A few days ago the doctor came in and said that he had received the results back from the Mayo Clinic. The results came back positive and that means Katie has anti-NMDA receptor encephalitis. This is what the doctors thought Katie had and had started treating her for. So we were headed in the right direction and just needed that confirmation which we have now. So they doctors did another pheresis treatment today and will do one on Tuesday as well. Katie has been doing a little better since she has had the pheresis treatments. This past weekend she said the words, I know, yeah and we think she also said "go home". This is all a good thing because before Katie either did not talk at all or you could not understand anything she was saying. Katie is also a little more alert to what is going on around her and to the people that are around. However, she is very confused and does not understand what is really going on. Most people who have this diagnosis do not remember everything that happens and that is probably what is happening with Katie right now. So she does not understand why she is at the hospital or how she got there. Today though she wanted to sit up and she has not tried doing that yet, so that was another improvement.
I know this diagnosis has a big name and sounds confusing, which it is but there is a book out called Brain on Fire, my Month of Madness by Susannah Cahalan who also had this. I have ordered the book but have not got to read it yet. I think it will help anyone understand what is happening to Katie better. I know that the book is cheaper to buy online than the store and there is also a website that has the book on it to read for free. I will post that site within the next few days I'm not exactly sure what it is called yet.
Anti-NMDA receptor encephalitis is an uncommon disorder and the doctor said that only around 200 people in the U.S. have been diagnosed with it. Also, it has only been given a name about five years ago so it is still very new. In addition, it will take Katie a while to recover. The doctor said she would be at Barnes for a few more weeks or even months. Later on down the road she will have to do rehab in order to learn how to do certain everyday things again. Now this disorder is nothing to get worried about, people recover and will be back to themselves once everything is all done. It just takes time which is okay with us. I will find some good links that explain what Anti-NMDA receptor encephalitis is and post them within the next few days so that everyone can gather more information about what is happening to Katie. Also if you look this disorder up online it will bring up many different sites with information.
Thank you everyone for all of the thoughts, prayers and encouragement it means the world to us and it helps us get through everything so much more easier. And thank you for all the prayers and support you are showing my sister, she is a tough person and that has really shown through all of this. Have a wonderful week!
"Be joyful always, pray continually, give thanks in all circumstances, for this is God's will for you in Christ Jesus."- 1 Thessalonians 5:16-18
