My name is Kirk. My dad started this web site to help family and friends get to know me a little. I've had a difficult go most of my life and continue to struggle daily with seizures. I have been diagnosed with Lennox-Gastaut syndrome, which is a devastating epileptic seizure disorder. Please feel free to say hi. 

OT Therapy

 

I enjoy the time I spend with my therapist and nurses. Unless I'm feeling unwell or they make me use my hands - which I hate :)

Medical Marijuana:  Potentially some amazing results we're anxious to try - Charlotte's or Colin's journey.

Hospital Stays

 

Kirk has been a trooper through his many stays. He has trouble in the fall with weather changes and simple head colds. Any kind of fever triggers more seizure activity including low grade teething. A process made worse by the prolonged and slowed bone growth as a result of the ketogenic diet we use to help manage seizures.

 

Our longest stay was the month of November 2011 at RUH until this recent 3 months and counting, but have also spent many weeks and Christmases there over the years.

My Challenges

 

Kirk has been suffering several seizures daily for 17 years. They range from absent stares and drop seizures to violent full body grand mals. He doesn't speak and or walk unaided. He has no friends and few visitors. 

 

Kirk needs 24/7 care and sleeps with parents because his seizures are life-threatening. We've tried monitors and seizure pads with little success. He is bothered by strong scents and noise - both can trigger seizures. 

 

Kirk had virtually stopped developing at the onset of his seizures at 6 months of age and though we have periods of growth, they are followed by regressive development after many seizures. Additionally Kirklan has physical challenges that complicate walking and vision. 

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