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I would like to tell you the story of my son, Tyler Davis. Tyler
is 4 1/2 years old. We live in Redondo Beach, California, USA.
On September 11, the day of the World Trade Center bombings,
my son came home from preschool and complained he had a headache.
I gave him Tylenol and he fell to sleep right away on the couch
(this was very unusual for my usually active child). The next
morning Tyler woke up and still said his head hurt a little.
I gave him more Tylenol and sent him to school. When I picked
him up from school that evening at 5:00 he said his head still
hurt. I called our pediatrician to ask him to be seen that evening,
the nurse explained that there was a virus going around and
that it should be nothing to worry about. The next morning he
woke and he seemed OK but still complained of a slight headache.
I took him to school and told them to call me if he seemed like
he should go home. I called the doctor and insisted that he
be seen that afternoon. At 2:00 I received a call at work saying
that Tyler had spiked a fever of about 101 and that he had not
seemed himself all day. I immediately picked him up and took
him straight to the doctor. At the doctor, Tyler was unusually
agitated and would not let the doctor examine him, he could
only scream in pain as if he wanted to crawl out of his skin.
The doctor casually mentioned that she could do a very invasive
test for meningitis but she suspected that this was just a virus
that needed to run its course. She sent us home with only Motrin
and told me to call if the symptoms got worse (and they did).
By that evening his fever was up to 103 and all he did was sleep.
Friday morning (day 4) Tyler woke up and was playful for about
5 minutes and then suddenly seemed to turn into another child.
He was yelling and screaming and clenching his fists. As quickly
as this behavior began, it ended. He climbed on the couch and
went into a deep sleep. I immediately called my doctor (and
my husband) and told them I was taking Tyler to the emergency
room. They immediately suspected spinal meningitis and did a
spinal tap (his first of 3) and it was confirmed. He was admitted
and started on fluids for his dehydration (he had not eaten
or drank anything in 2 days). It was never explained exactly
what was wrong with my son. All he did was sleep and when he
did wake up he seemed to stare into space. By the third day
Tyler was transferred to a Children's Hospital where we met
with a pediatric infectious disease doctor. After another spinal
tap he determined than what Tyler had was much more serious,
Menengio Encephalitis. He explained that not only was there
swelling on the outside of his brain, but also the inside. Tyler
had not spoken, eaten or even appeared to be aware of his surroundings
for more than 4 days. After an MRI and an EEG they discontinued
the Acyclovir antibiotic (used to treat Herpes) and told me
that because it was viral there was no treatment. When I asked
if my son was going to die, they said they did not know. When
I asked if my son would ever talk again, they said they did
not know.
After 6 days, Tyler began to speak, in a completely different voice and using very few words. He appeared confused and scared but his progress seemed to be very slowly getting better and on Friday, exactly one week later he was released from the hospital with these instructions to my husband and I... "We don't know exactly what will happen, you will experience lots of up and downs, we are hoping that he will continue to get better at home." He didn't...he got worse. He did not know where he was, where his room or the bathroom was. He appeared to have completely shut down. He would barely eat and what he did, he immediately threw up. We were back to the hospital; Tyler was in a "catatonic state". He did not even blink when they collapsed two veins and finally got his IV in on the third try. We had lost him once again. The doctors came back in and said they had never seen such a regression in all of there years. Tyler never looked at me, he looked through me. I again asked if my son was going to die, they again said, "I don't know". They took Tyler for another Spinal Tap to see if there was something new. As soon as they put the sedative (ativan) in his IV he looked up at me and began to talk. He talked about everything... school, his friends, he told me he loved me and was laughing. The doctors were puzzled. They gave him more Ativan to knock him out for the Spinal Tap but instead, he talked more. He talked about anything and everything. My husband and I had renewed hope, we knew our boy was in there somewhere he just needed some help coming out. They finally knocked him out using enough Ativan to put 2 adults to sleep. My husband explained this to our infectious disease doctor the next day and he was stunned. We suggested that if it worked yesterday, why can't we just give him the same sedative today and see what happens. He consulted with a Psychiatrist and 2 other doctors and agreed to try (they explained that the Ativan had never been used this way before). Within 2 minutes of injecting it into his IV, Tyler was laughing and talking. He continued to talk more and more even as the drugs wore off. The Doctors and nurses came in complete amazement. Tyler was coming back to life.
We are now October 8, almost 1 month after the initial onset of the Encephalitis and it will be Tyler's first day back at school tomorrow. He is almost exactly the same little boy he was before the illness. He has some slight long term and short term memory loss and has trouble getting to sleep at night. We are so happy to have him and as any of you know reading this story, my life will never be the same. I cherish every precious moment and thank God for not taking my son. For you parents, I hope Tyler's story will give you a sense of hope. Please feel free to e-mail me if you have any questions about Tyler's story.
The doctors say they will never know why Tyler got this rare virus.
Mom
California, U.S.A.
Posted: December 1, 2001
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