Category Archives: Pain in Rett syndrome

One Girl with Two Backs of Steel

Posted on August 16, 2018 by

    On July 31, I did the one thing I’ve feared for 10 years. I let my child go into surgery for kyphosis. It’s hard to describe those 10 years of thoughts-the being told surgery was inevitable, being told … Continue reading →

Posted in bone deformity in Rett syndrome, kyphosis, Pain in Rett syndrome, Radiology in Rett syndrome, Rett syndrome Awareness, scoliosis, skeleton, Trail to a Texas Trial, Trofinetide | Tagged , , , , | Leave a comment

Pain is in the Eye of the Believer

Posted on May 6, 2018 by

As I’m writing this Katelin is into her third month with a cavity that needs a root canal. Perhaps, you are saying to yourself, “My God! How could this mother let her child’s teeth go so long without seeing a … Continue reading →

Posted in bone deformity in Rett syndrome, Communication, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Syndrome, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , | 4 Comments