Encephalitis Cases
Helena
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Our Story: Prior to Helena getting sick, she was a healthy, normal very active child, and an honor roll student. She was also diagnosed with scoliosis, which has nothing to do with encephalitis (I thought since her spine was weak from surgery-the viral encephalitis attacked it), but had spinal surgery on 1/4/2010. That surgery was successful, and she was released by her surgeon to go back to school on 2/6/2010. Then: Tuesday 2/16/2010 My 9 year old daughter Helena complained of a really bad headache around 7pm. I gave her children's Tylenol and let her go back to bed. She woke up around 2am crying for a headache, and having a fever of 102, I again gave her more children's Tylenol and had her go back to bed. Wednesday 2/17/2010, I called the pediatrician's office first thing that morning explained what was happening, they wanted me to bring her in to the office. While getting ready to go to the pediatrician's office, Helena started stumbling and falling down while trying to get dressed. I immediately knew something was horribly wrong. I held her for a moment and tried to help her sit. She then tried to talk to me and her speech was very slow and slurred. So bad that I had a hard time understanding what she was saying. I was worrying and wondering what is going on with her. I had to help her to the truck, and guide her or else she would stumble and fall. She also was talking (trying to at least) and not making much sense at all. Finally we reached the pediatrician's office and again, I had to help her walk and keep her balance. While walking down the hall to the office she would walk towards the left, and turn her head to the left and she had bumped into the wall. (Please know that I was holding her, and trying to steer her in the right direction, but she is almost the same height as me). While in the triage room the nurse was walking her to be weighed in, and the exact thing happened. Helena complained of headaches, and sensitivity to light. Her pediatrician came in and did a series of tests with her; and asked her questions. Again her speech was very slurred, hard to understand and sometimes she would forget where she was, and what was going on around her. Her pediatrician then told me he is pretty sure she has encephalitis; but cannot release her to me and he had called the ambulance to take her directly to the ER. My husband and I followed in our truck. At this point, I knew it was really, really bad. At the ER the ER doctor told us he thinks she had a seizure, and wanted to release her to go back home, and he then scheduled a neurology appointment for her the very next morning. I became enraged, and called her pediatrician back and told him what was going on, he told me he suggested in his paperwork (which was given to the 911 EMTS) they watch her overnight. Anyway, the ER doctor and I exchanged some words, but he won that night, they sent her home. Overnight she became worst, had more headaches, fever, vomiting, and stumbling. By morning, it was all worse. Thursday 2/17/2010 Her dad and I took her to the neurology appointment, where she again stumbled more often, couldn't keep her eyes open due to light sensitivity, would talk about things that made no sense, and her coordination was totally off. I had to hold her under her arms and tightly to my side in order to help her walk. After the neurologist saw and tested her, she immediately told me to take her back to the same ER and that she is admitting her. She said she wasn't sure what she had, and needed to do tests. I asked if it wasn't encephalitis like what the pediatrician said, and she told me she is not sure. The neurologist did say that the brain is being affected and that some of her symptoms are not associated with encephalitis, so more testing should be done. Ok here we go again-back to the same ER at the same hospital (Children's healthcare of ATL Scottish rite). Once at the ER I had to go through all the same questions and registration all over again. They then did a series of tests on her, a cat scan, but could not find any swelling of the brain. She was admitted that night. The next morning, it all got worst. By this time I had to help her to the bathroom as she would shake uncontrollably and her walking was horrible. Her speak was at it's worst and I now could not understand her at all, I would have to ask her to repeat sometimes, which made her so upset and frustrated. I had to help her bathe, clothe, brush her teeth and use the restroom. She would vomit often, and would ask me why is this happening to her. As a mom my heart just sank, but I couldn't let her see me cry - so I stayed positive and let her know they are trying to help her. Because Helena had just had spinal surgery and had 2 rods and some screws in her back, so they had to meet with her surgeon to decide where to inject her for the spinal tap. The neurologist then wanted to do a MRI and checked with her surgeon for clearance again. He ok'd her to go into the MRI machine, but Helena was totally freaked out and said she her back burned her. (because of the rods), so they didn't get any MRI pictures. The neurologist told me they put children with rods in the machine all the time and didn't know why my daughter is complaining. I got upset and had a few words with her-as I did my research and found out she should have NOT gone in that MRI machine. Helena is the type of child that doesn't complain at all, and gives me no trouble so I know when she is telling the truth. So Thursday afternoon comes and the neurologist doesn't know what is going on with my daughter. I had 2 doctors with CDC who are Infectious Disease control specialist come to the room to examine her, and her symptom They asked me a series of questions, like: have you been out of the country, anyone in your home been out of the country? Do u have pets? Have you flown internationally in the past 5 years etc…. My answers were no to all of them. They still didn't know what her diagnoses was. I again asked them if this is encephalitis, they said they are not sure. They requested more blood test, they swabbed her nose, and throat too for testing. My daughter got worse to the point where, when she tried to move her entire body would shake, and rock side to side uncontrollably. It broke my heart to see her that way. Her speech again, was very very slow, slurred and hard to understand. Friday 2/18/2010 - Friday was a horrible day as I was 8 ½ months pregnant, and had been sleeping on that tiny couch in her room, and all through the night had to help her potty, and comfort her as best I could. (My husband had to stay home with our other children ages: 15,14, and 1year old). Again the infectious disease doctors came, and again asked all these questions, this time the asked me about my pregnancy with Helena, and all that type of stuff. They did another cat scan and found no swelling, so they again wanted to do another MRI. Here we go again. I had my sister come in hopes they could get her into the MRI machine. Unfortunately, Helena was too distraught to go in the MRI machine. She cried too much, and complained of heat in her back. Again her symptoms all continued to get worse. We had to bring a bedside commode as she just couldn't walk by this time. I bathed her, brushed her teeth for her, and dressed her all in the bed as she got worse. Saturday 2/19/2010 - By this time, I was angry, and asked to see the neurologist. I demanded we find out today what is wrong as I didn't want any permanent damage to be done. I just lost it. The nurses did have to calm me down a bit, as I was pregnant and they didn't want me to be upset. I told the doctors that they need to start treating her; as it's been 3days without a diagnosis. Finally by Saturday evening around 4:30pm the neurologist came and told me they finally saw swelling at the back of the brain and she told me she did have viral encephalitis around the spinal cord fluid, but she also had cerebillitis. The neurologist told me she wanted to start her on steroids to reduce the swelling, so she started her on that the same evening. At least now I thought there was hope. Sunday 2/20/2010 - This day, Helena was no better as yet, as she had just started the steroids. We met the medical director of the rehab unit for the hospital today, and he was awesome! He let me know that Helena was looking good and that he'd seen worse-so I was feeling optimistic. Later that day the nurse came in and told us she would be moving to the rehab unit of the hospital. We didn't move to the other room as yet. Monday 2/21/2010 - Today we are to move to the rehab unit of the hospital. This morning Helena's therapist came by and low and behold! It's her same therapist that worked with her after her spinal surgery a month earlier. It was nice to see a familiar face. Helena got up and sat in the wheel chair that day. Great progress! That afternoon we did move to the rehab unit of the hospital. We were again greeted by the medical director, who did some physical testing on Helena, and decided what types of therapies she'll be having. So with all that said, Helena was wheel chair bound and began her therapies the next day. She received Occupational, Physical, speech and Music therapy. We were in the rehab unit until Tuesday 3/9/2010. We spent 20 days in the hospital. Tuesday 3/9/2010 - Yeah!! We get to go home today! Helena will continue rehab here at the same hospital but; it will be on an out-patient basis. Helena began her out patient rehab in 4/2010. I'm glad to report she can walk on her own, and do all of her normal daily activities. She's not the same child anymore; we have noticed her memory is not what it used to be. She forgets often, and can't remember things or people she should remember. Or sometimes I will send her to get something for me from the pantry, and she'd get there, and can't remember why she went there. We just take it one day at a time, and I allow her to play and just be a kid. I received her neuro-psychological evaluation, the doctors recommend her for special education. She now has to be taught a different way, and because of the stress, depression, and mood swings identified with encephalitis, she will have to be in a smaller class and her teachers will have to watch her closely. Helena is to undergo 2 more surgeries on her spine before she has the spinal fusion, and even though the two are unrelated (I was told) - as a mother I can't bear for her to catch encephalitis again. It was the worst thing I have been through, and seeing your normal healthy child just deteriorate in front of your eyes is a mother's worst nightmare. This continues to be a bittersweet journey for our entire family, as no one knows how, if, or when she will fully recover. In the mean time we just pray, and are remaining hopeful. Victoria Victoria GA, USA  Posted: June 08, 2010 |
