8 y/o son w/ PSC

[Guest guest]

I am wondering about the others with children who have PSC. If they

are having ERCP's done. If there's a known cause to their

children's cases. If they're being considered for transplant. Etc.

My son just turned 8 years old in February. He had a transplant

work up last August for a double lung transplant (end stage

pulmonary fibrosis) after having collapsed lungs 5 times. During

his work up his liver condition was found. It was bad enough and

making him sick enough at the time that they weren't sure they'd be

able to transplant lungs and have his liver keep him stable through

it. They did manage to stablize his liver enough, and he had his

lung transplant on February 26.

Now we're working on getting a plan together for his liver. Since

October he has had several ERCP's. He currently has 3 biliary

stents in place which are changed out at each procedure. He hasn't

been able to last more than 4 weeks in between because the stents

(one of them, anyway) get clogged and he ends up with ascending

cholangitis and gets terribly sick. Now with him being on

immunosupressants for his lungs we can't play around with

antibiotics when he has an " episode " because he doesn't have the

immune system anymore. He's already got scarring in his liver and

even after 7 or so ERCP's Dr. Cass is still pulling stones out when

he goes in.

I guess, since no one else here has a child with this particular

problem (here at the hospital, or anywhere else I've been in the

whole world), I was hoping there was someone here who I can talk to

about this and knows what I'm saying.

I'm also wondering if anyone's child (or any adult) has (or has been

screened for) LCH?

Thanks!

p/s: In addition to this group, I also joined the pscmoms group.

Ami

mom to:

, 8yrs - fmr 25 wkr - BPD, ASD, Double Lung Tx 2/26/06, PSC,

GERD, ADHD, DI, Steroid Induced Diabetes, HypoT, Pituitary something

Emma, 12yrs - ft - migraines but perfect

, 13yrs - ft - ADD