Tuesday, October 23, 2012

Medical Mystery

Almost a week after leaving the hospital, Daddy, Areli and I went to see G.I. specialist Dr. K. We had the expectations we would be given a diagnosis, treatment, etc, boy were we wrong! As Dr. K handed us a packet of paper with all of the test results he said "her file will be a lot bigger"- great. 
We went over all the blood work and different diseases and syndromes they had tested her for and she was negative for them all. Her biopsy presented as very yellow-orange, irritated, inflamed and very fatty and otherwise unremarkable. We were given a temporary diagnosis of Hepatitis Steatosis or Fatty Liver Disease. 
Fatty livers usually stem from poor eating, obesity, or alcohol abuse. (Obviously Areli didn't fall into either one of those categories). A fatty liver usually is silent and doesn't present with any symptoms, unlike Areli's case. A fatty liver can also be reversed if whatever is causing it is stopped, i.e. cutting calories or abstaining from alcohol. If the fat remains in the liver it will cause scarring and scarring will cause liver failure. So to save Areli's liver, we need to figure out what is causing it.

The pathologist and doctors had "never seen a case like hers", that she was very "strange" and "mysterious". So to be sure they weren't missing anything, her liver biopsy was sent to the top pathologists all across the country; Children's Hospital in Philadelphia and Duke (to name a couple)- at this moment it is still traveling the country to different institutions. I was very confident they would give us an answer, but each and every doctor came back with the same response. She was a Medical Mystery.

The day we were discharged from the hospital.

Thank you for reading about Areli, please share so we can get our story out to help find answers.
Love Mama Linnea

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