Category Archives: Medications

Epilepsy Mumbojumbo: Refractory or Intractable Epilepsy

I’m so absolutely wiped today so this post won’t be full of the witty smartassy brilliance I know you love (eye roll) I’m just popping by to share some new words I learned today (tadaa!) Grace had her neurology appointment today and the Dr said something to the effect of: “…Grace’s intractable epilepsy…” “Her…what?” So...

Gene therapy for Rett syndrome?

by Elizabeth Halford, with contributions from Steve Kaminsky, Ph.D., Janice Ascano, Ph.D., Paige Nues, Monica Coenraads and Kori Coates. As of late, there’s been much buzz about gene therapy as a potential treatment  for Rett syndrome. And for good reason! Gene therapy isn’t new. In fact, it’s been used to treat a number of disorders, among them: retinal disease, acute...

Syringes & Shoes

Steven went to his first solo Grace appointment. This one was a bit silly because she was prescribed shoes even though she’s never even acknowledged that she owns feet. So she got fitted for these custom-made pink leather boots which probably cost £200. She’ll wear them in her standing frame. Today, we picked up yet...


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