Category Archives: Pain in Rett syndrome

Rett syndrome Awareness #14: Suffering in Silence

Posted on October 14, 2018 by

Yesterday, my awareness was personal, Katie was not feeling well and wanted to “go bed” in the middle of the day. Crying and crying “go bed” “moooommmyyy, go bed” so that’s what we did, we snuggled on the couch until … Continue reading →

Posted in anxiety in Rett syndrome, Communication, cure, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Research, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, Trail to a Texas Trial, Trofinetide, Uncategorized | Leave a comment

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