Way to go UTES!I had to get that in before Rob reads this.
It has been one week since we started the ACTH therapy so I thought I would let you know how it's been going so far. He does pretty well with getting the shots even though the medication is extremely thick and takes a while to inject it into his thigh.
Last Saturday (day 1) was pretty bad. His seizures were getting more frequent, more intense and lasting longer. As the week progressed he was still having more seizures but he also was extremely stiff. He would wake up in the morning with his arms fisted and straight up towards the ceiling. His head also took a lot of pressure in order to turn it to the middle and he would scream when he did therapy. Wednesday I increased his Baclofen (muscle relaxer) to the limit the doctor had allowed me and he has improved some. By Friday I think the seizures have improved some although he has started to get more angry. His blood pressure has remained low and I haven't seen any water retention :) He gets his blood checked in one more week to check for liver and kidney problems.