Re:Holly/ wondering about doc after clinic visit

[Guest guest]

Holly, I am in St. ph (southwestern lower Michigan) and we go to

the clinic in Kalamazoo. I get the feeling that the clinics in

Michigan are all the same way!!! I guess we just need to not pay

attention to how they react when we ask questions and just keep

asking them! I had been questioning how they were having us clean

our neb equipment for some time and they always just dismissed my

concerns...at our last appointment they changed how we are to clean

our equipment because the old way was not good enough. Thanks to

people on this site I had already been sterilizing with a Microwave

bottle sterilizer every time we use the neb!

Keep up the fight!

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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>

>

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