A lot has happened these past few weeks. Just wanted to give a quick update. We started ACTH about 4 weeks ago. The first week was great but then she started sleeping a lot and her stomach just started getting huge and she was peeing tons. I took her to the ER 2 weeks ago and they ran tests which all came back normal, gave her some fluids and told me she probably just had a virus. I told them I have 6 kids and this is not a virus-she was sleeping all of the time. I have been told these are not symptoms of ACTH so we continued on them (because of improved seizure control). I continued to express my concerns to the neurologists and began feeling like I was just being a"paranoid" mom. I couldn't shake the feeling something was wrong so took her back to the pediatrician today who ran some more tests that showed some abnormalities. So tonight I took her to the ER at Primary Childrens and they just put her in ICU. Her potassium is low, her gases are off, and her heart is slightly enlarge, etc(that is the best I can come up with). Her heart rate is beating low but her EKG was normal. They are trying to figure out what is going on with her body. We are working to wean her off the ACTH but that will take time-up to a month (we will go over a plan in the morning). We are just hoping that once we get her electrolytes normal and get her off the ACTH she will be fine. I guess the positive is that her seizures control has been better, but she just can't function. I guess I can cross ACTH/steroids off my list. I feel so bad for Lauren, she is just one big experiment.