>> Friday, June 8, 2012

Still having one to two seizures a day. Less intense, and usually right before his medication. This tells us he is still burning through his meds too fast.

He is now taking 7.5 Leucovorin 3 times a day. A far cry from the maximum dose but Dr. thinks he is middle of the road. ? But that didn't stop me...

It didn't stop me from talking to Spencer. And the good Doctor agreed that he could be upped a little sooner than 3 weeks. So...tomorrow he will get 10mg 3 times a day.

He is more on today, more aware, more interactive and less seizural. It's kinda awesome. Still...not believing that anything can bring him back and keep him back. It's all too 'Flowers For Algernon' for me. I know I should equate it more to insulin for a Diabetic but I still can not. Not yet. Even though he is doing better and he makes fantastic eye contact, there is too much a history of medicinal failure to fight. So, realistically, he is making intentional eye contact, even seeking it out, and smiling a lot more. He is toe walking more, although I caught him walking flat footed a few minutes ago and is doing it even now, he pathological need to spin things is still strong. Maybe even more intense. I will take more video. It will be good to compare.

On to tomorrow, a dose increase and the addition of B Vitamins. Wish us luck.


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What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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