pseudomonas ques

[Guest guest]

Hit that pseudomonas and hit it hard--the sooner the better, said she who got

it

blasted and hardly has any now, many years later!

n Rojas, the official " CF Nut! "

[Guest guest]

I am wondering if anyone can give me some information. My daughter

has cultured pseudomonas and they told me they do not want to treat

it. They said that since she has no illness symptom (fever) and that

this is her first time that they want to wait to see if she cultures

it again. At first they told me to bring her back in two months but

when I continued to question them they said I could bring her back in

one month. Has anyone had this experience? I am trying to have

faith in the Drs but we are new to this and I am afraid that they are

not being aggressive enough. She has also dropped from the 15%tile in

height to below the 5%tile while her weight remained near the 25%

tile. Has anyone seen that happen with their kids. They want me to

start adding butter to her rice cereal (she is 5 months old). Will

the added fat help her height? Any info on this would be helpful.

Thanks,

Amy

Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

[Guest guest]

Amy,

Id MAKE them treat her now not wait until it gets a foot hold. My daughter

cultured it 3 times and they treated it aggresively each time and her latest

bronc. showed none. I cant stress enough how important it is to try and get

on top of this before its

colonised and then cant be gotten rid off. We use inhaled colistin and oral

ciproxin combined, as they work better in together than just one. We just

follow the danish programme where they have the least amount of pseudo. Ask

your doctor to look into it. Is the dr. part of a cf clinic or a gp. I

also have a friend who's little boy cultured it 4 years ago and did the

above treatment and hasnt had it return. I suppose each case is individual

but , gee whiz, everything is worth the try. I think some doctors are

passive, when I like and have an aggressive specialist otherwise Id swap

dr's. Can you ask another opinion at your clinic. Or tell this is what YOU

WANT to do for YOUR child.

BEst of Luck

Good luck,

pseudomonas ques

> I am wondering if anyone can give me some information. My daughter

> has cultured pseudomonas and they told me they do not want to treat

> it. They said that since she has no illness symptom (fever) and that

> this is her first time that they want to wait to see if she cultures

> it again. At first they told me to bring her back in two months but

> when I continued to question them they said I could bring her back in

> one month. Has anyone had this experience? I am trying to have

> faith in the Drs but we are new to this and I am afraid that they are

> not being aggressive enough. She has also dropped from the 15%tile in

> height to below the 5%tile while her weight remained near the 25%

> tile. Has anyone seen that happen with their kids. They want me to

> start adding butter to her rice cereal (she is 5 months old). Will

> the added fat help her height? Any info on this would be helpful.

> Thanks,

> Amy

> Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

>

>

>

>

>

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[Guest guest]

Amy

HMMM, 5 months old, cultures pseudo, and the docs want to do NOTHING?????

I guess some docs still do subscribe to that theory, where are you, anyway?

What do others think? Maybe I am just not the person to comment right now on

this topic, but if it were me, I would be very concerned.....

Jen

[Guest guest]

n,

Eilish had her check up today and they said that her pseudo. still didnt

seem to be there, although they said its always a case of fingers crossed.

I mentioned to her specialist that some people dont treat it aggressively

(meaning the dr's.) He thinks thats because some dont want to build up a

resistance to antibiotics. But I know at this point in our life that my

'mission' is to keep that damn thing away, whatever it takes,.

Merry Christmas

(mummy to Liam 6 wocf & Eilish 3 wcf)

Re: pseudomonas ques

> Hit that pseudomonas and hit it hard--the sooner the better, said she who

got

> it

> blasted and hardly has any now, many years later!

> n Rojas, the official " CF Nut! "

>

>

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> This is a secular list.

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>

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>

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TREATMENTS.

>

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>

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[Guest guest]

I would insist on the Dr's treating this as aggressively as possible.

My son Harry (2 months old wcf) has just cultured Psuedo and has no

symptoms. Our CF clinic immediately put him on Cipro and inhaled Colostin

for three weeks and they will then revue the treatment after further swabs.

If it has not cleared they say they will get even more aggressive with it.

Remember he's your child not theirs!!

Barry

Father of Harry (2 months old wcf) and Jack 5wocf

pseudomonas ques

I am wondering if anyone can give me some information. My daughter

has cultured pseudomonas and they told me they do not want to treat

it. They said that since she has no illness symptom (fever) and that

this is her first time that they want to wait to see if she cultures

it again. At first they told me to bring her back in two months but

when I continued to question them they said I could bring her back in

one month. Has anyone had this experience? I am trying to have

faith in the Drs but we are new to this and I am afraid that they are

not being aggressive enough. She has also dropped from the 15%tile in

height to below the 5%tile while her weight remained near the 25%

tile. Has anyone seen that happen with their kids. They want me to

start adding butter to her rice cereal (she is 5 months old). Will

the added fat help her height? Any info on this would be helpful.

Thanks,

Amy

Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

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[Guest guest]

Amy,

My daughter has also just cultured Pseudomonas and they have put her on

three weeks oral Ciproxin. They have also thought about not giving anything

(I wonder how this is possible !!!?) and we have INSISTED that they treat it

NOW ! So they gave the oral Ciproxin for three weeks. They didn't want to

give the inhaled Colymicine for three months as they think it may be gone

with the Ciproxin alone and Colymicine will make her resistant more quiclkly

to the antibiotics.

So, we will wait and see for the results of her throught aspiration (not

culture) early January. The Pseudo never showed in her throught cultures

taken during the last month, only in her bronchoscopy. Throught cultures are

not to be trusted !!!

I would insist on a treatment for your daughter !

Good Luck,

Liesbeth

mom to (2,5 wCF) and Kasper (1no CF)

> pseudomonas ques

>

> I am wondering if anyone can give me some information. My daughter

> has cultured pseudomonas and they told me they do not want to treat

> it. They said that since she has no illness symptom (fever) and that

> this is her first time that they want to wait to see if she cultures

> it again. At first they told me to bring her back in two months but

> when I continued to question them they said I could bring her back in

> one month. Has anyone had this experience? I am trying to have

> faith in the Drs but we are new to this and I am afraid that they are

> not being aggressive enough. She has also dropped from the 15%tile in

> height to below the 5%tile while her weight remained near the 25%

> tile. Has anyone seen that happen with their kids. They want me to

> start adding butter to her rice cereal (she is 5 months old). Will

> the added fat help her height? Any info on this would be helpful.

> Thanks,

> Amy

> Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

>

>

>

>

>

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[Guest guest]

,

How do they check the pseudo has gone in your clinic ? I am intersted as

will have a check up early January. The way they check it is very

important as it never showed in her trought culture. They proposed to do an

aspiration, but not a bronchoscopy.

Liesbeth

mom to (2,5 wCF) and Kasper (1 noCF)

> Re: pseudomonas ques

>

> n,

>

> Eilish had her check up today and they said that her pseudo. still didnt

> seem to be there, although they said its always a case of fingers crossed.

> I mentioned to her specialist that some people dont treat it aggressively

> (meaning the dr's.) He thinks thats because some dont want to build up a

> resistance to antibiotics. But I know at this point in our life that my

> 'mission' is to keep that damn thing away, whatever it takes,.

>

> Merry Christmas

>

> (mummy to Liam 6 wocf & Eilish 3 wcf)

> Re: pseudomonas ques

>

>

> > Hit that pseudomonas and hit it hard--the sooner the better, said she

> who

> got

> > it

> > blasted and hardly has any now, many years later!

> > n Rojas, the official " CF Nut! "

> >

> >

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[Guest guest]

Leisbeth,

Eilish has never had a throat culture as they are not reliable. She has had

5 broncs. in her 3.5 years. So thats how they check. Once she has been on

cipro. & coli (we follow the danish plan as they have the smallest pseudo.)

for three months then they do a bronc. then if it shows up that the pseudo.

is still there then another three months, which was the case with Eilish.

She had three, three months on it.

Re: pseudomonas ques

> >

> >

> > > Hit that pseudomonas and hit it hard--the sooner the better, said she

> > who

> > got

> > > it

> > > blasted and hardly has any now, many years later!

> > > n Rojas, the official " CF Nut! "

> > >

> > >

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[Guest guest]

Thank you, !!! I will insist on a bronchoscopy for . You are

right that throat cultures are not reliable. Here they proposed a kind of

suction after a physio exercise but it only takes mucus from the upper

airways if the child cannot cough up anything, so cannot be trusted either.

Liesbeth

> Re: pseudomonas ques

>

> Leisbeth,

>

> Eilish has never had a throat culture as they are not reliable. She has

> had

> 5 broncs. in her 3.5 years. So thats how they check. Once she has been

> on

> cipro. & coli (we follow the danish plan as they have the smallest

> pseudo.)

> for three months then they do a bronc. then if it shows up that the

> pseudo.

> is still there then another three months, which was the case with Eilish.

> She had three, three months on it.

>

>

> Re: pseudomonas ques

> > >

> > >

> > > > Hit that pseudomonas and hit it hard--the sooner the better, said

> she

> > > who

> > > got

> > > > it

> > > > blasted and hardly has any now, many years later!

> > > > n Rojas, the official " CF Nut! "

> > > >

> > > >

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[Guest guest]

Do you have TOBI there??? We did a combination of TOBI and Cipro. There is a

lot less resistance to TOBI, so they couldn't use that argument with you.

Lori

mom to Scout 2 wCF

pseudomonas ques

> >

> > I am wondering if anyone can give me some information. My daughter

> > has cultured pseudomonas and they told me they do not want to treat

> > it. They said that since she has no illness symptom (fever) and that

> > this is her first time that they want to wait to see if she cultures

> > it again. At first they told me to bring her back in two months but

> > when I continued to question them they said I could bring her back in

> > one month. Has anyone had this experience? I am trying to have

> > faith in the Drs but we are new to this and I am afraid that they are

> > not being aggressive enough. She has also dropped from the 15%tile in

> > height to below the 5%tile while her weight remained near the 25%

> > tile. Has anyone seen that happen with their kids. They want me to

> > start adding butter to her rice cereal (she is 5 months old). Will

> > the added fat help her height? Any info on this would be helpful.

> > Thanks,

> > Amy

> > Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

> >

> >

> >

> >

> >

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[Guest guest]

For those of you not given the option of a bronch - or if you feel it is too

invasive here is a medline abstract that may reassure you some:

P.s. if you have trouble reading any of this let me know and I will resend.

Lori

Diagnostic accuracy of oropharyngeal cultures in infants and young children

with cystic fibrosis.

Rosenfeld M, Emerson J, Accurso F, Armstrong D, Castile R, Grimwood K, Hiatt

P, McCoy K, McNamara S, Ramsey B, Wagener J

University of Washington, Seattle, Washington. mrosen@...

The objective of this study was to assess the diagnostic accuracy of

oropharyngeal (OP) cultures relative to simultaneous bronchoalveolar lavage

(BAL) cultures in very young children with CF, and to examine the effects of

bacterial density, age, and study cohort on diagnostic accuracy. Respiratory

culture data were analyzed from three independent, prospective studies

involving simultaneous collection of 286 OP and BAL cultures from 141

children with CF <5 years of age. For predicting any growth of Pseudomonas

aeruginosa (Pa) from the lower airway in subjects </=18 months of age (mean

age, 8 +/- 5 months), OP cultures had a sensitivity of 44% (95% CI 14%,

79%), specificity of 95% (90%, 99%), positive predictive value of 44% (14%,

79%), and negative predictive value of 95% (90%, 99%). Diagnostic accuracy

was similar for Haemophilus influenzae (Hi). Specificity was significantly

lower for Staphylococcus aureus (Sa). Sensitivity for all organisms improved

if a positive lower airway culture was defined as >/=10(3) or >/=10(5)

cfu/mL. Specificity for Pa declined significantly with increasing age. In

children with CF <5 years of age, the specificity and negative predictive

value of OP cultures for Pa are high, while the sensitivity and positive

predictive value are poor. Thus, in this age range, a negative throat

culture is helpful in " ruling out " lower airway infection with Pa. However,

a positive culture does not reliably " rule in " the presence of Pa in the

lower respiratory tract. These findings may have implications for study

design and interpretation as well as clinical management of young children

with CF. Copyright 1999 Wiley-Liss, Inc.

Publication Types:

? Multicenter study

PMID: 10536062, UI: 20006187

Re: pseudomonas ques

> > > >

> > > >

> > > > > Hit that pseudomonas and hit it hard--the sooner the better, said

> > she

> > > > who

> > > > got

> > > > > it

> > > > > blasted and hardly has any now, many years later!

> > > > > n Rojas, the official " CF Nut! "

> > > > >

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[Guest guest]

Believe me I know exactly what you are going through. It is like you are

quoting what I said when Scout cultured pseudo! Of course, we would want the

guidelines to be liberal on treatment - not as conservative as most of the

Dr.s tend to be.

Would you like some abstracts, etc. on more aggressive treatment of pseudo.

or have you already tried that argument?

Lori

mom to Scout 2 wCF

pseudomonas ques

> > > >

> > > > I am wondering if anyone can give me some information. My daughter

> > > > has cultured pseudomonas and they told me they do not want to treat

> > > > it. They said that since she has no illness symptom (fever) and

that

> > > > this is her first time that they want to wait to see if she cultures

> > > > it again. At first they told me to bring her back in two months but

> > > > when I continued to question them they said I could bring her back

in

> > > > one month. Has anyone had this experience? I am trying to have

> > > > faith in the Drs but we are new to this and I am afraid that they

are

> > > > not being aggressive enough. She has also dropped from the 15%tile

in

> > > > height to below the 5%tile while her weight remained near the 25%

> > > > tile. Has anyone seen that happen with their kids. They want me to

> > > > start adding butter to her rice cereal (she is 5 months old). Will

> > > > the added fat help her height? Any info on this would be helpful.

> > > > Thanks,

> > > > Amy

> > > > Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ***********************

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> > > >

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> > > >

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> > >

> > >

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

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[Guest guest]

Lori,

No, I am afraid TOBI is no available in Belgium (Europe ?). I am making

lists of arguments to convince them to do a bronchoscopy in January instead

of a troat culture or suction, otherwhise we will not really know whether

the Pseudo has gone.

CF it one thing, but having to fight for the right treatment each time is

really pure stress. Why can't there be guidelines to follow for all centres

! ?

Liesbeth

mom to (2,5wCF) and Kasper (1no CF)

> Re: pseudomonas ques

>

> Do you have TOBI there??? We did a combination of TOBI and Cipro. There is

> a

> lot less resistance to TOBI, so they couldn't use that argument with you.

>

> Lori

> mom to Scout 2 wCF

>

> pseudomonas ques

> > >

> > > I am wondering if anyone can give me some information. My daughter

> > > has cultured pseudomonas and they told me they do not want to treat

> > > it. They said that since she has no illness symptom (fever) and that

> > > this is her first time that they want to wait to see if she cultures

> > > it again. At first they told me to bring her back in two months but

> > > when I continued to question them they said I could bring her back in

> > > one month. Has anyone had this experience? I am trying to have

> > > faith in the Drs but we are new to this and I am afraid that they are

> > > not being aggressive enough. She has also dropped from the 15%tile in

> > > height to below the 5%tile while her weight remained near the 25%

> > > tile. Has anyone seen that happen with their kids. They want me to

> > > start adding butter to her rice cereal (she is 5 months old). Will

> > > the added fat help her height? Any info on this would be helpful.

> > > Thanks,

> > > Amy

> > > Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

> > >

> > >

> > >

> > >

> > >

> > > ***********************

> > > This is a secular list.

> > > ***********************

> > >

> > >

> > > 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.

> > >

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

> > >

> > >

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> > >

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> > >

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> >

> >

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> >

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> >

> >

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

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> >

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> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

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

> >

> >

> > Our webpage is at http://www.eohio.net/malbright/cfparents.htm

> >

> > _________________________________________________

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> > Subscribe: cfparents-subscribeegroups

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> >

> >

> >

>

>

>

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>

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[Guest guest]

I think you have already received good answers on the pseudo - fight for

treatment. On the other, it is unusual that her height is dropping before

her weight. Usually weight goes first then height. That would make me

wonder if there wasn't another factor at play besides just calories or if

they might have mis-calculated her weight percentile at some point.

Anyway, if her height/weight is dropping, yes, add fat/calories. It doesn't

have to be butter though. (Although it will add calories fine and dandy and

she may prefer the taste of it.) In fact here they would recommend an oil

instead. There are special CF oils they make that mix well with formula.

etc. They tend to be expensive though. You can also just use soybean,

safflower, canola etc. Which oil you choose tends to depend on where you

stand on the DHA issue and if you are concerned about what EFAs (essential

fatty acids) she is getting. No matter where you stand on that though I

would personally, choose a less saturated fat than butter.

They had us use soybean to start here - it is high in Omega 9 fats and a

trace of Omega 3s. (Scout was 7 months at the time.) After I was able to

stop supplementing based on Scout's EFA needs I switched to Canola and even

throw in ground walnuts and ground, toasted flaxseed. (The last two you

would want to wait to use until she was over a year or so - for possible

allergy reasons.)

Ask your Dr.s if they have any problems with any of those or if they can get

you the special CF oil, especially if she isn't eating many solids yet. Have

they tested her EFA levels?

Good Luck.

Lori

mom to Scout 2 wCF

pseudomonas ques

> I am wondering if anyone can give me some information. My daughter

> has cultured pseudomonas and they told me they do not want to treat

> it. They said that since she has no illness symptom (fever) and that

> this is her first time that they want to wait to see if she cultures

> it again. At first they told me to bring her back in two months but

> when I continued to question them they said I could bring her back in

> one month. Has anyone had this experience? I am trying to have

> faith in the Drs but we are new to this and I am afraid that they are

> not being aggressive enough. She has also dropped from the 15%tile in

> height to below the 5%tile while her weight remained near the 25%

> tile. Has anyone seen that happen with their kids. They want me to

> start adding butter to her rice cereal (she is 5 months old). Will

> the added fat help her height? Any info on this would be helpful.

> Thanks,

> Amy

> Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

>

>

>

>

>

> ***********************

> This is a secular list.

> ***********************

>

>

> 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.

>

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

>

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

>

> _________________________________________________

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> Subscribe: cfparents-subscribeegroups

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>

[Guest guest]

Abstracts on aggressive treatment would be very helpful. If you have some, I

would appreciate receiving a copy. I am preparing myself for the next visit

to the hospital when will have finished the Ciproxin.

Have they been willing to do a bronchoscopy on Scout to test the Pseudo was

gone ?

Many thanks. It's good to know we are not alone in this constant battle ...

Liesbeth

> Re: pseudomonas ques

>

> Believe me I know exactly what you are going through. It is like you are

> quoting what I said when Scout cultured pseudo! Of course, we would want

> the

> guidelines to be liberal on treatment - not as conservative as most of

> the

> Dr.s tend to be.

>

> Would you like some abstracts, etc. on more aggressive treatment of

> pseudo.

> or have you already tried that argument?

>

> Lori

> mom to Scout 2 wCF

>

> pseudomonas ques

> > > > >

> > > > > I am wondering if anyone can give me some information. My

> daughter

> > > > > has cultured pseudomonas and they told me they do not want to

> treat

> > > > > it. They said that since she has no illness symptom (fever) and

> that

> > > > > this is her first time that they want to wait to see if she

> cultures

> > > > > it again. At first they told me to bring her back in two months

> but

> > > > > when I continued to question them they said I could bring her back

> in

> > > > > one month. Has anyone had this experience? I am trying to have

> > > > > faith in the Drs but we are new to this and I am afraid that they

> are

> > > > > not being aggressive enough. She has also dropped from the 15%tile

> in

> > > > > height to below the 5%tile while her weight remained near the 25%

> > > > > tile. Has anyone seen that happen with their kids. They want me

> to

> > > > > start adding butter to her rice cereal (she is 5 months old).

> Will

> > > > > the added fat help her height? Any info on this would be helpful.

> > > > > Thanks,

> > > > > Amy

> > > > > Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > ***********************

> > > > > This is a secular list.

> > > > > ***********************

> > > > >

> > > > >

> > > > > 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.

> > > > >

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

> > > > >

> > > > >

> > > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm

> > > > >

> > > > > _________________________________________________

> > > > > Post message: cfparentsegroups

> > > > > Subscribe: cfparents-subscribeegroups

> > > > > Unsubscribe: cfparents-unsubscribeegroups

> > > > > List owner: cfparents-owneregroups

> > > > > _________________________________________________

> > > > >

> > > > > WE HAVE A CHAT PAGE!!!

> > > > > /chat/cfparents

> > > > > _________________________________________________

> > > > >

> > > > >

> > > >

> > > >

> > > > ***********************

> > > > This is a secular list.

> > > > ***********************

> > > >

> > > >

> > > > 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.

> > > >

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

> > > >

> > > >

> > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm

> > > >

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> > > > _________________________________________________

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> > > >

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> > >

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> > > This is a secular list.

> > > ***********************

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> > >

> > > PLEASE do not post religious emails to the list.

> > >

> > >

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

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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.

> > >

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

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> > >

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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.

> >

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

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> >

> > Our webpage is at http://www.eohio.net/malbright/cfparents.htm

> >

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> > _________________________________________________

> >

> >

> >

>

>

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> ***********************

> This is a secular list.

> ***********************

>

>

> 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.

>

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

>

>

> Our webpage is at http://www.eohio.net/malbright/cfparents.htm

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[Guest guest]

I will email you some abstracts later off-list. We have not asked for a

bronch. I have heard such different things about them. I know some people on

cystic-L blame them for other complications and our Dr.s here think they are

too invasive, especially if the patient is non-symptomatic or is already

being treated with an antibiotic that should handle most bugs. Scout doesn't

have any cough when healthy and when she gets sick we now put her on TOBI.

If that didn't clear it up I think I would be able to talk them into

another round of Cipro. If that didn't work I think they would do a bronch,

but it would pretty much have to be right before they opted for a hospital

visit.

Lori

mom to Scout

2wCF

pseudomonas ques

> > > > > >

> > > > > > I am wondering if anyone can give me some information. My

> > daughter

> > > > > > has cultured pseudomonas and they told me they do not want to

> > treat

> > > > > > it. They said that since she has no illness symptom (fever) and

> > that

> > > > > > this is her first time that they want to wait to see if she

> > cultures

> > > > > > it again. At first they told me to bring her back in two months

> > but

> > > > > > when I continued to question them they said I could bring her

back

> > in

> > > > > > one month. Has anyone had this experience? I am trying to have

> > > > > > faith in the Drs but we are new to this and I am afraid that

they

> > are

> > > > > > not being aggressive enough. She has also dropped from the

15%tile

> > in

> > > > > > height to below the 5%tile while her weight remained near the

25%

> > > > > > tile. Has anyone seen that happen with their kids. They want

me

> > to

> > > > > > start adding butter to her rice cereal (she is 5 months old).

> > Will

> > > > > > the added fat help her height? Any info on this would be

helpful.

> > > > > > Thanks,

> > > > > > Amy

> > > > > > Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

> > > > > >

> > > > > >

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[Guest guest]

They might only test EFAs (essential fatty acids) if there had been some

sign of poor nutrition. Scout's were tested since she was diagnosed due to

failure to thrive and was suffering from malnutrition. They do continue to

test hers at least once a year though, so maybe it is also standard here for

anyone who is pancreatic insufficient.

DHA is found in Omega 3 fats and has been shown to " fix " the CF problem in

mice. Here is a link: http://www.cff.org/news9910a.htm It is a complicated

issue, but is certainly an exciting discovery.

Lori

mom to Scout 2 wCF

pseudomonas ques

> >

> >

> >> I am wondering if anyone can give me some information. My daughter

> >> has cultured pseudomonas and they told me they do not want to treat

> >> it. They said that since she has no illness symptom (fever) and that

> >> this is her first time that they want to wait to see if she cultures

> >> it again. At first they told me to bring her back in two months but

> >> when I continued to question them they said I could bring her back in

> >> one month. Has anyone had this experience? I am trying to have

> >> faith in the Drs but we are new to this and I am afraid that they are

> >> not being aggressive enough. She has also dropped from the 15%tile in

> >> height to below the 5%tile while her weight remained near the 25%

> >> tile. Has anyone seen that happen with their kids. They want me to

> >> start adding butter to her rice cereal (she is 5 months old). Will

> >> the added fat help her height? Any info on this would be helpful.

> >> Thanks,

> >> Amy

> >> Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

> >>

> >>

> >>

> >>

> >>

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[Guest guest]

Hi Lori. Would you mind explaining a little more about the dha and efa? I

dont believe Alyssa has ever been tested for her efa levels? If she has

they have never said anything to me about them.

-Thanks, mom to Chris(15 not tested yet), Cody (12 wocf), (9

wocf) and Alyssa (14mo. wcf)

(9--------------------------------------------------

Click here for Free Video!!

http://www.gohip.com/free_video/

Re: pseudomonas ques

>I think you have already received good answers on the pseudo - fight for

>treatment. On the other, it is unusual that her height is dropping before

>her weight. Usually weight goes first then height. That would make me

>wonder if there wasn't another factor at play besides just calories or if

>they might have mis-calculated her weight percentile at some point.

>

>Anyway, if her height/weight is dropping, yes, add fat/calories. It

doesn't

>have to be butter though. (Although it will add calories fine and dandy and

>she may prefer the taste of it.) In fact here they would recommend an oil

>instead. There are special CF oils they make that mix well with formula.

>etc. They tend to be expensive though. You can also just use soybean,

>safflower, canola etc. Which oil you choose tends to depend on where you

>stand on the DHA issue and if you are concerned about what EFAs (essential

>fatty acids) she is getting. No matter where you stand on that though I

>would personally, choose a less saturated fat than butter.

>

>They had us use soybean to start here - it is high in Omega 9 fats and a

>trace of Omega 3s. (Scout was 7 months at the time.) After I was able to

>stop supplementing based on Scout's EFA needs I switched to Canola and even

>throw in ground walnuts and ground, toasted flaxseed. (The last two you

>would want to wait to use until she was over a year or so - for possible

>allergy reasons.)

>

>Ask your Dr.s if they have any problems with any of those or if they can

get

>you the special CF oil, especially if she isn't eating many solids yet.

Have

>they tested her EFA levels?

>

>Good Luck.

>

>Lori

>mom to Scout 2 wCF

>

> pseudomonas ques

>

>

>> I am wondering if anyone can give me some information. My daughter

>> has cultured pseudomonas and they told me they do not want to treat

>> it. They said that since she has no illness symptom (fever) and that

>> this is her first time that they want to wait to see if she cultures

>> it again. At first they told me to bring her back in two months but

>> when I continued to question them they said I could bring her back in

>> one month. Has anyone had this experience? I am trying to have

>> faith in the Drs but we are new to this and I am afraid that they are

>> not being aggressive enough. She has also dropped from the 15%tile in

>> height to below the 5%tile while her weight remained near the 25%

>> tile. Has anyone seen that happen with their kids. They want me to

>> start adding butter to her rice cereal (she is 5 months old). Will

>> the added fat help her height? Any info on this would be helpful.

>> Thanks,

>> Amy

>> Mom to Maegan 5 mon wcf and Tierney 2.5y wocf

>>

>>

>>

>>

>>

>> ***********************

>> This is a secular list.

>> ***********************

>>

>>

>> PLEASE do not post religious emails to the list.

>>

>>

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

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>>

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>> IN NO WAY

>> be construed as medical advice.

>>

>> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

>TREATMENTS.

>>

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

>>

>>

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>>

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>>

>>

>

>

>

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[Guest guest]

If my child cultured pseudo for the first time

(knowing what I know now) and the doctors said they

didn't want to treat it because there are no symptoms,

I would tell them that I want it treated aggressively.

I would cite the poor clinical prognosis of early

colonization with pseudo, the improved clinical

outlook of aggressively treating positive cultures

(the Danish treatment plan) and if they still didn't

want to treat it, I would throw a royal hissy fit,

raise my voice, complain loudly, question their

credentials, all in the presence of as many other

patients as possible. If they don't agree to treat it

just to shut you up at that point, I'd move on for the

" second opinion. " (Of course, at this point, they'll

be relieved to see you " move on " !!)

That's just me, though.

=====

Ruling on High as Mommy Extrordinaire

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

Outstanding accomplishments:

1. R.C.

2. Cheyenne

3. Levi

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

__________________________________________________

[Guest guest]

,

I would join you ! They would indeed be happy to see us move on. Only it

often is not as black and white like that - treating or not treating.

Usually they give part of the treatment and not exactly the same as in

Denmark, because it is not available or because resistance will build up

etc... They have hunderds of 'beautiful' arguments for treating it slightly

different than written in the Hoiby report.

In our case, we have checked out the second opinion already and would be

ready to make to move if necessary, only it's a clinic in the French

speaking part of Belgium (bilingual country). We speak French but not

yet. In the States that could mean the second clinic is very far away....

Before you do that you think twice if it is not as exteme like treating or

not treating at all. If it were extreme, I would also not hesitate and go

for the second opinion.

Just want to say that it is often more complicated than simply yes or no.

Othewhise it would be very easy.

Liesbeth

mom to (2,5 wCF) and Kasper (1noCF)

> Re: pseudomonas ques

>

> If my child cultured pseudo for the first time

> (knowing what I know now) and the doctors said they

> didn't want to treat it because there are no symptoms,

> I would tell them that I want it treated aggressively.

> I would cite the poor clinical prognosis of early

> colonization with pseudo, the improved clinical

> outlook of aggressively treating positive cultures

> (the Danish treatment plan) and if they still didn't

> want to treat it, I would throw a royal hissy fit,

> raise my voice, complain loudly, question their

> credentials, all in the presence of as many other

> patients as possible. If they don't agree to treat it

> just to shut you up at that point, I'd move on for the

> " second opinion. " (Of course, at this point, they'll

> be relieved to see you " move on " !!)

> That's just me, though.

>

>

>

>

>

> =====

> Ruling on High as Mommy Extrordinaire

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

> Outstanding accomplishments:

> 1. R.C.

> 2. Cheyenne

> 3. Levi

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

>

> __________________________________________________

>

[Guest guest]

hi all we have a question our 20 month old goes friday for her pulmonary

function test. we are wondering what to expect. do they knock her out for this.

If so how do they do it and how long does it take. Any info on experiences you

have had with kids this age is helpful. thanks

and Traci parents of allison w/cf asthma

Re: pseudomonas ques

Amy

HMMM, 5 months old, cultures pseudo, and the docs want to do NOTHING?????

I guess some docs still do subscribe to that theory, where are you, anyway?

What do others think? Maybe I am just not the person to comment right now on

this topic, but if it were me, I would be very concerned.....

Jen

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[Guest guest]

& Traci,

I never knew a child that young could have a pft. They dont do it here

unless the child is 5 or over as they said its not worth it as it wouldnt be

correct.

Re: pseudomonas ques

>

>

> Amy

> HMMM, 5 months old, cultures pseudo, and the docs want to do

NOTHING?????

> I guess some docs still do subscribe to that theory, where are you,

anyway?

> What do others think? Maybe I am just not the person to comment right

now on

> this topic, but if it were me, I would be very concerned.....

> Jen

>

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[Guest guest]

I have never had do the lung function test, but if it is the

clinical trial you are doing, then yes they do go to sleep. I think it takes

an hour. They use gas to put them under then they push air into the lungs.

When the air escapes, it is measured somehow. We were going to do it, but at

the time he had been through enough already.

shannon

>

>Reply-To: cfparentsegroups

>To: <cfparentsegroups>

>Subject: Re: pseudomonas ques

>Date: Thu, 21 Dec 2000 00:47:32 -0500

>

>hi all we have a question our 20 month old goes friday for her pulmonary

>function test. we are wondering what to expect. do they knock her out for

>this. If so how do they do it and how long does it take. Any info on

>experiences you have had with kids this age is helpful. thanks

> and Traci parents of allison w/cf asthma

> Re: pseudomonas ques

>

>

> Amy

> HMMM, 5 months old, cultures pseudo, and the docs want to do

>NOTHING?????

> I guess some docs still do subscribe to that theory, where are you,

>anyway?

> What do others think? Maybe I am just not the person to comment right

>now on

> this topic, but if it were me, I would be very concerned.....

> Jen

>

> eGroups Sponsor

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