Encephalitis Cases
Lori
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My name is Mandy Bursley, I am 41 years old and my mother, Lori was diagnosed with HSE April 2006 at the age of 63. I'd like to tell you a little about her story and what she's been through. I often thought we were the only ones going through this until I found this site. I had went to pick her up early in the morning with intentions of taking her to the airport for her trip to Germany for her mother’s 95th birthday (mom is full German and her entire family still lives there), instead I found her slumped over on the couch with her eyes racing back and forth and completely unconscious. I had at first thought she had a stroke since the right side of her face was sagging and etc. When the paramedics arrived they put her on oxygen and she regained consciousness, but the right side of her face was still sagging which made us think stroke still. By the time we made it to the hospital and were waiting for the doctor she was having severe hallucinations and obviously was very scared. The ER doctor went through the 50 million questions and she was able to answer every one but could not hold a conversation, instead she would just stare at me and fidget with my hands and pull my hair (she could not make the connection at that time that it was attached to my head). The ER doctor asked about smoking and alcohol consumption and she answered yes to both and when asked how much alcohol she answered with "a 12 pack a day" which I knew was untrue but that comment alone labeled her. When I tried to explain to the doctor that she doesn't drink a 12 pack of beer a day he had already made his mind made up and diagnosed her as ... "going through DT's". They gave her Haldol for the hallucinations and did a CT scan. The CT scan came back fine so therefore they were done, nothing more was needed! I literally had to get loud to get more help and be heard! When the doctor came back I asked if I am the one or if he's the one to request for a Neurologist since I knew there was something definitely wrong with Mom and it wasn't from alcohol! He told me that they ran enough tests and there was no need for an MRI since the CT scan came back normal. He told me the doctor she will be assigned to when she's admitted to a floor may request more tests. I immediately asked to speak with him NOW (I lost faith in the ER doctor and knew that time was limited). Once the other doctor showed up he agreed with me that there was something else going on with her and requested a neuro counsel but we were still waiting for a room. Once in her room the Neurologist assessed her and was almost certain that she had HSE but needed to do a spinal tap, MRI, EEG, etc. to confirm but also told me that her window was very small and we needed to start treatment immediately. It was then that I found out that she had more or less been overmedicated with the Haldol by the ER and her hallucinations had "flopped" (they were more severe than ever). I spent that night in a folding chair next to her bed living and watching her hallucinations as they came one at a time about every 10 minutes one more severe then the next. It was a nightmare and I thought it would never end but thank God the Neurologist hit the nail on the head and started treatment when she did, her IV tree was full for almost two weeks. It took several days but she was starting to come back but had a long road ahead of her. She had to "rebuild" her memory and still to this day has some problems with it. We were told that she has some brain damage and short term memory loss. It wasn't severe enough or obvious enough that we even gave it another thought we figured we would get through it. The next year wasn't too bad and then in July of 2007 her husband (my stepfather) passed away. It was a stressful and sad time but she coped well. January of 2008, I received a phone call from my husband telling me there's something wrong with your mom. She called my home looking for me and when he told her I was at work, he could tell by her response that there was something wrong with her. She told him that she couldn't remember anything but remembered enough to call me. I immediately left work but was still about 30-45 minutes away so my brother whom lives out of state kept her on the phone, we had fear she would go unconscious again. When I got to her house she was walking around confused, when I asked what was wrong she said she didn't know she just couldn't remember anything. When I asked what she meant by that she started to get frustrated so I asked what she did today and she said she wasn't sure, I asked what she ate and she didn't know, I asked if she took her pills and she said she thought so but couldn't identify any of them. My first thought again was stroke (her blood pressure was through the roof!) We drove her to the ER and they got her in right away of course after arguing with the triage nurse who asked her 4 times what medication she took and I would reply each time biting my tongue with “she can’t remember anything that is why we are here”. The charge nurse finally came over and got her in right away. Once the doctor came in I explained to her what she went through a year and a half ago and she started the treatment right away. This time there were no hallucinations but her memory was a complete blank slate. She didn't even remember her husband passing and kept asking questions about pets she had 15 years ago that were long gone. After about 4 days and every possible test again including a spinal her Neurologist decided that she had been having seizures this entire time and no one was aware of it. She described them as a conscious type, not the convulsions and etc. She is now on Dilantin for them and will be for the rest of her life. At the present time she is doing great! She is a different person post HSE but she is still able to take care of herself, eats, cooks and etc. She still has her days, her mental state can be off at times, short at other times and sometimes unaware of her surroundings but overall I'm glad to say she is doing well! Lori WA, USA  Posted: March 22, 2010 |
