Hello everyone My name is Amy and I am new here. My son is 6yrs old and was diagnosed with epilepsy in March 0f 03. He started out having 20 to 30 seizures a day, many trips to er rooms and doctors. He was put on trileptal and did fairly well for 6 months only having maybe 1 to 2 a week, after the 6 months of doing good he started having break through seizures and the trileptal was uped and didnt help so they kept uping the dose to try to get him back under control. In March of 04 he had break throughs again back to the 20 to 30 seizures a day and has went down hill since then. He was diagnosed with frontal lobe seizures, but has many different types of seizures, they're saying there starting in the front of his brain and working there way back. My son has been through so many eeg's ( all of which have come back abnormal) and to so many doctors and shots and iv's its breaking my heart , I feel he hates me for this because he don't understand and how can i explain this to him when I don't even understand why??? 2 years later my son is on trileptal,Keppre,Topamax,Clonazepam and B-6 vitiams, wearing glasses now because some how his vision has gotten so bad, had him to the eye doctor the 10th of this month and his eyes have gotten so bad they have to up his perscription on his lens 50% to get him back to 20/20, he is now having memory problems, my son is in first grade and has done been put on homebound and finally got to go back and now because of memory and behavorial issues is failing 1st grade.
He has so much anger and gets upset so easy its hard. He gets so mad he will beat himself in the head, hes been tested for OCD because he will get so mad if something is out of place or isnt the why he thinks it should be that he will put himself into a false seizure ( thats what the DR. called them)
We were told the only thing left to do is brain surgery and that wont come until June!! Scariest thought in the world!!
After being admitted to pittsburg the end of last month on the 24th he had 25 seizures that day and 28 on the 25th after being put on new meds they finally stopped last week and it was the greatest thing in the world to see my son go a week without these seizures, Last night while sleeping he had 3 seizures and this time when he had them he peed himself and he's never done that before!!!!!!!!!! We cant catch a break and sorry so long but just needed to get somethings off my chest, have no one to talk to !!!!!!!! Thanks Amy