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lLost Son to SUDEP

Tue, 07/10/2007 - 10:03
Topic: Parents & Caregivers
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

Re: lLost Son to SUDEP

Submitted by alismom on Sat, 2007-07-14 - 20:20
Judy, I am so sorry for the loss of your dear son. This website www.raiseepilepsy.org might be helpful for you. You will be in my prayers. Jill

Re: lLost Son to SUDEP

Submitted by Anonymous on Sat, 2007-07-14 - 21:00
So sorry to hear of your loss.. Unfortunately, there's still a lot we don't know about SUDEP, but more research has been looking at this in recent years. The lack of awareness about this is worldwide. An international group put together a book about SUDEP a few years ago. It talks about what is known, and what is unknown all over the world. Much of the information is also here on this site. Here's the link to it.

SUDEP

Take a look at the website for Epilepsy Bereaved as well. I think you may find this helpful. www.sudep.org

Stay with us and let us know how we can all help,

Thinking of you and your family, Epi_help

SUDEP

Take a look at the website for Epilepsy Bereaved as well. I think you may find this helpful. www.sudep.org

Stay with us and let us know how we can all help,

Thinking of you and your family, Epi_help

Re: lLost Son to SUDEP

Submitted by smilinggirl on Sun, 2007-07-15 - 00:57
Dear Judy I am so sorry to hear of your loss. You are in my thoughts. I was totally unaware of the condition until i read your posting. I was diagnosed with petit mal epilepsy as a child but was told i had outgrown it when i was 20. I didnt come off meds until i was 30 but had considered myself to be seizure free (despite still presenting with petit mal and having horrendous sleep disorders, the drs insisted it was no longer epilepsy). i am now 40 and coming back from the uk to aus i had a grand mal seizure and broke my fall with my face losing 4 teeth. seems i didnt outgrow it after all. thank you so much for sharing your story take care adn the very best of wishes to you sue x

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