What a crazy time.  Last Wednesday Cody had a 6.5 minute seizure.  Friday he had a brand new twist on his seizures - for about 10 minutes he had mild 'infantile spasms.'  I brushed it off as a fluke.  Then Saturday, he had a 2.5 minute tonic seizure which rolled right into 2.5 minutes of infantile spasms.  And yesterday, a 2.5 minute tonic seizure that rolled into bigger infantile spasms clusters for 6 minutes total!  These infantile spasms look EXACTLY like his seizures did as a baby.  He grew out of "i.s." at a year of age, and his seizure turned into tonic seizures.  That is a common occurrence...the infantile spasms will go away and turn into a more garden variety seizure type that stays with you from that point on.  So it is *very* strange and alarming that the spasms are back.  I have no idea how to treat them - am waiting to hear from Cody's neuro about whether to give diastat or not during spasms.  Back when Cody was a baby, you never did diastat for a spasm cluster because it's not one continuous seizure - it's dozens of tiny seizures in a row - with breaks in between. 

So here's what it looked like yesterday - the video begins after he's already had a 2.5 minute hard tonic seizure.  This is what I mean by "infantile spasm" type of seizures: 

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So far his Neuro has said he wants him to start on Rufinamide immediately - it's a brand new anti-seizure drug just approved by the FDA and made available.  I believe it's the only seizure drug ever made specifically for children.  The Doctor wrote:  I have written a script for a new medication, rufinamide for Cody. On the last EEG we did on Cody, he had what we call paroxysmal fast activity related to his seizures. This new medication has been found to be very helpful in controlling this type of EEG related seizure-short tonic seizures.

So I assume this is his answer to the spasms that are now occurring.  But ONE MORE DRUG!?!  That makes me so bummed.  I had so hoped the VNS would help us get him OFF drugs.  So on we go.  These longer seizures - even before the 'spasms' are so alarming.  This is new and scary.  Please pray for our little guy as he battles through yet another chapter in his life with seizures.

with love,

Shawna