Friday, 16 October 2009


For those of you that haven't read our story on Emilys website HERE.... Emily was diagnosed with Epilepsy at 15 months old after many many prolonged tonic clonic seizures - many requiring admission to the Intensive Care Unit and/or High Dependency Unit @ The Hull Royal Infirmary - those where scary months when I look back.......

Thankfully things began to settle down so Emily was weaned off one of her medications (Clobazam) by the age of 2 1/2 years mainly because her Neurologist felt it was causing some adverse side effects to her behaviour. It was a scary time for us really as no way did we want to risk putting her (or ourselves) back through what we had been through when her seizures where regular!!! August last year (2008) we had reached a year since her last seizure, when unfortunately she had a bang to the head which made her fit ~ her Neurologist felt it was probably due to a breath holding episode but slightly upped her Epilim just incase.

Another year had passed by with nothing ~ or so we thought...... perhaps we have become a little too confident or even too laid back or maybe we were just expecting the same "tonic clonic" seizures that we had seen previously..........

SADLY ~ it appears that Emily is now having some seizure activity in the form of ABSENCES. Thankfully Emily has a super support worker at the playgroup that she attends, it was Siobhan that has brought this to our attention as she spotted the signs in one of Emilys sessions this week (thank you Siobhan). After speaking with Chris, our amazing Epilepsy Nurse, she confirmed that it does sound like what Siobhan has described is an Absence episode : (

Emilys Epilim medication has been upped a little ~ which we are hoping will put a stop to them.

Obviously I am sad and disappointed as yet again we had just reached a year mark, however I am more sad that on this occasion I failed our Daughter ~ why had we not noticed it happening.......

Once again thank you Siobhan xxxxx


  1. Ahh...don't beat yourself up. Sometimes things are so slight it's hard to notice. Hugs..cause I hate the sz stuff. You do mean August 2008 in this post, right??

    What type of Epilepsy was she diagnosed with?? Maddie has Complex Partials which resemble Absence sz but are from a different area of the brain...

    xxx Ash

  2. Yes 2008 - thanks for that Ash....

    Emily was diagnosed with Complex/Prolonged Tonic Clonic Generalised seizures so basically she dropps to the floor totally unconcious with all limbs shaking and unless rescue treatment is given immediately it's hard to get her out of the fit........ some have been 1 1/2 hour long hence ending up ventilated in ICU as they have to shut her body down to get them to stop!! xxxx (frightening times!!)

  3. Tracey...are they going to do an EEG or just treat her for it given her history??

    HUGS again!!

  4. Up to now Ash they have just upped her medication to hopefully keep it controlled again. However Emily's neurologist has now left his post and hasn't been replaced as yet so when she has a new neuroligist it will be something I will put to them and see what they say!!! xx