly

Patty, mom to ty 8wcf and 2wocf

> I just got a call from 's clinic, he cultured Pseudomonos,

is

> being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

> is does this affect his health? I am at a loss, I need you all for

support

> right now, I can't stop crying. I am so worried, I feel like I was

just suckered

> punched through my heart. Please someone talk to me.

>

> , mommy of 5 years old w/cf/adhd and 2 years old

no cf

>

>

>

[Guest guest]

Thanks. & it is so true,

L & H,

GRDMBEV

Re: OH MY GOD,I'M SO Scared

Bev, I do like that one, " Dry your tears; the list is here! " Very

good! Thank you--that one brightened my fogged-in day out here! Love,

n

OH MY GOD,I'M SO Scared

I just got a call from 's clinic, he cultured Pseudomonos,

is

being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

is does this affect his health? I am at a loss, I need you all for

support

right now, I can't stop crying. I am so worried, I feel like I was

just

suckered

punched through my heart. Please someone talk to me.

, mommy of 5 years old w/cf/adhd and 2 years old no

cf

[Guest guest]

,

I am sorry to hear that cultured Pa. I know that all of our

babies wcf will culture it at sometime, but I am sure that the first

time, and maybe even everytime, it will be very upsetting.

Thinking of you,

Gale

> I just got a call from 's clinic, he cultured Pseudomonos,

is

> being placed onto Tobi and Cipro.I don't know what to do? I am so

scared. How

> is does this affect his health? I am at a loss, I need you all for

support

> right now, I can't stop crying. I am so worried, I feel like I was

just suckered

> punched through my heart. Please someone talk to me.

>

> , mommy of 5 years old w/cf/adhd and 2 years old

no cf

>

>

>