Tuesday, November 19, 2019

Phenytoin, you're fired

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That's me, walking C in our kitchen seven days after we stopped the Phenytoin Just a week after starting her on 100mg/day of Phenyt...
Tuesday, November 5, 2019

Phenytoin is up next

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Very excited to share that my daughter C. will finally try out a new anti epileptic - one that has been found successful in a significant p...
Friday, July 26, 2019

Diagnosis delirium

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From Beyond the Ion Channel: The ILAE Genetics Commission Blog   It only took 24 years but the idiopathic era is now behind us. Becau...
Sunday, July 21, 2019

Unamusing musings

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Plodding along with C. Daily assisted walking, weekly hydro and now, intensely working to get her pushing the "button" independen...
Wednesday, June 26, 2019

A few fabulous firsts

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My daughter C. has had several recent "firsts" that I've been derelict in relating. No valid excuse for that other than 24 ...
Thursday, May 2, 2019

Another shot at our wheelchair woes

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After a long delay, my interview with a major local news station, aired. I spoke about institutionalization of people with disabilites and ...
Wednesday, April 10, 2019

Voting for the vapors

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Last month, we brought my daughter C. back to the epileptologist who first examined her in September 2018. At that first visit, this  docto...

On Status Epilepticus, the status quo and my status mentis

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I've written these words several times in the past few minutes to family members:  "I'm at my wit's end. We've ha...
Wednesday, March 27, 2019

Our perilous pool

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The therapeutic pool were my daughter has been doing hydrotherapy is still closed for repairs.  If it weren't for that wetsuit we b...
Monday, March 4, 2019

Tokyo here we come?

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C.'s therapist water-walks her in the pool Our local therapy pool, housed in the building of C.'s alma mater, is quite nice and...