anyone had these sxs/ problems ??

[Guest guest]

I asked this on another board for parents of liver kids but nobody

else seemed to have these issues- any takers here ?

My son has short bowel syndrome (3/4 of small bowel & ileocecal valve

removed) as well as PSC and FAP

Here's a list of some of the abnormal tests/syptoms Braden has been

having (I will probably forget a few things..)

Braden can't be the only one with some of theses things going on

*elevated B12- indicated liver damage- for a kid who is missing the

part of the intestines that absorbs B12 and was supposed to need B12

supplement shots for certain

*low fibrinogen

*mural thikening of his common bile duct walls

*pancreatic insufficiency

*poor motility and even had bezoars found in Omaha- doc had said she

only saw something close to how bad his was once ??

*bile acid gastritis- or maybe polyps or gastric varices- no one seems

to agree ??

*starry sky appearance on US indicating fibrosis of inrahepatic ducts

as well as extrahepatic ducts

*vasodilating- gets really hot in his core (no temp) and gets very

flush and nauseas

*HE symptoms and being treated for them but no ammonia increase ?

*recurrent stones and sludge obstructing his common bile duct often

after gallblader removed and despite sphincterotomies (twice) and

stent placements repeatedly

*signs of a slow GI bleed and now decreasing HGB and HCT - were ALWAYS

high in the past

*risk for all GI cancers and a 'guaranteed colon cancer' if not

treated- has familial GI cancer gene - FAP

*can't have roux en y because no 'spare' small intestines

*chronic bacterial overgrowth problems

*has been aciditic and had d-lactic acidosis

*coordination and motor skill problems worsening

* a crazy mom who is having a hard time letting go of her fears and

recognizing that this is all in God's hands