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    Old 12-21-2004, 01:45 PM   #1
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    Toxic encephalopathy

    Can anyone help me with more information on Toxic encephalopathy???

    My husband is on pre-liver transplant with a blocked portal vein. We recently had a incident where his amonia levels got very high (110). They put him on Lactalose (2 tablespoons at night). We have not seen the doctor yet so I was wondering if anyone could help with the following questions.

    -Is this a progressive thing? I read encephalopathy could get as severe as putting him in a coma.... What are the dangerous amonia levels?
    -What are the progressive signs to watch out for?
    -Is the damage caused by this permanent?
    -Is this the result of the damage to the liver or blocked portal vein (or both)? Will it cause more damage to the liver?
    -Would anything like a liver cleanse (read about on the board) help this? What about diet?
    -Could certain medications induce this?
    -Would this impact his transplant chances?

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    Old 12-22-2004, 06:33 PM   #2
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    Re: Toxic encephalopathy


    My mother had Primary Scerlosing Cholangitis from many years of having untreated Ulcerative Colitis. We never knew she had either one of these conditions until she went into a coma in 1994. She was 62 yrs old at the time.

    Her symptoms before she went into the coma were hard to pick up on because she seemed to be with it mentally but she was doing a lot of other strange things. For instance she would start to go down the hallway to the bathroom but as she was walking she was picking up her dress and didn't care who was there to see her. Then we would tell her what she just did and she would argue with us that she didn't.

    Another sign to look for is the eyes. If it looks like your husband is looking towards the ceiling and doesn't seem to be looking at you when you talk to him call his name loudly to see if his eyes focus on you. Chances are he will be able to bring his eyes down to the normal position but won't be able to keep them there.

    Also, have him hold his hands out with his fingers pointing towards the ceiling.....if his wrists drop that is also a sign of impending liver failure. We used to have my mother do this daily after her coma. Another thing the doctor had us do was ask her to read the headlines of the newspaper for that day then keep asking her periodically throughout the day what is was. If she was going into liver failure her memory would also start to fail.

    You will be able to tell if your husband is heading towards liver failure because he will NOT be himself. Please call the dr right away if your instincts are telling you something is wrong. Your husband may remain very lucid and answer all the questions right but the most important ones he won't remember.

    The drs asked my mother who the president of the US was and she knew...she also knew what date is was and what hospital she was in but she could not remember my younger sister's name or what she had for lunch that day.

    The reason she would go into liver failure and eventually end up in the coma was because the ammonia levels in her blood would get too high. The liver usually can rid the body of it but if it is not functioning normally that's when the problem starts. One way of keeping the ammonia level down is to make sure he doesn't get constipated which is the reason for the Lactulose Syrup. You will begin to see signs of liver failure if his ammonia level gets too high.

    Please do not use anything that will cleanse his liver. The most important thing is to make sure he has regular BM's. If he doesn't go for a day then make sure he goes the next day. His waste product is what causes the buildup of ammonia. Basically....if he gets constipated and doesn't have a BM for a few days it could cause him to go into liver failure.

    Do not give him any Immodium AD unless directed by the doctor and most of all he should never take any Tylenol because it is discreted by the liver. As far as his diet his doctor should tell you what he can have. We used to have to limit the amount of protein my mother had in a day. She was allowed 10grams of protein a day and no salt.

    My mother went into a coma several times between 1994 and 2001 and each time she was fine afterwards. It left no lasting damage to her physically or mentally. The life expectancy for someone with my mother's condition is 7-10 yrs without a liver transplant. She was not a candidate for one because she had Breast cancer.

    The test with his wrists is one you should do daily. He will have some weakness but if his liver is still functioning then he will be able to point his fingers towards the ceiling. If they drop then keep an eye on him for more signs. He may or may not be jaundiced.

    I hope this was help to you. If I can think of anything else that may help you I will let you know. It's hard thing to have to live with everyday but once you know the signs you can hopefully avoid the coma.

    I will keep checking the board periodically because I normally don't post here but I was looking for information on a fatty liver when Isaw your post and I knew I had to answer. I hope I helped. Please keep me posted. Good Luck. I will be thinking about you.


    Old 12-23-2004, 06:57 AM   #3
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    Re: Toxic encephalopathy

    Hi Again,

    I just did a search using my search engine and you might want to do it too.

    Type in "symptoms of hepatic encephalopathy". After the search comes up click on the first one. There is quite a bit of information there and it will tell you what to watch for in addition to what I have said.

    Old 12-10-2006, 07:22 PM   #4
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    Re: Toxic encephalopathy

    Hi my name is Rosario

    Just wanted to see how your husband is doing.. please help my mothers amonia level was at 191 it is now at 115..She doen't even recognize me please help!!

    Old 12-29-2006, 10:10 PM   #5
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    Re: Toxic encephalopathy

    Pricha 2 wrote:

    Can anyone help me with more information on Toxic encephalopathy???

    -Is this a progressive thing? I read encephalopathy could get as severe as putting him in a coma.... What are the dangerous amonia levels?

    There are 4 stages of encephalopathy.
    0-Minimal, no noticeable changes
    1- Lack of awareness, impaired addition/subtraction, insomnia, mild confusion, sleep reversal.
    2- Lethargy, Disorientation, slurred speech, deficits in ability to perform mental tasks, disorientation to time.
    3- Somnolent, unable to perform mental tasks,marked confusion, amnesia,rage, incomprehensible speech.
    4- Coma

    -What are the progressive signs to watch out for?
    (see above) Mostly confusion.

    -Is the damage caused by this permanent?
    No. It is completely reverseable once the cause is eliminated.

    -Is this the result of the damage to the liver or blocked portal vein (or both)? Will it cause more damage to the liver?
    encephalopathy is damage to the brain and not the liver. So it in of itself does not cause damage to the liver. But is a very serious consequence of liver damage. Toxins back into the blood and settle in the brain.

    -Would anything like a liver cleanse (read about on the board) help this? What about diet?
    Diet can help. If a person has encephalopathy they must cut down on animal protein. Since it is believed that animal protein breaks down into ammonia in the blood.

    -Could certain medications induce this?
    Most likely not in a patient with cirrhosis. But lactolose is the normal medication to help the symptoms. About 1to2 tablespoons every four hours.

    -Would this impact his transplant chances?
    Yes and no. It depends on the patient and how far advanced the encephalopathy. Many patients die from encephalopathy (a result of cirrhosis) and not the cirrhosis itself.


    Last edited by kmacdona; 12-29-2006 at 10:16 PM.

    Old 12-29-2006, 11:56 PM   #6
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    Unhappy Re: Toxic encephalopathy

    My husband has Cirrhosis, due to Hep C,age 44. He went to the E.R. and was admitted to the Hospital from Hepatic Encephalopathy. He had severe abdominal pain and was throwing up,which appeared to be blood. I frantically called the ambulance. He was lethargic and disoriented while in the ambulance. He would only respond if I said his name loudly close by him and told him "I love you, I am here". he'd open his eyes for a second and they'd roll back and up into his head. I cried, and was terrified as usual, of this next new symptom of this horrible nightmare of a disease. When the ambulance arrived at the hospital, they took blood and put a tube down is nose to his stomach to see if his Varices turned into an esophagus bleed. They found that the substance he vomited was Red Gatorade that he drank earlier in the day.(OMG). He was in bad shape and didn't realize i was there anymore as he layed in the E.R. I asked the Doctors "please help him", "what's happening?!" They said we have to wait for the blood results. 3 hours later, the blood results showed is Ammonia level was 170. I was crying and trembling nervous. They then administered IV antibiotic and gave him Lactulose. The doctors told me he had Hepatic Encephalopathy and hopefully would wake up. After 7 hours, he seemed to be waking up, but was still in and out of consciousness, and eyes still rolling back. After 5 more hours he started to realize i was there and had to go diarrhea,from the Lactulose, which got him up out of it more. After a few more hours he got sent to a room, still very ill. By the next day he woke up a bit more and asked what happened, but would fall back asleep, while i was telling him.
    Long story short, he is now home after 5 days and on Lactulose to keep the Ammonia level down. It makes him have abdominal cramps and nauseous, but he is better than he was in the Hospital. He also has Ascites,varices,swollen ankles, low platelets of 37,000 which if he bumps his arm lightly,causes bruises. Found out too late for Interferon, or Pegytron. Went to Mt.Sinai Hospital in Manhattan to try and be on a transplant list but isn't yet. He is currently taking Lasix, Zegrid, Propranolol, Klor-con, Advair,Oxygen when needed, and now Lactulose and Regalan for nausea. I was with him for 23 years, since I was 16. I am 39 and he is only 44. He is too young for this. We were supposed to grow old together. I am very emotionally drained everyday, and scared to lose him. He is my whole life. He is a great man and father, and is so sick everyday. As many of you know, this is a horrible nightmare of a disease. God Bless all of you. Thanks for taking time to read.

    Old 12-30-2006, 06:04 AM   #7
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    Re: Toxic encephalopathy

    The most important thing is to have weekly blood draws to check on that ammonia level.before my sons transplnt,we had a long standing appt at our docs office lab every wednesday at 3:00 we would go just for the ammonia check.lactulose is very very important to use every day as directed.if things stop moving thru the bowels regularly,call his doc,and get the dosage raised son had to have a few different raises in the months before his transplant.and of course,the protien,very very important to not have alot of meat.i wish you lots of luck with this,i know how horrible it is to have to watch someone you love so much have to go thru this ongoing nightmare.take care of yourself need support just as much as he does.please keep us posted,Marcia

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