Cystic Fibrosis Support Group

Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.

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Liver enzyme elevation???

deleted_user
deleted_user
My daughter is 22 months and she has had elevated Liver enzymes for the past year, and the doctor is going to put her on 150 mg (2.5 ml or cc) twice daily of Ursodiol. Has anyone been on this or have experience with this. The doctor told us it was in so many words sludging, of the gall bladder system. Does this go away or is this something to be worried about? The doctor said it would help manage the extra stuff and her liver enzyme will go back to normal. I was wondering if anyone is experiencing this? I know that everyones case is different, (I get told this with every question I ask at the doctors office) But is what they say is true or are they just thinking the best.

Thanks for helping!
deleted_user
deleted_user
hmmm, I've never heard of it(as far as my family goes) have you tried looking it up at CFF.org or cysticfibrosis.com? They have some pretty good resources that may be able to help you, I'll look aroiund in my med books and see if I can find you something about it.
~hugsnkisses
deleted_user
deleted_user
Didn't find much in my book, but I found a forum discussing Ursidiol and CF.
http://forums.cysticfibrosis.com/messageview.cfm?catid=6&threadid=21655&enterthread=y&STARTPAGE=1

Just copy and paste it into your search engine.
~hugsnkisses
deleted_user
deleted_user
Thank you for you time and concern. I went to the site and it was great information, did not know it was there. I am making an appointment with the GI dr. for Mady this week so I can get more information about her.
I hate not having control over her health!
Thanks again.
deleted_user
deleted_user
she is pretty young, but most people with cf will have trouble with their gall bladder. I had an elevated liver for nine years befor they removed my gall bladder. It was no big deal it is just a storeage bag for extra bial.
deleted_user
deleted_user
I do not have much experience with the liver yet, my son's GGT just came back high and we are going tomorrow for an ultrasound of his liver, he is 10 but was only diagnosed 4 years ago, can you tell me what you know about the labs and stuff, maybe we can put our heads together and try to understand, besides praying everyday that is about all we know to do I guess.
deleted_user
deleted_user
Mady has an appointment with the GI dr. on the 19 of june and I will find out more. The only labs they have ever done have been her blood and I am going to pay more attention to her levels the link NoelA give me was a great help to understand the levels, and what to pay attention to. I really want them to do a ultrasound so I can see what is going on in there.

Hope you found out more with your son!
deleted_user
deleted_user
i think iv been on it before i used to take it .. it was liquid and i took about 5mg/nite my levels went up and i never ad to take it again.. that was about 6 years ago
deleted_user
deleted_user
I have had elevated liver enzymes for at least 15 years and I have been on ursodial for about the last 2 years to help with the sludging. I do not think that it is something that ever really goes away, but the ursodial can definitely help. I know that they are afraid of gallstones which can be extremely painful. I do know this is not something all CFers have, cause my doctors were confused about it for awhile, but once I switched to my CF doctor he said that it can be common. Unfortunately there are a lot of extra things that CF causes along with the side effects of all the medication, but my advice is just make an educated decision and weigh your choices of what will be better in the longrun.
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