Thursday, December 03, 2009


Well, Soren did his job and had 2 seizures this morning. I did my job and pushed the button when these happened so that it made a little mark on the EEG and he was clearly recorded on the video. The doctors then did their jobs and looked everything and gave us the info.

Soren IS NOT having Juvenile Spasms. He is having Tonic Seizures. This is actually good news because Spasms are a pain in the butt to control. Plus, as I mentioned earlier, they wreak havoc on your vision.

So we are dropping out his Lamictal and adding Topomax. And he will continue his Depakote and Clobazam. We'll see if this combination works better than the other to control the Tonics.

But we are now safely home. Soren still has some leftover junk in his hair despite my giving him a hearty scrub. It was a stressful 24 hours, but we did well!



Sheryl said...

I just found your blog. My son was diagnosed with IS about 4 months ago. We had seizure control but they are back now along with another type of seizure and we are trying to get control of them again. Jack is 8 months old and so far is doing well developmentally. I'm curious about your experience with stem cells. I'd love to hear what you think. Please email me at if you don't mind sharing your story. Thanks. Your son is so hansom!

theheidster said...

I too am interested in your stem cell experience. My son was recently diagnosed with IS and although is responding to acth we fear they will return.
Thank you soo much.

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