Guest guest Posted December 25, 2002 Report Share Posted December 25, 2002 , 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) > > > > > > > > > > _________________________________________________________________ > > MSN 8 with e-mail virus protection service: 3 months FREE*. > > http://join.msn.com/? >page=features/virus&xAPID=42&PS=47575&PI=7324&DI=7474&SU= > > http://www.hotmail.msn.com/cgi- >bin/getmsg&HL=1216hotmailtaglines_eliminateviruses_3mf > _________________________________________________________________ MSN 8 with e-mail virus protection service: 3 months FREE*. http://join.msn.com/?page=features/virus&xAPID=42&PS=47575&PI=7324&DI=7474&SU= http://www.hotmail.msn.com/cgi-bin/getmsg&HL=1216hotmailtaglines_eliminateviruse\ s_3mf Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.