Where should we go for new doc for Noah? Part 2

[Guest guest]

Okay, I wrote you all

before Rob got off the phone with Dr. F. She is reluctantly giving it to

us. Here is my post to the Caring bridge site.

Well, we kind of have some success

with getting Noah on the high-dose URSO. We are getting the script, but

it is one of those...if you want me to I will things...I guess that makes me a

little uneasy. At first, it seemed she was not doing it at all, but then

Rob questioned some of her reasoning and she backed off.

Apparently, she e-mailed Dr. Giorgina Mieli-Vergani from King's College in England. Dr.

Mieli-Vergani wrote back that she generally puts her patients on 20-30 mg/kg.

Rob finally just said...why not go for the 30 mg then if that was in the

recommended range? She went for it.

Now, please pray with us that he does not have any problems with it. He

should not, but that would be my luck.

www.caringbridge.org/pa/nwmartens

Now what do I do. I have a very reluctant

doctor. I guess we sit, wait, and hope nothing needs any PSC related

treatment anytime soon. I think she can deal with the stable Noah, but if

we need any big decisions or treatment adjustments, I still need a plan.

Any ideas?

Blessings,