She's scheduled to have an EEG this coming week. (A test to measure and record the electrical activity of the neurons in the brain.) We hope it might offer some clue about what's going on when she has these episodes. Although maybe it won't, if nothing unusual is occurring at the point when the EEG takes place.
I'm writing it all down in a notebook that I can't quite bring myself to call a seizure diary. I selected the smallest possible notebook for the purpose, telling myself that there wouldn't be all that much to record and it'd be handier to carry around than something more bulky. It's filling up. Sometimes denial comes in strange guises.
Maybe record it on your phone too for the neuro to see, it is so hard, I still go to jelly when Stacey has a big seizure.
ReplyDeleteI keep meaning to do that, Margaret, and somehow keep forgetting or don't have the phone immediately to hand. I will manage to do it!
DeleteMaybe Abby could remind you? as I know from experience you will not be thinking straight. I took a DVD of Stacey doing 6 'odd' things to a Rett consultation in Cardiff and they managed to explain them all. Thinking of you, I know it's a horrible time.
ReplyDeleteGood idea - I'll get Abby to help. 'Six odd things' sounds like a good title for another post!
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ReplyDeleteI'm so sorry to hear Amy is having what appear to be seizures. I hope the EEG will shed light onto these episodes.
ReplyDeleteIf it does turn out that the episodes are true seizures, I encourage you to read the absolute BEST resource on seizures: the "Beating Bad Seizures" series at http://www.theseeprogram.com/html/s_e_e__library.html. If I could wind back time, this series would have been available when our daughter had been dx'ed with seizures. Reading the series has changed our outlook for the better in big ways; I can't recommend it highly enough.
A second thought, if you find the journal too cumbersome, is to take a peek at https://seizuretracker.com/. It's a free site (and mobile, too!) where you can track seizures pretty quickly...just tick off pertinent information rather than writing it out each time.
All the best to Amy and your family for the upcoming EEG. I hope you get answers.
Thanks Rose-Marie - that all sounds brilliantly helpful. You're a star! x
DeleteHi Catriona, it's so nerve-wracking isn't it. We are just starting the same thing and terrified because we don't really know what to look for apart from what we've googled. Despite knowing she had an 80% chance of getting seizures I'd always been desperately hopeful she'd miss out on them. Good luck with your EEG. Ours has shown nothing conclusive yet. Why are these girls so confounding sometimes!?! xEmma
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