ENCEPHALITIS CASES

Encephalitis Cases

Sophia

Hi, my name is Lupita. My sister Sophia had just turned 24, on November 8th 2002. Two weeks after her 24th birthday I had called her to say "hi." She lives in Chicago, and I live in Texas. She was telling me she was getting over a cold and that she took some vacation time from work. A couple of days later I spoke to her again and she started to tell me that she has had a headache for the past 4 or 5 days. I immediately told her to go to the doctor to get it checked.

Since my husband is an RN, I had a lot of medical books and had been reading about Meningitis, I told her that she was presenting signs of Meningitis. On Friday November 29th, she called me from the hospital and told me that she drove herself to the Doctors office right after work and they did an MRI and a CT Scan and it showed some abnormalities. The next day on Saturday, November 30th, the Physician told me that they didn't know what was wrong, that it looks like some sort of inflammation of the brain. I was transferred to my sister's line and I noticed a drastic change in speech. Her words were slurred and she wasn't very coherent.

That day my family and I decided to drive 19 hours straight to Chicago. We arrived on Sunday, December 1st (Her 3rd day). When we saw her it was like we were looking at a perfect stranger. She knew who we were but she looked like she had suffered some sort of stroke or had some sort of neurological disorder. She had a facial droop. I felt like my heart was breaking I knew I couldn't cry especially at that moment I knew I had to be strong for her.

She has always been very independent. She moved out when she was 19 years old and is very successful in Retail Management. She has always been the independent one; she likes to do things on her own and is very bright and intelligent. Even though I am older than her she has always been the stronger one, she has always been my shoulder to cry on, and when I saw her like that I realized the roles had reversed and that scared me.

The next morning I spoke to her Dr and she said that they couldn't do anything for her that she had a very high chance of not making it and that they had done everything within their power. I told her I was not about to give up on her that there had to be something done, she has always been a very energetic, healthy, and independent young woman. I was not going to leave her like that, and I asked for a second opinion, she referred me to Rush University's Neurological Dept. That morning she was transferred to Rush University.

They did the same tests there and that evening they told us, that we did the right thing by transferring her to their facility. The Neurologist said that in these cases in order for the patient to "get better" she needed to "get worse". He reassured us that her inflammation wasn't as severe and they diagnosed her with post-viral encephalitis, but that she did present several lesions, which were causing the slurred speech and the inability to swallow food or to focus her eyes. She would also fall asleep and wake up only to urinate. She refused to have anyone take her to the bathroom, but my mom still followed her and helped her.

Throughout that week she would sleep a lot, but when it came time to change her IV's she would move and get restless. She was like this for about 5 days (but seemed like an eternity to all of us). The Dr said that it was going to be a bumpy road, some good days and some bad. Throughout that week she would have days were she would only sleep or just scream from pain.

On Thursday, December the 5th she started to wake up and would go through a lot of different emotions from frustration to just plain sadness. She would try to communicate but she was unable to speak. At time she would get impatient and try to rip the IV's off of her arms but with the help of her friends we would hold her back. After that she would just cry and fall asleep. A couple of days later she was communicating by pointing at letters on a chart or sometimes even trying to write a word or two.

On Monday December 11th she started speech and Occupational therapy. Everybody told me that she is recovering very fast. She still remembers all the numbers that she needs. She knows her bank account #'s, Social Security # and her pin # to her accounts. She was just discharged on Friday, December 20th.

I returned on December 11th, she calls me every morning at 7:30 am to say "Good Morning". This week she has been going to the movies with my mom and dad and refuses to stay indoors, she says, she has a new "perspective on life". She told me that this is just a small obstacle that that she is going to beat this encephalitis. She tells me how thankful she is to have the parents and siblings she has and that that was her best medicine, the support from family and friends.

Update: On January 8th Sophia went to her neurologist and he like everyone around her is very impressed at the amazing progress Sophia has made. She can now walk and do a lot of her old activities. Her neurologist was so impressed that he has allowed her to return to work and told her she can start driving again. Just a month ago she was in a near coma state and now she has regained her speech, her ability to walk, and drive. Her therapists are amazed at her progress. This is her last week of therapy. She has started just working 25 hours a week, but everyone at her work says she hasn't changed much, she is still very sharp with every procedure and is alittle more cautious than before. She still complains of minor headaches when she has to concentrate on something for too long. At first we were worried about her driving but she is a very good driver. At this moment she is at work and happy. She has been very determined to get over all this and return to her normal life, and I think she is getting closer and closer to her goal. She said that having Encephalitis has made her a more positive human being, more loving and more understanding. She will soon be getting a job transfer to Texas to be closer to us. In the meantime she is living with our aunt and cousins who have been very helpful during these past days. She is not taking steroids or any other medication, except for the occasional Tylenol for her headaches. When I see her I can't believe how close we were to losing her and how her determination and strong will power and faith has helped her throughout this ordeal. To anyone who has a family member who is going through this all I can say is to hang in there. Everything will eventually get better it is just a matter of time and patience, lots of patience. My sister also has asked me to express her thanks for those of you who have written and asked about her, everytime she reads the e-mails I would receive she would feel better to know that there are people like her out there.
Thanks,

Lupita
Illinoise, U.S.A.

Posted: Dec. 25, 2002

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