Re: Intro and questions ...cpl more questions.

[Guest guest]

Sandi, and all

PSC was first mentioned to my husband and me by Nick's pediatric liver

specialist Dr. Jack at Children's Mercy Hospital in Kansas City.

I contacted this hospital because they have a pediatric liver care center and

Dr. is the director. After conducting and reviewing the liver biopsy,

MRI, CAT w/ contrast, sweat chloride test, upper and lower GI Scopes, and also

he sent off to Mayo for 's disease, and and a few other things. This is

when we were told he was leaning toward PSC. But, after the ERCP done by a

doctor that I can't remember his name. They said it was not PSC, but was severe

liver disease. Something was or had cause fibrosis of the smaller bile ducts and

had caused a lot of them to dissapear. Also, said no telling how long this has

been going on. I think they mean this is secondary to something else. Anyway, I

figured Dr. was familiar with PSC since he was the one who initially

mentioned it to us.

I guess I should ask about this at our next visit. I think I'm just not asking

the right or spicific enough questions. Anyone have any thoughts on some real

essential questions I should be sure and ask the doc? Though I cannot say enough

about Dr. and his hep. coordinator, Gayla Cheadle.

Thanks,

Son, Nick(9)liver disease 09

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> Hi! I hope you and your son are both having extremely good days!

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> I'm not sure I can offer you any advice, but I can provide a sympathetic ear

if you need one. You say you're not sure if you belong here. If you need our

help and/or we can answer questions for you or give you peace of mind, you are

more than welcome to be here and you absolutely do belong. That's one of the

things I love so much about this site, not only is there an amazing array of

knowledge and experience in this group, but I honestly think it's made up of

some of the nicest, most compassionate and most caring people I've ever had the

privilege of talking to.

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> I am curious. You mention taking your son to several doctors. Were any of

them specialists in PSC? PSC can be incredibly tricky to diagnose from my

experience and from what I understand of it. Is there anyone nearby or anyone

you can go to who might have some experience in that area who can give you some

answers and some more peace of mind?

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> Best of luck to you both!

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> Sandi in VA/Rochester

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