Discussions By Condition: I cannot get a diagnosis.

Enlarged liver and spleen

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: Anonymous
  • January 15, 2007
  • 11:09 PM

Please help me! My twelve year old daughter was referred to liver centre with hepatosplenomegaly over a year and half ago. Ultrasound showed multiple refelective foci adjacent to portal vein branches. Lipid profile was HDL 0.7 mmol/L and LDL 7.5 mmol/L. Total protein 87 g/l, AST 110 IU/l.
Liver biopsy showed features of storage disordre with cirrhotic transformation. Fibrosis expanding portal tracts. Inflammation with necrotic hapatocytes. Kuppfer cells prominent with loose optically clear granular material, also seen withing similar cells in the portal tracts. Bone marrow aspirate was normal as was muscle bopsy. Skin biopsy results still pending after four months! Testing for Wolmams/CESD and Niemann Pick C, however consultant thinks will come back negative.. To top it off they have now found she has a heart murmur. She is pale and tired all the time but no-one seems that worried about it... except for me. Any ideas as we have a long wait until the next appointment!

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7 Replies:

  • ;) Hello There; i probably shoudn't get involved, # 1 because this language is to difficult to understand, but! # 2 I have suffered serious liver damage myself! This whole thing might be as easy as an herbal remedy. It's the one i use for the treatment of my condition; called turmeric, ever hear of it? If you have, then there is nothing further i can suggest @ this time. If not & your interested, post back, i'll fill you in. Thank's, As Always, In His Service.:)
    hogndog 426 Replies
    • January 15, 2007
    • 11:37 PM
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  • I am open to any ideas! please go on...............!
    Anonymous 42789 Replies
    • January 15, 2007
    • 11:48 PM
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  • :) Hi Again; Wow, that was fast! This method is really quite easy, something us laymen are yearning for. Start by going to a local supply store & purchasing about 3oz. of turmeric, next pick up a natural juice of your choice, i preffer grapefruit. Now use about 1/4 tsp & mix. This will if taken every day, wash out the impurities that have accumulated in your system. Do this & after 1 mo. you should see noticible results, i know i have. Anything further, just let me know; As Always, In His Service. P.S. you might want to adjust the amount taken, it may be a tad bit more or a tad bit less. O.K.?
    hogndog 426 Replies
    • January 16, 2007
    • 00:18 AM
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  • Your daughter is in serious trouble, if the cause of her enlarged liver and spleen remains undiagnosed. Did your doctors tested her for Gauscher's or Wilson's disease. Gauscher's disease is a storage disease which may cause liver and spleen enlargement, and Wilson's disease is a disorder of copper metabolism which results in liver and spleen enlargement. Both those diseases may be effectively treated, but are lethal if diagnosis is missed.richard96@hushmail.com
    Anonymous 42789 Replies
    • January 19, 2007
    • 10:01 AM
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  • Hi thanks for your reply. Yes my daughter has been tested for both Gauchers and Wilsons. Wilsons came back negative and although enzyme levels found were similar to Gauchers apparantly they were not high enough to be Gauchers. But can you believe it, after all this time I finally got a call (after hounding the consultants secretary every day!). Skin biospy shows that my daughter has something called Cholesterol Ester Storage Disease which is a disease allelic to Wolmans Disease. Apparently very rare and although no cure, a low cholesterol diet and medication is going to be tried. Apparently there is one other child in the UK (where we live) that has this disease and is slowly responding to this treatment. Gene therapy tests are being conducted at the moment on mice so a long way off for this type of treatment but am hoping that something may be found over the next few years. I have been glued to the internet trying tofind out as much as possible aout this disease and there is a small amount of info.., clinical trials are being held in the US but not sure if we can get on the programme, always worth a try! Anyway, thank you for taking the time to post your comments, very much appreciated. x
    Anonymous 42789 Replies
    • January 22, 2007
    • 10:08 AM
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  • Sorry Hogndog, I didnt post a reply thanking you too! Although I might leave your idea for my daughter I am going to give it a go on myself! No harm in flushing some toxins out! Looked into your idea and found that chinese herbalists recommend the same thing themselves so here goes. Thanks again for your reply, its good to know that there are some people out there who do good things for others! x
    Anonymous 42789 Replies
    • January 22, 2007
    • 10:14 AM
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  • :) Thank You for saying that, it just made my day.
    hogndog 426 Replies
    • January 22, 2007
    • 00:51 PM
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