Hi all,
feeling a bit low. My daughter who is only 14, as been having full blown seizures for nearly 18 months now, and it has taken a long time to get where we are now. For a while we were led to believe that these were epileptic, but until EEG's were done, they wouldn't medicate. They have now done all the tests possible for Epilepsy and other conditions that would cause her symptons but have come up with nothing. In the meantime, she has not been able to access school properly for nearly 12 months, and is now refusing to go back because of the difficulties that school have caused and bullying.
The Doctors are saying that they are going to treat her for Non Epileptic Seizures, but cannot say for definate that it is this, as there are elements of her seizures that are not normal for NEAD. But in the meantime, her level of education is slipping and we are getting very little support, school have said they can send a TA in a couple times a week to do some English and Maths, but I don't think its enough. And the worst part is there is still no plan on any form of treatment.
I am also with her 24-7, and have 3 other children, I feel exhausted and constantly on edge as we never know when her next attack will be. Her latest bad one had her admitted to hospital with concussion and amneasia. Is there anybody else out there who has had similar difficulties, and please tell me there is light at the end of the tunnel.
Ever hopefull!
feeling a bit low. My daughter who is only 14, as been having full blown seizures for nearly 18 months now, and it has taken a long time to get where we are now. For a while we were led to believe that these were epileptic, but until EEG's were done, they wouldn't medicate. They have now done all the tests possible for Epilepsy and other conditions that would cause her symptons but have come up with nothing. In the meantime, she has not been able to access school properly for nearly 12 months, and is now refusing to go back because of the difficulties that school have caused and bullying.
The Doctors are saying that they are going to treat her for Non Epileptic Seizures, but cannot say for definate that it is this, as there are elements of her seizures that are not normal for NEAD. But in the meantime, her level of education is slipping and we are getting very little support, school have said they can send a TA in a couple times a week to do some English and Maths, but I don't think its enough. And the worst part is there is still no plan on any form of treatment.
I am also with her 24-7, and have 3 other children, I feel exhausted and constantly on edge as we never know when her next attack will be. Her latest bad one had her admitted to hospital with concussion and amneasia. Is there anybody else out there who has had similar difficulties, and please tell me there is light at the end of the tunnel.
Ever hopefull!