Guest guest Posted September 1, 2000 Report Share Posted September 1, 2000 OK, I know, the rest of you guys are tired of my soap box...... but I gotta do this anyway. Amy, please please consider calling your clinic right away and telling them that you want them to send the culture (what they have growing in the lab, they should still have it if you hurry) to LiPuma's lab. He has a grant from CFF to check cepacia cultures to make sure its cepacia, and they can even ID the strain, etc. I tell you this because we went through hell Christmas of 1998 when they told us that had Cepacia. We insisted they eradicate it, and got a central line and did home ivs. Also, we had to segregate him from my neice, etc at CHRISTMAS. Anyway, we had them send off the culture to LiPuma and it was NOT cepacia. Studies have shown that local labs commonly misidentify other bugs as cepacia, because they grow on the cepacia medium. This happened a second time a few months later when the lab said both and Mallory had cepacia....and it wasn't cepacia that time either. Just doing another culture isn't the best route to take, its best if they send off the culture they thought was cepacia in the first place. I really hope that I am not being too forward, but gosh at the time I would have felt better knowing that it is apparently pretty common to misidentify other, sometimes harmless bugs, as cepacia. I think this happened once to on this list, too, and hers turned out to be Maltophilia once it was sent off to LiPUma's lab. See, their lab actually looks at the genetics of the bug, not just what medium it grows on. Lots of bugs can grow on the cepacia medium commonly used by hospitals,a pparently... anyway, so my humble advice is to run, not walk, to the phone and ask them to send it off before they get rid of the growing culture...... Hope this helps, Torsten, feel free to jump in here any time with links to studies, etc... Take care, Jen Mommy of 7, including ph 14 months with CF, Mallory 2 with CF, RAD, GERD, OSA, new port-a-cath; 4 with CF; 6, Miranda 8, Brittany 7 yo foster daughter soon to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us also ; also aunt to 3 yo with CF Quote Link to comment Share on other sites More sharing options...
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