lLost Son to SUDEP

Hi Judy, I Can't tell you how sorry I am to hear of your awful loss. Yes, I'd heard of SUDEP, but it was from another parent who'd lost a child, not from our drs., as it should have been. Thank you for sharing your story & valuable information, as hard as it must be. My son (now 17) has always had sleep problems, aggravated by nocturnal seizures (or vice-versa), so I've become a very light sleeper over the years. Since over a year ago, when his seizures have worsened, I'd been staying up all night listening for him. Then, when I learned about SUDEP, I was even more afraid to sleep while he sleeps. Now my husband and I sleep in shifts, so one of us is always awake if he needs us. I realize that won't necessarily prevent SUDEP happening, but it makes us feel better, and we've caught more nocturnal seizures as a result. I don't know why our neuros/drs. don't warn us about SUDEP. My theory is that because they don't know everything about Epilepsy, (which they don't always like to admit to) they don't want to admit that SUDEP exists as a complication to E, as they can't control it. It's just like the neuros who tell us that 'seizures are completely harmless & don't cause any brain damage'! We've had other neuros tell us just the opposite, too. Hmmm, I thought I'd outgrown fairy tales..? Take care & know we're here for you. Anna Mom to Tyler, 17, with Intractable Seizure DO, PDD-NOS, & ADHD. Lamictal, Gabitril, Felbatol, Risperdal, Seroquel, Lorazepam, Diastat & VNS.

Judy, I am so very sorry for your loss. Words can't express how devistated I am to hear about your son. My thoughts are with you and your family. Angela mom to Jack Riley born 3/5/03 @ 25 weeks, 2lbs now 4 years old Spastic Triplegia Cerebral Palsy, Hydrocephalus (VP Shunt), Seizure Disorder http://www.jackrileywilhelm.blogspot.com

Hi Judy. My brother-in-law started having seizures at age 18 and died from SUDEP at 27. Since he started having seizures they were never fully under control. My other brother-in-law couldn't figure out while Charles wasn't getting ready foer work at his night shift job. He checked in on Charles and found him dead. I've read that as many as 1 in 100 people with epilepsy will die from SUDEP, usually young males. People who have seizures in their sleep as opposed to waking seizures are considered most at risk. Those who have generalized seizures and poor seizure control are also considered at risk. It is believed that perhaps the part of the brain that controls the heart beat is affected during some seizures.