11 May 2011

We saw Olivia's Neurologist on Wednesday.  She asked us loads of questions about Olivia's history as we hadn't seen her before.  She said it's definately epilepsy and she believes it's Electrical Status Epilepticus of Slow-wave sleep (ESES) which is a rare epilepsy syndrome.  It seems to get merged with CSWS and Landau Kleffner in a lot of the information on the internet so I'm finding it hard to find information that's specific.

She wants Olivia to have another 24 hour EEG but she said it needs to be when Olivia's bad as previously it's when she's been okay.  We're seeing her again in 4 months.

Olivia's stutter has been terrible this time.  We were on holiday so I managed to get some film of her.  It was really getting to her and one evening she was stuck on the word "not" and said it over 20 times and eventually put her hand in front of her mouth to try and stop herself.  Then she said "I not like my silly voice" and her lip was trembling and she was fighting back tears.  It broke my heart to see her so upset.

It seems to be going again not.  We're mainly only seeing it in the evening.  This time Olivia certainly wasn't as bad as last time with regard to memory loss etc.

Thanks

Donna