Hi, i have never postd before but maybe someone can help me. I have a three year old daughter who had her first seizure in jan of 2005 she was about 4 months old they put her on tegratol and she still had break through one on feb 12 of 2005 they then weaned off tegratol and put her on phenobarbital with still another seizure n mar 12 and then on march 27 of 2005 that one was bad she had seized for 5 1/2 hours because they couldnt get an iv they flew her by helcopter to a childrens hospital at that time i lived in new jersey so they flew us to chop in philadelphia. they then put her on nueronton and phenobarbital and we stayed on that for two years with no seizures and then we weaned her off and we were seizure free for 2 years on meds and 9 months no meds, and then all of the sudden on jan 10 of 2008 she woke up that morning walking around dizzy she was running into walls, she was alert but i was concerned so i called 911 they gave her oxygen and she woke up a litte more her seizures are always the same she gets this dazed look and she turns very pale almost white looking and then her body starts to jerk. eveyonr of her seizures hs been different. i think that they initially called them simple complex seizures. on jan 10 of 2008 she clinically seized for 16 hours straight and thye put her on an eeg where it showed thatt she seized for 36 hours non stop. they put her into a penterbarbic coma
she was in the coma for 6 days now she is somewhat awake. they tried valproic acid also known as depocot but she then developed pancreatitis from it. they now have her on phenobarbital, topomax and clonazapam to treat her seizures they did a cat scan with normal results they last night did an mri and they found that she has a left mesial temporal sclerosis and that is treatable with surgery but down the road but there is one thing that doesnt add up for that theory being the only thing happening because the right side of her body doesnt want to move, they also tried to do a picc line and caused a blood clot because her central line has been in to long and they want to take it out so they took out the pcc line and redid the central line in the other leg.she is so out of it its crazy she looks like a little zombie i want my little girl back. i guess i have told you my story to try to get some answers some help i do not know what to do i havent slept in over two weeks and i think my i am losing my mind please help and p.s. dont mind my spelling thanks .