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Hello. My name is Carolyn
and my son Robert is 15. Robert has epilepsy. My wish for him is that he
is able to achieve all that he can in his life. I also wish that my son
can be happy to live his life as it is. This is his story…
Our family was introduced to
seizures some four years ago when, one night, our carefree son fell
asleep on the couch while watching TV. Suddenly he threw his arm back as
if he was trying to get up. The next 18 hours were horrific. Every time
Robert went to sleep he had a seizure. That was the start of a life we
would never have imagined for our happy little boy.
It was 12 months before
Robert’s paediatrician referred him to a neurologist. This was when
none of the usual drugs for epilepsy were holding the seizures for more
than a few weeks. After a series of tests a lesion showed up under
Robert’s cerebellum. Over the next few months great concern arose as
the lesion continued to grow and to change shape. There were more tests,
doctors, specialists, drugs, and of course, seizures. Finally it was
decided that Robert would have to endure an open brain biopsy. Up until
this point, we really felt like we were doing this alone, but to our
amazement we discovered that there were many people who cared, really
cared. This was not only immediate family and friends, but acquaintances
through everyday life. I am sure we had half of Australia praying for
Robert by the time he was ready for his surgery.
My family will never forget
the day of the scheduled surgery. We were sitting with Robert in the
theatre holding area preparing for him to go into surgery when his
neurologist came to us and said "Pack up and go home. We’re not
operating today." We couldn’t believe our ears. The MRI taken
that morning showed that the lesion had actually shrunk. The doctor said
that he wasn’t prepared to operate on the unknown because a brain
tumour just does not shrink in that way without treatment. If someone
had have jumped out at us and said "smile, you’re on candid
camera" we would have not been more stunned.
The next three months
consisted of more seizures, doctors, tablets, lumbar punctures and the
lesion continued to shrink. No one had any answers.
Shortly afterwards,
following more testing, we found out that Robert was having
"twins". A second lesion had appeared up on the line where the
two hemispheres of the brain meet. This is when laughter became good
medicine for my family. We decided that the first lesion had become
lonely over Christmas and invited a friend to stay and we referred to
the lesions as the "twins".
Robert began having even
more seizures. A distressing side effect of this increased seizure
activity is that his sight is affected more and more. His
ophthalmologist told us that Robert had lost most of his left hand side
top quadrant vision. He said that due to the depth of the loss he didn’t
expect Robert to regain his sight. Defying the odds, Robert’s sight
losses have not been permanent. His sight varies depending on the
severity and type of his seizure. Sometimes he has total loss of sight
on his left hand side. Other times he experiences tunnel vision where he
can only see what is directly in front of him.
Not only did we have to deal
with the "twins" and the vision issues but we also had to deal
with Robert as a person, a teenager, and the onset of puberty. We had
a dreadfully unhappy and scared child. He told us one day that he
just wanted to die, and then all this would be over. My husband, Bob,
and I then realized that we needed professional help for Robert. The
teenage years are hard enough without the other problems that our son
was experiencing. Robert had already been blaming himself for his
seizures and we explained to him that it wasn’t something that he
could control.
Robert’s seizure activity
has been complex though he doesn’t have seizures everyday now. He has
a run of seizure activity and then it will plateau out. Sometimes he
sees an aura pre-seizure. Other times there’s no warning. He can have
absence seizures for a few seconds or they can roll into ten minutes or
more. These absences have had a severe impact on his education. He has
had tonic clonic seizures. One such extremely dangerous seizure finally
passed after two hours in a hospital emergency department. He has focal
seizures that affect only his left hand side. It starts with twitching
of his toes, moves up his leg and into his stomach. This one we call the
chicken dance because of a rolling action caused by the muscle spasms of
his stomach. He also has laughing seizures when he has no control over
the attack and can only laugh. The laughter can range from giggles to
full belly laughs. After hours of this it becomes far from funny. Life
is so unpredictable now.
Robert is currently on a
combination of various anticonvulsant drugs along with a steroid. His
neurologist thinks there is a chance that Robert has Rasmussen’s
encephalitis that attacks the brain. Rasmussen’s encephalitis is a
rare progressive neurological disorder, where there are frequent and
severe seizures, loss of motor skills and speech, paralysis on one side
of the body, inflammation of the brain, dementia, and mental
deterioration.
The disorder, which affects
a single brain hemisphere, usually is found in children under 15 years
of age. Steroids are now being used
to close down Robert’s immune system so that the brain stops attacking
itself. Hopefully when the immune system is switched back on that it has
lost its memory of attacking.
We also have a daughter
Lauren who is 11. She has found this an extremely difficult time. We
know how important it is that she doesn’t feel isolated because of the
constant attention Robert needs. We’re doing our best to help her and
we appreciate the advice Epilepsy Queensland has given us regarding this
concern.
We have also decided as a
family that it is better to laugh than to cry. At times I think people
think we are a little bit crazy. All through this, Robert has always
known what is going on. At no time have we kept any secrets from him
because ultimately this is happening to him. It is affecting the rest of
my family greatly, but it is not happening to us.
Bob and I see our job as
keeping our son as safe as possible and to make fully informed decisions
with the help of Robert’s doctors and information made available to us
by Epilepsy Queensland. Robert also has a lot of input into the decision
making process. I am so proud of him.
One of the biggest lessons
for us to learn was to ask for help. We greatly appreciate the support
of Carol from Epilepsy Queensland who visited Park Ridge State High
School and helped make a plan for Robert’s care. It’s reassuring to
know that she is always at the other end of the phone when we need her.
We simply can’t do this by
ourselves. It is only because of the help made available to us, our
family and friends, and Robert’s strength that we have been able to
move forward.
Yours sincerely
Carolyn
PS When choosing which
charity to help, please think of the great need for Epilepsy Queensland’s
services. They do everything in their power to provide the help that we
need. And then they do more.
Epilepsy Queensland Inc:
PO Box 1457,
Coorparoo BC, QLD 4151
Tel: (07) 3435 5000 or 1300 852 853 (outside
Brisbane)
Fax: (07) 3435 5025
Email: give@epilepsyqueensland.com.au
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