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Old 10-23-2006, 08:26 PM   #1
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Join Date: Oct 2006
Location: Tasmania, Australia
Posts: 2
Hort HB User
Looking for answers

Hello all,

This is my first post here and I am hoping maybe someone can help me find some answers in relation to epilepsy and information on SUDEP (sudden unexplained death in epilepsy). I will start by saying my 16 year old son passed away in his sleep on Sunday September 24 2006. The only explanation given by the coroner was SUDEP. Our son had a massive seizure when he was 18 months old and almost died, it was put down as a feveral convulsion. A few years later he started having spells of blankness and daydreaming. The doctors then told us that he was experiencing absence seizures and told us he would eventually grow out of them. They started treating him with Tegratol, and told us that although it was a drug used to control epilepsy they did not consider him epileptic. Just before he died they changed his medication to Epilim because he was still having absence seizures and they had to get it under control so that he could go for his drivers licence. This seemed to be working as he told us on the Saturday afternoon that it was the first time in several years that he had not had any absence seizures for at least 2 days. After he passed away I have been searching the net looking for answers as to why it happened, and most of the information I have found, says that people do not die from absence seizures. Is it possible that he may have had something wrong with his heart, such as Long QT. Why don't doctors check for this when they are unsure as to wether a person is epileptic or not as one of the symptoms is blackouts. Also why are parents and sufferers of epilepsy not warned of the possibilities of SUDEP, until our son died I had never ever heard of such a thing.

I will end now as I am starting to get off track a bit, hopefully someone can respond and provide something that may help provide some answers.

Cheers
Hort

I have also posted this in the epilepsy forum

 
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