Saturday, August 06, 2011
Crazy couple of days. As most of you know Ella has drop fits - has had them for years - and about 5 years ago had a 24 hour EEG which showed 'yes she has epilepsy' and that was it. Has been on 5mls Epilum since.

Fast forward to yesterday morning. I'm washing up. Joe walks into the front room and shouts "Mum, Ella's having a fit." Got to be honest I wasn't phased, they are so quick it would normally be finished before I walked from the kitchen to the living room! Joe does the normal, hold her and comfort her. Then "Mum, this isn't a normal fit." So go in front room, and she's in the middle of a full blown grand mal seizure. Get Joe to get Jeff. Takes one look at her and says 999. Joe goes and knocks on Heathers door, but she's not in. Ben waits at top of road for paramedics. Joshua doesn't leave her side and even carries her to the ambulance. Woman on phone excellent. Ella's fit last about 2 mins. Fast reponse from some top bod in Wokingham as no-one else was available. Then nearest available ambulance turns up - from Slough!! I don't even want to think about how they managed to get to ours so quickly - eek springs to mind.

Long story short:
Now she's had her first GM she can fit for 5 mins without needing medical intervention;
RBH couldn't understand why she isn't under a consultant and because she now has 2 different types of fits needs to be seen by - I think - the Paediatric Neuro-Surgeon.
The Epilum is actually pretty ineffective for drop fits, there are more suitable treatments for those type of fits. But now she needs the Epilum anyway and the dose she was receiving was almost half what she should be getting for her weight.
Needs another EEG.

But mostly I'm thinking, if what she went through scared the hell out of us, how does someone who doesn't understand begin to comprehend what's happened to her.


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Love to hear from you. Please leave your thoughts below. Suzanne xx