So, what's the change? Well, it's layered. Obviously we're out of our two-year stint of no non-febrile generalized clonic seizures (which began when we added WonderDrug, Diamox). Wwwhhhaat? Sorry, my vocabulary has changed since becoming Melanie's mom. This is what that sentence meant:
Feb. 2011: Dr. H put Melanie on diamox, an unorthodox choice, as it is an old diuretic, mostly used for mountain sickness. He thought it might help with seizures and ataxia.
*cha-ching* jackpot struck
Feb. 2011 - June 2013: Melanie only ever had a (big) seizure with illness: usually, but not always coinciding with the initial immune response (i.e. before symptoms).
June 2013 - Present: Five seizures not triggered by illness.
I'm also noticing poor behaviors in the days leading up to a seizure. But today I gave this some serious "momtuition" thought. If bad behaviors coincide with seizure activity, and she has actually been exhibiting these behaviors non-stop (or slowly worsening) for at least a few weeks, and seizures are coming more and more randomly.... Ok, when I list it all out like that, I feel dumb for not seeing it before. She needs a med change. But wait! I'm not so dumb after all: All of her seizures (now and in years past) happen in the late afternoon/evening. Annnd, she is always chipper in the morning, but becomes increasingly squealy and ill-behaved as the day wears on. *lightbulb* She needs something midday. So, since I've been successful at it in the past, I'm going to play neurologist again tomorrow and go ahead and add a 1/4 pill of diamox at lunch tomorrow.
Will let you know how our cute little ginea pig fares.
P.S. Melanie had her first day of horseback therapy today! She had so much fun, and we are so excited to keep doing this. Praying for better strength, muscle tone and posture so she can suck in that low-tone little belly!
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| All the horses wore costumes today. Melanie's was a hula dancer. |
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