Hi Everyone! I am here for my son who is 32yrs old and was diagnosed with Cirrhosis at the age of 18 from a blood disorder.He is at ESLD.His blackout episodes has landed him in prison(I think).He gets in a rage when he has the episodes,thats when his ammonia levels are elevated.Is this normal? He was started on the lactulose in Aug.He tells me his memory is a lot better,but he still has the blackouts every now and then.My hands are tied here,its tearing me up that I cant be by his side through this.He is in Indiana and Im in Florida.He is to have the banding done soon as he had this done back when he was diagnosed 4x.I noticed his gums bleeding when I went to visit him.It is hard to communicate with the doctor at the prison,its almost impossible.I just want to get your thought on this issue.He has denied all these years of his problems and hasn't seen any doctors all these years.please give me your opinion on what I can do.He doesn't get released till Dec.2014.
I am so sorry that you and your son are going through this. Hopefully the lactulose will continue to help. Can he get that in prison? I'd recommend that he eat right and exercise and make sure he has at least 3 soft bowel movements a day, but I know those things that we take for granted can be difficult to do in prison. Thank God he's not going to be in there for long. I'm glad to hear that he is getting some form of treatment in there, that's better than no treatment at all. I'm sorry that you can't reach the doctor to ask him questions. Maybe you can learn about the different things and let your son know and he can take the letter in with him when he see's the doctor? That's the best I know to do. Does he have a counselor? My nephew is in prison and I know that he has a counselor, sometimes not easy to get ahold of them either, but if he has one (he should) you can also try to reach out to him/her. I will keep you both in my prayers. That is a very hard situation.
you know sometimes I think it was God's Will for him.So he would get the medical help he needs for his liver, because he sure wasn't taking care of himself.He is getting the Lactulose and BP meds.I have tried to get him to go see a doctor forever but he said his liver was fine.
I don't know if this link has all the information you need but it does have a list of other resources.
More than a year in prison for someone with decompensated cirrhosis is not a healthy place to be. If he was imprisoned for behavior that was caused by the HE he suffers from, he needs a new lawyer. He needs to be treated, not incarcerated.
Results: Venous ammonia levels were elevated in five (71%) of the seven patients. Elevated serum or cerebrospinal fluid (CSF) glutamine levels were found in four (80%) of five cases tested, including two who had normal ammonia levels. Initial behavioral signs included violent outbursts in three patients, paranoid ideation severe enough to require restraint in two cases, and milder abnormalities in two instances. The severity of encephalopathy was not related to any particular serum VPA level. In four patients serum VPA levels did not exceed 100 μg/ml, and in one case, VHE developed after taking only one 250-mg dose. Symptoms eventually cleared after reducing the dose of, or discontinuing, VPA. Liver-function tests were normal. Each of six patients tested had EEG findings that supported the diagnosis of VHE and excluded nonconvulsive status epilepticus. The rate of normalization of one patient's serum glutamine level and the EEGs of two cases correlated better with the timing of their delayed clinical recovery than did the more rapid rate of decline of the serum ammonia levels.
If you cannot enlist the help of an advocacy group or a lawyer, then I would just make sure the prison and medical establishment know that you are following and monitoring him and the care provided to him. I am glad he is getting lactulose and that they are banding him, it seems like he is getting better care than most prisoners, but do keep trying to connect with the doc, it will be so much easier on everyone if they allow you in the loop.
I wish strength, peace and healing to you and to your son.
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