Discussions By Condition: I cannot get a diagnosis.

Possible epilepsy but doctors refuse to consider!

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: holly berry
  • September 17, 2009
  • 11:37 PM


I really hope someone can help me with this. I'll try to keep it short!

My son suffered what seemed to be a petit mal seizure the other night. He saw colours/lights across his vision, then he fell slowly and jerkily, eyes wide open and staring but was actually not aware at all at this stage. He came to lying across a chair and could feel the chiar and hear me but everything was black. Then he ran up to his room, shouting. To him, he was in the living room one second, in his room the next, he doesn't remember running or shouting. There was also 'lip smacking' as well, but at the time I didn't realise this could be a symptom of epilepsy. His face was very florid for over an hour afterwards - he's normally very pale.

We went to the Casualty dept and the doctor there was almsot certain he would be found to have epilepsy but wanted us to see our own doctor instead. She said I should insist on seeing a neurologist if our doctor didn't seem helpful.

To cut a long story short, our own doctor was not interested, he simply muttered he had no reason to suspect epilepsy and didn't want to refer him. A few years ago, my son had suffered what the doctor called blackouts, in which everything would go balck but my son was still aware of everythign around him. He had all tests at the time, inc EEG, MRI etc, but all came back normal.

Due to what the casualty doctor had said, I asked to be referred to a neurologist but was instead referred to a general paediatric doctor. As she also had the power to refer us to neurology, we went to see her but she supported out doctor's belief it wasn't epilepsy and said she thought it was vagal vascular syndrome (?).

I'm not sure what to do for the best here. My son is 15 and it won't be too long before he can learn to drive. I don't want to think he has epilepsy but I certainly don't want to risk it being misdiagnosed.

I could really do with some advice, especially as people I've spoken to who have epilepsy found his experience very familiar and were extremely surprised he wasn't pointed in this direction.

Sorry if my post is a bit all over the place, I haven't been sleeping.:(


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