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Thank you so much for attending my son's PPT meeting. I really believe you helped the team understand my son's epilepsy. Parent
Faces of Epilepsy
Eddie CuddyEddie Cuddy is 14 years old, now in High School and doing well after years of challenges. However the path he has had to travel to arrive here is much different than that of his peers.
Shortly before he was three, Eddie experienced a grand mal seizure with a high fever. This was to be the first ambulance ride to the emergency room for his seizure disorder. A few weeks later when preparing Eddie for a sleep-deprived EEG, the second grand mal struck. At this point, we all knew it was serious. A few days later, the EEG confirmed our worst fears and shortly after that Eddie was officially diagnosed with Epilepsy. In the early years, seizures were well controlled with medication. His Mom, Dad and older sisters Jen and Michelle didn’t realize at the time how easy these days would be compared to the future.
Eddie went on for several years living a relatively normal life with friends, his loved sports of ice hockey and baseball. Then beginning in the fourth grade, the seizures became increasingly uncontrolled. We tried many different trials of medication with varying degrees of control and side effects. His seizure type and presentation changed over the years, primarily absence and partial complex. Over the next four years Eddie tried the ketogenic diet and had a VNS implanted. Unfortunately, neither worked.
In the 7th grade Eddie made a presentation to an audience of more than 100 peers to tell them of his disorder, show a movie about epilepsy and answer questions. While Eddie was in 8th grade, the once exuberant, social little boy from a few years earlier was now gone, and was replaced by a subdued, socially isolated, and highly restricted young man. Eddie was no longer able to attend school for more than a few hours each day. He was forced to end his hockey career at 12 years old. At one point he was having 120-130 seizures per day. It was devastating beyond words for his family to watch the decline and feel helpless. Frequent 911 phone calls and trips to the emergency room were becoming “normal”. We began administering Diastat and Diazepam on a regular basis. The doctors began discussing medications with possible side effects of aplastic anemia and blindness. A corpus callosotomy was discussed. All of this left the entire family stressed and emotionally drained. But we didn’t give up! Eddie would not give up!
Continued medication changes and an effort to eliminate some of the many medications being administered was underway as Eddie hit a growth spurt. During this time the seizures slowed and may have even stopped.
He can't return to all the things he did before. Although he can no longer play ice hockey, he can still skate while coaching hockey for young kids. Eddie’s high school is a special education school that specializes in children with seizures and language based deficiencies. He is thriving! As Eddie says "It feels like a second home. I am able to learn the way my brain would like to learn, instead of everybody else’s whom I cannot compete with."
The most amazing thing about Eddie is how he has handled his seizures and his limitations. He approaches each day with a "can do" attitude. He is always trying to find ways to do things that will allow him to help others. He fully appreciates his life at this point. He is making new friends at his school and his family supports him 100% in everything he does.