At what stage in the course of PSC does the am,piña start rising? My son’s was 111 just a couple weeks after Dx. He’s on lactulose now. Last test showed ammonia at 56.

Blockage of bile can be gradual, partial to quick, causing ammonia toxins to build in brain. Try to keep him well hydrated, and call doctor immediately with changes in his condition. Your post regarding referral for second opinion…ask your doctor to arrange urgent referral, also, you might get idea of where to go by reviewing clinical trials for children. Call and ask to speak with coordinator of clinical trial, they can give you ideas for referral, and may be able to get you into appointment faster.

Dear Rivermouse,

I am sorry to hear your son has PSC. Keep confident that you can beat it. Ammonia does not build up in all PSC liver patients. I know at least 8 liver transplant recipients at my support group and only half of them had any ammonia issues whatsoever. Lactulose works. It did a good job of controlling my ammonia. There is also an antibiotic, the name of which escapes me, that can be helpful at lowering ammonia, as well.

Keep the faith!

My father was diagnosed with PSC in his late 60s and is now 82 and just in the past 2 months had trouble with ammonia levels - we didn’t know what it was that was causing his mental confusion and we were told it was TIAs (transcient ischemic attacks) - like mini strokes that come and go and leave no trace…was in hospital and now skilled nursing before a dr checked his ammonia levels and then reading about his symptoms realized this pretty much explained everything he’s been going through - he was given lactulose 2x/day - increased to 3x/day and the levels kept climbing and now added Rifaximin(an antibiotic)- in the hopes of bringing down the ammonia levels and clearing the “brain fog” he’s experiencing - hepatic encephalopathy (HE)…too soon to tell whether its working yet