Yolanda Ayala Rodela
1/29/2013 4:13:20 PM
My beautiful daughter died at 30 Sept. 11,2012 in her sleep. Michelle had history of seizure most all her life, maybe 3 times a year, the medicine kept her okay. That morning I decide not to go to work and just stay home and spend time with Michelle, she was a Special child but was very smart independent,she really took care of me,Lol she was my little sargeant. She loved life, me and her NBA SPURS. This was shocking to find my daughter pass upstair in her bedroom, she sounded great the night before couldn't wait for her birthday party and even going to work with me at our studio.. My life has change forever. The M.E said it was Idiopathic Seizure, they said she didn't have a seizure but because she had history it may be SUDEP, the doctor couldn't answer me, I research this and told her, it was SUDEP. I never heard of this, I wish I did, but no matter if we knew how different would I have raise Michelle to be scared of not knowing you could die any moment.. I don't know I'm just mad, Michelle was my life, she was such an angel, My Michelle will always be my angel she hasn't left me, I feel her beside all the time.. God bless you those who have lost their love one..
12/29/2012 8:50:34 PM
My son passed away at age 25 on November 26th from what we believe was SUDEP. He had extremely long febrile seizures as a baby 45 minutes and 20 minutes, then no seizures until he was 22 and was in the Marine Corps. He was medically retired a year before his death and had a seizure on 9-25-12 and was waiting to see the neurologist when he died. He was found at his desk face down and CPR was tried for an hour without success. I've read that drinking can have an affect on epilepsy and medication and he was in college and did drink. I would like to extend my help to the foundation to find a cure/reason for this disorder. Riley_5@frontiernet.net
11/6/2012 9:42:57 AM
Our 34 year old daughter has grand mal seizures about every five days. In the past year I have witnessed two very strange seizures that happened after she had come out of a grand mal and was back in bed or in a chair after coming back from the bathroom. The seizure was totally silent the only thing that moved was her head as it turned so far to the left her head was nearly facing backwards. Her teeth were clenched tight. She was stuck in this position for a very long time. I am convinced that this would have resulted in death by suffocation if she had been laying on her left side. This could be what happens in Sudep. If I had not seen it happen I would have never heard anything since it was silent.
mother passed away
10/10/2012 10:14:04 AM
My mother passed away 7 years ago now from a sudden seizure. She hadn't had one for 13 years. She went off her medication when she found out she was pregnant with me.
When I was 15 I was diagnosed with Long QT syndrome. Now my father and doctors think my mother had long QT as well and was misdiagnosed or something. I am getting genetic testing done to see if I have that mistake gene. If I do my mother probably did have it.
Also thank you for posting this!
2/18/2012 2:53:06 PM
my 23 year old felll asleep 7 weeks ago now from sudep im in such shock i had no idea this could happen please feel free to contact me desprate to talk to other parents who are living such a bad nightmare as me...email@example.com
11/20/2011 12:01:32 PM
My 24 year old son passed and November 23, 2010 and I believe it was due to SUDEP. I am just now finding information on this syndrome and am wondering why our neurologists never mentioned this as a possibility. I would love to talk to others who have experienced this.
9/17/2011 12:34:54 AM
My daughter just passed away on last Saturday due to SUDEP. She has had Epilepsy all of her life and has had trouble breathing because of it since about age 13 or so when she began to have grand-mal seizures. She was 21 years old. From what I understand. This thing is more common between the ages of 20 and 40 years old in people who have a seizure disorder where grand-mal seizures are present most times. It usually occurs at night or early morning when the person is asleep. Try to find an Epilepsy foudation in your area for more information. There is an awesome neurologist out of UCLA in California. His name is Dr. Christopher DeGeorgio 310-794-1195. He did an amazing job with my daughter while we were in California and he really will do all he can to help. If nothing else, he can help to understand SUDEP.
9/7/2011 9:49:18 AM
My step son has recently suffered his 2nd Grandmal seizure in just over 2 months. We suspect sleep deprevation was the trigger once again. We are scared to death as in both cases and after the seizing subsided he stopped breathing and his heart rate dropped to 12. The first time he was at home with us and luckily his mom was there to perform CPR and the second time he was in the ER because he was confused and disoriented and we took him there fearing a seizure was imminent. As it turned out three hours later while in the ER, and just before his neuro showed up to administer Ativan he had his 2nd seizure. The ER doctors words were this a consequential post seizure event...they were not ready for the way he came out of it with resperatory failure/diminshed heart rate. This is the first I'm reading about SUDEP. If anyone can offer any advice or direction we live in the Saint Louis, MO. metro area...firstname.lastname@example.org
8/23/2011 3:15:29 PM
My daughter Caitling has had seizure since she was 12 months old. She often has trouble breathing during the seizure and have even been close to having to perform CPR. Was he having trouble during the seizure or after?? Hers is always during and she stops breathing.
8/3/2011 1:12:23 PM
I just returned from my husband's neurology appointment where we discussed his seizure from last week. He was having trouble breathing. We thought it was the meds he was on, however, the doctor thinks it's the seizure and mentioned SUDEP. We really need to speak to others who know more about this. I really need to talk to others because this makes me afraid and nervous. :( Please contact me if you have any advice. email@example.com