Discussions By Condition: I cannot get a diagnosis.

Help for my daughter.

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: Anonymous
  • January 6, 2009
  • 05:59 PM

I do not want to make this very long. I will keep it as short as possible and still give you all the information you will need to give me your opinons.

My daughter is 14 years old. In May of 2008 she was having abdominal pain. They did some tests and finally discovered that her gall bladder was only working at 8%. The doctors said it would be best if we removed the gall bladder, so we had it removed.
June 9th, 2008 the gall bladder was removed laporoscopically and we thought things would get better. Over the next few weeks and numerous trips to the hospital where the doctors kept saying that she was "blocked up" or constipated, we finally found out that the surgeon cut her bile duct and she was leaking bile into her abdominal cavity. This is 3 weeks after her surgery. They transferred her from a Children's hospital to a teaching hospital because the procedure they needed to do could not be done on a child and she is big enough physically to have an adult procedure done. They decided to do an ERCP Stent placement, and told us her body would absorb the bile, which of course it didn't.
July 5th we are back at the hospital and they said her body did not absorb the bile and they proceeded to place a catheter in her abdominal cavity to drain the bile out. They told us the bile had formed a wall around itself and had not hurt any of her other organs. They removed 2 LITERS of bile :eek:from my poor daughters abdominal cavity and sent us home within a week and said she would be fine.
Low and behold, we were back within another week with pain, fever and vomitting and found out she had VRE. :mad:This is from the hospital, and at this point I am beyond grief. I do not know what to do anymore. They placed another catheter in her abdominal cavity to remove the fluid that the VRE had built up.
We were home within a week and 2 weeks later we went in to have the stent removed. The doctor said there was no more leakage and we were free and clear for good.
2 weeks after that, she started vomitting, horrible abdominal pains, and could not hold down anything.:eek: We went back to the initial surgeon thinking that maybe her bile duct had ruptured. He told us he didn't know what it was and maybe she was just looking for attention. When I told him I was going to see another doctor he practically begged me not to do it. :mad:
I have seen another doctor, they have diagnosed her with a severely ulcered stomach. She went on a bland, no fat diet, and was doing well until the last 3 weeks where she is back to vomitting, and severe abdominal pain.
The family physician decided to do blood test, urine test and a stool sample test.
So far, the results that have come in show that her AST (i think I this is the correct one) is a little high. They said it should be lower than 45 and hers is 52. They also found blood in her stool. We are currently doing more blood work.
So, my question is, is there ANYONE out there that would have any idea what any of these things can be from? Is this from the initial bile duct leakage?
Any and all replies will be greatly appreciated.
Thanks so much to you all!!!!
Mom of 4 beautiful kids

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9 Replies:

  • OMG!!I am so sorry you and your family are going through this. I hope someone can direct you to some help. I am new on here and not sure what I am aloud to say. So I am cautious.I have biliary issues and my doctor was very careful not to do an ERCP on me as it can create a pancreatic attack which causes vomitting and other weight loss effects and under my circumstances that would not be good.The original bile duct mistake sounds bad. Do you have any informational options? I would be looking for the best gastro specialist in your area. I wish you and your daughter the best.
    stillhere 14 Replies
    • January 7, 2009
    • 08:11 AM
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  • the blood in the stool is likely from her ulcerated stomach and is not to be worried about unless she has black,tarry stools,indicating a significant bleed.As far as the rest of her problems,she's had a run of really bad luck,and I'm sorry for that.
    richard wayne2b 1232 Replies
    • January 7, 2009
    • 01:48 PM
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  • Oh, the AST is only slightly elevated and likely means nothing.It could represent slight blockage in her bile drainage though.Therefore,it needs to be followed.
    richard wayne2b 1232 Replies
    • January 7, 2009
    • 01:52 PM
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  • What is she doing on a bland diet?There's no such thing as an ''ulcer diet.''She should be on a proton pump inhibitor like Protonix and antacids.
    richard wayne2b 1232 Replies
    • January 7, 2009
    • 01:57 PM
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  • The doctor put her on a bland diet and she is on Nexium for her ulcered stomach. He said she would need this bland diet to help her get well. We live in south Louisiana, and I am guessing the reason for the bland diet is because we eat many fried and very seasoned foods.:confused:
    Anonymous 42789 Replies
    • January 7, 2009
    • 02:02 PM
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  • I meant Prevacid,not Protonix,although it should work,too.
    richard wayne2b 1232 Replies
    • January 7, 2009
    • 02:03 PM
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  • If your daughter does not have an H. pylori infection or Zollinger-Ellison syndrome ask about celiac disease. Ulceration and reduced gallbladder function are associated with it.
    aquila 1263 Replies
    • January 7, 2009
    • 05:50 PM
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  • Thank you for those names. I am looking them up and will talk to the doctors about these. This is so very helpful!:)
    Anonymous 42789 Replies
    • January 7, 2009
    • 07:02 PM
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  • I meant Prevacid,not Protonix,although it should work,too. She is on Nexium. I would hope that would be helping her. It really isn't having that much of an effect.:(
    Anonymous 42789 Replies
    • January 7, 2009
    • 08:54 PM
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