- CASE FILE
Cognitive Impairment,severe nausea resulting in G tube, CRPS, no longer speaking, exhaustion, tests come back normal, only writes “The bee”
ABOUT THIS CASE FILE
Our daughter at 13 years old broke a cuboid bone leading to a diagnosis of complex regional pain syndrome, after years of physical therapy it was decided that the complex regional pain syndrome was therapy resistant (rare), then diagnosed with Ehlers Danilo’s Syndrome, after seven surgeries, high dose Ketamine infusions, and multiple medications nothing has taken the pain away. Two years in, severe unexplained nausea set in with no explanation leading to a G tube for survival. After that extreme confusion, memory problems, speech problems, then total loss of speech, and she can only write “the bee”. She knows what she wants to say or write but it won’t come out. Has been at home for three years. She has lost all of her friends, confidence and self worth. She is 16 years old and the doctors say this is “uncharted territory or she is too complicated” or say conversion disorder (which we think is not correct). Anyone with these problems would go “crazy”. Before the medical problems our daughter was a gifted, active, healthy seven grader. Now she is almost an invalid. We have tried pain injections, spinal cord stimulators (two different), high dose Ketamine infusions, and numerous medications. During these past three years her pain level 24 hours a day, 7 days a week is an 8 out of 10. Complex Regional Pain Syndrome is considered the most painful disease known to man, rating higher than unmedicated childbirth, or amputation without anesthesia. Can you imagine living in this hell, especially as a teenager? Please help us get our daughters life back, she can not live with this pain. There has never been nausea control, pain control, or any sign of these symptoms disappearing. She is done with life and we can’t take the suffering. The trauma our entire family, most especially our daughter, have endured is massive. The pain of this life is consuming us all. Over the last three years our daughter has missed holidays, parties, school, dances, every aspect of living, and when she attempts to go out or do something it results in complete exhaustion where she can not even get out of bed for a week. Our term is “the vortex of hell”. Just when you think you have been sucked to the bottom, you are sucked down more. This life is like someone picking up your house and flipping it upside down, shaking it and then setting it back in it’s spot. Then being told to live in it but you can not put anything back. You must live in the chaos.