Introduction - new parent

[Guest guest]

Hi - glad to have found the group I wish I didn't need to join.

My 18 year old daughter (freshman at a very tough college) was diagnosed with

PSC on Tuesday (small bile duct only - at least for the moment).

I've been pretty certain for a month and a half that is what she has, but

because her ALT and AST were so low the doctor just wanted to watch and wait -

the numbers would be much higher if something serious were wrong. I've been

there, done that with her UC diagnosis (just before her 4th birthday - after a

year of symptoms with me begging for a referral to a specialist) so I pitched a

fit. He ran a GGT - I'm pretty sure to humor me. 4 x normal apparently wasn't

what he expected, so she had an MRCP (the results of which were relayed to me as

being normal - but I suspect based on later discharge notes that they were not

entirely normal), the GGT stayed high, so he did a liver biopsy a little over a

week ago. The pathologist found the onion skin lesions, and here we are.

She's struggling in school (missed diagnostic time, lethargy, fatigue, insomnia,

itching), but feels it's better to crash and burn on her own than ask for help -

so we're wrestling with how to salvage the semester without trampling all over

her learning to be an independent adult.

She also has not done the research I've been doing since we first suspected

liver involvement in early January, so she doesn't yet have a clue how serious

this disease is - at this stage she doesn't know much more than that it is

chronic and progressive. Spring break is this week - when she comes home after

she finishes up her winter term project we'll have some more detailed

discussions. (Her winter term project is incomplete because that is when the

symptoms got much worse & she had a number of sequential viruses and had to miss

several days work on her project - and it's been snowballing from then.)

I was a member of alt-support-crohns-colitis for the first several years of my

daughter's growing used to having UC (1995-1998, or so - in case any of you

participated there by screen name was lavendrnan), and it was that group that

gave us the idea that food allergies might be involved. (For her, her poultry

allergy triggers an end to remission - and once we took it out of her diet she

was in remission pretty much constantly for the entire ~14 years since

diagnosis.) I'm hoping for the same kind of support and information from this

group - and we (parents) will be in Chicago at the annual conference on PSC, so

I hope to meet many of you in person.