Hepatic Encephalopathy

[CHanse]

Does anyone know how long it would take to get a Hepatic encephalopathy diagnosis? My pal was hospitalised in August last year, deemed not to have capacity and put on a DOL’s. After 6 weeks he was moved into a care home with suspected Wernike Korsakoff. Neither diagnosis has been confirmed and it’s now been almost 8 months. From what I’ve read he is displaying more symptoms of HE than WKS.

The last time he was seen by his herpetologist two weeks ago he was very rational so no diagnosis was given then but since then he has declined rapidly. Because he has been moved out of the original care home to one which deals in addictions and challenging behaviour they don’t know what he is like and what behaviour is normal for him so when I have been speaking to the care workers they don’t seem to listen or take on board that his behaviour isn’t normal for him. They even said that they were considering him to go into independent living. His symptoms come on so suddenly and can last for months.

Sorry for the long post and thank you for reading.

[cammeag]

H.E. can come and go, but also kill. It needs to be treated. It is also nigh on impossible to meet a care worker outwith substance abuse departments who will recognise it. Your friend needs someone with power of attorney to contact his hospital consultant and see what his care plan going forward is. The nurses on here may also help you. I haven’t come across WKS but the effects are similar it seems to H.E. Independent living is impossible if H.E. is the cause until he has a supported care plan. Sorry I cannot be more helpful, you did not mention his symptoms and without knowing them it’s difficult to help more.

[CHanse in reply to cammeag]

Thank you for your reply. It’s battling with everyone and trying to get the right treatment for him.

[Porcupine_Tree]

I would speak to his GP/ Consultant. Confirm with hand flap test , ask Consultant whether he would benefit from taking Lactulose or Rifaximin.HE is normally associated with decomponsated liver cirrhosis. Where the liver struggles to deal with the toxins coming from intestinal blood. Toxins then reach the brain where symptoms often start. Lactulose and Rifaximin are often successful in treating this.

Rather than GP I would make an appointment with your Heptologist ( referred by GP) who will explain it far better than me and suggest options.

Hope this helps

[CHanse in reply to Porcupine_Tree]

He is on both Rifaxamine and lactolose and only recently seen his heptologist but wasn’t in an episode. Thanks for the information

[Hidden in reply to Porcupine_Tree]

I have HE and some of them are severe and have to be admitted, in the last year I was in hospital so many times ,my family all now know the signs thankfully they know what to do if my lactulose and rifaximin isn't working they phone 999 and I've been admitted every time, hallucinations, personality changes,aggressive and sleeping to long

[CHanse in reply to Hidden]

Thank you, my pals episodes seem to last a long time and the aggression is terrible but the care home he is in just don’t recognise any of the signs

[CHanse]

Wow, thank you for that information Richard. That is really appreciated. I’m going to have to read it a few times to digest it but thank you again

[Richard-Allen in reply to CHanse]

Sorry, due to an objectiong from the BLT, I have deleted the post. I am sorry for this.

[BritishLiverTrust1 Partner British Liver Trust in reply to Richard-Allen]

We edited the post to remove external links, which go against our community rules and guidelines, but were happy for the post to remain up without them.

[Richard-Allen in reply to BritishLiverTrust1]

I have always posted up other supportive links to support my comments to help others understand more clearly. Can I take it then that links to NHS sites and the BLT are the only accepted links in futrure? This is such a shame.

[CHanse in reply to Richard-Allen]

That’s such a shame That you deleted the information Richard. I was going to share it with his daughter as she is struggling with his behaviour too.

[BritishLiverTrust1 Partner British Liver Trust in reply to Richard-Allen]

This is from our rules, and these haven't changed: Generally, our policy is not to allow people to refer, promote or direct people to websites other than our own. The exception is Government sites; NHS sites such as NHS Choices or other trusted registered charity sites that we know have met information standards and are accredited. Links to useful time specific news items or research may be permitted subject to moderator discretion. We have no objection to you re-sharing your post without the external links.

[Positive001 in reply to Richard-Allen]

Hi Richard. Yes these rules are in the listed conditions of forum use, but l guess you could pass info regarding HE to Chanse privately ?

[Richard-Allen in reply to Positive001]

Have done just that many thanks.

[Lantana100 in reply to Richard-Allen]

Can you re-post your comment without the links please Richard?

[BurnsK]

My Dad has both HE and WKS.Rifaxamin and Lactulose has been used to treat the HE but some of his symptoms persisted until he was prescribed thiamine, folic acid and vitamin B. These then improved his WKS related symptoms further. He never had anything like a scan as such to diagnose these specific ailments but was prescribed the meds on the basis of the condition of his liver. Hope that helps. It is very hard seeing those you love so changed by these conditions. Good luck.

[CHanse in reply to BurnsK]

Thank you, yes my freind has been on all of the medications you mention for quite some time due to his decompasated liver but I was wondering how long it took to get an actual diagnosis

[Positive001 in reply to CHanse]

I think you need to put the question to those treating him like this ...." Since you are treating him with laculose and refaxamin, would l be correct in believing he has or had hepatic encephalopathy? "

[CHanse in reply to Positive001]

That is a great way of putting it. Thank you

[Positive001 in reply to CHanse]

Good luck

[CHanse in reply to Positive001]

😆

[BurnsK]

Ah I see. The fact the medication worked for my Dad I think was seen as confirmation that he had those specific ailments as they go hand in hand with cirrhosis. No further explorations were made. But I have no idea if this is standard practice, sorry.

[CHanse]

Thank you. It’s such a struggle for a professional to say what is going on. I suppose it didn’t help that he was perfectly lucid a couple weeks ago when he had his heptologist appointment but now he has gone downhill again. It’s even more of a struggle as he is also bipolar and not on any medication for that!!

[hun64_D0chIk]

Hi CHanse, my Liver Consultant arranged for me to have an EEG which was quick and painless. It was just a matter of sticking some electrodes on your head and temples then the Nurse went behind a door and took images I suppose. The Consultant said the results came back negative for HE. It is worth getting that arranged for the HE diagnosis either by himself (when he’s feeling at his most lucid) or getting his daughter to do it. He’s on Lactulose and Rifaximin which is the best medication for HE.

Good luck and keep us updated on your friends progress

[CHanse in reply to hun64_D0chIk]

Thank you so much for that info and yes I will try to arrange a scan. See where we go from there. Hopefully some form of diagnosis will happen and I’ll keep you all informed.