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Liver & Pancreas Disorders Message Board


Liver & Pancreas Disorders Board Index


just when is that ultrasound scheduled for? that one good look at the actual liver itself and the very critical bloodflow esp thu that portal vein is really really important right now. you mentioned his actual liver labs were out of the norm?? what were his ast, alt and his alk phosphatasse at? where are they now? and his biliruben?

unfortunetly my youngest sons liver disease also hit/showed itself when he too was at age 12. do you have ANY family history on either side of ANY types of either a kidney disease or liver? that too matters alot.

when you stated his follow up labs all came out 'negative", exactly what does that mean? do you yourself make certain to always always obtain your own copies of all of his testing results, esp the ongoing lab work? if not ,i would very highly recommend that you do from here on out and also obtain ALL of his previous ones too as well as all medical records generated so far at his regular ped docs office too? you just really do NEED to be keeping this stuff in an ongoing way in order to REALLY just know what is actually going on here with him at any given time.

unfortunetly not all docs, esp the dang specialists will always even tell you everything about anything they feel or see or that is even listed in any given testing result report. its just the way things are out there, trust me here on this one. just make certain to always ask for your own copies of any and all of those labs when they are generated. you may need this stuff to use as comparritives if he is ever needing to actually go to any ER at some point? i keep everything in an expanding type of folder so if that need ever arises, i just grab that folder with all his more pertinent info in it and go. the ER docs will LOVE this as it does give them a good solid baseline to work from too.

when you mentioned having bloody stools? is that red blood or actually like the partially digested blood that would appear to look more like blackish coffee grounds? or possibly even both? knowing that would just show whether that blood is stemming from above that liver in the upper GI or the lower, below the level of the liver in the lower GI.

honestly? if he ONLY has the enlarged liver without the spleen actually also being enlarged too with what you have stated as labs and the possible dxes you mentioned, it would more than likely point more towards an actual liver issue moreso than possible leukemia? usually with leuk being there, that spleen is almost always much more really enlarged esp when the liver is too kind of thing? unless of course it simply was caught much earlier and that has not yet occured, but the spleen would usually show this well before the actual liver would become enlarged, in most cases anyways. this is just the overall nature of how the spleen would react in that particular instance,thats all.

i am glad the US is being done to simply really see what is actually possible in having it. my son unfortuently, we did not even know he was actually even sick since he had been sorn with this insane type of liver disease that was very slowy creating little fibers to take over his healthy liver tissue. it was not til he was actually in portal hypertension once his P vein closed off from scarring that he just presented with his crap actually vomiting up blood at school one day. that WAS a major shocker to even find out at all. that was a day from hell spent first ruling out possible leukemia too only becasue both his liver and the spleen were soo very overly enlarged, and ending up finding out that he may need a liver tx by that one days end. it was insane let me tell ya.

hopefully whatever it is your son actually has here is much much less impactful and totally treatable. there are just sooo many different types of disease processes and conditions out there that some you can even be born with and simply not even know it til something just shows itself. but DO start gathering up all of his lab results and also any specialists he may be seeing? get their ongoing records too like once every six months or so depending on how often he is being seen(those peds records and the labs get right now tho). but ALWAYS get the lab sheets as soon as possible. those you just NEED to not only look thru yourself, but have to have just incase of an emergent type of situation. you just do not know how any condition will play out here and its simply a really great idea to be fully prepared for any possiblity. its a 'hope for the best, but plan for the worst' when it just comes to our children and this unfortunete type of crap that gets forced upon them. also obtain the labs from that liver doc too just so YOU can see what the latest labs actually state and how they are too, like midrange norm or at the high end norm? it does kind of show escalation, ya know what i mean?

i do wish you both alot of luck here with this. please let me know exactly what you find out stephie. marcia





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