EEG showed nothing had changed

My 6 year old has tubular sclerosis, causing epilepsy. Recently the past 4 months, is having funny dreams (auras) and her body feels funny, pupils enlarge and she sometimes talks in slow motion, she has no energy, we've had a video EEG, that the doc said showed no signs of seizures so meds don't need changing, they said it must all be behavioural !!!!!! I don't believe this, has anyone else experianced this?

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  • Hi Biffa08, Thank you for sharing information about your daughter. No, I don't think this is behavioral either... Perhaps another visit to the Doctor or Neurologist is necessary, or maybe go for a 2nd opinion. There are so many different types of seizures and the medication could also be causing a problem. Please re-visit the Neuro.

  • Hi Biffa

    Diagnosing epilepsy isn’t easy. But the videotelemtry EEG can be very helpful. The doctors can watch the video to see any seizures that your daughter had. Then they can look at the EEG results to see if there were any changes to her brainwave patterns at the time of the seizure. During an epileptic seizure, the EEG reading would become abnormal. It would show a pattern typical of epilepsy.

    epilepsy.org.uk/info/diagno...

    Some people can have symptoms very similar to epilepsy that aren’t epilepsy. For example there is Non Epileptic Attack Disorder (NEAD). NEAD happens for psychological reasons rather than physical ones. The psychological reasons could include thoughts, feelings, and present and past experiences. This is different to epilepsy. Epileptic seizures happen because of abnormal electric activity in the brain.

    epilepsy.org.uk/info/diagno...

    If you are not happy with the diagnosis, it would be advisable to talk to your family doctor. They should receive a report from the hospital explaining the doctor’s decision and diagnosis. If necessary, your family doctor can refer your daughter for a second opinion.

    If you haven’t already, you may also wish to contact, Tuberous Sclerosis Association to see if others with that condition have similar symptoms to your daughter.

    If we can be of any more help, please feel free to contact us again, either by email or the Epilepsy Helpline freephone 0808 800 5050.

    Regards

    Diane Wallace

    Advice and Information Team

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