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Re: cepacia question

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Hi , I don't have any answers for you about the cepacia but I

did have some questions. How did you discover the cepacia in her GI

track? What symptoms was she having? I ask because my daughter has

a horrible time with her GI system. She is almost 4 and had both cf

and down syndrome. She has a g-j tube and is completely tube fed

but we just can't get her to tolerate enough food, she weighs 20

lbs, which is very tiny. The reason I'm wondering about infection

is that she seems to do much better after several weeks of IV

antibiotics and no one has ever been able to give us a good

explanation for that. Before the current IVs, her stoma was quite

swollen on one side, which we have seen before as well. I didn't

know pseudomonas could even really infect the GI system. Any info

you might have on this would be greatly appreciated.

Georgianna

> Since our diagnosis I am getting the kids into the childrens CF

> clinic,

> my question is when my daughter was younger she contracted

> pseudomonas cepacia in her GI tract then her blood and she was

septic

> with it. since it was not in her lungs what is the difference?

> and obviously I should tell them when I schedule her appt right?

> I dont know if she still has it in her system but for safety sake

I

> should tell them first right?

> Hugs,

> S.

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