Hello Ashely, Gaye and Steve!
Welcome to the forum! I've started up a new "thread" for you. Didn't want you to get overlooked and lost in another thread topic. I've pasted your posting below for others to read and respond to.
I don't have any experience with Lupus cerebritis, but others do. I'm so glad to hear that Ashely is going to have those tubes removed and start eating. You all have had a very stressful Christmas. Is there any idea when she'll be going home? Please ask any questions you need to. We're here to support and encourage and advise as much as we can.
I also just joined today as we search for all the info we can on Lupis Cerebritis! Our daughter, Ashely, is currently at UCLA Medical center after being transfered from our hospital near Paso Robles, CA. On Christmas Eve, she was admitted with another Lupis flairup which quickly developed into a crisis with seizures etc. She was stabalized and transfered to UCLA where they removed the breathing and feeding tubes. We are thrilled that she is speaking and breathing well, but she is just flat worn out from this crisis. We are hoping to get her "eating" food tomorow.
The seizure meds and steroids have been increased and now we are prepared for the chemotheropy, which should follow tomorrow. We had a couple of LPs, MRIs, and a week of blood work in preparation, so we are comfortable with the dianostics. We are a bit concerned with the diaria and general condition as she heads into the chemo.
We are looking for any and all information we can about this form of Lupus, the treatment, and the side effects to watch for.
Thanks and good luck to all of you, too.
Steve, Gaye, and Ashely.