Re: Noah and HE, my opinions

February 2, 2007

,

I agree with MizKit entirely. Go to the mats girl. Kick, fight, scream

if you have to - the docs need to address this more than they have.

(You know from my private emails that I have thought that this sounded

a lot like what I went through...) Anyway, watching your child go

through this is awful. On the other hand, I worry about how he feels

about it - especially with missed homework assignments and embarassing

episodes. He may NOT be getting that this is what is happening ALL the

time, but I'd bet he has some idea that he's not himself.

I knew I was losing my marbles, and it was devastating. Don't

underestimate the importance of saying, " This is the LIVER -NOT YOU... "

I think that's what makes me the most angry at the docs - and is why I

haven't replied until now this week. It is still hard for me to be

rational about this. Why NOT test lactulose or Xifaxin to SEE if HE is

the problem? If he gets better wowee - everybody is happy - if he

doesn't, you've ruled it out!?? That's the #1 question I'd be asking

the docs when I talked to them! Are they this afraid of being wrong

that they can't offer a little boy some help just to see if it would

work?

I know this isn't my problem, so I shouldn't sound so angry. But my

family was in denial as I slipped away, becoming less myself everyday

until I finally spoke up and said - I can't take this anymore. I need

help. I know how it feels to go with these symptoms untreated, feeling

like you're an idiot. Of all the things I've been through, that was one

of the hardest. That and the itching. All the pokes and prods post-tx

have been a pain, but nothing like those two symptoms.

Big (((((HUGS))))) to Noah!

Deb in VA ()

PSC 1998, GB removed 1998, 13 ERCP's, UC 1999, Listed Ltx 2001, LDLTX

5/19/2006, 13 PTC's and 3 sinus surgeries in 2005/2006, MRI scheduled

for next week to assess clot in portal vein and bile duct changes in

new liver.

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