Sunday, March 5, 2017

Sensory Seizures?

Recently Rhett was admitted to Alberta Children's Hospital for LTM VEEG, long term monitoring video EEG. He has been experiencing a new seizure since November, which presents only in his right hand and sometimes he can feel a sensation in his brain.  On December 27 his meds were increased but this has had no affect on the seizures. Since Christmas Day we have documented over 200 episodes. I use the Track It Seizure App on my iphone to document. It's not perfect but it's easier than keeping a notebook with me.

EEG Hook up. Calm and patient...such a  trooper!

28 leads later and he's ready for business.

24hr EEG in hospital. Rhett was a trooper. An EEG rock star! He barely complained, never scratched or dislodged any of the 28 electrodes, and was content. Of course, he wished to be home, was embarrassed of the way he looked with his "long pony tail", wished they weren't spying on him and wanted me with him at all times but he handled all this so well.  Rhett really is amazing when it comes to all the hospital procedures. I'm so proud of him.

Taking in the view before being confined to bed for 24 hrs.

Results? Nothing conclusive. Nothing that we wanted to hear. The seizures are not showing on the EEG. Remember an EEG captures surface electrical activity not deep activity.
Of course, the EEG did show frontal lobe spikes, more frequently on the left but definitely from both side of the frontal lobe. This activity is indicative of other TS tumors and  not related to the right hand issues.
Passing the time with a little "screen time" on the ipad. 

So now what?

According to the Neuro Doc, we are to not worry about this. It may be anxiety related. Carry on as we are, no med changes, and "don't worry about it".

**sigh** Easier said than done and not an appropriate outcome for me. How do you tell a child to ignore the sensations in his hand and brain? How are they not related to something deeper? How is this anxiety driven? I can see how it causes anxiety. How is a MEG & MRI not requested as a deeper look? How are Jacksonian Sensory Seizures not considered?

Many more questions have been created and no answers.  This is another hard part of Tuberous Sclerosis and Epilepsy. I want to know why and now what. I want more for Rhett not just a pat he's doing great for one with TSC. Yes, he is doing great, but can't there be more? Better? Greater?

And so today, our hospital hangover is easing, slowly, and I am struggling with bitterness and anger towards the indifference of Neuro. I'll get past this. I always do, but it has to be worked through and addressed otherwise it eats me up. Sharing and writing and questioning and researching is part of that process. So here I am sharing with all of you. Watching the squirrels chase the blue jays out the sun room window, the dog sleeping in his bed beside me, and listening to the boys watch a movie before we venture outdoors. Onwards and onwards.

Until next time....

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