Re: Pittsburgh

[Guest guest]

michelle,

we went to pitt for 10 years total. at 6 years we met dr finder for the

first time and i did not like his style at all so we stayed away from him

totally evern when he was the dr on call, we would wait til another dr came

on. then 2 years ago, he was the in-house dr , it was the end of the month

and we figured that we could manage to get by that and let him finish the

month and then new dr would come on in the beginning of the new month . so

we admitted him into the hosp. and he just overrode everything we said and

even against dr. kurland and he was doing whatever he felt like. it was a

very tense time. the other dr didn't like what he was doing and neither did

we. so i decided it was in brandons best interest to leave the hosp. because

he was only admitted just for a tune-up he wasn't sick. and he call cys and

they made me take him back dr finder said he was in serious shape and it was

life-threatening. LIES,LIES,LIES,LIES. it worked he forced me to take

brandon back to the hosp. dr finder put him on a extremely high dose of

solu-medrol(iv form of prednisone,and pretty bad for you) to use solu-medrol

your usually in very bad shape. he dosed him so high that he was throwing up

, he couldn't stand, barely sit. and now brandon has alot of problems from

him doing that. i was finally able to pull him from the hosp. (by court)

but that took 19 days. in them 19 days he did enough damage, he could of

killed him.

we thought he was killing him. that was the last time we went to pitt. i

begged and pleaded with the other dr. they all discussed it and thought it

would be better not to step in. that did it for us.

we now go to morgantown wv.(wvu) oh is it totally different(better) they

are quick,NICE the nicest we have ever seen. you may think pitt is nice but

morgantown is 100% more nicer. and they work with and for you. its totally

different. you should go down and visit them. just to check them out. it

may be a bit farther but it is worth it.

we had to go to court and everything because of dr finder. and guess what

WE WON. huh image that. now brandon have a law suit against dr. finder , i

only hope that brandon is around to see the end.

dr o was his dr for the first 2 years then dr blakeslee noyse (he moved a

very long time ago) for 2 years , then dr kurland for the remainder. it was

hard to leave dr kurland but we had no choice(he is superb).

dr moffatt-- in morgantown is about the same as dr kurland.

pitt did not like us using herbs at all. herbs are not meds and they are

natural so no you shouldn't use them because they don't cost 100's like

meds.

dr moffatt knows about some herbs and if she don't know it she will look it

up and talk with us about it and tell us what she feels.

some herbs have licorice in it and some licorices are not good for cf

patients.

i could go on forever about this but i will stop.

if you want to talk off egroups email me directly.

cherriott2@...

chris

mom of 3

brandon 12 yrs w cf

On Sat, 17 Mar 2001 11:00:49 -0800 (PST), cfparents wrote:

> wrote:

>

> " i live by Pittsburgh, PA. "

>

>

>

> Do you take your son to Pittsburgh Children's clinic?

> If so, does his dr. there (which dr. does he see?)

> encourage alternative therapies or just tolerate them,

> or do you even mention this at clinic? Of course I'm

> curious because that's the clinic we take Levi to.

> Will you be going to the presentation that is being

> given there April 28? Louise (WONDERFUL cf clinic

> nurse) says that it will be quite an event, much

> larger than the last cf update they did, with every cf

> doc giving a presentation, plus, of course, the

> multitude of pharmaceutical and medical equipment

> companies represented. My husband and I plan to

> attend and I thought it would be nice to meet someone

> from the list while there.

> Anyone else attending the Pittsburgh Childrens CF

> presentation next month???

>

>

>

> ~

> With so many questions...

>

>

>

>

> =====

> Ruling on High as Mommy Extrordinaire

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

> Outstanding accomplishments:

> 1. R.C.

> 2. Cheyenne

> 3. Levi

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

>

> __________________________________________________

>

[Guest guest]

children hospital in philadelphia, pa

[Guest guest]

no,not CHOP. Childrens Hospital of Pittsburgh,Pa.

On Sun, 18 Mar 2001 08:53:42 EST, cfparents wrote:

> children hospital in philadelphia, pa

>

>

>

[Guest guest]

what an absolute horror story!!!!!!! Why is it that docs do this

stuff? and how is it that they can make you take your kid to the hospital?

Was it doc ego?

(all rhetorical questions, obviously)

sorry you had such a bad experience....

Jen

[Guest guest]

ACK! Thanks for all the info about your experience at

Pitt. Childrens! Fortunately, our experience has not

been like yours. We now only see Dr. O, although we

once saw Dr. Winnie. (I did not care for her style,

although I'm sure she's well qualified and some people

just adore her.)

Now I just make sure Dr. O is who we are scheduled to

see. If they can't get us in with him when we are

supposed to go back, I just change the appointment for

a few weeks later. We had been scheduled to take Levi

to Dr. Finder last time and I had called and

rescheduled to see Dr. O (Now I'm convinced that this

was a *close call*!)

I'm glad you did find a good clinic to attend.

I suppose we will stick with Pitt as long as Dr.

Orenstein can treat Levi. We've had him for three

years now and I'm very satisfied with his technique

and style.

I suspect it's hard to find a good pediatric

pulmonologist who specializes in cf who " clicks " with

me and my son... wouldn't want to have to go find

another one!

Thanks again,

~

=====

Ruling on High as Mommy Extrordinaire

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

Outstanding accomplishments:

1. R.C.

2. Cheyenne

3. Levi

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

__________________________________________________

[Guest guest]

michelle,

as long as dr o isn't writing a book. he is available. we were there for

the first book, thats why we saw him for 2 years then another dr, but then

the 2 nd book he took time off from doing clinic. but if your not able to

see dr o then see dr kurland. they both have the same stlye, nice and work

with you. were you there when dr deluca(resident) was there? he's in long

island now. he was a good dr and he was into herbs also.

chris

On Sun, 18 Mar 2001 23:16:23 -0800 (PST), cfparents wrote:

>

>

> ACK! Thanks for all the info about your experience at

> Pitt. Childrens! Fortunately, our experience has not

> been like yours. We now only see Dr. O, although we

> once saw Dr. Winnie. (I did not care for her style,

> although I'm sure she's well qualified and some people

> just adore her.)

> Now I just make sure Dr. O is who we are scheduled to

> see. If they can't get us in with him when we are

> supposed to go back, I just change the appointment for

> a few weeks later. We had been scheduled to take Levi

> to Dr. Finder last time and I had called and

> rescheduled to see Dr. O (Now I'm convinced that this

> was a *close call*!)

> I'm glad you did find a good clinic to attend.

> I suppose we will stick with Pitt as long as Dr.

> Orenstein can treat Levi. We've had him for three

> years now and I'm very satisfied with his technique

> and style.

> I suspect it's hard to find a good pediatric

> pulmonologist who specializes in cf who " clicks " with

> me and my son... wouldn't want to have to go find

> another one!

>

> Thanks again,

>

> ~

>

>

> =====

> Ruling on High as Mommy Extrordinaire

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

> Outstanding accomplishments:

> 1. R.C.

> 2. Cheyenne

> 3. Levi

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

>

> __________________________________________________

>

[Guest guest]

Did you used to have Dr. DeLuca? Arthur DeLuca there? Any opinions on

him????

Rosemary in NY with 3 kids with CF

ages 10, 8 and 4!

e-mail : Rosemary3for3wCF@...

[Guest guest]

I've never known Dr Deluca, we have only seen Dr.

Orenstein and Dr. Winnie, and I met a few other cf

clinic dr.s at the last cf update they gave (including

dr. finder, who is becoming notorious here!)

I take Levi to clinic at Wexford, which is Children's

North, whenever possible. I hate driving down into

the city (WHO decided to place Children's Hospital

RIGHT IN THE MIDDLE of downtown Pittsburgh's business

section????!) and Wexford is such a breeze to get into

and out of, and free parking to boot! (Obviously I am

fairly easy to please!)

I will keep Dr. Kurland in mind when Dr. O writes his

next book.

Thanks!

~

wrote:

if your not able

to

see dr o then see dr kurland. they both have the same

stlye, nice and

work

with you. were you there when dr deluca(resident) was

there? he's in

long

island now. he was a good dr and he was into herbs

also.

chris

__________________________________________________

[Guest guest]

> which book do you have?

>

> chris

>

I have the second edition. So I guess he wasn't holding out on me

after all.

He has since written another book or two, aimed at medical

professionals, about cf. I don't have those ones, but I think

someone on list does. Maybe Jen or ? Or both? I can't

remember.

Maybe we could get an onlist book review? Just to see if we're

missing anything in those other books.

~

[Guest guest]

Hey I too would bash and have done my share of bashingof nurses and

Dr. who haven't done what they are supposed to be experts and

specialist at. If a Dr had been neglegant with the care of my child

in which the quality of their life was jepardized they need bashed. I

too have seen my share of battles and will continue to I am certain

of. One reason bashes this facility is to let others know what

to look for. Understand?

Dana

> Chris: enough of the pgh. bashing. I've had my battles too, but my

heart and

> soul are in that " silver " elevator to the 3rd. Floor. Understand?

>

> Doug

[Guest guest]

Dr. O also wrote a Book that is a medical guide targeted more to Dr.s I

bought it from Amazon. It has a lot more information than the one targeted

to families. He also has a like 3 book set that is pretty expensive that I

think really gets more into the science of it, I am not sure about it.

Lori

mom to Scout 2wCF

Re: Re: Re: Pittsburgh

> michelle,

> dr o wrote 2 books. they are both named cystic fibrosis a guide for

patient

> and family first and second edition. one has an orange color cover and

> the second edition has like a black and white with words all over. the

1st

> was wrote somewhere around 1989 and the second around 1994? might be later

> than that but they both say basically the samethings but the 2nd edition

of

> to be more up-to-date.

> dr kurland didn't take time away from clinic to help with the book. he

> wrote 1 maybe 2 chapters.

> which book do you have?

>

> chris

>

>

> On Tue, 20 Mar 2001 04:10:44 -0000, cfparents wrote:

>

> >

> > > michelle,

> > > i just thought of something. dr kurland helped write part of dr.

> > o's last

> > > book. and also when he writes his books. dr o usually gets enough

> > copies for

> >

> >

> > So, would that mean that Dr. Kurland wouldn't be available to see

> > patients, either???

> >

> >

> > > his patients and gives them to you. dr.o gave me both of his books.

> >

> >

> > What do you mean " both " ??? I only got " Cystic Fibrosis A Guide For

> > Patient and Family " - what other book did you get? Don't tell me

> > Dr. O is holding out on me! ;')

>

>

>

>

>

> _______________________________________________________

> Send a cool gift with your E-Card

> http://www.bluemountain.com/giftcenter/

>

>

>

>

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

> 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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>

>

>

>

[Guest guest]

Well, I don't think anyone was bashing Pittsburgh Children's cf

clinic per se, just one pediatric pulmonologist who works there, and

who happens to have a sh**ty track record. (At least as far a

internet lists go... well, evidently as far as lawsuits go, too.)

I've met that particular doctor in person and have encountered him on

other lists, and don't really have much to say in defense of him.

But he's not the only dr. at Pitt. From what I can tell, most of the

Pittsburgh doctors are excellent, including Dr. Orenstein. And if my

child (any of my children) had to be admitted to a hospital,

Pittsburgh Children's would be my first choice (of course, I don't

want that to happen! I have no desire to face the silver

elevators!)

I can certainly see why dealing with the one " bad " medical

professional could ruin a person's view of an entire facillity,

though. You know what they say... one bad apple spoils the whole

bunch.

~

> Hey I too would bash and have done my share of bashingof nurses and

> Dr. who haven't done what they are supposed to be experts and

[Guest guest]

no thats completely wrong,

when 1 dr does something bad and you plead with the other dr to help you

and they step back and just let him go and tell you he is doing wrong then

they are in the wrong also. and yes i was and still am bashing dr finder and

i always will because he will hurt someone.

chris

On Tue, 20 Mar 2001 17:28:13 -0000, cfparents wrote:

> Well, I don't think anyone was bashing Pittsburgh Children's cf

> clinic per se, just one pediatric pulmonologist who works there, and

> who happens to have a sh**ty track record. (At least as far a

> internet lists go... well, evidently as far as lawsuits go, too.)

> I've met that particular doctor in person and have encountered him on

> other lists, and don't really have much to say in defense of him.

> But he's not the only dr. at Pitt. From what I can tell, most of the

> Pittsburgh doctors are excellent, including Dr. Orenstein. And if my

> child (any of my children) had to be admitted to a hospital,

> Pittsburgh Children's would be my first choice (of course, I don't

> want that to happen! I have no desire to face the silver

> elevators!)

> I can certainly see why dealing with the one " bad " medical

> professional could ruin a person's view of an entire facillity,

> though. You know what they say... one bad apple spoils the whole

> bunch.

>

> ~

>

>

>

> > Hey I too would bash and have done my share of bashingof nurses and

> > Dr. who haven't done what they are supposed to be experts and

>

>

_______________________________________________________

Send a cool gift with your E-Card

http://www.bluemountain.com/giftcenter/

[Guest guest]

i didn't know that.

chris

On Tue, 20 Mar 2001 07:22:53 -0600, cfparents wrote:

> Dr. O also wrote a Book that is a medical guide targeted more to Dr.s I

> bought it from Amazon. It has a lot more information than the one

targeted

> to families. He also has a like 3 book set that is pretty expensive that

I

> think really gets more into the science of it, I am not sure about it.

>

> Lori

> mom to Scout 2wCF

>

> Re: Re: Re: Pittsburgh

>

>

> > michelle,

> > dr o wrote 2 books. they are both named cystic fibrosis a guide for

> patient

> > and family first and second edition. one has an orange color cover

and

> > the second edition has like a black and white with words all over. the

> 1st

> > was wrote somewhere around 1989 and the second around 1994? might be

later

> > than that but they both say basically the samethings but the 2nd

edition

> of

> > to be more up-to-date.

> > dr kurland didn't take time away from clinic to help with the book. he

> > wrote 1 maybe 2 chapters.

> > which book do you have?

> >

> > chris

> >

> >

> > On Tue, 20 Mar 2001 04:10:44 -0000, cfparents wrote:

> >

> > >

> > > > michelle,

> > > > i just thought of something. dr kurland helped write part of dr.

> > > o's last

> > > > book. and also when he writes his books. dr o usually gets enough

> > > copies for

> > >

> > >

> > > So, would that mean that Dr. Kurland wouldn't be available to see

> > > patients, either???

> > >

> > >

> > > > his patients and gives them to you. dr.o gave me both of his

books.

> > >

> > >

> > > What do you mean " both " ??? I only got " Cystic Fibrosis A Guide For

> > > Patient and Family " - what other book did you get? Don't tell me

> > > Dr. O is holding out on me! ;')

> >

> >

> >

> >

> >

> > _______________________________________________________

> > Send a cool gift with your E-Card

> > http://www.bluemountain.com/giftcenter/

> >

> >

> >

> >

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

> > 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

> > _________________________________________________

> >

> >

> >

> >

[Guest guest]

that is completely right !!!!!!!

alot of people that go to childrens hosp of pitt. is , that it is a

research hosp. and the patients that they admitt are the guiney pigs and

they don't say anything to the parents until after the study is done.

thats why they say we will see what this or that does. then you are part of

there research.

i found out the hard way,very hard way.

chris

thank you dana.

On Tue, 20 Mar 2001 11:33:00 -0000, cfparents wrote:

> Hey I too would bash and have done my share of bashingof nurses and

> Dr. who haven't done what they are supposed to be experts and

> specialist at. If a Dr had been neglegant with the care of my child

> in which the quality of their life was jepardized they need bashed. I

> too have seen my share of battles and will continue to I am certain

> of. One reason bashes this facility is to let others know what

> to look for. Understand?

>

> Dana

>

>

> > Chris: enough of the pgh. bashing. I've had my battles too, but my

> heart and

> > soul are in that " silver " elevator to the 3rd. Floor. Understand?

> >

> > Doug

>

_______________________________________________________

Send a cool gift with your E-Card

http://www.bluemountain.com/giftcenter/

[Guest guest]

How is Dr. Orensteins book which is geared for medical professionals? Is it

understandable at all? Also for all of you who are doing the Great Strides

walk and doing the letter writing campaign, would you mind posting your

letters so I can steal, I mean get some ideas? Thanks alot!

le

[Guest guest]

It is very understandable. I think the volume of 3 books (that I have never

seen, but I think Barbara Palys of Cystic-L could tell you about) are more

" scientific " . The second book is very easy to read. I just found that has

some info. not included in the first book and maybe not shared with us by

our Dr.s.

Lori

mom to Scout 2 wCF

Re: Re: Pittsburgh

> How is Dr. Orensteins book which is geared for medical professionals? Is

it

> understandable at all? Also for all of you who are doing the Great Strides

> walk and doing the letter writing campaign, would you mind posting your

> letters so I can steal, I mean get some ideas? Thanks alot!

> le

>

>

>

[Guest guest]

Chris: if ya want to bash dr. finder here is some more ammo. when our son

now a year old with c/f was about a month old my wife called the ER

at childrens because she just couldn't take 's screaming anymore.

nothing would calm him. she spoke to dr. finder on the phone who promptly

said bring him in. when she arrived and dr. finder checked him out his

exact words were " he's bored, " this was the last time we have

had anything to do with this man. Of course it turned out to be a lot of

things like he was starving to death (malabsorption) and severe acid reflux.

thought I'd throw my two cents in.

Doug

[Guest guest]

Definitely understandable,

n Rojas

[Guest guest]

ACK! I take that this is pre-diagnosis?

What clinic do you take your child to now?

How many people has this guy scared away from the clinic he works at,

I wonder?

Thank you for sharing this disturbing account. I will certainly be

even more wary of dr. f in the future.

~Michellle

> exact words were " he's bored, " this was the last time we have

> had anything to do with this man. Of course it turned out to be

a lot of

> things like he was starving to death (malabsorption) and severe

acid reflux.

> thought I'd throw my two cents in.

>

> Doug

[Guest guest]

see, i think a dr that would say that a 1 month old " is bored " is totally

nuts.

if a 1 month old can get bored, then i have not a clue about kids anymore.

i mean what do babys do---nothing unless there is something wrong. they

sleep and eat. if they cry that means there is something wrong.

heres a question , do you think he should still be a dr of atleast people?

mmmmmmmmmmmmmmmmmmmmmmm NOT .

chris

On Wed, 21 Mar 2001 16:06:33 EST, cfparents wrote:

> Chris: if ya want to bash dr. finder here is some more ammo. when our

son

> now a year old with c/f was about a month old my wife called the

ER

> at childrens because she just couldn't take 's screaming anymore.

> nothing would calm him. she spoke to dr. finder on the phone who

promptly

> said bring him in. when she arrived and dr. finder checked him out his

> exact words were " he's bored, " this was the last time we have

> had anything to do with this man. Of course it turned out to be a lot

of

> things like he was starving to death (malabsorption) and severe acid

reflux.

> thought I'd throw my two cents in.

>

> Doug

_______________________________________________________

Send a cool gift with your E-Card

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[Guest guest]

Has anyone reported him to the Hospital Board yet? I would strongly suggest

this so it will at least help future children in the same predicament. I

went to the hospital board here in Phoenix on a CF Center doctor who

misdiagnoised and mismanaged her care. The Hospital Board should know this

info.

, mom of Shantell 19yr wcf

Re: Re: Pittsburgh

i am assuming that this is after diagnosis. because why would she have any

reason to have had to talk with dr finder unless the child had cf.

at morgantown, wvu, there are a few patients that use to go to pitt. but

you can basically schedule your way around him, unless you get admitted and

he is the one doing round, and watch out then.

chris

On Wed, 21 Mar 2001 21:40:15 -0000, cfparents wrote:

> ACK! I take that this is pre-diagnosis?

> What clinic do you take your child to now?

> How many people has this guy scared away from the clinic he works at,

> I wonder?

> Thank you for sharing this disturbing account. I will certainly be

> even more wary of dr. f in the future.

>

> ~Michellle

>

>

>

> > exact words were " he's bored, " this was the last time we have

> > had anything to do with this man. Of course it turned out to be

> a lot of

> > things like he was starving to death (malabsorption) and severe

> acid reflux.

> > thought I'd throw my two cents in.

> >

> > Doug

>

_______________________________________________________

Send a cool gift with your E-Card

http://www.bluemountain.com/giftcenter/

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]

i am assuming that this is after diagnosis. because why would she have any

reason to have had to talk with dr finder unless the child had cf.

at morgantown, wvu, there are a few patients that use to go to pitt. but

you can basically schedule your way around him, unless you get admitted and

he is the one doing round, and watch out then.

chris

On Wed, 21 Mar 2001 21:40:15 -0000, cfparents wrote:

> ACK! I take that this is pre-diagnosis?

> What clinic do you take your child to now?

> How many people has this guy scared away from the clinic he works at,

> I wonder?

> Thank you for sharing this disturbing account. I will certainly be

> even more wary of dr. f in the future.

>

> ~Michellle

>

>

>

> > exact words were " he's bored, " this was the last time we have

> > had anything to do with this man. Of course it turned out to be

> a lot of

> > things like he was starving to death (malabsorption) and severe

> acid reflux.

> > thought I'd throw my two cents in.

> >

> > Doug

>

_______________________________________________________

Send a cool gift with your E-Card

http://www.bluemountain.com/giftcenter/

[Guest guest]

Hmmmmm. That would be my concern if Levi had to be admitted. How

often do the dr.s change rounds, anyway? Is it a weekly, monthly

thing? does anyone know right off hand?

I'd hate to switch clinics just because there is a chance that at

some point I might have to deal with the one bad dr. there. At least

I know WHICH one to watch. If we switched clinics, I wouldn't know

anything about which drs were incompetent.

" know your enemy. "

Thank you for your eye-opening posts, Chris.

~

> you can basically schedule your way around him, unless you get

admitted and

> he is the one doing round, and watch out then.

>

> chris

[Guest guest]

You can refuse treatment from a specific doctor at any time or any place,

even if he is the on-call doctor. I've had to do this on several occasions

at the hospital. I just tell them, " we don't see Dr. >>>> " . Maybe that's

embarassing to some, but I've become a tough old cookie when it comes to my

daughters care. I think you have to sometimes.

, mom of Shantell 19yr wcf

Re: Pittsburgh

Hmmmmm. That would be my concern if Levi had to be admitted. How

often do the dr.s change rounds, anyway? Is it a weekly, monthly

thing? does anyone know right off hand?

I'd hate to switch clinics just because there is a chance that at

some point I might have to deal with the one bad dr. there. At least

I know WHICH one to watch. If we switched clinics, I wouldn't know

anything about which drs were incompetent.

" know your enemy. "

Thank you for your eye-opening posts, Chris.

~

> you can basically schedule your way around him, unless you get

admitted and

> he is the one doing round, and watch out then.

>

> chris

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