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Amber |
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My Daughter's name is Amber. She is now 10
years old. On Amber's fourth Birthday November 13, 1996, was the worst day
of my life and the month that followed. We walked into the Hospital with
our Amber and walked out with a different child. It was like our Amber
dying and we adopted another child to take her place.
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It started November 10th. Amber and I were taking a nap. When she woke up
she was burning up with a fever. I took her temp. and it read 106.7. I
thought the thermometer was broke. My husband then took his temp with the
same thermometer and it read 98.6 which was normal. We gave her children's
Tylenol and rushed her to the Hospital. By the time she was taken back her
temp. was 103.2. They checked her for meningitis, and checked her ears and
throat and took a urine sample. Everything checked out OK, so we were told
by the Doctor on call just to give her Children's Motrin for three days
and check in with her Doctor if she became worst. |
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Well, Three days later which was her 4 Birthday, November 13th, 1992, was
the beginning of our nightmare, and the worst day of our life. That
morning she seemed to be doing OK, so I discontinued the Motrin, took her
to Daycare. Early that afternoon I went to pick her up from Daycare and
had a lot of goodies for "us" to decorate her B-Day cake, and get all
messy and have fun. When I pulled up in the drive of the daycare she was
sitting on the swing just looking at me. Amber usually jumps up and runs
to me, but not this day. I went in and around to the back to go outside
and meet her. Amber's face was flushed, and her cheeks were purple. I
asked her if she was OK, and she just nodded her head. I then asked her to
open her mouth thinking she was choking on something, but nothing was
there. So I asked her again if she was OK, and is there something wrong.
The only thing and the last thing she said was, "I cried for you all day."
I consoled her and told her about us going home and baking a cake and me
letting her frost it. |
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We went to get into the van, and she climbed up in the van OK, I
remember she had on overalls and a pink shirt. On the way home which is
just about 3 miles away she started slobbering. I told her to quit doing
that and I gave her a Kleenex to wipe her mouth and told her to do so. She
took the napkin and unresponsively touched her mouth and her hand dropped
to her lap then she just started staring straight ahead. I was at a
traffic light when this happened and I started screaming her name and
shaking her a little to try and startle her. I didn't know what in the
hell was going on! I've never seen anyone actually have a seizure, but
from the TV and Movies they shake all over and foam at the mouth. Gosh
have I learned a lot about seizures since then. I drove as fast as I could
home to my Husband and called out to him to come and see what was wrong
with Amber. He took a look at her and told me she was having a seizure, to
get back into the van, and said we are taking her back to the Hospital.
Well, now that it has been 5 years I can look at some of
the funny things that happened during this that I couldn't find any
humor in before. |
I had assumed that my Husband was going to follow us to the Hospital
because he worked 3rd shift at the time and he wasn't dressed. So I ran
back out to the van with Amber and got into the Van and started driving
off. I looked in the rear view mirror and seen my Husband running up the
driveway holding his pants in one arm and waving me down with the other.
Well, my assumption was wrong. It may be one of those things that you just
had to be there, but now looking back at this tragedy you grasp every
smile you can. |
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On the way to the Hospital her eyes rolled in the back of her head, and
she quit breathing. We got her there and the Doctors and Nurses started
hooking her up to everything, she had to be put on a breathing machine,
and they collapsed her lungs twice trying to get the tube in place. They
did an MRI, and two spinal taps, took blood and did an EEG. They already
started her on Dilantin and Phenobarbital and Adivan to try to stop the
seizing, and they also stared running antibiotics through her IV. The
spinal tap came back negative for meningitis, and whatever else they were
looking for. She was checked from head to toe for bites or anything. They
checked her for poisoning. They called in the Police and had them go to
the Daycare and take samples of everything there. The paint on the walls a
sample of the sand in the sand box, and a sample of the food that she ate
that day. They called all the other Parents and asked them if their child
was having any symptoms of being sick or running a fever. They did
everything they could possibly do. |
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They had no idea what was causing her to seize or run such a high
fever. She was rushed to Scottish Rite Hospital, where she was still
seizing. After 6 1/2 hours she finally quit seizing and lapsed into a
coma. She woke up from the coma 3 days later. After running all tests
possible and calling in a Doctor from the CDC (Center for Disease
Control), she was finally diagnosed ... with Encephalitis. She was in the
Hospital for 23 days. She had to learn how to talk, walk, and use the
bathroom on her own again without a diaper. |
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Amber went through a complete personality change and needless to say
for the worst. As I said before it has been 5 years and you wouldn't know
it by looking at her that she has been through such a terrible illness.
She has hard to control seizures, and some learning disabilities. She is
at the same mentality level as a 6 year old and she just turned 9. She has
just a touch of scoliosis, and she is still in physical therapy outside of
School. We were told she would eventually and gradually get better, but I
feel more like she doesn't get better we just get use to the "New Amber"!
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Encephalitis in an infection on the brain caused by a virus. It is
considered rare. One in every 50,000 people contract encephalitis. The
illness is more common than reported. A lot of cases go unreported. Before
this happened I had no idea what encephalitis was. I feel that people and
especially Parents should be aware of this terrible illness that robs our
Children of a normal Childhood. |
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The fatality rate before 1986 was 98%. Now there are antibiotics out
there to help slow down, and kill some of the infection on the brain.
Encephalitis attacks the personality, and memory part of the brain.
Intensive physical therapy, as well as speech therapy, is a road to
recovery that has got to be taken. Long term possibly life of hard to
control seizures are also the results of this illness.
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Since this has happened I have taken on a support group. N.C.E.P.H.
Group National Childhood Encephalitis Parents Help Group. We are an open
forum email exchange group, for Parents/Caregivers of children who have
survived encephalitis. The group was established in 10/00 and we had 11
members then. It has been a year and we have almost 40 members. If you
feel you would like to join us please feel free to email me, or if you
just want to talk to me personally you may do so too. Thanks for your
interest in Encephalitis and may God bless you if you or a loved one has
been struck by this illness. |
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Sincerely,
Robin and Amber |
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