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Almost 4 weeks ago my son received TACE for his tumor. A few days later he started to slur his speech,drool and hands shaking.
Admitted to hospital they found infection in his blood, which they started to treat right away. But no improvement.
The Drs. mentioned Hepatic Encephalopathy. His ammonia was elevated. But they said he would not be shaking that much. He shakes like a Parkinson disease. They released him and now he is home. He kept leaving the hospital and we found him outside! So they felt he do better home. His speech is slurred, drooling and shaking of hands have worsen. He cannot swallow food but can drink ensure. He cannot take care of his basic needs. Including feeding himself and his bathroom needs. We were getting the run around from his liver team saying that it was more of a neurology problem.
My son is on the transplant list which now has been put on hold. He cannot get into the 7977 study!
If only we had some answers! Is this from the TACE? We do have several Dr. appointments. He Is on Lactulose. Brain scans negative. But no EEG. Please someone help us, I am afraid and don't know what to do. I want to have as much information when we take him to the Drs. Please someone help
Admitted to hospital they found infection in his blood, which they started to treat right away. But no improvement.
The Drs. mentioned Hepatic Encephalopathy. His ammonia was elevated. But they said he would not be shaking that much. He shakes like a Parkinson disease. They released him and now he is home. He kept leaving the hospital and we found him outside! So they felt he do better home. His speech is slurred, drooling and shaking of hands have worsen. He cannot swallow food but can drink ensure. He cannot take care of his basic needs. Including feeding himself and his bathroom needs. We were getting the run around from his liver team saying that it was more of a neurology problem.
My son is on the transplant list which now has been put on hold. He cannot get into the 7977 study!
If only we had some answers! Is this from the TACE? We do have several Dr. appointments. He Is on Lactulose. Brain scans negative. But no EEG. Please someone help us, I am afraid and don't know what to do. I want to have as much information when we take him to the Drs. Please someone help
It is difficult to figure out how all of things you mention are related or even if they are related. But from what I can tell it appears that your son is experiencing hepatic encephalopathy (HE). All the symptoms you mention are symptoms of HE.
How high is his ammonia level?
He had the TACE treatment and somehow got an infection during the procedure. That is possible as they use a number of catheters during the procedure and cut the femoral artery near the groin. So he could have gotten an infection during the procedure.
"But no improvement." No improvement? I don't see how that can be the case. They were giving him IV antibiotics for his infection correct? An infection in someone with decompensated cirrhosis can be fatal so they would never let him go home. If he improved they still might give him antibiotics in pill form. Infections are common and life-threatening in patients with advanced cirrhosis.
"The Drs. mentioned Hepatic Encephalopathy." In what context? As the cause of his current issues? "But they said he would not be shaking that much. He shakes like a Parkinson disease."
Obviously I can't see you son's movements. But I have seen people shake just like Parkinson's, so much their hands flap around so they can't eat on their own.
Surgery itself can trigger hepatic encephalopathy. So can dehydration and constipation and other things.
Symptoms:
He kept leaving the hospital and we found him outside! (being confused and lost)
speech is slurred,
drooling
shaking of hands
He cannot take care of his basic needs.
All of these are signs of severe hepatic encephalopathy.
"We were getting the run around from his liver team saying that it was more of a neurology problem." Transplant centers have Neurologists. Did they have a Neurologist look at your son? What was the conclusion?
"My son is on the transplant list which now has been put on hold. He cannot get into the 7977 study! "
Do you mean he has been taken off the transplant list? Why? IS he too ill to survive surgery? It is not uncommon for patients to be taken off transplant lists.
If you are talking about the clinical trial for patients with hep C, and liver cancer awaiting transplant. ALL patients can not start the trial until 30 days after TACE. This is normal and according to the trial protocol.
If only we had some answers! Is this from the TACE?
I don't have his records so I can't say for sure. Is it possible to be from TACE, yes. From the infection, yes, from dehydration and many other things as well. In the end it doesn't matter what triggered the hepatic encephalopathy, it needs to be treated. That is what the Lactulose is for. 3-4 bowel movements a day. Don't let him have too much diarrhea or he will become dehydrated and get worse.
The main problem appears to be one of miscommunication.
* Tell the doctor of your concerns about your son and you not understanding what is happening to him.
* Ask the doctor directly yes or no is your son having encephalopathy.
* If he or she says know then ask who is going to figure it out. And when will they have a diagnosis.
* Ask the doctor how you can help to manage your son's encephalopathy.
* Ask the doctor when his ammonia will be tested again.
* Ask why your son was taken off the transplant list.
Write down all the answers to your questions.
------------------------------------------------------------------
Facts-At-A-Glance
* Hepatic encephalopathy (HE) is a brain disorder caused by liver damage
* HE can be an acute (short-term) or chronic (long-term) condition and can be mild, moderate, or severe
* HE occurs when the liver cannot remove toxic chemicals in the blood and these chemicals enter the brain
* Symptoms of HE may progress slowly, or may occur suddenly
* Common symptoms of HE include confusion, forgetfulness, personality or mood changes, poor concentration and judgment, stale or sweet odored breath, change in sleep patterns, and worsening of handwriting or small hand movements
* People with HE can enter a coma or have brain damage
* HE can be a medical emergency and hospitalization is usually required
* Treatments aim to manage the disease and keep people out of the hospital
* The best way to reduce the risk of HE is to prevent, treat, or manage liver disease
What causes an episode of hepatic encephalopathy?
HE occurs when the liver is damaged and cannot remove toxic chemicals, such as ammonia, from the blood. These chemicals then enter the brain and cause it to not function well.
What are the symptoms of hepatic encephalopathy?
HE can cause mental and physical symptoms. They can vary person to person, and may progress slowly or occur suddenly.
Symptoms may include:
Mild confusion
Forgetfulness
Personality or mood changes
Poor concentration
Poor judgment
Stale or sweet odored breath
Change in sleep patterns
Worsening of handwriting or small hand movements
Severe symptoms may include:
Unusual movements or shaking of hands or arms (also known as “flapping”)
Extreme anxiety
Seizures
Severe confusion
Sleepiness or fatigue
Severe personality changes
Jumbled and slurred speech
Slow movement
For people with chronic HE, doctors may recommend:
* Diet changes such as avoiding too much or too little protein
* Rifaximin (Xifaxan) to reduce bacteria in the intestines that make toxins the liver cannot process
* Lactulose (type of sugar) to prevent the liver from absorbing toxins from the intestine
Prevention and treatment of constipation
* Medicine to remove blood from the intestines or procedures to control active bleeding
* Medicine to treat infections
-------------------------------------------------------------------------------
Take care
Hector
How high is his ammonia level?
He had the TACE treatment and somehow got an infection during the procedure. That is possible as they use a number of catheters during the procedure and cut the femoral artery near the groin. So he could have gotten an infection during the procedure.
"But no improvement." No improvement? I don't see how that can be the case. They were giving him IV antibiotics for his infection correct? An infection in someone with decompensated cirrhosis can be fatal so they would never let him go home. If he improved they still might give him antibiotics in pill form. Infections are common and life-threatening in patients with advanced cirrhosis.
"The Drs. mentioned Hepatic Encephalopathy." In what context? As the cause of his current issues? "But they said he would not be shaking that much. He shakes like a Parkinson disease."
Obviously I can't see you son's movements. But I have seen people shake just like Parkinson's, so much their hands flap around so they can't eat on their own.
Surgery itself can trigger hepatic encephalopathy. So can dehydration and constipation and other things.
Symptoms:
He kept leaving the hospital and we found him outside! (being confused and lost)
speech is slurred,
drooling
shaking of hands
He cannot take care of his basic needs.
All of these are signs of severe hepatic encephalopathy.
"We were getting the run around from his liver team saying that it was more of a neurology problem." Transplant centers have Neurologists. Did they have a Neurologist look at your son? What was the conclusion?
"My son is on the transplant list which now has been put on hold. He cannot get into the 7977 study! "
Do you mean he has been taken off the transplant list? Why? IS he too ill to survive surgery? It is not uncommon for patients to be taken off transplant lists.
If you are talking about the clinical trial for patients with hep C, and liver cancer awaiting transplant. ALL patients can not start the trial until 30 days after TACE. This is normal and according to the trial protocol.
If only we had some answers! Is this from the TACE?
I don't have his records so I can't say for sure. Is it possible to be from TACE, yes. From the infection, yes, from dehydration and many other things as well. In the end it doesn't matter what triggered the hepatic encephalopathy, it needs to be treated. That is what the Lactulose is for. 3-4 bowel movements a day. Don't let him have too much diarrhea or he will become dehydrated and get worse.
The main problem appears to be one of miscommunication.
* Tell the doctor of your concerns about your son and you not understanding what is happening to him.
* Ask the doctor directly yes or no is your son having encephalopathy.
* If he or she says know then ask who is going to figure it out. And when will they have a diagnosis.
* Ask the doctor how you can help to manage your son's encephalopathy.
* Ask the doctor when his ammonia will be tested again.
* Ask why your son was taken off the transplant list.
Write down all the answers to your questions.
------------------------------------------------------------------
Facts-At-A-Glance
* Hepatic encephalopathy (HE) is a brain disorder caused by liver damage
* HE can be an acute (short-term) or chronic (long-term) condition and can be mild, moderate, or severe
* HE occurs when the liver cannot remove toxic chemicals in the blood and these chemicals enter the brain
* Symptoms of HE may progress slowly, or may occur suddenly
* Common symptoms of HE include confusion, forgetfulness, personality or mood changes, poor concentration and judgment, stale or sweet odored breath, change in sleep patterns, and worsening of handwriting or small hand movements
* People with HE can enter a coma or have brain damage
* HE can be a medical emergency and hospitalization is usually required
* Treatments aim to manage the disease and keep people out of the hospital
* The best way to reduce the risk of HE is to prevent, treat, or manage liver disease
What causes an episode of hepatic encephalopathy?
HE occurs when the liver is damaged and cannot remove toxic chemicals, such as ammonia, from the blood. These chemicals then enter the brain and cause it to not function well.
What are the symptoms of hepatic encephalopathy?
HE can cause mental and physical symptoms. They can vary person to person, and may progress slowly or occur suddenly.
Symptoms may include:
Mild confusion
Forgetfulness
Personality or mood changes
Poor concentration
Poor judgment
Stale or sweet odored breath
Change in sleep patterns
Worsening of handwriting or small hand movements
Severe symptoms may include:
Unusual movements or shaking of hands or arms (also known as “flapping”)
Extreme anxiety
Seizures
Severe confusion
Sleepiness or fatigue
Severe personality changes
Jumbled and slurred speech
Slow movement
For people with chronic HE, doctors may recommend:
* Diet changes such as avoiding too much or too little protein
* Rifaximin (Xifaxan) to reduce bacteria in the intestines that make toxins the liver cannot process
* Lactulose (type of sugar) to prevent the liver from absorbing toxins from the intestine
Prevention and treatment of constipation
* Medicine to remove blood from the intestines or procedures to control active bleeding
* Medicine to treat infections
-------------------------------------------------------------------------------
Take care
Hector
Want to say I'm sorry as well. I'm really not knowledgeable in that area and I hope the doctors realize the gravity of your son's situation and he receives the help he needs quickly.
Really sorry that all of you are going thru this, you might have more respons by posting in this forum......... Only the best.
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390
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