My daughter xxx

My daughter started having seizures in 2014 aged 8 she is now 10 with medically induced psychosis because of all the epilepsy medication that's been given she was on 4 different lots of meds and because of her size it's been adult doses ! We've had a stay in Bristol and they saw how she changed on them so they changed the meds and she's gone mad again I don't no what to do ? Every medication they give her makes her crazy or makes her have more seizures ! The stay in Bristol was to see if she is a candidate for brain surgery ! But I believe that the seizures are linked to the lump that's grown over the years on the top of her spine /neck i noticed it wen it was the smaller than a 5 pence piece in 2011 went doctors they said not to worry it got bigger and bigger I kept takin her back then 2014 the sezuires started ! The lump is gettin bigger the seizures are worse and the two big doctors don't think it's anything to do with it but I'm not convinced and they won't take the lump out but willing to operate on her brain ! help me out someone please xxx

3 Replies

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  • Definitely have the lump checked out. First understand what that is before any other procedures take place. If they can't diagnose what that is then how can you trust them with her brain?

  • Get the lump checked out ask your GP to get in touch with a neurologist to get a MRI and probably a CAT scan done! Do you know what type of epilepsy it is? Good Luck!!

  • Hi Deb3

    This sounds like a very difficult and confusing situation.

    In England there is the Children’s Epilepsy Surgery Service that aims to improve the quality of epilepsy brain surgery available for children. It also aims to review more children, to see if they would benefit from epilepsy surgery.

    epilepsy.org.uk/info/treatm...

    As you will see from our information, University Hospitals Bristol NHS Foundation Trust is one of the specialist centers for this service.

    It would be best to talk to a medical person about your daughter’s situation. You could try talking to one of the epilepsy nurses based at the Bristol Royal Children’s Hospital. They should be able to explain or find out exactly why the doctors don’t believe the lump is anything to do with your daughter’s epilepsy. Their names are: Michelle Seymour and Sharon Dunn.

    If we can be of any more help, please feel free to contact us directly, either by email helpline@epilepsy.org.uk or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

    Regards

    Diane

    Epilepsy Action Helpline Team

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