Yesterday was such a roller coaster of a day! Lauren seizures went out of control. They gave her iv Valium and she continued to seize. In an 1 1/2 hour period she had 3 iv doses of iv valium and was continuing to cycle grandmal seizures every 20-30 minutes. The pediatric resident doctor (not a Neurologists) told me that there was probably not much more the neurologist could be doing. I was so frustrated and told him that they better do something fast or this is going to get a lot worse. He left and didn't get the neurologist. I lost it (emotionally), to hear that there was "not much they could do", something i know deep down but to hear out loud hit me the wrong way. Lauren's nurse was totally shocked at the doctor and the next thing I know I have a social worker in the room, the charge nurse on the phone insisting that Neurology get down immediately to talk to me. Things then quickly turned around (thanks to good nurses!). The neurologist came and we decided to load her with IV Keppra (the 2nd drug Lauren tried which did nothing-but time and keto diet can change the brain) to stop this bad seizure cycle. We also had a long discussion about trying the VNS (Vegas Nerve Stimulator) when she stabilizes. So her seizures quickly stabilized for now. Next the Endocrinologist came in and told me she was us late researching and consulting the National institute of health (NIH) to see what more they could add to this situation. They told her we could wean the ACTH faster and transition her to a high dose steroid. Again she added how rare this response is(this coming from the main consultant from the NIH). So we stopped the ACTH today and replaced it with high doses of steroids that we will wean over the next 30 days. Then the attending Pediatric doc came in next to address her high heart rate (160-185), she said she has no idea why? So at the end of a very long and intense day Lauren is doing pretty good. I guess we will see what tomorrow will bring!