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Haley Is My Hero

"A hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles."

~ Christopher Reeves



Five Days

Posted by Haley's mom on December 2, 2009 at 8:23 PM

Wow, I am on pins and needles waiting for the next seizure.  It is awful to say, I know, but when they have been coming with some regularity, it is hard not to expect one.  It has been five days since her last seizure.  She had two on the Friday after Thanksgiving.  Now here we are Wednesday and no seizure activity.


What has changed?  We finally finished the wean off the Banzel.  Monday night was her last 50 mg  dose.  We thought that the Banzel had contributed to her increased speech.  However, based on last night's shopping adventure, she is as talkative as ever.  She must had said "Daddy" at least 100 times, ...yes,..I was counting!  The only other thing is we added a new multi-vitamin that another Dravet mom is using.  Who knows if that is the reason.  As most parents of children with Dravet know that trying to figure out what are the exact triggers for seizures (besides illness and overheating) can drive you crazy.


If behavior is an indication of potential seizure activity, we are sure to have some type of activity tonight.  She has definitely been on toddler-destructive mode tonight.  She broke a lamp while playing on the phone, dumped a puzzle all over the floor, threw a pump at me, and has been generally sassy.  (Honestly, it is quite cute when she does show some attitude :wink:. 


Oh, I forgot to mention that this IS THE LONGEST she has gone without a seizure since the beginning of May....


I knew it...the streak ended tonight at 9:15 PM, a generalized tonic clonic (grand mal) lasting over a minute....starting all over with day one tomorrow.


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