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Non Epileptic Seizures - Carers UK Forum

Non Epileptic Seizures

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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!
Hi Kerry and welcome to the forum.

I have no experience of the problems you are facing but I am copying your post to the New Members section where more people (with similar difficulties) are likely to see it Image
Hi Kerry,
no advice I'm afraid but welcome to the forum, it's a good place to be.
Hi I am sorry I have no first hand experience of NEAD. My father has cerebral palsy and has developed absence seizures. They ruled out epilepsy after mri, CAT and ultrasound scans and have just put it down to cp and medicated him with anti-seizure meds. Have you contacted the school nurse or perhaps think about any way she could change schools?

I wanted to send my hugs, as I too have 4 children and know how hard it is.
Hope things improve soon
Hi, thanks for your response.
The school nurse and school have been involved from the start and we now have something called a CAF in place which means we have regular meetings with school and the various health professionals involved. The school have isolated her in the past, not wanting her to move about school because of health and safety grounds and they have made her feel so bad, that she is refusing to go back. Moving schools is an option, although we are likely to encounter the same problems and we are thinking its better the devil you know.
Just not sure where to go now or what to do.

I have epilepsy and non epilepsy seizures I hope school can help
Non Epileptic seizures are common amongst teenagers. Epilepsy is due to a problem with the nerves in the brain mis-firing, but but in NES the brain cells dont misfire at all. Its often quite difficult to make the diagnosis, but as NES doesnt respond to anti convulsants neurologists like to like to find out what they are dealing with first.

Im sorry that she is having so much trouble at school - it makes it very difficult. I wouldnt have thought that isolating her would be a good idea. I know where you are coming from when you say that there will be similar problems if she changes schools, but it may be that a different school would have different coping schemes.

Sometimes teenagers "grow out" of NES and sometimes NES can be due to psychological trauma or stress. Does that ring any bells anywhere?
Thank you all for your support an advice.
Kerry x
Hi Kerry,

Sorry, no advice from me, just wanted to welcome you to the forum.xx
Hi.. Sorry to hear about the Non Seizures... Have they mentioned the term 'Psuedo Seizures' to you. This is sometimes a pysciatric term for some Seizures when it can be a cry for help or attention seeking, and also a non consious thing where the person having the Psuedo Seizure is not in control of them!!!

Don't know if that helps!! Image