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My Story

Rasmussens
Encephalitis a
rare, no cure disease, which most commonly attacks those between the age
of 2 and 10 years old.  A complete
hemispherectomy of the
affected side, is the only option to keep it from spreading to the other
hemisphere.  No person
should ever have to deal with this, much less a
child.

Four brain surgeries, seizures continue, and
more than triple in number each month, yet Candon continues to have hope and
remain positive. Treatments have not worked, so we are headed for a right side
hemisp herectomy April 25, 2013.  We are thankful
for the positive things in life.



I was two weeks from turning 7 yrs old, when
wham-mo, I started having seizures for no reason, out of the blue. 
Normally a healthy, athletic, intelligent little boy, there was no reason for
this to occur.  They started me on one medication, which because it was
such a low dose, November 15th, I had a 48 min seizure at home, while waiting
for the ambulance. This seizure took me to SUNY Upstate Syracuse where I
continued my follow up, increasing the first med's dose, and beginning two more
medications.  Through the end of January, the seizure activity
skyrocketed, up to almost 90 in one month.


Due to my mother
and father continuing to seek answers, we then went to Strong Epilepsy center
in Rochester where the neurologist almost immediately admitted me to the
hospital for my first long term monitoring evaluation, in hopes of diagnosing
my condition.  This long term monitoring showed the seizures were starting
from the right frontal lobe, which matched a spot seen on my MRI's, however
they were still unable to diagnose why this was happening.  The team met,
and could only come up with a diagnosis of rasmussen's encephalitis, which
would mean the seizures would continue to worsen to the point that I would need
the entire right hemisphere of my brain removed!  A second long term
monitoring session was scheduled the end of March, when we also scheduled
second opinions at NYU and Johns Hopkins in Baltimore, in hopes of a more
promising diagnosis.

Neither NYU nor Johns Hopkins could
better diagnose my condition without further testing. I had tried
four different medications of which I remained on two.  One made me a
"Crazy man" losing my kind hearted loving personality, so needless to
say, we stopped taking that one after three weeks.  Another caused my
seizures to increase, so we also stopped taking that one.  At this point
in time, my seizures continued, having about 14 a month, requiring diastat
about once or twice a month for those which last over 5 minutes.

We chose to go back to NYU April 27th for a 7 tesla MRI
which due to it's high magnetic resonance would be able to hopefully diagnose
my condition, because it can take the smallest cross sections possible of my
brain.  IT WORKED!  They diagnosed me with cortical displasia, a
birth defect of the brain, where brain cells don't move where they are supposed
to, and present themselves in the form of seizures between thee age of 6 and
10. Walla - here we are.  The reason the neurologists had such a tough
time with the diagnosis, was that if a boy is even "lucky"
enough to be born with this (they usually die en-utero) they are severely
mentally handicapped.  No one could figure out how  I am even
here. 

The good thing is that my lesion is very
small compared to most, and is also on the right side of my brain where only
15% of your activity comes from.  The bad thing is that I have intractable
epilepsy, where medication doesn't control all my seizures.  The only
hopes to lead a normal life is to have surgery to remove the bad cells.
</p><p>August 4th I will have my first of two surgeries in hopes of
a cure.  We have a 50 to 95% chance of improvement of seizure activity or
a cure.  August 4th, at Johns Hopkins, the neurosurgeon will implant an
intracranial grid, which over the course of the week it is in, will be able to
diagnose all the cells that are involved in causing my seizures.  Then on
August 11th, they will remove the grid and remove the bad cells. 
Hopefully by August 15th I can go home, and four weeks later I can return to
full activity.  The goal is to become seizure free, and maybe even get off
all medications!

I still have upwards of 14 or more seizures
a month.  In July I have needed diastat weekly due to the intensity and
length of the seizures.  Because of this, we know we have made the right
decision for surgery.  Thank you everyone for all your continued support
and understanding through the road I have traveled, and hope this can be just a
bump in the road of my life - and a great story to tell in the future of what
did happen, and was cured!

June 2012: Since August's 2
surgeries, I have now had two more brain surgeries where they removed a part of
my brain they said would for sure get rid of my seizures.  Within 12 hours
I was seizing again, and they still can not understand why.  Fortunately
my neursurgeon took out some of the seizure focus, and I was left with no
disabilities.  Unfortunately, I am still not cured.  We have just
recently gone through additional testing in an attempt to determine what is
causing my seizures - could it be an autoimmune disease, genetic malfunction,
or contact with a virus or bacteria? 

Finally, November
2012, both Johns Hopkins and the Mayo Clinic both diagnosed me: Rasmussen
Encephalitis.

Feed

Colby Westervelt posted a new journal entry, "Vacation and summer updates".

We just returned from Virginia Beach where we have a lovely time with family, boogie boarding, bike riding, kite flying, and just plane old beach time fun.  Candon ... Read more

Colby Westervelt added a new photo.

Colby Westervelt posted a new journal entry, "NO MORE MEDS!!".

We are ecstatic to report that we had a great follow up visit to Baltimore seeing both Candon's neurologist and neurosurgeon.  We are even more ecstatic to report we are ... Read more

Colby Westervelt added a new photo.

Colby Westervelt posted a new journal entry, "Become a volunter for Make a Wish!!".

Here is today's link to the YNN interview. If you are not a member of time warner cable you cant not watch the video, but you can read the script.  She did a nice job.  ... Read more

Colby Westervelt posted a new journal entry, "Interview".

Candon was interviewed by YNN news this morning to promote Make a Wish and specifically in hopes of them obtaining more volunteers for their organization.  He will be on ... Read more

Colby Westervelt posted a new journal entry, "Baseball fun!".

Candon made two great plays in his baseball game yesterday.  He caught a ground ball and ran to tag a player out at second.  Candon was so proud of himself, that about ... Read more

Colby Westervelt posted a new journal entry, "Reducing medications again!".

We are decreasing medications yet again!  We have noticed a HUGE change and improvement in Candon's ability to be self starting, remembering items that are required for ... Read more

Colby Westervelt added a new photo.

Colby Westervelt posted a new journal entry, "In the news again!".

Candon is in today's edition of the local paper, the Morning times as a follow up to his hemiversary. You can't read it on line unless you have a subscription, so I hope ... Read more

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