Re: Question about PICC lines and bronchospcopies

[Guest guest]

Both of my daughters have had picc lines. My 4 year old had one just last

month. She did not cry a bit when it came out. She did cry a little when they

took the tape off, but not when they took the line out. MY oldest daughter

has had several bronchs she is 6 now. From what I understand they not only give

better results from cultures but they can clean them out as well.

Good Luck.

Sandy

Mother of three daughters 4 yo w/CF - Kenedy, 5 yo no CF - and 6 yo

w/CF - Kaylee

[Guest guest]

Just a personal opinion. I think you made the right decision. I trust

my doctor with bronchoscopies, but they are not 100% no-risk, so why

do it when results can be inconclusive?

Lenora

>Hi all,

>

>I have not posted to this list in a long, long time, but I have a couple of

>questions now. One of my four year old identical twin sons (both of whom have

>CF) was hospitalized last Tuesday for a " tune-up. " He has never been in

>before, and they had to sedate him to get a PICC line in. Does anyone know if

>these hurt coming out. I am so scared for him because he is so

>scared of being

> " poked. " I was also wondering how you all felt about

>bronchoscopies. His twin

>brother had two of them done when he was four months old because he was not

>getting better while on his antibiotics. His turned out to be only

>staph. They

>kind of tried to pressure me into getting the scope for , but I did not

>feel it was necessary as they were treating him already for pseudamonas,

>staph, etc. and would only be able to be 50% certain after the

>bronch that what was

>cultured was actually there because they had already started his antibiotics.

>I was also worried about the possibilty of colonization with pseudamonas

>from the bronch after reading about the problems at s Hopkins a

>while back.

>I hope I made the right decision to not let them do it. Do you all think I

>did?

>

>Thanks,

>Peggy

>mom of Jonah and (4 1/2 wcf)

>

>

[Guest guest]

Hi,

My four and a half year old daughter has had several PICC lines and they don't

really hurt coming out. With it they don't get poked so often because they

don't blow their IV lines. Check out our site at

http://groups.msn.com/TeamJane for some slightly humorous stories about

and her Picc lines. She has never had a bronch.

Question about PICC lines and bronchospcopies

Hi all,

I have not posted to this list in a long, long time, but I have a couple of

questions now. One of my four year old identical twin sons (both of whom have

CF) was hospitalized last Tuesday for a " tune-up. " He has never been in

before, and they had to sedate him to get a PICC line in. Does anyone know if

these hurt coming out. I am so scared for him because he is so scared of

being

" poked. " I was also wondering how you all felt about bronchoscopies. His

twin

brother had two of them done when he was four months old because he was not

getting better while on his antibiotics. His turned out to be only staph.

They

kind of tried to pressure me into getting the scope for , but I did not

feel it was necessary as they were treating him already for pseudamonas,

staph, etc. and would only be able to be 50% certain after the bronch that

what was

cultured was actually there because they had already started his antibiotics.

I was also worried about the possibilty of colonization with pseudamonas

from the bronch after reading about the problems at s Hopkins a while

back.

I hope I made the right decision to not let them do it. Do you all think I

did?

Thanks,

Peggy

mom of Jonah and (4 1/2 wcf)

[Guest guest]

Does anyone know if

> these hurt coming out.

No they really don't hurt it is just a little scary for them (and

moms). I think the hardest part is keeping the sterile bandage on. My

son contracted Lyme disease last summer and have to have a PICC put

in. They did it at Children's and they were marvelous about it. He

wasn't sedated and it went smoothly.

> I was also worried about the possibilty of colonization with

pseudamonas

> from the bronch after reading about the problems at s Hopkins a

while back.

What was this?

jan

[Guest guest]

Peggy,

Eilish has had heaps of PICC lines. She usually has her's in her chest.

She helps them pull it out. So for her it doesn't hurt. Maybe more of

a 'mind' thing though than actual pain, especially if it is all new.

She has also had numerous bronc's. Personally I like them as they get

right in there. She was always asleep for it.

(Australia)

Question about PICC lines and bronchospcopies

Hi all,

I have not posted to this list in a long, long time, but I have a couple

of

questions now. One of my four year old identical twin sons (both of

whom have

CF) was hospitalized last Tuesday for a " tune-up. " He has never been in

before, and they had to sedate him to get a PICC line in. Does anyone

know if

these hurt coming out. I am so scared for him because he is so scared

of being

" poked. " I was also wondering how you all felt about bronchoscopies.

His twin

brother had two of them done when he was four months old because he was

not

getting better while on his antibiotics. His turned out to be only

staph. They

kind of tried to pressure me into getting the scope for , but I did

not

feel it was necessary as they were treating him already for pseudamonas,

staph, etc. and would only be able to be 50% certain after the bronch

that what was

cultured was actually there because they had already started his

antibiotics.

I was also worried about the possibilty of colonization with pseudamonas

from the bronch after reading about the problems at s Hopkins a

while back.

I hope I made the right decision to not let them do it. Do you all

think I

did?

Thanks,

Peggy

mom of Jonah and (4 1/2 wcf)

[Guest guest]

In a message dated 8/5/2003 12:09:35 AM Central Daylight Time,

Najnest@... writes:

> Does anyone know if

> > these hurt coming out.

>

> No they really don't hurt it is just a little scary for them (and

> moms). I think the hardest part is keeping the sterile bandage on. My

> son contracted Lyme disease last summer and have to have a PICC put

> in. They did it at Children's and they were marvelous about it. He

> wasn't sedated and it went smoothly.

>

>

> > I was also worried about the possibilty of colonization with

> pseudamonas

> > from the bronch after reading about the problems at s Hopkins a

> while back.

>

> What was this?

>

> jan

We just found out that our oldest is going to have another picc line in again

to radicate Alcaligenes. I hope we get it done before she goes back to

school. Deb A

[Guest guest]

In a message dated 8/4/2003 11:36:11 AM Eastern Daylight Time, lenora@...

writes:

> bronchoscopies

my center doesn't like them cause (1) it upsets bacteria and (2) other

bacteria can move in....sounds like relatives visiting!

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

In a message dated 8/5/2003 1:37:08 PM Central Daylight Time,

pollyjanos@... writes:

>

>

> Message for Deb:

>

> This is the " bug " that was found to be growing in my daughter's

> lungs post bronchoscopy. I have been praying and hoping beyond hope

> that this isn't an indicator of CF (no official diagnosis yet...1

> mutation found-DeltaF508-testing for additional mutations-2 negative

> sweat tests) Fortunately, our PFT's have slowly and steadily

> improved so we are not looking at a PICC line at this moment in

> time. My question is what do you all know about this bacteria? It's

> a new one for me, and I used to be a Resp. Therapist!

>

> Thanks Deb, and others, in advance for any knowledge you may be able

> to share!

>

> All my best,

>

> Polly

Polly

This is a new bacteria for us too!! I have asked people on this list about

Alcaligenes

bacteria and didn't get much response. I can tell you what my doctor told me.

Some Alcaligenes bacteria are resistant to antibiotics and some are not we

are lucky the one that my daughter is culture is not resistant so we are going

to put her on a picc line to see if we can eradicate it. He also said this is a

bacteria that people with CF can get so I would think that this would be a

sign that your does have CF because most people can get rid of the bacteria on

there own but people with CF have think mucus so it is a lot harder for them to

get rid of it. They don't know a whole lot about this bacteria but some

people will show symptoms and some will not. They said my daughters white cells

were up a little bit so they know there is an infection and her doctor feels we

need to be aggressive and get rid of the bacteria if we can. I hope this helps.

Deb A

[Guest guest]

Message for Deb:

This is the " bug " that was found to be growing in my daughter's

lungs post bronchoscopy. I have been praying and hoping beyond hope

that this isn't an indicator of CF (no official diagnosis yet...1

mutation found-DeltaF508-testing for additional mutations-2 negative

sweat tests) Fortunately, our PFT's have slowly and steadily

improved so we are not looking at a PICC line at this moment in

time. My question is what do you all know about this bacteria? It's

a new one for me, and I used to be a Resp. Therapist!

Thanks Deb, and others, in advance for any knowledge you may be able

to share!

All my best,

Polly

> We just found out that our oldest is going to have another picc

line in again

> to radicate Alcaligenes. I hope we get it done before she goes

back to

> school. Deb A

>

>

>

[Guest guest]

Deb,

Thanks for responding so quickly. It is truly scary being in limbo

while we await definitive diagnosis. My daughter's pulmonologist

will be sending us to the CF clinic, in Chapel Hill, North Carolina,

for further testing should the next round of genetic tests come

back " inconclusive " .

I have my daughter's lab report right in front of me: Achromobacter

(alcaligenes) xylosoxidans, multidrug resistant gram negative

bacilli. The only antibiotics it was susceptible to were

ceftazidime (she is allergic to cefzil) and levofloxacin. She was

on tobramycin in the hospital and placed on levaquin when

discharged, along with aerosolized gentamycin. We are watching her

closely for any signs of respiratory symptoms returning. Should she

or her PFT's deteriorate in any way, a PICC line will be the next

course of action.

My next question, is it uncommon to have CF diagnosed at a later

age? My daughter is " nearly nine " and does not follow the typical

CF pattern...no GI complications, no trouble with weight, just a

touch of asthma that began a few years ago (confirmed with allergy

testing/PFT's). Additionally, there is no family history of this

disease on either side of the family. This has totally caught us

off guard.

My final question (for now) is do you have yourselves and your other

children tested after confirmation of a CF diagnosis? I would

gather that this is a " no brainer " and expect the answer to be yes.

If so, sweat vs. DNA?

Thank you all for your patience as I try to work this out in my head.

All my best,

Polly

> This is a new bacteria for us too!! I have asked people on this

list about

> Alcaligenes

> bacteria and didn't get much response. I can tell you what my

doctor told me.

> Some Alcaligenes bacteria are resistant to antibiotics and some

are not we

> are lucky the one that my daughter is culture is not resistant so

we are going

> to put her on a picc line to see if we can eradicate it. He also

said this is a

> bacteria that people with CF can get so I would think that this

would be a

> sign that your does have CF because most people can get rid of the

bacteria on

> there own but people with CF have think mucus so it is a lot

harder for them to

> get rid of it. They don't know a whole lot about this bacteria but

some

> people will show symptoms and some will not. They said my

daughters white cells

> were up a little bit so they know there is an infection and her

doctor feels we

> need to be aggressive and get rid of the bacteria if we can. I

hope this helps.

> Deb A

>

>

>

[Guest guest]

> My next question, is it uncommon to have CF diagnosed at a later

> age? My daughter is " nearly nine " and does not follow the typical

> CF pattern...no GI complications, no trouble with weight, just a

> touch of asthma that began a few years ago (confirmed with allergy

> testing/PFT's). Additionally, there is no family history of this

> disease on either side of the family. This has totally caught us

> off guard.

>

> My final question (for now) is do you have yourselves and your

other

> children tested after confirmation of a CF diagnosis?

10% of CF patients are diagnosed after the age of 8. My son was 7

when we found out. I can assure you it caught us off guard as well.

If it were my, I would have all my children tested.

jan

[Guest guest]

In a message dated 8/5/2003 5:47:56 PM Central Daylight Time,

pollyjanos@... writes:

> Polly

My oldest was 6 years old when she was diagnosed! She had know problems with

weight either, also had know history of our family having CF and still have

not found it on my husband side! I did finally find it on my mothers side! If my

oldest did not have the polyps I think we still wouldn't know today. Our Ped.

doctor thought we were crazy to have her tested because he just knew she had

allergies WRONG!! There are many people on here that did not find out there

kids has CF through a sweat test the best results are with a DNA and the top of

the line is a Ambry test it test the most CF genes. So don't give up until you

done all of you options because some genes are hard to detect.

About the bacteria we were told that a lot of the antibiotics are resistant

to the alcaligenes it depends on the type of alceligenes and I am not sure what

kind of alcaligenes she is carrying but they said she is carry the one that

does respond to some antibiotics so that is why we are doing the picc line to

be aggressive and get it if we can.

To answer you other question Yes we had are other two kids tested for CF too

and found out our youngest also has CF so I would strongly strongly advise you

to test you kids because not having all of the symptoms is not always a sure

fire way to know if you child does not have CF and it make you feel good just

seeing it on paper. Hope this helps Deb A

[Guest guest]

Hi there. I responded to this question when it first came up & had

forgotten to mention. There is one mommy who has 3 children who were all DX

as young kids. they still aren't big either. Rosemary in NY. She does so

well But she has a GREAT sense of humor too. That really helps. It also was

a shock I am sure. maybe she will pop in ---or----she might already have.

It is never easy to hear that Dx , BUT it is extremely hard as they older .

some in their 40's even . --At least it helps in getting them treatments

finally that work!

LOVE & HUGS, grandmomBEV

Re: Question about PICC lines and bronchospcopies

> My next question, is it uncommon to have CF diagnosed at a later

> age? My daughter is " nearly nine " and does not follow the typical

> CF pattern...no GI complications, no trouble with weight, just a

> touch of asthma that began a few years ago (confirmed with allergy

> testing/PFT's). Additionally, there is no family history of this

> disease on either side of the family. This has totally caught us

> off guard.

>

> My final question (for now) is do you have yourselves and your

other

> children tested after confirmation of a CF diagnosis?

10% of CF patients are diagnosed after the age of 8. My son was 7

when we found out. I can assure you it caught us off guard as well.

If it were my, I would have all my children tested.

jan

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

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]

> In a message dated 8/5/2003 5:47:56 PM Central Daylight Time,

> pollyjanos@h... writes:

>

If my

> oldest did not have the polyps I think we still wouldn't know

today. Our Ped.

> doctor thought we were crazy to have her tested because he just

knew she had

> allergies WRONG!!

Same here. If it weren't for the polyps they would never had

tested my ds. As it was sweat and Genzyme tests were inconclusive.

We have to run the Ambry test to find his last mutation and make it

official.

jan

[Guest guest]

> My next question, is it uncommon to have CF diagnosed at a later

> age? My daughter is " nearly nine " and does not follow the typical

> CF pattern...no GI complications, no trouble with weight, just a

> touch of asthma that began a few years ago (confirmed with allergy

> testing/PFT's). Additionally, there is no family history of this

> disease on either side of the family. This has totally caught us

> off guard.

Hi Polly

My name is Barbara and I have a daughter Kristy (now 13) who was

finally diagnosed with 'mild' CF last year at age 12. She certainly

didn't follow the typical pattern either.

Kristy has had 2 negative sweat tests in the past...one at 4 months

and one at 9 - we were assured both times she definitely did not

have cf. She was finally diagnosed based on symptoms and it was

confirmed by a nasal potential difference test. She had chest

problems ongoing from mid 2000. Kristy is also asthmatic...she was

diagnosed with that at 2.

>

> My final question (for now) is do you have yourselves and your

other

> children tested after confirmation of a CF diagnosis? I would

> gather that this is a " no brainer " and expect the answer to be

yes.

> If so, sweat vs. DNA?

My elder daughter had blood tests which we were told no not show any

of the common identified cf genes, however, she does suffer chest

problems too. My husband and I were tested when Kristy was 4 months

because she carries one identified gene (508) only and one of us

carries that gene too.

Barbara (Australia)

mum to Kristy 13 - wcf

[Guest guest]

Thank you, all of you, for letting me butt into this thread with my

personal questions and concerns. We are currently awaiting results

from the genzyme test (for 87 mutations). Of course, after hearing

about the Ambry test, being more of the " gold standard " , I am

worried that we may even have a longer wait for a definitive

diagnosis. My daughter's pulmonologist strongly suggests, that if

the genzyme comes back " inconclusive " , she will be sent for a nasal

potential difference. Barbara, although I wouldn't wish this

disease on anyone, it is good to know that the nasal potential test

is one which can conclusively give a diagnosis of CF. If Bethany is,

indeed, confirmed with a diagnosis of CF, I will insist my son be

tested too (he is a skinny little thing...35 pounds at almost 5

years old...failure to thrive as an infant with severe

GERD/projectile vomiting...other issues, etc) Again...my heartfelt

thank you to each and every one of you! I will keep you all in

my " thoughts " .

All my best,

Polly

> Hi Polly

>

> My name is Barbara and I have a daughter Kristy (now 13) who was

> finally diagnosed with 'mild' CF last year at age 12. She

certainly

> didn't follow the typical pattern either.

>

> Kristy has had 2 negative sweat tests in the past...one at 4

months

> and one at 9 - we were assured both times she definitely did not

> have cf. She was finally diagnosed based on symptoms and it was

> confirmed by a nasal potential difference test. She had chest

> problems ongoing from mid 2000. Kristy is also asthmatic...she

was

> diagnosed with that at 2.

>

> My elder daughter had blood tests which we were told no not show

any

> of the common identified cf genes, however, she does suffer chest

> problems too. My husband and I were tested when Kristy was 4

months

> because she carries one identified gene (508) only and one of us

> carries that gene too.

>

> Barbara (Australia)

> mum to Kristy 13 - wcf

[Guest guest]

In a message dated 8/6/2003 8:31:15 AM Eastern Daylight Time, bevd@...

writes:

> age? My daughter is " nearly nine " and does not follow the typical

> >CF pattern...no GI complications, no trouble with weight, just a

> >touch of asthma that began a few years ago (confirmed with allergy

> >testing/PFT's). Additionally, there is no family history of this

> >disease on either side of the family. This has totally caught us

> >off guard.

> >

THIS WAS US TOO. No history of it, couldn't even spell it. In hindsight all

the signs there. has tested by sweat test at 9 mos. - NEGATIVE, she

tested at age 5 NEGATIVE...Only til they saw a mass in her lungs - scarring and

the perineal markings did they decide to do DNA testing via blood work.

Its so weird how ALL of them had classic symptoms but no ONE picked up on it.

in NICU - 3 weeks, pneumonia, 3 mos. another pnemisa. Mass in right

side - fecal impaaction.......... I thank God they were diagnosed so that they

can get the proper treatment.

> >My final question (for now) is do you have yourselves and your

> other

> >children tested after confirmation of a CF diagnosis?

>

>

> 10% of CF patients are diagnosed after the age of 8. My son was 7

> when we found out. I can assure you it caught us off guard as well.

> If it were my, I would have all my children tested.

>

>

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Thanks Jan. After this morning's post, I got the call from the

pulmonologist...The genzyme test came back and it

is " inconclusive " ...it found the DeltaF508 but no other mutations.

My daughter's pulmonologist is wanting to send her to the CF clinic

at Chapel Hill for a 2nd opinion as to what to do next. It's good

to hear about the nasal pot. diff. test...I will definitely request

that this be our next step (realizing it would involve a 2nd trip)

in addition to the Ambry test for mutations. Fortunately, UNC Chapel

Hill is on my insurance plan.

All my best,

Polly

PS...How many mutations does the Ambry test for?

> My daughter's pulmonologist strongly suggests, that if

> > the genzyme comes back " inconclusive " , she will be sent for a

> nasal

> > potential difference.

>

> Actually a nasal potential difference is the gold standard - it

just

> won't tellyou which mutation it may be. We had to wait 3-4 weeks

for

> the Genzyme test. Ambry was faster.

>

> jan

[Guest guest]

>

> PS...How many mutations does the Ambry test for?

Go to www.ambrygen.com. They have a ton of literature sources as well.

jan

>

[Guest guest]

Polly,

With all that you have been going through I am so worried that I may

have to face the same things that you and your family are going through

right now. My son sounds like a cookie cutter of yours. My youngest

does have cf but my oldest has not been diagnosed. 2 negative sweat

tests so I just assumed that I was in the clear.

Every time I look at him though I just have this gut feeling that

I need to do more extencive testing, I guess that in a way hearing your

story has really lit a fire under me to get going on this. I think that

I am just afraid of hearing that both of my sweat boys have this

terrible disease.

I wish you and your family the best.

Ashauna

[Guest guest]

Thank you Ashuana. You are very kind to respond to me with

everything you are going through right now. I am now fighting

another " battle " . My husband is wondering if we really need to do

further testing. I am in favor of proceeding and consulting with

the doctors at the CF clinic but my husband is hesitant. His point

is " How would we be treating her any differently than we are now? "

Please don't misunderstand me. My husband is not uncaring,

unfeeling or unloving...in fact,just the opposite is true. It is

just that we are looking at this whole thing from different vantage

points/perspectives. I come from a health care standpoint (as a

former RRT)...I truly know the ramifications of the diseases we are

investigating. Even if this ends up being " just " a case of severe

asthma, we need to know so that we can make the necessary changes

and appropriate decisions in her care and treatment. To be perfectly

honest, I am scared. And you know something else, deep down I

believe my husband is scared, too.

All my best,

Polly

> Polly,

> With all that you have been going through I am so worried that

I may

> have to face the same things that you and your family are going

through

> right now. My son sounds like a cookie cutter of yours. My

youngest

> does have cf but my oldest has not been diagnosed. 2 negative

sweat

> tests so I just assumed that I was in the clear.

> Every time I look at him though I just have this gut

feeling that

> I need to do more extencive testing, I guess that in a way

hearing your

> story has really lit a fire under me to get going on this. I

think that

> I am just afraid of hearing that both of my sweat boys have this

> terrible disease.

>

> I wish you and your family the best.

> Ashauna

[Guest guest]

In a message dated 8/8/2003 8:00:08 AM Central Daylight Time,

pollyjanos@... writes:

> Polly

Your right!! CF is scary but there are so many new drugs for CF that can help

your child if that is what she has. Not knowing will only hurt her!! Deb A

[Guest guest]

" How would we be treating her any differently than we are now? "

> Please don't misunderstand me. My husband is not uncaring,

> unfeeling or unloving...in fact,just the opposite is true.

I asked the exact same question to my doctor before we went forward

with the Ambry test which found the second rare mutation. I think in

my mind I was concerned about the label following him the rest of his

life and not being able to get medical or life insurance. No CF

diagnosis hence no one could discriminate against him etc. Right? I

am a reasonably intelligent scientist. I am an Analytical Chemist and

have some working knowlege of the science to treat the disease. I

thought I could ensure he was getting the best treatment possible.

The doctor's answer was basically that my son would NOT get the same

level of care as he will having the diagnosis. At the CF centers

there are certain protocols they must follow. He will be followed up

on a routine basis- every 3 months and additional testing done. He

will be eligible for clinical trials for treatments/meds that he

would not be eligible for if he was not in the CF registry. Last was

the clincher - he suggested that insurance may balk at paying for

some of the medicines/doctor's visit's etc. if he did not have CF.

Thinking carefully about it I realized he was right. Even at the

pediatrician's, I constantly had to battle with the nurse's to get

appointments/ prescriptions for sinus infections and coughs. He is

treated more effectively with the diagnosis. Besides, the child ought

to know eventually whether they are a carrier or they have the

disease.

I vote strongly for testing.;-)

jan

[Guest guest]

Polly,

I imagine that you feel frusterated, angry, and probably even

more. The way that I think about it is that you have to follow that

feeling deep down inside of you. The thing is that is comes from

somewhere and at times it is our best friend making us do the right

thing.

I also know what you are going through with your husband. Mine is

still in complete denial of this in our family. He loves Colgan with

all of his heart, but can not find it inside to deal with it. To be

honest I took this much easier than he did. Not to say I took it easy.

I just mean that I was willing to accept it, he on the other hand is

having a hard time. Like mentioned in other messages our oldest needs

futher testing as well and I just can not get him to see this either.

The truth is he is scared out of his mind that he is going to loose both

of his babies to this terrible illness. You all keep doing what you are

doing and that is making sure that your little girl is being taken care

of by the best for what ever she ends up having in the end.

You and your family are in my thoughts all of the day as I know that

I may be facing the same callenges in the near future. Good luck.

Ashauna