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lLost Son to SUDEP

Tue, 07/10/2007 - 10:03
On June 28, 2007 we were given the news that our 33 yr. old son had died. Jeff had been diagnosed with epilepsy at age 5 and was treated until age 12 with Dilantin. Then no further treatment was given as it was thought then that he had "grown out of it". He did have a couple of seizures over the years to age 33 that I am aware of but so infrequent that he did not go to see doctor to start back on medication. The cause of his death was SUDEP according to the coroner. Sudden Unexpected Death in Epileptics...similar to SIDS. We were not aware of this condition. No health professional ever mentioned it to us over the years even though Jeff and I both suffered from seizures. We need some answers and support right now to deal with our loss and so we are asking for information regarding this condition. If you have never heard of SUDEP ...PLEASE MAKE YOURSELF INFORMED AND TELL OTHERS.

Comments

I'm so very sorry for your

Submitted by itsmyeviltwin on Tue, 2007-07-10 - 11:07
I'm so very sorry for your loss Judy. I am glad you are telling your story. I am just now working through my own denial phase of my new diagnoses of E, and taking my steps towards management of my disease. I am a nurse and a realist and believe it can be managed, not cured. Please reach out in your grief to a counselor, support group, good friends, family, those who love you in your time of need and know you are in my prayers.

Re: lLost Son to SUDEP

Submitted by Paws1129 on Tue, 2007-07-10 - 23:49
I am so sorry for your lose. I can not imagine what you are going through right now. My son is only 25 months and we almost lost him in Feb. when his seizures started and I know how scared I was then. I wish I had more to offer but I will keep your family in my thoughts and prayers. Take care, Paws

Re: lLost Son to SUDEP

Submitted by Baby Sam on Thu, 2007-07-12 - 09:48
Judy, I am so sorry. Our first and only child began to have seizures when he was 5 months. It has been devasting and an emotional roller coaster. He is now 9 months and the seizures have reappered. My heart broke to hear your story but thank you so much for sharing. I do not know anything about SUDEP but by informing us all, it opens our eyes. Knowledge is the best thing that we can have as parents. I have been thinking of you and your family since I read your story. God bless you and your family.

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