Our journey through life with hemiplegic cerebral palsy and infantile spasms

Wednesday, May 2, 2012

Karsen's EEG

About a month ago, Karsen started having these spasms where his body would flinch and his arms and legs would lunge forward. We watch Karsen like a hawk, so I didn't think they were just nothing. One day we were able to catch them on video. We found out, after emailing the video to our neurologist (my how technology has changed our lives) that his spasms he was having were in fact seizures. We had an appointment the next day so they squeezed us into the schedule to get him in for an EEG. They told me it would be good if we could get him to sleep during the EEG, yeah right! This kid loves to sleep in his own bed and rarely sleeps anywhere else. Plus we had a three hour drive down there. To my surprise Karsen stayed awake for most of the drive. When we got there the tech asked us how Karsen was with people touching his head. This is one thing I thought "ok this isn't going to bug him too bad, just reading his brain waves" ha! right! Apparently Karsen hates having people touch his head. He was screaming, working himself up, and trying to rip the wires off his head. Poor guy looked like he had brain surgery once they were done putting everything on. The plus side? Well, he was so worked up he fell asleep during. I got a huge relief when that happened, but then I found out they had to wake him up after 15 minutes. What?! Ok fine, I'll roll with it. Karsen was so tired when I sat him up he was falling back asleep sitting up right. The tech started making a ton of noise to get him to wake up... he DID NOT like that. They then proceeded to use the strobe light on him, and then at the very end had to hold his eye lids closed for 20 seconds three times. Pure torture for a 9 month old. Huge sigh of relief when that was over. Results were fast! We got them 20 minutes later. The doctor told us they wanted to nip the seizures in the bud asap. They can be very dangerous for Karsen, and his development. So we started a drug that is fairly mellow in hopes we won't have to do steroid shots. I pray that this works for my poor baby. To all those moms out there that have gone through numerous tests and seizure medication, my heart goes out to you. You are strong women!



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