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Category Archives: Pain in Rett syndrome
When the Parent is a Punching Bag
All children act out towards parents, at some time in life, each of your children will most likely say they are unhappy with you. It’s cute when they’re four or five and they call you a “big stupid poop head.” … Continue reading
Posted in Acadia, anxiety in Rett syndrome, Communication, cure, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, Talking, Trail to a Texas Trial, Trofinetide, Uncategorized
Tagged emotional triggers, fear triggers, frustration in rett syndrome, headbanging, nonverbal communication, Rett syndrome, self injurious behaviors, Trofinetide
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Rett syndrome Awareness #14: Suffering in Silence
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
One Girl with Two Backs of Steel
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 bone deformity in Rett syndrome, complications of spinal surgery in Rett syndrome, kyphosis, Rady Children's Hospital, spinal surgery
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Pain is in the Eye of the Believer
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 dental, emergencies in rett syndrome, gallbladder, gallstones, ignorance of medical community, Pain in Rett syndrome, screaming, Trofinetide
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