Rassmussen's Syndrome

I'm so sorry for you and&nbsp;your family and I know what you are going through.&nbsp; Our family is also going through this mind numbing process.&nbsp; I've posted above, and included the post below with my daughter's story.&nbsp; There is also a&nbsp;Yahoo Group called RS_Hemispherectomy that you might want to try.&nbsp; Many of these parents had kids with Rasmussen's Encephalitis.&nbsp; If you go to that group you will find lots of support.&nbsp; The community is small, but very supportive.&nbsp; Cris&nbsp; My 6 year-old daughter was recently diagnosed with Rasmussen's Encephalitis and I wanted to share the knowledge that I have gained over the past few months with others, and this is the only way that I know how. If your child has continuous twitching, and partial seizures (even if they don't seem bad and are only short simple partial seizures), please read about Rasmussen's Encephalitis or Rasmussen's Syndrome. Although each child presents symptoms differently, Epilepsia Partialis Continua (Continuous Partial Epilepsy or Constant twitching) is a classic sign of RE.&nbsp;&nbsp; Along with Focal, Partial Seizures that may or may not go status and may or may not generalize. If you are seeing any of this, please google the disease, or you can also read what I have documented about my daughter's case at <a href="http://jessiekelley.blogspot.com/">http://jessiekelley.blogspot.com/</a>&nbsp; (jessiekelley.blogspot . com&nbsp;&nbsp;&nbsp; .. written another way in case this board doesn't allow links.) The treatment for RE is a hemispherectomy.&nbsp; She will be having hers at Johns Hopkins as soon as it can be scheduled. Best to everyone.&nbsp;&nbsp; Cris