Encephalitis Cases
Anonymous
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December 13, 1998, started out to
be a wonderful day. It was a Sunday. We had gone to church and then
to a local tree farm to cut a Christmas tree. The oldest of our three
boys is Anonymous. He was 12 years old, only two months away from becoming
a teenager. It was the best Christmas tree expedition that we had
ever had. All three boys were finally old enough to make the hike
and were able to cooperate in picking out and cutting down the tree.
This was also the first year that the boys were able to carry the
tree out of the forest without Mom and Dad's help. After evening church
services, Anonymous, his father and I sat down to help Anonymous finish building
a three dimensional plant cell for a science project that was due
the next day.
Usually finishing projects at the last minute is stressful, but this project turned
into a game for the three of us. We were laughing and having a great time
even though it was getting late and was way past Anonymous's bedtime. We began
to notice that Anonymous was giving us "off the wall" answers and his speech
was somewhat slurred. We determined that he was tired and sent him to bed
while his father and I put the finishing touches on the project. Later,
after my husband had gone to bed and while I was working on the computer,
I heard Anonymous scream. He had been asleep for about an hour. I went into his
room to find him sitting on his bed, holding his head in his hands and crying
that his head hurt really bad. I gave him some Ibuprofen and told him to
try to get some sleep. We tried ice packs, cold wash clothes, massaging
his temples but nothing gave him any relief. I assumed that, for whatever
reason, Anonymous had gotten a migraine and that I would call the doctor in the
morning. Then Anonymous vomited and went to sleep. I thought the migraine must
be from having the flu. At any rate, after vomiting he seemed better. But
about half an hour later he was up again screaming with a headache. I assured
him that it was only the flu and to try to sleep. He vomited again and fell
into a deep sleep. I would later find out that this is the last that he
remembered.
Within half an hour, Anonymous was up walking around the house appearing to be half
asleep and mumbling "I need help. Get me help." I asked if he still had
a headache and he said that he didn't. I thought he was better since his
headache was gone. I did not recognize, since I had never seen or experienced
it before, that Anonymous was having mild seizures. Eventually, Anonymous returned
to his bed and appeared to be sleeping soundly. It was now about 3:30 a.m.
on December 14, 1998.
I had no more than climbed into bed when I heard a thud in Anonymous's room. I asked
my husband to check on him. He yelled back and asked why Anonymous was on the
floor. I told him that Anonymous had the flu and that he had been up all night
and was really tired. I wanted to just cover him up and let him sleep on
the floor rather than wake him, but my husband insisted that there was something
wrong. The lights were out, but he could tell that Anonymous's eyes were open
and rolled back. He picked him up, put him on the bed and tried to wake
him. After getting no response, he got a cold wash cloth and tried. Still
no response. I had gotten up and was trying to talk to Anonymous, whose eyes
were now fixed straight ahead. We laid Anonymous on our bed and decided to take
him to the hospital.
While my husband got the car warmed, I tried to get some clothes on Anonymous. Suddenly, he started to contort his hands and his arms began to rise above his head. I wondered what on earth he was doing until I saw his face begin to tighten. I knew then he was having a grand mal seizure and that we needed an ambulance. While my husband called, I kept Anonymous from rolling of the bed during the seizure. After the seizure was over, about 1-2 minutes, my husband carried him to the door to wait for the ambulance. The paramedics were unable to get a response from him other than some soft moans. Anonymous had another seizure on the way to the hospital and one in the emergency room.
The emergency room doctor asked about recent illnesses. Anonymous had been having trouble with chronic tonsillitis and had had his tonsils and adenoids removed in late November. Just before the surgery, he had had yet another bout of tonsillitis and was given the usual penicillin to fight it. But, for the first time, had a reaction to the penicillin. Then, a couple of weeks after the surgery, he had gotten an ear infection. He was still on the medication for the ear infection. Until he had awakened with the headaches, he appeared to be the healthiest he had been in months.
Due to his recent ear infection and being "run down" from the tonsillitis and the surgery, it was immediately assumed that he in all probability had meningitis. Intervenes antibiotics were begun immediately. A CAT Scan was done, plus urine and blood tests for any alcohol or drugs. We were questioned regarding the possibility of drug use, both accidental or intentional, glue sniffing, etc. Anonymous was shy and very religious. It was unthinkable to us that he could have abused anything, but we knew never to say never. Anonymous was then rushed to pediatrics to have a spinal tap done. Even though he was not fully conscience, when he felt pain he fought the doctors and nurses with incredible strength. They reluctantly had to give him a sedative in order to do the tap. My husband and I were sent away and told to come back in an hour.
When we returned, Anonymous was in pediatric ICU. The doctor told us that he was very surprised that Anonymous's spinal fluid was clear, the way it should be. All his tests came back negative. He was baffled and again asked about any possible accidental drug overdose. Anonymous had taken a generic over-the-counter cold tablet before going to bed. We had to retrieve all of the medicines in our cabinet to be tested. All came back normal. Anonymous was sent for an MRI. The MRI revealed that Anonymous's brain was swollen, probably from the seizures. A pediatric neurologist was called in. Anonymous was still unconscious and unresponsive. It was now about 1:30 p.m. on December 12, 1998. I had been awake for about 36 hours, but I couldn't go to sleep. My mind raced about what I could have done and the guilt that I felt for assuming that Anonymous had the flu, for not taking his cries for help seriously, and for wanting to just let him "sleep" on the floor of his room. I started feeling "If only I had....." Suddenly, Anonymous woke up. The nurse that was attending to him told him hello, and he said hello back. I began to cry. I thanked God and thought the worst was over. I was wrong.
Anonymous seemed to have awakened unscathed. He was groggy, and disoriented as to time and location, but he remembered who he was and where he went to school. The neurologist came in to check him. Anonymous was able to do motor skills just fine. We were told that we would have to watch him carefully for the next two years and not allow him to swim alone or climb trees because he was at a higher risk for seizures, but that he would in all likelihood not have any more. The neurologist told us that Anonymous had encephalitis caused by a virus. They were uncertain which virus, but did not see the need to do a brain tissue biopsy since the seizures had stopped and he seemed to be doing well. We were told that it would take "some time" for Anonymous to recover and that he may experience headaches for "a while." They planned to send him home the next morning, Tuesday. Anonymous looked great. He seemed to us to be fully recovered until he went to sleep that evening. Shortly after falling asleep, he woke up screaming with a headache. The nightmare started again. All night he screamed about his head. Nothing helped. He was only allowed to be given acetaminophen because of they did not want to mask any symptoms of seizures. About 5:00 a.m. Tuesday morning he finally fell asleep. The doctors decided to keep him one more day. When Anonymous awoke late Tuesday afternoon, he again seemed fine. He watched television and was bored with being in the hospital. That night, after being asleep for about half an hour, he again woke up and screamed with a headache until early morning. Only this time when he was given the acetaminophen, he began vomiting.
It was now Wednesday. No one could tell us why Anonymous was so good during the day and why the headaches only happened at night. No one could convince us that the risk of masking a seizure was better than letting him scream all night in pain. No one could tell us how long "a while" and "some time" actually was. All that they could tell us was that it was viral, that they could do nothing more for him in the hospital, and they planned to send him home that day. However, during an exam, it was discovered that his ear infection had returned. He hadn't finished the antibiotics that he was taking before the encephalitis and now he was vomiting and not eating. He was also starting to get dehydrated. He would stay one more day in the hospital.
Thursday, still no change. Anonymous still had the ear infection, was still not eating, was getting depressed, was still a little dehydrated and was still having horrible headaches at night. One more day of antibiotics and then home. I had originally thought when Anonymous first woke up on Monday that he would be able to go back to school in a couple of days. Thursday was the first day that I actually asked how long would he be out. This was our first clue that we had no comprehension of what was actually happening. We were told not to plan to send Anonymous back to school until the headaches stopped, but there was no indication of when they would stop. Again, we were told that they would last for "some time."
Thursday night was actually the best night for Anonymous since he became ill. He awakened with a headache several times, but was able to drift off back to sleep. By Friday morning when they were getting us ready to take Anonymous home, I thought he was well on his way to recovery. "A while" to me meant a week or two. I had no idea what was in store.
Anonymous had a good day Friday and was glad to finally be home. Then came Friday night. As usual, just after falling asleep, the headaches began. Only this time Anonymous also had hallucinations. He fought us and thought that someone was trying to drill holes in his head and suck out his brains. He wished for death. His father and I were completely helpless as to what to do. Anonymous had just been released from the hospital. Should we take him back while he was having this headache and fighting us only to be sent home again? Were we waiting again wasting precious time and possibly bring on another seizure? I called the pediatric nurses station and asked what I should do. They suggested I call my pediatrician. I called the pediatrician and got the answering service who transferred me to the doctor on call, a woman who I had never seen at the practice where we took our children. Through tears I told her what had happened over the past several days and hours and that Anonymous was now hallucinating and vomiting and I did not know what I should do. Her crass response was to just give him Tylenol and asked what I expected her to do about it at 1:00 a.m. in the morning. I fell apart. I wondered outside our house in the dead of winter wondering what I should do. I left my husband in the house to deal with Anonymous's headache and hallucinations. I had no where to turn and felt helpless.
Anonymous made it through the night, and the next morning, Saturday, we contacted our regular pediatrician. He explained to us that "a while" meant a long while, probably months and possibly years. We had also discovered that Anonymous could no longer read, tell time, or concentrate on anything for more than a few seconds. He would not be returning to school for weeks, if at all this year. He referred Anonymous back to the neurologist for some more tests.
We called the neurologist only to find out that the next appointment we could get was nearly six weeks away, even though he was having severe headaches. We were told that if the headaches or hallucinations became unmanageable, that we could always return to the emergency room and that we would be put on a call list if there were any cancellations. The nightly headaches continued through Christmas, the end of December and into January. We all dreaded to see nighttime come. Luckily for Anonymous, we had an unusually snowy winter and the start of school was delayed for two weeks. Anonymous felt well enough during the day that he wanted to return to school, even though he could not read. His teachers and the school staff were very helpful and made sure that they wrote his assignments down for me to read to him at night. The headaches seemed to be subsiding somewhat and he was no longer having hallucinations by mid-January. We finally had our appointment with the neurologist who confirmed viral encephalitis and said that there was nothing else we could do but wait.
It was now close to three months since Anonymous's illness began. Anonymous celebrated his thirteenth birthday and his father and I celebrated that Anonymous was still alive and with us. He was resting better at night, but still got headaches easily especially when trying to concentrate or read. Then suddenly, the headaches almost completely disappeared. We could see Anonymous improve daily. His ability to read and tell time returned rapidly and he was able to concentrate again. At the beginning of this school year (November 1999), with Anonymous's first nine weeks report card, we received results from a state mandated proficiency test that Anonymous took in mid March 1998, just after his headaches stopped and his reading returned. We were amazed to see that he scored above average in everything except citizenship in which he excelled! Once the headaches stopped, recovery was rapid.
Our pediatrician told us that based on Anonymous's headaches, hallucinations and relatively rapid recovery (three months we were told was extremely rapid recovery for encephalitis), that he felt the virus that caused the encephalitis was mononucleosis. Especially considering that Anonymous had had several bouts with tonsillitis, surgery and an ear infection before contracting it. He told us about the "Alice in Wonderland" syndrome that accompanies mononucleosis where the patients vision is distorted and they hallucinate. I have since found out information regarding mononucleosis causing encephalitis through the Internet.
It has now been a year since Anonymous's illness. It turned out that Anonymous was the healthiest member of our family in 1999. With the exclusion of the first three months, he did not have so much as one sore throat or ear infection and barely even a cold virus.
We feel that we have been very blessed that Anonymous's illness, although quite intense, only lasted three months and that he seems to be fully recovered. His father and I still worry when he says he has a headache or seems overly tired. We've lightened up a little on making sure that he is strictly supervised while swimming. A life guard on duty is sufficient. We still won't let him climb trees, but we have allowed him to resume his winter campouts with his Boy Scout troop. Of course, his Dad goes along as an Assistant Scoutmaster. My youngest has just started getting migraines and I have flashbacks to Anonymous's illness with every episode. I always wonder if I'm making the right decision or if he needs more medical attention. I also wrote a lengthy letter to the pediatrician that was on call the night we came home from the hospital. I am more protective now of all my children. I think living through the encephalitis has had more of a lasting effect on my husband and I than it has on Anonymous. He's ready to get on with life and has pretty much forgotten about it. My husband and I, on the other hand, spent the whole day of December 13, 1999, giving Anonymous hugs. He never did figure out why.
Sincerely,
Anonymous' Mom Ohio, U.S.A. 
Posted: August 06, 2004 |
