Hi, my name is Nicole, my son is Damon he is 3 years old and has idiopathic intractable generalized seizures with secondary generalization 100 plus a day mostly in the form of Atonics. He does suffer from grandmals, very little absence and focals. I am here b/c I was wondering if anyone has had a corpus callosotomy? We have recently moved tp Phoenix to help him. We have tried and failed 17 meds, Keto Diet and VNS. We are at a point know where he went into status a couple weeks ago and lost conciousness. It took them alot of ativan and a couple hours to bring him back. I have never been more scared in my life. I realize this can happen to anyone and I understood his E was severe but this was like a slap in the face of what could happen to my family. Damon is extremely unresponsive to any treatment. He was born normal at 38 wks with repeat c-section, never even had an ear infection. Four months old was his first seizire and have been fighting ever since. Nothing on the MRI ior CT, no blood abnormalitlies, NOTHING as to why. We moved here after my childrens hospital told me they had nothing left to help. I love being here. I took him into the ER last week, my epi broght the case before a conference of 20 something Nueros and majority ruled Surgery. He is delayed but not bad, mostly speech. I just can't seem to find many people who have had this surgery (none actually). There are lots of sites that tell you all the good stuff but I want the reality. What will he look like, what havw other people expierienced. Well any and all unput is great. Thanks
Nicole
I am also looking for some rescent information on this , the Nero surgeon we saw was not positive at all, please let me know if you have any luck, the other option is stem cell but that's probably years away. Good luck
damon mom, did your son ever land up getting the corpus callosotomy surgery? My son now 22 is having this surgry done in the new year, 2013. I am having a hard time finding anyone who has had this surgery.