I am carrying a heavier hurt tonight – and my heart is hurting. Ryleigh’s doctor agrees that the new medicine is probably not working. That Ryleigh is still struggling and that the other medicine that has just been approved she may not be able to use as she is allergic to latex.
He is also convinced that Ryleigh may be struggling with Complex Regional Pain Syndrome. Yes, that is what Chloe struggles with as well. He believes it is another complex layer on top of her Crohn’s disease. Ryleigh is frustrated with her body, her situation, and the struggle to manage. She is still trying to not give up – another challenge for her to figure out. I cannot really say much more except we are processing the news, not giving up, and trying to figure out what to do next. Here is the explanation (I believe I posted it before) of what this syndrome is.