Ammonia/Liver/hepatic encephalopathy

[Cherryl]

We are at a total loss and would like some suggestions on where to turn.  I want to give background, this will be lengthy.

Our mother is 68, has had a heart attack, several silent ones, colon cancer (which has been removed), congestive heart failure, and gall bladder removed.  At one time, we think around 92-93, she had jaundice.  She had lost a lot of weight at one point, but don't remember if they ever told us why.  Her platelets had been down to 45,000 to 50,000 around June 1998.  Because of all her problmes, her liver panel has been elevated for about 4 years.  

Late December 98 she had a spell (for lack of better term) where she was acting silly and couldn't function properly.  Se went to the hospial that night and stayed for several days.  The next spell happened 5 week later.  She seemed to want to sleep a lot the day before she had the spells.  They appeared to come on at night after going to bed.  She messed in her bed and wouldn't get out, was combative and child like, and she looked at us, but it was like she was looking though us.  It appeared that when she had to urinate, it would wake her up enough to where she would want to go to the bathroom.  She was out of the spell by the next day.  For the next 2-2 1/2 months these spells became closer together and more severe.  At one point she didn't know us.  Her cardiologist was certain it was dimentia but sent her to neurologist.  She had MRI, MRA, and EEG.  All were fine. He said she didn't have dimentia, but didn't know what was wrong.   No doctor saw her during one of these spells.  One doctor at an ER said it was dimentia and not to bring her in, there was nothing they could do.  On 3/18/99 she had a severe spell and that was the last one - until 11/11/99.  She had another mild spell and came out of it right away and went out of the house that afternoon.  This past Friday (11/19/99) she began to have another one.  It was not mild.  She had messed in the bed again.  This time we had her taken to an ER.  The paramedics said her O2 was low and put her on oxygen.  Then she began to respond a little.  She vomitted in the ER.  The ER did a CT of the brain and it was OK.  They admitted her.  The hospital did bloodwork.  As ususal the liver enzymes were elevated.  Saturday morning they indicated her ammonia level was at 187 and her platelets were 50,000.  They did a CT on the abdoman and the only thing he said he saw was a large kidney stone.  She had a kidney infection.  They gave her lactulose.  This is Sunday and she has not totally come out of this spell.  He said he will probably send her home tomorrow and doesn't appear interested (but that is another story).  Anyway, we are at a loss.  We've read articles on the internet and to us it doesn't appear very good.  We are at a loss and don't feel she should be going home (she lives alone).  We don't know where to turn for help or answers.  We are in Watertown, NY and don't see a hepatologist in the phone book.  Do you have any information or suggestions as to what might be going on with her body or a doctor you could recommend - even in Syracuse, NY?  

Thank you for your time and assistance.

Cheryl and Terri

[evangelin]

I saw my very old post above and need to say that that is no longer the recommendation for those with cirrhosis.  Although it seems to lower ammonia levels, it lowers other things that you don't want to lower such as the albumin .  Joe now eats  a higher protein diet and uses lactulose to remove the ammonia and he is getting along well this way.  I hate that I gave bad advice back then but the studies that came out proving that cirrhotics fared better on a higher protein diet hadn't been done yet and even after they'd been done, the information took a long time to trickle down to me.
Ev

[portann]

Hi Lost in Oregon,

I recommend you start a new thread and re-ask your question.

This thread was started in 1999 and resurfaced again in 2008.

You'll get better replies with a new thread of your own, as people have a tendency to read the OP, in this case from 1999.  Or was that 1899? :)

Susan

[lostinoregon]

I am curious as to how many years of having hep C is it when the dementia comes into play??  My mother has had it for over 40 years and is showing signs of dementia.  Now she has gotten the family to believe her dilerious rants and ousted me from the entire family....
This is not easy, and it is comforting to know that there are others dealing with the same issue.
thank you for your input.

Lost in Oregon

[orphanedhawk]

I would echo evangelin's advice . I had mild encephalapthy. Taking lactulose and omitting meat (although I continued eating dairy,) has alleviated this problem. A good heptalogist should help you a lot.
    Good luck

[evangelin]

My husband has cirrhosis  and, for a time, symptoms of very mild encephalapathy. (forgetfullness)  We changed to a mostly vegan diet because the animal proteins in meat and dairy products produce the ammonia problems.  He also takes a few sips of lactulose during the day which I also understand to be very good and helpful. Since making these changes I've not seen anymore symptoms.  I know your situation is far more severe but I thought I'd offer what little I could as help.
Ev

[lillylee1012000]

I'm having trouble with practically the same problem (dimentia ?).  My husband has cirrhosis of the liver and blood flow is diminished, thus, oxygen flow to the brain.  Some days are worse than others......I am at my wits end and other medical problems create even more problems.  My question to you is, what was the answer you recieved, if any, for your question?  I would appreciated a reply!!  ***@****