HealingWell
Search Close Search
☰

Hepatic Encephalopathy (H.E.)

Support Forums
>
Hepatitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/11/2011 1:28 PM (GMT 0)
Have had my daughter on Lactulose for a couple of weeks now. Does not seem much better, very very confused, what should I do now? She goes to a community care clinic and is seen by a Nurse praticaner not a Dr. Was seen by a Dr when she was admitted to the hospital (house dr) the first part of July. Is there any other medication's that might help. She is like a four year old, and she is fifty two, Should I take her bad to the ER. No insurance, no income, nothing,

Post Edited By Moderator (hep93) : 8/11/2011 12:29:37 PM (GMT-6)

Posted 8/11/2011 3:26 PM (GMT 0)
So sorry that you are going through this. Your daughter is too young to be suffering so.

How much lactulose is she taking? How often?
Posted 8/11/2011 5:17 PM (GMT 0)
You might try increasing the Lactulose, either a higher dosage or more times a day. I would recommend adding Xifaxan, but it is VERY expensive. Even those with insurance have to battle to have it paid for. If she gets worse, take her to the ER.

I know this must be very stressful for you. Is there anyone who can help with her care at home? Friends or neighbors who can be there while you go out for a bit? You have to remember to give yourself a break on a regular basis or you will burn out fast.

I took the liberty of giving your thread a title, as our Administrator likes each one to be titled.

Hugs,

Connie
Posted 8/11/2011 6:44 PM (GMT 0)
Regarding Xifaxan contact the manufacturer Salix pharmaceuticals. Many drug companies have programs to distribute their drugs to people without insurance and or on limited income at a reduced cost. Their website is Salix.com. Don't know if they have a program, but you should check.

Susie
Posted 8/11/2011 8:11 PM (GMT 0)
Salix has a patient assistance program but a physician must still write a prescription and sign the documents . Try striving for 3 lose bowel movements a day as far as lactulose is concerned , Increase the dosage until she achieves the needed 3 movements .

A. Ziffle
Posted 8/13/2011 1:09 AM (GMT 0)
You guy's are awesome.  I will see what I can find out about the medication.  I did take her to the ER yesterday and she had a UTI which might be why she is doing all the bedwetting.  But I did luck out as the House Dr also works one day a week at the Comminity care clinic where she goes  and he and he alone will be seeing her from now on and ordering all her labwork and giving her the RX'x she needs so I will talk to him about the med's you are talking about.  Her confusion is what is getting to me the most as I can not leave her alone at all.  She, and she pulls her bed apart several times a day thinking it it wet.  She does like to go to the groc story and Wal Mart with me and that is fun for us both.  We went to the movie's last Wednesday and that was good too.  If I really need to get away for a while I can get my grandaughter to come over but she has two young kids and is working two jobs as is my grandson.  One of my daughter is down here with me for a couple of days so I can at least talk sense to someone.  Thank you for being there for me and all the others that need you.
Posted 8/16/2011 11:51 AM (GMT 0)
I had to call 911 a few days ago because my husbands ammonia levels were at 180 . They put him lactulose and xifaxan and it is really helping . He was so bad he didn't know who I was and couldn't remember anything or perform a simple task. So he will take his lactulose when he gets home. Xifaxan I heard is super expensive And some insurance wont pay for it but I guess it doesn't hurt to try! Hope it gets easier with Your daughter
Posted 8/16/2011 8:48 PM (GMT 0)
Here's the link to Salix's patient assistance program where the form can be printed and filled out and sent in, along with a physician's Rx for Xifaxan:

http://www.salix.com/search-results.aspx?cx=008049857550456395118:ybeue-rmkq4&cof=FORID:11;NB:1&ie=UTF-8&q=financial%20assistance&sa=Go

Thanks to Rick for letting us know about the Xifaxan assistance available through the pharmaceutical company, Salix.

Hugs,

Connie

 

Posted 8/17/2011 12:16 AM (GMT 0)
Who's this Rick guy?
Posted 8/17/2011 2:24 AM (GMT 0)

Ah hem...excuse me...Mr. Ziffle.

Hugs,

Connie

Posted 8/17/2011 2:57 AM (GMT 0)
Tried recently to post but had problems logging in ( Not permitted to post ) have to use alternate resources .

A. Ziffle
Posted 8/17/2011 4:59 AM (GMT 0)
I've posted on this topic before.

Xifaxan saved my Mike from the depths of HE (aptly, the first two letters of __LL).

His insurance denied him, of course, as he is on Medicaid through this.  Some of the private health insurance companies deny also!

I wrote a nice letter...well, not so nice...and talked to someone there. 

They call this disease End Stage Liver Disease, because, bar transplant, this is it. The End.

That is what my letter said. With a terminal illness, I could not understand a patient would have to die without the medicines that would make his passing more tolerable.  I asked them if the insurance folks were withholding morphine from the wounded in Afghanistan when the solders were so bad they were just dying anyhow???

He got his Xifaxan in a week!

He took the  Xifaxan Jan 1 - April 30.  That's all he needed it for!  Thank goodness.

ML aka Carol

✚ New Topic ✚ Reply