Lauren's 24 hour EEG went great. WE should get results this week at her Neurology check up.

The Neurologist that was on-call when she was admitted for her EEG this past week was the same one that was on-call over a year ago when she had gone into one of her really bad seizure episodes. (there are about 10 Pediatric Neurologists at the hospital and they all know Lauren through her many stays at Primarys) It was at that time last year I first wanted to take her off the keto diet and put her on steroids/ACTH. I had brought all my medical journal articles with the experimental research on steroids/ACTH on children with uncontrolled epilepsy . This doctor would have nothing to do with trying it and seemed a little put off that I was using these medical articles to try to get what I wanted (the attitude of .....I know what they say you don't need to tell me, and it is not going to work-probably nothing will). It was about 9 months later that I found a doctor willing to try the ACTH. Even though the ACTH almost killed her I honesty feel that it is what helped her, it has been since then her seizures have been in control. Well when this doctor came into the room he was in complete shock (just hearing that Lauren has been seizure free for 5 months, they hadn't even hooked her up to the EEG yet). He stayed in the room for about 20 minutes and all he kept saying is "all I can say is I am completely shocked and I am so amazed!"). He even started asking what dosing was used for the ACTH. I asked him if he had ever seen this before (someone with seizures as bad as Lauren go this long being seizure free), he said he had seen it once when he was a resident. He continued to say, that when you see children having seizures this bad and uncontrolled you know there is really no hope. He then said, " I am just going to hang my head and walk out quietly backwards and do nothing." So I guess from his response it is truly amazing/miracle that she is doing this good! But along with that I always have to say and be aware that this could all end today, and I still live every moment wondering when it will end.


Here are some videos from the group called CURE. A lot of other organizations with epilepsy give help with support and information on seizures (which is great) but in the end we need a help finding a cure, which seems to be their main goal. I am going to keep looking into this organization and see how to best help.
http://www.cureepilepsy.org/video/2007_CURE_video.asp

http://www.cureepilepsy.org/video/2008_CURE_video.asp