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Hi! My name is Margaret and this story is about my daughter Amy who had recently just celebrated her 16th birthday along with her twin sister, Sara on May 26th. We live in New Brunswick, Canada and Amy was diagnosed as having viral encephalitis on August 28th, 1999. At the time Amy took ill, she was an active, typical, fun-loving, easy-going teenage girl who had rarely ever been sick in her 16 years.
On Thursday, August 26th, 1999, Amy spent the night at her boyfriend's house and when she got up the next morning his
mother noticed that at sometime during the night Amy had vomited
some and it had gotten in her hair. She told Amy to go clean
up and that she would bring her home. About 10AM Amy arrived
home with her boyfriend and his mother, Evelyn. Evelyn proceeded
to explain to me what had happened and I told Amy to go have
a nice bath or shower and to get in to some comfy pajamas
and lay down a while. This Amy did with no problem at all
and, in fact, seemed fine. Later that day, I was scheduled
to go away on a weekend excursion with my sister and another
friend to New Jersey but wondering if Amy was ill and should
I stay home put the trip on hold. After talking with Amy and
her Dad it was decided that it was still to be a go and that
Amy felt she was fine and that it was probably just a flu-bug.
Also, that weekend the girls would be spending most of the
time with their father and even when not with him he was only
staying about 10 minutes from the apartment I shared with
my two daughters. Also, across the hall from us lived a friend
of mine and my sister just lived across the street. With some
apprehension about going, I left for New Jersey as planned
arriving at approx. 4 am, we chatted until about 5 am, slept
until about noon, and then while we were sitting in our hotel
room my neighbor called with the news of Amy taking seriously
ill. My friend/neighbor advised me that Amy was taken to hospital
unconscious and what happened was still unknown - it seems
her sister, Sara, went in to wake her up but got no response.
The girls' father was called and he immediately came to the
apt around the same time as the ambulance arrived. I was told
their Dad was going to be calling her back in about 1/2 hour
with further details - I asked her to call me immediately
when she heard from him but I could not wait, I immediately
called the Emergency Department myself and spoke to her doctor.
The Emergency physician advised me she was still unconscious
with occasional seizure activity and at times was combative.
He advised me they were testing her for meningitis, however,
felt that was not what the problem was with her because the
fluid came back clear and that it was more likely to be encephalitis.
He did not feel it was alcohol or drug related because she
just did not fit the usual case for such a thing. He further
stated because of her combative state they needed to sedate
her because even though she was a mere 100-lbs, 5 feet tall,
she was pulling out IVs, catheters, throwing off blankets
exposing her tiny little body, and fighting crazily even though
4-5 people were trying to restrain her. I told him I was immediately
returning home from New Jersey and that I would be calling
periodically along the way -- two hours later I called back
and they had already transferred her to PICU.
That drive from New Jersey to New Brunswick was the longest
drive in my life I am sure but the drive from the NB/Maine
border seemed the longest. Once I reached the hospital in
Saint John, I didn't think I would ever be able to get to
her bedside fast enough and once I did it broke my heart to
see her lifeless body laying there with tubes, catheters and
monitors everywhere and her blankets tied to the bedrail to
keep her little body covered. After 5 long days of staying
there by her side day and night, Amy finally regained consciousness
with her boyfriend sitting by her side holding her hand. We
asked her if she knew who he was and she replied, "Yes,
that's my honey!" Shortly, we realized that Amy knew
who some people were, in particular her father and I, her
sister, her brother and her boyfriend (don't think she recalled
his name right off but knew it was her boyfriend who she always
called "her honey") but other people she only recognized
their faces but could not recall their names no matter how
well she should have known them.
Even though her boyfriend, Adam, like the rest of us, didn't
understand what or why this happened to someone he cared so
much about, he still stayed by her side through her long hospital
stay coming when he could and calling her on the phone usually
several times a day. To me, he is to be commended for his
care and compassion for Amy - not many men let alone 15-year-old
guys would stand by and watch or deal with what happened to
her.
With Amy, the swelling was to the frontal lobe of her brain,
which affected her memory, learning, learning recall, etc.
A few days after she was admitted the lab report indicated
it was viral encephalitis and not bacterial so it was okay
to go ahead with IV steroids along with antibiotics she was
already receiving to help speed up the reducing of the swelling
in her brain. At one point even, they were thinking of airlifting
Amy to Halifax because her neurologist did not want to wait
any longer than necessary for the portable MRI machine to
be returned to Saint John, however, as luck would have it
the machine was en route back to us.
Eventually, it was realized that not only did Amy have problems
with putting names to familiar faces but also with being able
to care and dress herself properly, recognize letters, numbers,
and colors, know which thing to eat first and whether with
a fork or spoon, what time of the year it was (season, date
or anything like that), prepare a snack as simple as a piece
of toast and just basically day to day things we all take
for granted -- the road ahead was to be a long one for Amy
and those around her. As soon as possible Amy was started
on occupational therapy, speech therapy, and physical therapy
(physically her body managed quite well but they wanted to
keep her muscle tone up while she was in hospital). She started
her therapy while still on the pediatric unit and around September
27th, 1999 was transferred to a rehabilitation unit in the
same hospital - this unit usually cared for adults but they
felt they may be able to help her more by being there - Amy
settled in fine and had no problem intermingling with the
other patients.
I guess the one thing that really bothered me on that unit
was the fact they seemed to be more concerned with her boyfriend's
visits than they did with doing things with her - they watched
his every move like a hawk and even went so far as to have
a sitter there from morning until night most days even though
I was there with her. When she was first admitted I stayed
there day and night until she was out of danger and then I
would come in every morning and stay until evening, however,
after she was on the rehabilitation unit for a couple weeks
the doctor in charge there advised me I was not wanted there
until mid-afternoon because she was busy with her therapy
and if I didn't like it I could just take her home --- well
I wanted what seemed to be the best for my daughter so I stayed
away as long as I could sometimes sneaking in around 2 (even
though she wasn't in her room I felt better knowing I was
there for her). Back to the boyfriend, they felt it was very
inappropriate for him to hug and/or kiss her -- well, for
goodness sake, I was there with her the whole time he was
there, too, so what did they think I was going to let him
away with!! Furthermore, even the other patients didn't have
a problem with it; in fact, they thought his caring so much
was kind of cute.
Amy faithfully continued with her therapists doing the best
she could until her discharge on January 11th, 2000 -- at
this time, I was surprised her rehab doctor did not feel it
necessary to continue her therapy sessions on an outpatient
basis -- I was in shock, I wasn't permitted to attend her
therapy with her so how was I to know how they were doing
things with her and which was the right and wrong way to go
about things - I did not want to undo whatever they had accomplished.
When Amy came home she was still unable to shower and/or bath
without assistance even to regulate the water, needed help
with determining which was shampoo and conditioner, to dress
properly and appropriately, she couldn't be left at home alone
or venture out for even short walks by herself, she still
couldn't read, write, tell colors, money, anything like that.
I was lost and not sure where to turn but we pushed on to
do the best we could the way we figured was right. After some
time, Amy was referred to a rehabilitation center in another
part of the province where they did testing, etc with her
over a couple of weeks and suggested things to me to do with
and for her that may be of help -- there, also, I was encouraged
to spend as much time with her as I wanted.
Also with Amy, she has developed a definite change in her
personality - she was always such a carefree, happy-go-lucky,
not-a-care-in-the-world person who just took like as it was
and one day at a time, whereas, now she is headstrong, determined,
says whatever pops in her mind and just overall personality
differences. She remains to be carefree and happy-go-lucky
in many ways and cares about the rest of the world before
herself but it just doesn't seem the same. Also, in some ways
she acts and wants to be treated like an adult but there is
part of her that is like a little girl in things she does
like hugging, holding Mommy's hand when out, and several childish
kind of behavior things. Some ways she seems to have the mind
of an adult but then as quick as you turn is like a small
child. It is so hard to know whether or not to correct her
when she is childlike - I am lost. Oh yes, and Amy can now
tend to be rather quick tempered about things no matter how
big or how small and tends to be bossy and domineering --
something she never was before (I don't know if this is part
of her just growing up or because of what happened to her
- again I am lost).
Soon it will be 3 years since Amy took ill and still a lot
of work to do -- I continue to remain hopeful that she will
still improve -- I don't know if I am living in a fantasy
world hoping that everything will some day become normal for
her the way it used to be or if I should resign myself to
accept the fact that some things in life are going to remain
a challenge for her forever. She is now able to shower and
dress herself successfully although color co-ordination is
a way off most times, she can go for walks on her own now
and not get lost, she can do chores with supervision, she
can go to the store and get what is needed but is still unable
to handle the money aspect of things (she could be cheated
very easily without realizing it, however, the store next
door to us is very good and works with her well), she can
prepare simple snacks although still requires some guidance,
her reading, spelling and math skills are still very basic
early elementary level, and she is more than willing to try
and do everything and anything. It is very hard to see her
sometimes struggle occasionally unsuccessful to do things
no matter how hard she tries, she has trouble understanding
why she cant do things she could before with no problem -
she knows about her illness and how it affected her but why
when she feels physically fine are things so difficult is
what she cant figure out. All she ever wanted in life was
to someday become a wife and mother and possibly work in a
daycare or something like that as she loves children dearly
-- it breaks my heart to see her have so many problems. I
sometimes feel I should be teaching her to accept the limitations
she now has but then another part of me says NEVER give up,
keep going, keep pushing, it is there!
What happened to Amy has affected all that love her dearly
and it hurts each and every one of us to see this change in
her. The constant pressures in our household from sheer frustration
are always there - Amy tends to be "short" with
us and we tend to be "short" with us even though
it is usually always unintentional. The stress level for Amy
and those that love her is so high at times because we do
love each other so much. I constantly ask, "Why did this
have to happen to her?"
NOTE: Soon Amy will "graduate" as such from Grade
12 - her certificate will read "completed 12 years of
education" as opposed to "graduation diploma".
Hopefully, during the summer/early fall we will be able to
get her in to an adult program that can continue to help her
relearn the education she lost. This picture of Amy was taken
February 2002.
I would love to hear from others that have encountered similar
problems and have discovered ways to overcome them - I know
every story is different but what worked for someone else
just might work for us - anything is worth a try. If anyone
has any ideas and/or suggestions please tell me.
Thank you for reading our story.
Margaret
New Brunswick, Canada
Posted: March 13, 2002
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