Our daughter, Nadezhda, was diagnosed in May 2010 with Dravet Syndrome at age 3. It is a rare and severe form of epilepsy. This blog is for updates on our lives, our thoughts, and feelings. Everyone needs a voice, and here, ours may be heard.
Also, while epilepsy is often misunderstood, Dravet Syndrome is altogether unheard of. We would like to be informative about Dravet Syndrome and supportive for others dealing with similar circumstances.

Sunday, April 17, 2011

Recent Seizure Activity

A month ago Dezh had a seizure for the first time in about 2 months.  It was a strange seizure.  She just stared off, far away, but I think she had a little movement in her hands that seemed kind of voluntary.  I guess that would be an absent seizure or maybe a partial complex seizure.  It lasted for about 30 seconds or a minute.
Next she had a few partial complex seizures over the space of about 2 weeks.  She may have also had a partial simple seizure.  Also during this couple of weeks she had a few myoclonic jerks.  I know seizures are sad but there was a funny moment during these jerks.  We were eating at a restaurant and she was holding something in her hand.  She had about 3 or 4 jerks in her arms and on the last one she threw what ever it was that she was holding at the table of people behind her.  It really was a little funny, although at the same time we were getting worried that this would turn into a huge tonic clonic seizure like they always used to.  The jerks never did turn into the t/c seizure, thankfully, and I think it is because she was on klonopin which stopped it from progressing.
Just this week (on Tuesday I think) she had a seizure at school.  Her teachers said she was pushing the lunch cart and looked to the side (this is how many seizures start - she looks to one side and can't turn her head or eyes back) and fell down.  I think this was probably another partial complex seizure.  All of her  different types of seizures confuse me sometimes.  And they often morph into each other so I get really confused.
The other night she woke up hungry so I gave her a bit of snack and then put her back down for sleep.  After she fell asleep she started twitching, like myoclonic jerks.  I often twitch as I'm falling asleep after a hard days work.  But this is the second time I have noticed it in her and the first time I noticed was after she had been sleeping for 3 hours so it wasn't right as she was falling asleep.  Different parts of her body just do really quick, little jerks.  I can't believe I didn't notice this before.  I'd bet it's been happening every night for a while. We have an appointment with our neuro coming up soon so I'm going to be sure to talk to him about this, among other things!

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