Time for a hepatologist?

[Guest guest]

and I have been, and we think are still, happy with Pearl's GI

doctor. He has gotten her liver numbers under control and her IBD is

still simmering but a lot better than what it was. She is obviously a

complicated case, being only 4 years old and 3 at diagnosis with

PSC/AIH overlap and Crohn's (maybe indeterminite colitis?).

So Pearl's liver numbers have looked good for several months but there

is always something lingering at the back of our minds pushing us to

consider taking her to a hepatologist. Maybe it is that we have heard

so much from other families about PSC progressing without showing up

on the labs or her vague symptoms that could be attributed to either

her liver disease or her IBD. She still has fatigue and stomach pain

but no outward signs of IBD. And last month her ALT was ever so

slightly elevated, but more elevated than it has been since it was

brought under control back in the Fall. We understand that this could

mean many things, but it makes us uncomfortable.

Philadelphia told us that her liver disease may never be an issue but

how can they really be sure? We are both skeptical that they really

do have a good understanding of this disease. I am certain that her

GI doctor would send us to a hepatologist if her numbers/symptoms were

to go back up and he couldn't get them back under control, but is that

all there is to it? Would a hepatologist have more to offer than

throwing another drug at it? He said that he won't do another liver

biopsy for a year. The first biopsy last Fall showed her as being at

the beginning stages of small duct PSC with more advanced AIH.

(and )

mom and dad to Pearl, age 4, and three other wonderful kids

[Guest guest]

I don't know if a hep. would do anything different, but as a parent I

think you should follow your gut feelings. You want the peace of mind

that you have done everything you can for your daughter, if you have

that feeling with the gi doc. that is great,if you have doubts and want

another docs opinion than go for it.

PSC 5/07 Listed

[Guest guest]

I don't know if a hep. would do anything different, but as a parent I

think you should follow your gut feelings. You want the peace of mind

that you have done everything you can for your daughter, if you have

that feeling with the gi doc. that is great,if you have doubts and want

another docs opinion than go for it.

PSC 5/07 Listed