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SUDEP

Epilepsy & Seizures | Last Active: Aug 23, 2021 | Replies (6)

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@cmackia2020

@hopeful33250 He had woken up around 930am. Went to the kitchen to take the worst medicine ever to be put on Keppra and went to his room. He started texting me. At 10am my mom went into his room to give him his Epodilex and found him lying face down. My dad administered CPR for 15 mins. He was brought to one hospital then I arrived from work just before they were preparing to airlift him to Children’s Hospital in New Orleans. He was pronounced dead at 959pm. However, we all knew he died at home. Cardiac arrest is the primary with epilepsy as the secondary on his death certificate. I want to fight to get SUDEP added.

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Replies to "@hopeful33250 He had woken up around 930am. Went to the kitchen to take the worst medicine..."

My heart goes out to you @cmackia2020. What a frightening time for your whole family.

I can understand your effort to keep SUDEP on the death certificate and to make it known to other epilepsy patients.

Have you ever been involved with an epilepsy national organization or support group to make your voice heard? I realize that might take a lot of energy and time and that is probably something that you don't have after the trauma you have been through.

Please keep in touch with Mayo Connect and continue to post.