how often we go to clinic and culture stuff

July 16, 1999

Hi all,

something is wrong with my email program, it refuses to get my mail, so I am

using this other program which is sort of weird. Anyway, I forget who asked

what, but we go to clinic usually every 3 months. At one time we were told its

ok to come only every 6 months, I forget why and how long that lasted. It was

at our " old cf clinic " and the one we go to now says come every 6 mos. At this

clinic we see a GI and a pulm doc on the same day. At the other one they didn't

have any GI doc and if we needed one we had to see one in private practise. I

like it better this way. For ENT we see a doctor also not in clinic, she has

her office across the street.

About culturing pseudomonas, did when she was around 2 1/2 and she didn't

have it treated then. At the time the doctors didn't treat it if it wasn't

causing problems. I doubt if they still treat it there really even now. Oh

and shes 15 now and doing great. She has mostly had sinus problems, 10 sinus

surgeries and #11 coming soon. They will also do a bronch then and see what she

cultures for now. Recently she has not cultured for pseudo for about the past 2

years. So she's not on Tobi or any antibiotics regularly. I don't know how I

feel about that, but I guess we have to listen to the doc. She has been

culturing S. Maltophilia and staph the last few times she has had a culture

done.

I can't remember what else the topics are on this list. So I hope this helps,

and everyone has a good summer!

love,

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