Thank you again for all of your input and support. It sounds like you have all had a similar experience to my daughter. There is definitely enough pain and enough support to go around on this board.

There are a couple more things that I want to ask about.

First, about 2 years ago, my daughter had a fever of unknown origin for about 2 weeks. The fever was followed by abdominal pain which turned out to be biliary dyskinesia (gallbladder disease in the absence of gall stones.) She had surgery to remove her gallbladder, and she felt fine. I was wondering if this could be related at all. There was a period of almost two years that she had no unusual symptoms between then and now.

Also, I have been trying to figure out what things I should look for and document in order to help the doctors diagnose her. I was going to use an infrared thermometer to check for temperature differences between limbs. I have been watching her skin for unusual discolorations, and I have been watching for swelling. I often take pictures of swelling or color changes in her skin. Is there anything else that I should look at and document besides these things and of course the changes in the pain?

One last thing, her liver enzymes were up when they did her blood work. Does that tell anyone anything? I have not seen anything online or in this forum, but I thought maybe someone had a similar experience.



Tracy