Non Epileptic Seizures

[Kerry Tyas]

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!

[susieq]

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

[Melly1]

Hi Kerry,

This may or may not be of relevance/use to you. My friend's son has dyxpraxia, he attended a language unit at a mainstream school in his primary years. At secondary he transferred to a mainstream secondary school which was supposed to offer the support he would need (the dyxpraxia affects his co-ordination, clarity of speech etc though he has good understanding.) As a child he had epilepsy, but he had grown out of his seizures. On going to secondary school they seemed to reappear. He appeared to be having tonic clonic seizures. Eventually a medic got to the bottom of it, he was very unhappy at school, his Mum started looking at other schools, and to cut the story short - he now attends a new school and is free from the seizures.

Perhaps it is time to look at other schools?

Melly1

[derbyco1]

Hi, my wife has had NEAD for around 8 years and no medication has helped her. We are trying CBT at the moment which is the form of treatment most sufferers get sent to.
There is a facebook group which has a mixture of carers and people with NEAD here : http://www.facebook.com/#!/groups/2483163487/

Take care and feel free to ask me any questions as like i said, my wifes had it for 8 years so im kinda an expert now

[Rakshauk]

My son was diagnosed with psychogenic non eplileptic seizures about 8 years ago when he was 10. It started around a time of a lot of upheavel in the family. His school were happy for him to attend, but on condition I was on call to go there if he had a seizure. Between us we worked out that his Dad's presence was a trigger, and that I worked with him to develop what I now know is a kind of CBT to work his way through the seizure. They eventually stopped after about 18 months