New: intro, questions, greetings

January 26, 2007

Hi, I'm Meghan, a west-coaster (37yo). We're new to this support

board ('we' being my husband, Russ and our son, Wyatt) --even though

I'm the one posting. I've skimmed the board a little, but haven't

seen any post so far regarding a child with PSC. Our son, Wyatt is

12 and was diagnosed this week after many weeks of symptoms and

testing leading up to it. He's stage 1. Does anyone else here have a

child with PSC? He has Ulcerative Colitis along with PSC (as well as

another medical condition completely unrelated to either PSC or UC

that was diagnosed 5yrs ago). We're very, very new to PSC and are

just learning about it. Our son started a low-fiber diet & taking

the VLS packets 2 days ago for his colitis and is suppose to start a

high-dose antibiotic for the PSC in about 4 weeks (it's an antibiotic

that Stanford is using in a research trial --he's not in the trial,

just getting that specific antibiotic, the name of which I can't

remember at all at the moment). I'd like to understand PSC better

(and thoroughly) as well as what it's like to live with (and what to

expect ----and how to help someone you love who has it). I'd also

like to know how to guide my son through the emotions that will come

up as he moves along with this. Right now, he doesn't know

everything his dr told us or anything we've read online. Russ and I

are trying to figure out when it's best to share more, but we don't

feel it's best right out of the starting gate. It's already not

exactly easy on us right out of the starting gate and we're the

adults. Any advice, suggestions, information, shared experience, etc

would be most appreciated. I want to do this right for my son in

every way that I can.

Also, my 51yo sister is being tested for PSC. She doesn't have the

definitive diagnosis yet, but her dr was looking at it even before

our son began having the colitis symptoms that led to the blood work

that led to his being tested for it --so I suspect her diagnosis is

just around the corner.

Thank you for the board's existence as well as for taking the time to

read my post.

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