Jack had his first seizure where we had to administer Diastat last week. Needless to say, it was a pretty awful experience and we'll be talking to his neurologist about adjusting his meds to try and prevent these breakthrough seizures.
Good news this month, our little friend Joshua from Belleville, Ontario was just diagnosed with Angelman Syndrome. We'd like to welcome Joshua and his family to the Angelman Syndrome community!
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Sorry to hear Jack had a breakthrough seizure. Aubrey's been seizure free since about Sept, but I'm always worried that there's another one just around the corner. Just this weekend I saw her look to the side and blank stare for 2-3 seconds. But then she snapped out of it. Still don't know if she was just looking at something or had an absence seizure. Either way - I'm so paranoid about the whole seizure thing.
What med is he on again? And how much?
Aubrey's on 15mg of Topamax 2 times a day. We see the neuro on Wed. I'll be asking him when he thinks she will need to adjust her meds at all?
Hang in there!
Hope Jack is siezure free for a LONG time!
Seizures just plain STINK! I keep saying I am forming an I hate seizures club; hate them! I am so sorry Jack has those nasty things. Our Joshua, started having them about 6 months ago, he's five years old, so we thought we'd made it free and clear until then. I am glad that we he didn't have them as a tiny guy, but wish he didn't have them now either. Josh takes Keppra for his. Another angel named Josh? Welcome to the new Josh and family! :-) How old is he?
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