Re: Re:/ wondering about doc after clinic visit

[Guest guest]

,

I actually go to the clinic in Detroit. Could that possibly be where you go?

Sounds like it might be. They always act like I am overreacting too! Where

are you from? I live in Port Huron.....

Holly (mother of Cheyenne, almost 5 w/o CF and Kennedy, 10 months w/ CF)

>

>Reply-To: cfparents

>To: cfparents

>Subject: Re: wondering about doc after clinic visit

>Date: Thu, 26 Dec 2002 01:47:58 -0000

>

>Holly, Unfortunately I too have similiar problems with my CF

>doctors. I had to really push to get the vest (one doctor WILL NOT

>order it so I had to get the other one to do it). The PT therapist

>and nurse told me that they spray the rooms down with something

>that " kills everything " between patients. I too am dissapointed with

>answers I get for instance when he found out that we had stopped

>ADEKS for the duration of the Cipro treatment my daughter is on (by

>the suggestion of HIS nurse) he did not understand why. When I said

>it was because the vitamins are not supposed to be given like for 6

>hours after Cipro and 2 hours before which did not leave a lot of

>time...He was UNAWARE about Cipro and Vitamin reaction..he actually

>pretty much told me I was wrong..even after I told him it was in the

>info that came with the Cipro.

>

>Also my daughter just cultured PA and they are trying to erradicate

>it but if she does not get rid of it after 1 MONTH of treatment they

>are going to just assume they can not get rid of it and stop trying

>to!

>

>SOOOOOOO, I guess we are in the same boat...and I think most if the

>clinics in my area ( Michigan) are slow in taking up new procedures

>or meds. Oh ya, when I ask about trying to avoid PA or what cleaners

>I could use to help get rid of it..or how can I clean my nebs

>better...THey always act like I am overreacting!!!!!! It drives me

>nuts!

>

>Good luck!

> Mom to Hannah (3 wcf) and Tommy ( 5 1/2 wocf)

>

>

> >

> >

> > Hey everyone!

> >

> > I took my daughter to clinic last Friday. I asked my doctor a lot

>of

> > questions and was disappointed with his responses. I am wondering

>if some of

> > his answers are true and if that is what other clinics do.

> >

> > The first thing I asked is how they prevent the spreading of

>pseudomonas

> > from person to person at the clinic. I asked if the patients came

>to clinic

> > on different days. He said that all CF patients with or without

>pseudomonas

> > are seen on the same days. He said that as long as you are atleast

>3 feet

> > away from a person with pseudomonas you will not get it. He also

>said that

> > they clean the rooms after each patient. I don't believe that. I

>have never

> > seen anyone do that and it sure doesn't look like the rooms are

>cleaned very

> > often.

> >

> > I asked this question after reading a bunch of Kim Payne's posts on

>taurine

> > and vitmains etc. I asked the doc if people with CF would benifit

>by taking

> > taurine. He gave me the *what in the hell are you talking about*

>look and

> > asked " what would that be used for? " So I answered him. He said

>that taurine

> > is an amino acid, blah, blah, blah, and that my daugher doesn't

>need it.

> > That she gets all of what she needs from what she eats. He said

>that nothing

> > works better than the enzymes and that is why they use them.

> >

> > I also asked the doc about my daughter needing more vitamins and

>minerals

> > other than what is supplied in the ADEK's. He said " like what? " So

>I

> > mentioned Magnesium, Calcium, and some others. He said not to worry

>about

> > it. He said that everything that she needs is in the ADEK's and in

>the food

> > that she eats. He said that what we are giving her is obviously

>working

> > because when we first starting seeing him my daughter was very sick

>and

> > malnurished. Now she *looks* healthy and is at a good weight. I am

>not

> > satisfied with these answers. Just because she " looks healthy " or

>looks

> > better than when we first came in doesn't mean she IS healthy and

>getting

> > all of the vit. and min. that she needs.

> >

> > I also always feel rushed when I go there. This time he only

>listened to her

> > lungs in two places on her front and said that she sounded good. It

>took him

> > like 5 seconds. He couldn't have done a good job, could he? He

>didn't even

> > listen to the back.

> >

> > What do you guys think? Is this the way it is and I am worring for

>nothing?

> > Your comments would be greatly appreciated.

> >

> > Oh, I just remembered this....When asking a few other questions he

>kept

> > saying " who are you talking to? " and " where are you getting your

> > information? " He made me feel like I was asking crazy things and

>people were

> > telling me things that were not true. I hope that is not the case

>as I have

> > gotten all of my information from you guys.

> >

> > Thanks again...

> >

> > Holly, mother of Cheyenne who is almost 5 w/o CF and Kennedy, 10

>months w/

> > CF)

> >

> >

> >

> >

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