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
Sunday, November 25, 2012
Saturday, November 24, 2012
Katie's Address
If anyone would like to send Katie something (a letter, card etc...) the address is:
Katie Highfill rm 10580
One Barnes Jewish Hospital Plaza
St. Louis, Mo 63110
Katie Highfill rm 10580
One Barnes Jewish Hospital Plaza
St. Louis, Mo 63110
Wednesday, November 21, 2012
The latest...
Katie has been about the same for the last few days. She has been running a fever and her heart rate has been kind of high lately; however, that is most likely a symptom of what she has. They still went ahead and moved her down a floor so that they can keep a better eye on her. She is in the PCU (progressive care unit) for neurology and neuroscience, which is for the patients who do not need to be in the ICU, but still need to be looked at and monitored more often. She has also been having episodes that look like seizures, but they are not which is a good thing. The doctors there have her protected though to where she cannot hurt herself while these episodes are happening and they have a camera on her 24/7, so Katie is always being watched.
Right now they are thinking that Katie has a disorder called Anti-NMDA receptor antibody and I know I didn't mention it earlier but I thought I would. They have not received the results back from the Mayo Clinic to confirm it yet, but still wanted to start on the treatment. So we are still not a 100% sure that this is what she has. The Anti-NMDA receptor antibody is mainly a disorder where the anti-bodies in her body are acting inappropriately and attacking her brain. This disorder is very new and has only been around and had a name for about five years. If you look up the disorder online it may be helpful to understand because it is confusing. As of now the treatment they are doing is called pheresis which is where they take out some of her blood at a time and spin it. When they spin the blood it separates the blood from the plasma and they get rid of the plasma because they believe that is where the bad anti-bodies are. This procedure will have to be done several times and it will take a while before we will see any difference in Katie.
On a different note, I hope that everyone has a great Thanksgiving!!! Also, do not forget to tell your family and friends how much you love and care for them because you never know when they may not be there anymore. Have a wonderful holiday and thank you again for all the support and prayers!
Everything happens for a reason!
Right now they are thinking that Katie has a disorder called Anti-NMDA receptor antibody and I know I didn't mention it earlier but I thought I would. They have not received the results back from the Mayo Clinic to confirm it yet, but still wanted to start on the treatment. So we are still not a 100% sure that this is what she has. The Anti-NMDA receptor antibody is mainly a disorder where the anti-bodies in her body are acting inappropriately and attacking her brain. This disorder is very new and has only been around and had a name for about five years. If you look up the disorder online it may be helpful to understand because it is confusing. As of now the treatment they are doing is called pheresis which is where they take out some of her blood at a time and spin it. When they spin the blood it separates the blood from the plasma and they get rid of the plasma because they believe that is where the bad anti-bodies are. This procedure will have to be done several times and it will take a while before we will see any difference in Katie.
On a different note, I hope that everyone has a great Thanksgiving!!! Also, do not forget to tell your family and friends how much you love and care for them because you never know when they may not be there anymore. Have a wonderful holiday and thank you again for all the support and prayers!
Everything happens for a reason!
Sunday, November 18, 2012
A Positive Note
Today I saw Katie and she is in about the same state as she has been for the past few days. She has been unresponsive and sometimes she will look around, but if we talk to her she does not say anything back to us. She also does not talk any other time either, but this is also one of the symptoms. They have also got a feeding tube in her and she has been able to keep the food down the past couple of days and that is a good thing.
The doctors think they know what Katie has, but we are still waiting on the results to come back before they confirm it. If it is what they think she has it is a physical sickness and not a mental sickness, like we first thought. Katie has a great majority of the symptoms and it would explain a lot of her actions throughout the past few weeks. Also, if the results do confirm that Katie has what the doctors think it is then they have a way to fix it. However, that process could take quite a while, but Barnes Hospital has done this procedure before. I would give everyone the name of what they suspect Katie to have but I am going to wait until it is confirmed, just so we don't jump the gun or anything.
We also wanted to thank everyone for all their support and prayers, it means so much to us! Thank you very much!
I learned there are troubles of more than one kind. Some come from ahead, others come from behind. But I've bought a big bat. I'm all ready, you see. Now my troubles are going to have trouble with me.- Dr. Seuss
The doctors think they know what Katie has, but we are still waiting on the results to come back before they confirm it. If it is what they think she has it is a physical sickness and not a mental sickness, like we first thought. Katie has a great majority of the symptoms and it would explain a lot of her actions throughout the past few weeks. Also, if the results do confirm that Katie has what the doctors think it is then they have a way to fix it. However, that process could take quite a while, but Barnes Hospital has done this procedure before. I would give everyone the name of what they suspect Katie to have but I am going to wait until it is confirmed, just so we don't jump the gun or anything.
We also wanted to thank everyone for all their support and prayers, it means so much to us! Thank you very much!
I learned there are troubles of more than one kind. Some come from ahead, others come from behind. But I've bought a big bat. I'm all ready, you see. Now my troubles are going to have trouble with me.- Dr. Seuss
Wednesday, November 14, 2012
What is going on???
Hello,
I know many of you are wondering about what is going on with Katie. I am her sister, Kara, and I wanted to create this blog, so that we could inform the community about what is going on, as well as, pray, encourage and support Katie throughout this situation.
One thing that I ask though is please do not put any mean, rude or negative comments on here. That is not what this blog is meant for and if there are any of those types of comments on here I will delete this blog and I would hate to have to do that. So if you cannot say anything nice, please do not say anything at all. Thanks!
Katie is at Barnes-Jewish Hospital and she was brought up there this past weekend. She is in very good hands there and she has several doctors trying to figure out what is wrong. They are all very nice and working as hard as they can to figure out what is going. Katie has also had several medical test done and all of those have came back negative, which is a good thing. Katie was at St. Bernards before she was moved to Barnes and they did everything that they could for her there. As one doctor pointed out and I agree with him, he said "St. Bernards medical hospital is meant to treat your everyday brown horse and Barnes-Jewish is meant to treat zebras and right now Katie is a zebra". Therefore, Katie is in the right place, and now it is just a matter of being patient, waiting and knowing that God has the situation under control. As of now all we can do is pray, support and encourage Katie.
I will update this blog every 2 to 3 days, if not sooner than that. I know that many of you will have questions after reading this and most of them we probably cannot answer, but if you would like to ask any questions you may send me a message through Facebook. I will try to answer it the best I can for you. Also, my family and I want to thank everyone for all the support, thoughts and prayers!!! They have definitely helped us get through this difficult time and they will continue to help us get through the rest of this.
James 1:2-3
Consider it a great joy, my brother and sisters, whenever you experience various trials, knowing that the testing of your faith produces endurance.
I know many of you are wondering about what is going on with Katie. I am her sister, Kara, and I wanted to create this blog, so that we could inform the community about what is going on, as well as, pray, encourage and support Katie throughout this situation.
One thing that I ask though is please do not put any mean, rude or negative comments on here. That is not what this blog is meant for and if there are any of those types of comments on here I will delete this blog and I would hate to have to do that. So if you cannot say anything nice, please do not say anything at all. Thanks!
Katie is at Barnes-Jewish Hospital and she was brought up there this past weekend. She is in very good hands there and she has several doctors trying to figure out what is wrong. They are all very nice and working as hard as they can to figure out what is going. Katie has also had several medical test done and all of those have came back negative, which is a good thing. Katie was at St. Bernards before she was moved to Barnes and they did everything that they could for her there. As one doctor pointed out and I agree with him, he said "St. Bernards medical hospital is meant to treat your everyday brown horse and Barnes-Jewish is meant to treat zebras and right now Katie is a zebra". Therefore, Katie is in the right place, and now it is just a matter of being patient, waiting and knowing that God has the situation under control. As of now all we can do is pray, support and encourage Katie.
I will update this blog every 2 to 3 days, if not sooner than that. I know that many of you will have questions after reading this and most of them we probably cannot answer, but if you would like to ask any questions you may send me a message through Facebook. I will try to answer it the best I can for you. Also, my family and I want to thank everyone for all the support, thoughts and prayers!!! They have definitely helped us get through this difficult time and they will continue to help us get through the rest of this.
James 1:2-3
Consider it a great joy, my brother and sisters, whenever you experience various trials, knowing that the testing of your faith produces endurance.
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