hexebusterjaxon (hexebusterjaxon) wrote in seizuredisorder,


Hi - my name is Bev and my 16 year old son Michael was diagnosed with epilepsy only a couple of months ago.  He had his first seizure a week after his 16th birthday. It came completely out of the blue. I heard this odd noise coming from his room, like a weird snoring sound, went in to investigate and found him lying there, drooling, eyes rolled back and looking lifeless. I was terrified.  The ambulance came and took him to the local hospital, where he had a CT scan. They said it was normal.
His next one  was a month later, off to hospital again but this time they arranged for a EEG, which showed abnormal brain activity and he was put on Epilem (500mg once a day). He had another seizure (this time, in the swimming pool), and his medication was increased to two a day. Since then, he's had two more seizures.
I don't know what to do. His medication is obviously not working. His next neurologist appointment is not until April, and they won't give him an earlier appointment.
And Michael - he is so blase about it all. I really have to nag him to take his medication. He refuses to wear a medic alert bracelet. He has to catch a train to college every day and I'm so scared he will have a seizure there or on the train. He also has to spend time at home on his own (I work), and I am petrified he will have one when he is all alone with nobody to help him.
And what happens if he does have a seizure when nobody is there? Will he die? Nobody has explained anything to me, the neurologist didn't want to talk to me or answer my questions, he just wanted to talk to Michael. I feel like I'm lost and I feel I am powerless to protect my son.
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