Encephalitis Cases
Joyce
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My mom, Joyce, was diagnosed with Herpes Encephalitis in October of 2009. She was my father’s caregiver…he has Alzheimer’s (related to his pro football career).
8 days prior to being admitted to the hospital mom received a regular flu shot
at the local county health clinic. My father also received a flu shot.
My mom is 74 and is a retired school teacher. She has always been
extremely involved in community organizations and has lots of friends.
After receiving the flu shot she felt like she was coming down with “something”.
She began taking long naps during the day and going to bed earlier
in the evening. She also began having headaches. The day before going
to the hospital she played bridge with some friends. She fell asleep
twice during the game. Her friends were worried and followed her home
and encouraged her to go to the doctor. The next day she was admitted
to the hospital… she woke up and her speech was garbled. Thankfully
she made it to the doctor. Her physician told her to go immediately
to the ER.
The doctors initially thought she had suffered from a stroke. I live
3 hours away from my parents and by the time I reached the hospital
they had already done an MRI and cat scan. The hospital also called
in a neurologist and infectious disease specialist. Her MRI showed
major swelling in the temporal lobes of the brain…”classic encephalitis”
the doctors said. My mother was immediately started on Acyclovir.
This is a very powerful drug and she should have been given IV fluids.
Unfortunately she was not in ICU so the nurses gave her very little
attention. Meals were brought in and the nurses would comment that
she was not hungry. Mom had no idea where she was…how could she know
if she was hungry?
She slept most of the time and did not use correct
words when she did try to talk. My family stayed with mom in the hospital
for 2 weeks. We fed and bathed her and made sure that she got up to
walk…at least once a day. We changed her hospital gown and questioned
everything the doctors or nurses did. If we had not been there I do
not think my mother would have survived. Her kidneys showed high Creatnin
levels so the Acyclovir was stopped for a few days and fluid were
administered through an IV. Once she was re-hydrated the doctors started
Acyclovir again.
The neurologists said it would be 6 months before
we would know the lasting effects of Encephalitis. My mother’s memory
was drastically affected. She could not recall names for simple, every-day
items. She said a tie was “April”. She could not remember people’s
names. She could only stay awake for a few hours a day. After 2 weeks
she was moved to a re-hab nursing home facility to continue the Acyclovir
IV. None of my siblings live in the same town as my parents and we
were unhappy with the care and attention given in the nursing home.
I hired a “home health” nurse and brought my mom home to my house…different
state. I was also caring for my dad (with Alzheimer’s) so it was easier
to have them both in one place. I administer the IV medicines through
her PICC line every 8 hours until the 21 day course of Acyclovir antibiotics
was completed.
Mom and dad lived with me for 4 months. I could see
“tiny” improvements every week. At first I had to bathe and dress
her…she was still sleeping most of the day. I took her to PT and Speech
Therapy. When they released her we started taking small walks…just
to the end of the driveway at first, then we would try to walk a little
further. I got her a wheel chair so when she was tired she could just
sit and get fresh air. I made sure she drank plenty of liquids and
ate 3 healthy meals a day. Her appetite was not very good so we supplemented
with Ensure when she could “get it down”. She suffered from nausea
and dizziness so we consulted an ENT…hoping they might have some answers.
We made appointments with the neurologists locally and set her up
with a local physician in case she needed to be admitted to the hospital.
I think doctors are fairly clueless with Encephalitis because they
see so few cases in their lifetimes.
A friend who is a doctor in the
ER said he has only seen 5 to 6 cases in his 20 years of practice.
There is no specific path of improvement. Everyone is different and
the sooner you receive viral antibiotics, the better your expected
recovery. My mother was lucky because her antibiotics were started
the day she was admitted to the hospital. I thank God that she was
slurring her words so the hospital took her illness seriously. Mom
and dad are back home in their own house now. I have hired a caregiver
to come in 8 hours a day, 7 days a week. Mom’s memory is improving
and she has started exercising and walking daily. She used to read
about 2 novels per week…now she has no interest in reading. She does
play bridge on line and I am hoping this will continue to stimulate
her brain. I am handling all of their finances and my siblings and
I call daily to check in. The caregiver helps preparing meals, cleaning
and driving.
I pray that my mother will continue to recover. I think
she is doing extremely well for her age.
Karen USA  Posted: March 9, 2010 |
