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KC’s Story

Welcome to KC’s web page. Our angel was diagnosed with Infantile Spasms on April 18, 2007 at the tender age of 6 months, exactly 9 days after receiving his DTaP shot. Now 4, KC is still seizing and struggling with sensory, behavioral, and developmental issues.




KC was born on October 3, 2006. He was a healthy, beautiful baby boy. On April 14, 2007 we noticed him rolling his eyes. The eye rolling quickly accelerated into obvious seizure behavior. We were lucky to be sent to Hope Children's Hospital by his then pediatrician, Sylvia Irizarry M.D. There we connected with Dr. Neurologist #1, KC's first pediatric neurologist. Following extensive testing we learned that our boy has a catastrophic form of epilepsy called Infantile Spasms. KC was started on ACTH injections which stopped the spasms within 2 days.

Unfortunately, on May 25, 2007 KC began having another type of seizure, atonic seizures, and after trying several medications, Zonegran is helping to control them. On December 19, 2008, following an attempt to wean him from his meds, KC began having frontal lobe seizures, along with absence and myoclonics. Dr. Neurologist # 1 started him on Trileptal which stopped the hallucinations that resulted from frontal lobe seizures.

In March of 2009 we took KC to Detroit to see the famed Dr. Chugani, a world-renowned expert in the field of infantile spasms. Dr. Chugani performed a PET scan and discovered that KC has bilateral areas of decreased metabolism that is probably where the seizures are originating. Dr. Chugani recommended that we take KC to Dr. Kohrman at the University of Chicago. Dr. Kohrman feels that perhaps KC's previous neurologists didn't recognize seizure activity (generalized bursts) seen on KC's previous EEGs. He is now going to take over KC's care.

Needless to say we were devistated by this turn of events. Currently KC is taking zonegran and depakote in an effort to control his seizures. He has major sleep issues and rarely sleeps through the night even though he is on enough knock out medicine to put down his Grandma for 24 hours! Intellectually KC is doing fairly well and most of the after effects of the seizures are behavioral and physical. KC is now in the EC program at Willow school. He is working hard to keep up with his peers, loving all opportunities to get in a pool or lake, enjoying regular trips to the Shedd Aquarium, and in so many ways is a typical 3 year old. We are so very grateful for that!

Latest Journal Update

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With just 11 days to go until the Epilepsy walk, we are getting excited and are thrilled with all the generous donations from our family and friends. Mr. KC will be able to walk/run the entire route this year and will be excited to do so. Mommy and Ree are excited that so many pairs of eyes will be around to help keep him from wandering off in another direction ;-)

If you haven’t donated yet, and would like to, please go to the following link to make your tax deductible donation.


 


http://epilepsychicago.donordrive.com/index.cfm?fuseaction=donorDrive.team&eventID=502&teamID=5050


Thank you one and all for your continued support.