Tristan's bronch results

[Guest guest]

Hi Amy,

the pseudomonas is a bummer :-(((

But then it is not the end of the world, just a step in the wrong direction. I

know a few cases,

where they could eradicate that bacteria from the lung (i.e. negative cultures

for several years and

no antibodies anymore in the blood). And a friend of mine got his pseudomonas as

a late teen. Today

he is 35, married, works full time and the pseudomonas somehow doesn't affect

him, although it is

always there.

Regarding the length of a neb treatment, that depends majorly on the compressor

and the nebulizer

you use. Make sure you have a powerful compressor, the Pari LC plus nebulizer

should come as a

freebie with the TOBI.

Last year I talked with Dr. Bowman (previously CF doc in L.A., now in

Charlotte) about this.

He was involved in the 96 week clinical trial of TOBI and they have advised

their patients to stop

the treatment after 20 minutes. Usually almost all of the TOBI should be used by

then and the rest

went into the trash. He found it to be unacceptable for a treatment to last

longer than this.

Peace

Torsten, dad of Fiona 4wcf

[Guest guest]

Who told you the Tobi was 3 times per day? When my child was 6 months old,

he went on to TOBI (which wasn't even approved for babies at that point) for

6 months but only had one treatment per day. 3 times per day sounds rather

extreme -- especially since the 15-45 minute time frame sounds similar. But,

the good news is, my child is now almost 4, and hasn't cultured pseudo since

that fateful december in 1998 -- and he's had about 20 throat cultures since

then, and he's not on any antibiotic. Good luck -- but check out about the

three times a day. That doesn't sound right.

[Guest guest]

Sorry to hear Tristan has Pseudomonas. I was pretty crushed when Joy

was diagnosed with it, too. I don't think it's the monster it used

to be, though. There are antibiotics that at the very least restrict

it's growth, and pulmozyme that undoes some of its damage. There's

still hope that it can even be eradicated. Don't give up hope!!!

Hugs,

Ann, Mommy of Joy w/cf @ 23 months

[Guest guest]

In a message dated 11/7/2001 12:23:43 AM Eastern Standard Time,

gdattig@... writes:

<< Why are they starting him on Tobi? and I thought Tobi was done 2 times a

day?

We are on Collistin and it is done 3 times a day and each session takes

about

15 minutes. >>

Different Drs. do different treatments. We do Coly twice a day - never 3

times. We do Tobi - which takes30 minutes for my 5 yr. and 20 for my 8 yr.,

twice a day every other 28 days!!!!

Its difficult to COMPARE because different Centers do things

different..........yes, usually they grow a PA later - mine 8 yr. grew it at

age 6 my 5 yr. grew it at 6 months GO FIGURE.

CF PRESENTS different ...........

My soap box comments........

Rosemary in New York with three children with CF - they are 11, 8.11, 5.......

I coined the phrase " BREATHE DAMMIT "

[Guest guest]

In a message dated 11/7/2001 7:40:41 AM Eastern Standard Time,

aberdeen95@... writes:

<< He was involved in the 96 week clinical trial of TOBI and they have

advised their patients to stop

the treatment after 20 minutes. Usually almost all of the TOBI should be

used by then and the rest

went into the trash. He found it to be unacceptable for a treatment to last

longer than this. >>

WOW..Do I love that...I was told something similiar about Coly lasting more

than 30 minutes........

Rosemary in New York with three children with CF - they are 11, 9, 5.......

I coined the phrase " BREATHE DAMMIT "

[Guest guest]

In a message dated 11/8/2001 10:03:34 AM Eastern Standard Time,

.P.Bentley@... writes:

<< In particular pseudomonas aerogenosa is a

common bacterial growth on children with CF but the role of that germ in

actually causing infection is debatable and it can certainly be very

difficult to eradicate from the sputum " . >>

I have been told that you cannot eradicate it. You can CONTROL it by meds.

I was also advised not to get excited by a False Negative Culture - that only

means that they missed the PA........

Sorry to be a downer.......When they first get a PA they tend to be very

agressive to get it under control..........

Rosemary in New York with three children with CF - they are 11, 9, 5.......

I coined the phrase " BREATHE DAMMIT "

[Guest guest]

Mirella,

Thank you for the encouragement.

Amy

Tristan's bronch results

Dear Amy,

each treatment of Tobi takes about 15 minutes. I have 2 treatments a

day, for 28 days.

I don't remember when they diagnosed my pseudomonas, because many years

ago this was not known as a problem. Now my pseudomonas is not

eradicable, and I have staphilo too. My life is almost normal, I can

work and attend my responsabilities. I am a 43wcf woman, I couldn't have

any children, I had several IV therapy, but my life is not so bad. I

know my cf is not severe, but I think at present the possibilities are

quite better than in the past.

Good Luck for Tristan

Mirella, 43wcf

PLEASE do not post religious emails to the list.

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

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]

,

Tristan has been on a mask for albuterol. At first he hated it, but now he

really doesn't mind it. We put it on with the strap around his head and then

we don't have to hold it, so I can play little games with him, read to him,

etc. while he is doing the treatment. Also, we let him hold the mask while

getting everything ready and then he turns the machine on and turns it off

when it is done and he always gives us five at the end(: These are just a

few little rituals that we have found really help. Also, I guess I hope it

starts him off from the beginning with some responsibility for his

treatments. Even though he is only 18months, just little things like turning

the machine on and off are something he can do independently and he likes

doing.

Amy

Re: Tristan's bronch results

Amy,

Eilish (my 4 yr old) is on IV's at the moment and she to has cultured

pseudo. but not for the 1st time but its still resistant. We use the

Danish

treatment of 3 months Cipro. and Colistin. It is time consuming and Im

not

looking forward to it. Also physio 3x a day, but we've been doing that

since she was 3 weeks old anyway. Has he been on a mask before??

(mummy to Liam 7wocf & Eilish 4wcf)

Tristan's bronch results

> Hi all,

>

> We heard from the clinic about Tristan's bronch results. During the

bronch,

> they realized that he has " something " stinosis, meaning that his nasal

> passages are too narrow and it was hard to get the bronchoscope down

through

> his nasal passages. This explains his chronic congestion. We stayed in

the

> room during the bronch. I am glad we did. Even though it was hard to

watch

> him go through that, at one point near the beginning of the procedure,

I

saw

> him looking around seeming scared and confused and I said Mommy's

still

> here, tristan it's okay and he made eye contact with me and seemed to

relax

> a little, so even though it was hard, I was glad to be there with him.

They

> got the results today and we were really sad and disappointed b/c he

does

> have pseudomonas so we will be starting a three month treatment of

tobi

and

> one month on cipro. I am feeling so overwhelmed and exhausted just

trying

to

> soak everything in and get myself prepared for the next three months

of

> treatments. I am a little scared that I will do something wrong with

trying

> to manage all these treatments and medications. Does anyone know about

how

> long it takes for each treatment of Tobi. Our nurse said anywhere from

15

> minutes to the longest she knew of was 45 minutes? The 45 minute thing

> sounds like so long esp. since we are going to be doing it three times

a

day

> on top of chest pt, etc.

>

> What is hard for me is that he seems so happy and healthy that I just

don't

> understand how he can be so sick. He has a little bit of a cough, but

beyond

> that he eats great, sleeps fine, is way active!!!, and not fussy at

all,

but

> very cheerful and content. It just took us by surprise that he already

has

> this bacteria. Is it common for people to get pseudomonas early on and

do

> they still have a good chance of having a good life expectancy? I was

> prepared for 20-30years old, but I just don't want to think about

less.

> Sorry if I sound rambling, but I'm really tired and just nervous about

the

> next few months.

>

> Amy, mom of Skyler (4wocf) and Tristan (18monthswcf)

>

> PLEASE do not post religious emails to the list.

>

>

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

>

>

> 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]

Dear Mirella,

sorry to interrupt on your conversation and sorry to hear about Tristan. I

hoping either you or someone out there may be able to answer my question.

My son , has just been diagnosed with what our consultant called

pseudomonas and he said it needs to be eradicated as soon as possible (as

is only 5 months old it is probably possible). However, our GP

recently replied to a letter I sent on the subject of swabs being taken. In

the letter he says " We will quite frequently, in children with CF, grow

certain bacteria on a cough swab, but they may not be bacteria which are

actually causing an infection. In particular pseudomonas aerogenosa is a

common bacterial growth on children with CF but the role of that germ in

actually causing infection is debatable and it can certainly be very

difficult to eradicate from the sputum " . Yesterday the consultant put

on a neb and said he would have to go in to hospital for an " aggressive 2

weeks of IV antibiotics " to get rid of this bug.

My doctor doesn't seem to know what he is talking about, or is it just me

reading the letter wrongly?

Can you help?

Bentley

GI Helpdesk Analyst

Shell Information Technology International Limited

Rowlandsway, Wythenshawe, Manchester M22 5SB, United Kingdom

Tel: +44

Email: .P.Bentley@...

Internet: http://www.shell.com http://www.shell.com/>

Tristan's bronch results

Dear Amy,

each treatment of Tobi takes about 15 minutes. I have 2 treatments a

day, for 28 days.

I don't remember when they diagnosed my pseudomonas, because many years

ago this was not known as a problem. Now my pseudomonas is not

eradicable, and I have staphilo too. My life is almost normal, I can

work and attend my responsabilities. I am a 43wcf woman, I couldn't have

any children, I had several IV therapy, but my life is not so bad. I

know my cf is not severe, but I think at present the possibilities are

quite better than in the past.

Good Luck for Tristan

Mirella, 43wcf

PLEASE do not post religious emails to the list.

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

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]

Hi

Our son was diagnoesd with Pseudomonas aged 5 months. We are in the

Newcastle RVI CF team. Dylan ( our son ) went through the 2 weeks IV's and 3

months worth of nebs ( colomycin ). He has now - or on the last swab test -

got rid of it. Whether the Pseudomonas was in his lungs as well as his

throat we do not know. However, this is a carbon copy of how the Danes treat

this bug, and as they have the best stats with regard to life expectancy

then we were happy to go with it.

Although hard work for three months - it is best to go with what the cf team

advise. If you have any concerns you can always contact the team at the

Brompton Hospital in London (Dr Ian Balfour-Lyn is brillant) and we always

use them if we need a second opinion.

Hope this helps.

Best wishes

Lucinda and Guy Fleming-, Durham, UK

son Dylan, 8 months with CF

>

>Reply-To: cfparents

>To: " cfparents cfparents >

>Subject: RE: Tristan's bronch results

>Date: Thu, 8 Nov 2001 15:47:51 +0100

>

>Dear Mirella,

>

>sorry to interrupt on your conversation and sorry to hear about Tristan. I

>hoping either you or someone out there may be able to answer my question.

>My son , has just been diagnosed with what our consultant called

>pseudomonas and he said it needs to be eradicated as soon as possible (as

> is only 5 months old it is probably possible). However, our GP

>recently replied to a letter I sent on the subject of swabs being taken.

>In

>the letter he says " We will quite frequently, in children with CF, grow

>certain bacteria on a cough swab, but they may not be bacteria which are

>actually causing an infection. In particular pseudomonas aerogenosa is a

>common bacterial growth on children with CF but the role of that germ in

>actually causing infection is debatable and it can certainly be very

>difficult to eradicate from the sputum " . Yesterday the consultant put

>

>on a neb and said he would have to go in to hospital for an " aggressive 2

>weeks of IV antibiotics " to get rid of this bug.

>My doctor doesn't seem to know what he is talking about, or is it just me

>reading the letter wrongly?

>

>Can you help?

>

>

> Bentley

>GI Helpdesk Analyst

>Shell Information Technology International Limited

>Rowlandsway, Wythenshawe, Manchester M22 5SB, United Kingdom

>

>Tel: +44

>Email: .P.Bentley@...

>Internet: http://www.shell.com http://www.shell.com/>

>

> Tristan's bronch results

>

>

>Dear Amy,

>each treatment of Tobi takes about 15 minutes. I have 2 treatments a

>day, for 28 days.

>I don't remember when they diagnosed my pseudomonas, because many years

>ago this was not known as a problem. Now my pseudomonas is not

>eradicable, and I have staphilo too. My life is almost normal, I can

>work and attend my responsabilities. I am a 43wcf woman, I couldn't have

>any children, I had several IV therapy, but my life is not so bad. I

>know my cf is not severe, but I think at present the possibilities are

>quite better than in the past.

>

>Good Luck for Tristan

>

>Mirella, 43wcf

>

>

>

>PLEASE do not post religious emails to the list.

>

>

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

>

>

>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.

>

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

>

>

>