Re: Pseudamonas

[Guest guest]

> I am curious about the experience most of you have had with

Pseudamonas. Once your child (or you) have cultured it, how long

have you been left on TOBI? Is it usually until you have a few clear

cultures? What is Pulmicort used for? Are most on TOBI and

something else at the same time? I want to compare my experience to

what most of you guys say.

>

> Thanks,

>

Peggy

Hello! This is the first time I am posting.I've enjoyed reading

posts and it's comforting to see other people out there who can

understand what life with Cf is like. Of course we pray for the day

that our loved ones no longer have to accept Cf as part of their

lives.After my 10 year old daughter was diagnosed I, like all of you

went through one heck of a difficult time. CF is a disease that

alienates us because it is difficult for anyone to understand a

different way of life than what one is accustomed. In time you learn

to enjoy life in spite of CF.My daughter takes alot of meds-more

than any CF children I know of but I think it's important to not

compare. This disease has so many variables when it comes to it's

progression. After her first hospitalization four years ago she

started on TOBI. After the second 3 years ago she started on

Pumozyme. She has taken Bactrim as a maintenance med for 4 years now

and cipro as needed. She also takes Prendisone(2 years now)as a

maintenance med........ Last spring her doctor tried to bring her

off of it but she can't handle it for longer than 2 weeks without

it. After months of trying I'm convinced she needs it as she is

allergic to everything. She has not been hospitalized for three

years so we are doing well!!!!!!!!!!!!We do what we have to do

inorder to keep our kids as " HEALTHY " as possible until a cure comes

along!

[Guest guest]

Peggy,

cultured PA in October. Her doctor said he treats PA

aggressively when it first shows up, so he put her on cipro for 2

weeks and Tobi for 28 days on 28 days 0ff. Her last culture was in

December and the PA was gone, but we are still doing Tobi.

Take care,

e

[Guest guest]

My son cultured PA for the first time in Oct. He was hospitalized

because he was quite ill, I think he had a viral infection as well. His

O2 sats were below 90. He was in IV Tobi and Cipro for 10 days. He is

on Tobi and Pulmicort. The pulmicort is because he has asthmatic like

symptoms as well. He also takes ventilin.

Cheryl

Pseudamonas

I am curious about the experience most of you have had with Pseudamonas.

Once your child (or you) have cultured it, how long have you been left

on TOBI? Is it usually until you have a few clear cultures? What is

Pulmicort used for? Are most on TOBI and something else at the same

time? I want to compare my experience to what most of you guys say.

Thanks,

Peggy

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be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

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

[Guest guest]

My daughter cultured PA for the first time in November. Her doc put her on Tobi

and Cipro. We had a bad experience with the Cipro, so he switched her to

Bactrim. She is on the Tobi for three months straight. They really want to

treat it as aggressively as they can. I guess I'll find out Friday if it was

aggressive enough. Her cultures should be back by then.

Katy

Mom to Austin 4 no CF & Piper 18 months w/CF

[Guest guest]

does Tobi (1/2 dose twice a day) and bactrim alternate months. She got

horrible diarrhea and a terrible yeast infection/rash from the Cipro. They

never even put her on the cipro when they started the tobi, because her reaction

was so bad. (ok they suggested it but I nixed it for fear of her losing weight)

PLEASE!!!! GET THE LEVELS (peak and trough) CHECKED FOR ANYONE UNDER 6 STARTING

ON TOBI!!!!!!!!!!!!!!!!!!!!!!!!!!!!! DO NOT ACCEPT THAT THEY WILL NOT HAVE A

PROBLEM BECAUSE IT IS NOT GOING DIRECTLY INTO THE BLOOD STREAM. INHALATION IS

HOW WE OXYGENATE OUR BLOOD SO IT DOES GO INTO THE BLOOD STREAM!!!!!!!!!!!!!

INSIST ON LEVELS BEING CHECKED!!!!!!

OK I'll stop screaming now!

who worries every time I hear of a little one going on Tobi even though

has done well on it

RE: Pseudamonas

My daughter cultured PA for the first time in November. Her doc put her on

Tobi and Cipro. We had a bad experience with the Cipro, so he switched her to

Bactrim. She is on the Tobi for three months straight. They really want to

treat it as aggressively as they can. I guess I'll find out Friday if it was

aggressive enough. Her cultures should be back by then.

Katy

Mom to Austin 4 no CF & Piper 18 months w/CF

[Guest guest]

,

Her levels have been checked and they are fine. Trust me after you told me

about it before she started the Tobi I called the clinic and insisted. They did

try to tell me that it wouldn't get into her bloodstream, etc.... But I told

them I wanted it anyway, so they did. So you can rest assured that Piper is

fine. is sure lucky to have a mom that is on top of things as well as

you are : )

Katy

ANDREA FITTING wrote:

does Tobi (1/2 dose twice a day) and bactrim alternate months. She got

horrible diarrhea and a terrible yeast infection/rash from the Cipro. They never

even put her on the cipro when they started the tobi, because her reaction was

so bad. (ok they suggested it but I nixed it for fear of her losing weight)

PLEASE!!!! GET THE LEVELS (peak and trough) CHECKED FOR ANYONE UNDER 6 STARTING

ON TOBI!!!!!!!!!!!!!!!!!!!!!!!!!!!!! DO NOT ACCEPT THAT THEY WILL NOT HAVE A

PROBLEM BECAUSE IT IS NOT GOING DIRECTLY INTO THE BLOOD STREAM. INHALATION IS

HOW WE OXYGENATE OUR BLOOD SO IT DOES GO INTO THE BLOOD STREAM!!!!!!!!!!!!!

INSIST ON LEVELS BEING CHECKED!!!!!!

OK I'll stop screaming now!

who worries every time I hear of a little one going on Tobi even though

has done well on it

RE: Pseudamonas

My daughter cultured PA for the first time in November. Her doc put her on Tobi

and Cipro. We had a bad experience with the Cipro, so he switched her to

Bactrim. She is on the Tobi for three months straight. They really want to treat

it as aggressively as they can. I guess I'll find out Friday if it was

aggressive enough. Her cultures should be back by then.

Katy

Mom to Austin 4 no CF & Piper 18 months w/CF

[Guest guest]

Hi Peggy,

Like I just said in my (I think) last post, my daughter wcf cultured

pseudomonas (PA)at the age of 2. At the time they didn't have Tobi or cipro.

She was not " that sick " so was not admitted for IV's (the only way to treat PA

at the time) I was concerned but was reassured that everyone gets it and we

don't treat unless there are symptoms. At various times since she has been

treated with inhaled tobramycin (before tobi), orals such as cipro, levaquin,

floxin, inhaled colymycin, and was admitted for her first tuneup at age nine.

She continued to culture PA until she was 13, and she hasn't cultured it since.

She had a lot of IV's between ages 9-13. Now she cultures staph and that is

usually when she gets sick when it flares up. She also cultures stenotrophomonas

maltophilia. It has been treated only with occasional Bactrim. We don't know if

the PA is gone or hiding. She has had bronch cultures etc and it hasn't shown

up. She is on Tobi for prevention. She hates it and says she will quit it as

soon as she is out from under my control. Love hearing that . She will be

on it until then or until her docs want her off it.

Pulmicort is an inhaled steroid. Ang has only been on it while in the hospital.

It is nebulized. At home she does flovent, a metered dose inhaler. She uses a

spacer with the inhaler. Steroids are used for inflammation. uses hers

to prevent asthma. She is not usually on another antibiotic except for Tobi.

Just when she gets sick.

I hope this helps.

love,

M

mom of Nick age 21 nocf and age almost 20 wcf

[Guest guest]

Hi Peggy...my sons dr had him on it for life...when we moved to fl

the dr experimentally took him off it and he was fine until he had

surgery, and then whamo!Its back....ended up on iv antibiotics and

think it might still be there, but we'll cross that road when we get

there.Back on tobi every other 28 days...OMG have to have it....no

chances taken here

Patty, mom to ty8wcf and 2 wocf

> I am curious about the experience most of you have had with

Pseudamonas. Once your child (or you) have cultured it, how long

have you been left on TOBI? Is it usually until you have a few clear

cultures? What is Pulmicort used for? Are most on TOBI and

something else at the same time? I want to compare my experience to

what most of you guys say.

>

> Thanks,

> Peggy

[Guest guest]

-I remember that day...I sat in the basement and cryed!! Since than

they have been on Tobi and cipro as needed. They are doing great. I just felt

and still do that its always ONE MORE thing added......to the never-ending life

with CF.

As much as it sucks think of it as good in that they now know and get treat

it early than letting it sit and grow and cause damage and scarring.

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

,

I had no idea your daughter tested for PA so young. I can only

imagine how it must have felt for them to not even treat it. I have

a different perspective now. I guess I just assumed that the older

kids cultured it for the first time much later in life. I have even

more hope now.

Sara

> Hi Peggy,

> Like I just said in my (I think) last post, my daughter wcf

cultured pseudomonas (PA)at the age of 2. At the time they didn't

have Tobi or cipro. She was not " that sick " so was not admitted for

IV's (the only way to treat PA at the time) I was concerned but was

reassured that everyone gets it and we don't treat unless there are

symptoms. At various times since she has been treated with inhaled

tobramycin (before tobi), orals such as cipro, levaquin, floxin,

inhaled colymycin, and was admitted for her first tuneup at age

nine. She continued to culture PA until she was 13, and she hasn't

cultured it since. She had a lot of IV's between ages 9-13. Now

she cultures staph and that is usually when she gets sick when it

flares up. She also cultures stenotrophomonas maltophilia. It has

been treated only with occasional Bactrim. We don't know if the PA

is gone or hiding. She has had bronch cultures etc and it hasn't

shown up. She is on Tobi for prevention. She hates it and says she

will quit it as soon as she is out from under my control. Love

hearing that . She will be on it until then or until her docs

want her off it.

>

> Pulmicort is an inhaled steroid. Ang has only been on it while in

the hospital. It is nebulized. At home she does flovent, a metered

dose inhaler. She uses a spacer with the inhaler. Steroids are used

for inflammation. uses hers to prevent asthma. She is not

usually on another antibiotic except for Tobi. Just when she gets

sick.

>

> I hope this helps.

> love,

> M

> mom of Nick age 21 nocf and age almost 20 wcf

[Guest guest]

I feel better after seeing this too. If I remember correctly,

's daughter has pretty good lung function also.

Thanks for sharing, .

Gale

> > Hi Peggy,

> > Like I just said in my (I think) last post, my daughter wcf

> cultured pseudomonas (PA)at the age of 2. At the time they didn't

> have Tobi or cipro. She was not " that sick " so was not admitted

for

> IV's (the only way to treat PA at the time) I was concerned but was

> reassured that everyone gets it and we don't treat unless there are

> symptoms. At various times since she has been treated with inhaled

> tobramycin (before tobi), orals such as cipro, levaquin, floxin,

> inhaled colymycin, and was admitted for her first tuneup at age

> nine. She continued to culture PA until she was 13, and she hasn't

> cultured it since. She had a lot of IV's between ages 9-13. Now

> she cultures staph and that is usually when she gets sick when it

> flares up. She also cultures stenotrophomonas maltophilia. It has

> been treated only with occasional Bactrim. We don't know if the PA

> is gone or hiding. She has had bronch cultures etc and it hasn't

> shown up. She is on Tobi for prevention. She hates it and says she

> will quit it as soon as she is out from under my control. Love

> hearing that . She will be on it until then or until her docs

> want her off it.

> >

> > Pulmicort is an inhaled steroid. Ang has only been on it while

in

> the hospital. It is nebulized. At home she does flovent, a

metered

> dose inhaler. She uses a spacer with the inhaler. Steroids are

used

> for inflammation. uses hers to prevent asthma. She is not

> usually on another antibiotic except for Tobi. Just when she gets

> sick.

> >

> > I hope this helps.

> > love,

> > M

> > mom of Nick age 21 nocf and age almost 20 wcf

[Guest guest]

Hi Sara,

I am glad that gives you hope. It was quite frightening when first

cultured the PA. I had read the " the life of a child " book and it mentions

probably more than once that pseudomonas is the harbringer of death or something

like that. I didn't know very many other cf parents at the time and I had only

the doctors to trust. If there had been a group like this back then I would

have insisted on IV's. Luckily things worked out. Ang was quite sick from PA

and other things as I mentioned from ages 9-12 or 13, she had a hard time with

puberty. It was treated then but probably not aggressively enough. One of the

reasons we changed CF centers.

Thanks for your comments!

love,

M

[Guest guest]

Hi Gale,

Yes 's FEV1 is in the 90's (when well--a little lower when sick). The

only lowish one is the one that measures small airway obstruction (I guess where

it starts). That one is in the 60's. I can't remember what that one is called.

She (we) have been very lucky. At one point she cultured 3 strains of PA and

one was mucoid and quite resistant. Like I said I don't know if they are gone

but I am thankful for Tobi and all the other drugs we have now. I think

Pulmozyme did a lot for her.

thanks Gale. I am so happy to give younger parents hope.

love,

M