Noah's latest

[Guest guest]

I hope this finds everyone as well as can be expected. I just

thought I would send out an update on our week with Noah. He

actually has been doing well symptom-wise since his hospitalization,

minus some foot pain and fatigue late this week. (He only missed one

on his history test that we studied for together...Davy Crocket and

Boone...he couldn't distiguish between the two.)

After the MDR3 study posted, I did post that article from

Knisley MD from Kings College. Upon the recommendation of several of

the Liver Familiy mums (as they were UKers ) I did e-mail . I

heard back from him almost immeadiately, and he included Mieli-

Vergani MD, and MD also from Kings College. My

question for them initially had been, could Noah have something like

MDR3 deficiency in his bile. After serveral e-mails going over his

history, it was determined that it was unlikely that was the

case...but not an unlikely leap for a mom to make reading the

articles and having a son present at such an advanced stage with no

genetic studies at this point.

They decided that they believe Noah has autoimmune sclerosing

cholangitis, which M-V described as a condition that could " at times

rapidly progressive, so his symptoms can very well be due to

it " ...while 's recommendations were for Noah to have his

thyroid panels evaluated. (Hmmm...something the pulmonologist

suggested weeks ago and was blown off. grrr!)

He did consede that the docs at Pitt are overwelmed with patients

right now. But that they are really good guys. (Never said they

weren't LOL...I think my wording was that I felt like a little fish

in a big pond. )

Interestingly, M-V (she refers to herself this way BTW) thinks his

osteopenia probably did not come from the 6-9 mo of steroids he took

after diagnosis, but more from the AIH/PSC.

So, I don't know what if anything anyone here has to offer. I did

write to Pam (Q's mom) and she was helpful...as he has the same dx.

But you all know me...the more I read the better I am...I looked in

the archives here on the group and there was some and I have printed

it and read it...but it is nothing THAT new. (2005)

My bigger questions are...what does this mean for Noah? Does this

change his prognosis? Does this change his time to tx? Does this

change...anything? I mean...I get the whole...we might throw some

steroids at a flare if the Imuran isn't enough...bit...but I guess I

want to know ...well...more...anyone know anything here??

Could I be a bigger PAIN?

did e-mail Ben Shneider MD (who btw he is renting his house to

in PITT [small world[), going over Noah's stuff...and giving him my e-

mail address etc...but I have heard NOTHING. I hope I did not tick

them off...I was not looking for this.

Oh well.

Blessings to all,

Love and hugs,

www.caringbridge.org/visit/noahwmartens