Okay - we are home from the hospital. Went in to the ER on Jan 22 because something was not right - good thing we went. Appears that Megans body could not keep up with the tapering of the ACTH at the recommended rate. Her body did not appear to be making its own adrenal hormone to replaced what we were taking away as it should have been and she was exhibiting heart, respiratory and blood pressure problems. Her heart rate was at 50 - blood pressure and pulse were low too. We also discovered a viral infection through infectious disease doctor that was treated with IV. The neurologists immediately did a CT scan on her looking for a stroke - thankfully it was negative. I am so glad I went with my instincts to take her in to All Childrens. Her normal neuro, the pharmacuetical company and other resources all were dismissive as to what I was explaining to them and acting like it was not heard of - that you could not have withdrawal from the ACTH. I was dead on. Of course you can if your body does not start to make its own - it is the same thing like if a person has the disease where your body does not make its own adrenal hormone. The team @ All Childrens listened to what I thought and confirmed it seemed that way also. Cardiology, infectious disease, nutrition and neurology were all over her. The neuro there started her on Clonopan - 1/2 tablet 2x day in combo with her Topomax and Keppra for better seizure control. We will see. She is definitely in less pain. It is amazing that she is not SCREAMING all day anymore and is not completely contracted and spastic anymore. Actually she is very floppy. I am thinking the Clonopan is having this effect. I wish she had some tone, but better not to be in pain. We were there 8 days and have been home almost a week. I feel like she is safe here at home again. I did not for a long time which was terrible. We have nursing visits 3 x's weekly to check her heart, blood pressure, vitals, etc. I now check her glucose every day and her blood pressure too. She is actually having blood pressure spikes now which is probably another ACTH reaction. I know that it was the only option and if in the position again I would have to do it. Anyway, she is recovering. Slowly. Hopefully after this is all over she will improve. I am just thankful she is still with us. I sat in the hospital and cried at the thought of coming home without her. It was unbearable.