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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.