Re: wondering about doc after clinic visit

[Guest guest]

Sounds like my child's doctor. I get the feeling that he would rather

that I stay uneducated about cf and leave everything up to him. If

that was case, my daughter would still not be on Pulmozyme or use the

Vest therapy. We, as parents, are very concerned anout our children's

future. We therefore put forth the time and energy in the cf

research. I feel some doctors are so busy with patients, etc. they

don't have the time to read up on current studies. My doctor also

looks at me like he doesn't know what I am talking about and then he

dismisses my question. We are seriously thinking of switching

doctors. I just don't know where to begin.

My nephew with cf also uses this same doctor. He is six years old

with two delta 508 genes and still is not doing any chest physical

therapy. The doctor said that it would be too difficult to get him to

cooperate. When does a child decide what treatment they should

receive???

I was also told that they clean each room after each patient, but I

don't think it is true.

Sharon

[Guest guest]

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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