Encephalitis Cases
Wyatt
California, U.S.A.
Posted: May 3, 2003
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Encephalitis Cases
Wyatt
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January 31, 1999 Wyatt had a fever of about 101.
Since it was a Sunday we waited until Monday morning to call the
pediatrician. By then the temp was about 103. We had just changed doctors
that month due to a change in insurance. We had only seen her once before,
but we had given the new doctor his history of herpes (he has lesions
when he was 8 days old and had been on antiviral therapy for 6 months).
The doctor thought he had an ear infection and prescribed antibiotics.
But late that afternoon we couldn't get him to swallow either the antibiotic
or tylenol, he just drooled it out.
I put him in a tepid bath to cool him down (in
one of the bath rings) and suddenly he just slumped over. It was a struggle
to get him out of the ring because he couldn't help me. I laid him on
the couch to dry him off and noticed his right cheek twitching. I told
my husband to call the doctor because Wyatt is having a seizure. She
told us to take him to the ER. By the time we got there his fever was
down, his seizure was over and he was in a post-ictal state. He stayed
that way for several hours. We gave the doctors and nurses his history
of herpes and told them he had just stopped anti-viral therapy 2 weeks
ago. They did a CT scan and lumbar puncture that night but couldn't
give us any answers. My husband kept asking the doctors and nurses "could
it be related to stopping the medication??" No, they didn't think it
could be related. They sent us home at 2 am. By then Wyatt was out of
the post-ictal state and was sleeping normally. We went to the pediatrician
again the next morning and while there my husband noticed that Wyatt's
right hand was shaky when he reached for things. We also noticed his
smile drooped on the right side like he had Bells Palsy. The pediatrician
said to just "watch him" for a couple days and if he didn't get better
she would refer him to a neurologist. When we got home we decided it
wasn't right to wait and called the doctor back. Finally after several
hours of calling and calling the pediatrician's office we decided to
head to a neurologist on our own. On the way to the neurologist the
pediatrician's office called we were sent back to the ER. He then had
several seizures in the ER and they gave him Ativan to stop them. He
was admitted to the hospital that night and the next day had an EEG.
It was abnormal (showing again what we later learned was typical patterns
for hse). The next night he started having non-stop seizures. Finally
they started him back on the antiviral (Acyclovir) medication and put
him into a drug induced coma to stop the seizures. Fortunately they
never had to intubate him.
He spent a week in the PICU. He was in that hospital
4 weeks. When he came out of the coma he couldn't make any sound louder
than a kitten mewing. He had no head control or control of his neck
and was paralyzed on the right side. He had lost the ability to suck
on a nipple so they put a ng tube in to feed him. (Before that they
gave him TPN and Lipids by Jugular IV) An OT helped us teach him how
to suck again so we could go home without the feeding tube. He was then
transferred to Children's Hospital for rehab. He spent 10 days there
until they figured out that he was so bad off, he really needed to go
home and have out-patient therapy. Otherwise he would have been on the
rehab unit for 6 months or more. He lost 4lbs during his hospital stay
and it took more than a year to gain that weight back.
No one ever told us what to expect when he woke
up. I thought he would wake up and I would have my baby back. When he
got sick I was still breastfeeding him. I spent all of that time at
the hospital pumping milk for him until the stress dried me out. It
hurts that I didn't choose to give that up, that choice was made for
me. The antiviral medication should have been started at the first ER
visit. He would have had a chance to be normal if they had started the
medication. The neurologist would never admit it was HSE. Thank God
we were able to get him to Childrens for rehab. That is where we got
his current neurologist and his Infectious Diseases doctor. Wyatt had
3 years of outpatient OT and PT and about 2 years of ST before starting
a special preschool. He rides the bus to school in his wheelchair and
gets his therapy at school.
It hurts that my son has to suffer so much because
some doctors were above listening to his parents. It hurts that my husband
and I didn't follow our guts and pull him out of that hospital and take
him to Children's Hospital. It just plain hurts.
It has now been over four years since Wyatt had
HSE. He is still completely dependent on us for all of his care. He
cannot sit on his own or stand. He has only said Momma twice and Da
once. Wyatt has an intractable seizure disorder called Infantile Spasms
which is a result of the encephalitis. Medication and the Ketogenic
diet have not controlled the seizures. We are currently trying different
alternative therapies to help get Wyatt stronger. I still hope for the
day my son will sit on his own or even walk.
Wyatt is the youngest of my three children. He
was the most beautiful, active and happy baby before he became ill.
Still Wyatt has the most engaging smile and beautiful eyes. He has a
sweet personality and is loved by everyone that meets him. He is my
baby and I am blessed to have him with me still. Feel free to email
me.
Rona California, U.S.A. Posted: May 3, 2003 |
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