Epilepsy consultant terrified my child

My 12 year old daughter who has hemiplegia and newly diagnosed epilepsy saw a new consultant at hospital yesterday. The consultant stated that as she was 'grown up' he would talk to her in a straightforward manner. He surprised me by telling her that she was at risk of dying in her sleep (this wasn't news to me but I was surprised that he told her this). She is now (understandably) extremely upset and is avoiding sleeping. Lack of sleep is one of the key triggers for her seizures. I wondered if anyone had any advice on how I can reassure her. Many thanks.

Comments

  • Contact Helpline TeamContact Helpline Team Member, Community Moderator

    Hi @cpickard70

    Welcome to the community, we are sorry to hear about your recent experience with the consultant. I hope you get lots of support and ideas from the other families on how to reassure your daughter. 

    If you have not already done so, you might find it helpful to get in touch with the Young Epilepsy. They can provide lots of information and support for families affected by Epilepsy from diagnosis onwards. You can find out more here: https://www.youngepilepsy.org.uk/

    Epilepsy Action also have resources and support for families, children and young people: https://www.epilepsy.org.uk/info/children-young-adults

    Take care

    Angie 
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