Re: Joanne - Stupids/Irresponsibility

[Guest guest]

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As the parent, I always wonder how much the PSC symptoms

(fatigue, lousy

sleep, abdominal pain, etc) drag him down, how much is " typical " teen behavior, and what

combination of the two?!? And I wonder how much to push - and never

truly know the answer. I feel guilty that is

not accomplishing what I think he is

capable of.

Ever heard that saying

– *If Only*

? Boy, that’s me! If only we knew about

PSC when Ken was a teenager. He was dx with UC his junior/senior year

of high school. I found out he had

cola colored urine and clay colored stools, but his doctor ignored those

symptoms and so we thought it just happened in connection to the UC flare up. We just didn’t know what it meant. Now, we believe (and current doctors

agree) that he had PSC back then. My husband and I “tried” to push

him…….. to no avail….. he was “lazy”,

slept way too much and too long, didn’t do what we told him to (chores), and

often turned down doing things with his friends (things, we knew he loved) because

he was “too lazy”. His

standard line back then was – “I don’t feel like it”. If only…..we

knew. All of our “plans”

for him changed over the next couple of years as we realized he wasn’t

going to accomplish what we wanted/expected for him. He never went to college, was a hard

worker, but always came home and took a nap. He’d sleep most of his weekends

away (still does). Things got

better for several years, then we found out about the PSC and the whole picture

became clear. He wasn’t lazy,

he wanted the same things for himself that we wanted, but just couldn’t

accomplish them. I sure wish we had

known…..talk about feeling guilty!

You know about his PSC

and you know how he was raised, chances are, if he could, he would, if not he

probably can’t. That’s

the crazy part about PSC, everyone is so different. Ken has never had a Cholangitis attack, but his overwhelming fatigue

is just as devastating. Don’t

push too hard.

Barb in Texas

[Guest guest]

> Ever heard that saying - *If Only* ? Boy, that's me! If only we

knew about PSC when Ken was a teenager. He was dx with UC his

junior/senior year of high school. I found out he had cola colored

urine and clay colored stools...We just didn't know what it meant.

Now, we believe (and current doctors agree) that he had PSC back then.

> Barb in Texas

>

Barb -

Thank you SO MUCH! 's story is so much like Ken's, especially as

I believe he had PSC in 2000 when we first checked labs and saw

elevated liver function tests! He had symptoms then, but my thoughts

were so similar to yours.

I too am great with the " IF only's " ... again, thanks for your thoughts.

Joanne

(, Ca., mom of , 16, UC/PSC 2-06; JRA 1998)