Tapering off ACTH and Feeling MUCH Better

October 4, 2013: Chase was feeling so much better after a few days of decreased amounts of the ACTH in his injections and was so happy – but now he would NOT sleep.  He would stay awake during the day for 16 hours, without one nap.  He just stared around in amazement, like he was seeing the world for the first time.  It seemed like he was overstimulated and suddenly aware of his surroundings like he had not been for a long time. He must have been walking around in a fog before. It was so wonderful to see him alert (albeit overly) and showing interest in toys by picking them up. Throughout the next few weeks, Chase didn't even notice his injections any more.  We realized what a tough little guy he had become. 

The next few weeks were still hard, but exciting.  Chase now had started the Topomax, so almost immediately his appetite decreased.  We could barely get him to take his bottle with medications!  He was now hyperactive- darting from one thing to another.  We could not get his attention, which was a little disturbing but we were so glad he was moving and interested in things around him.  I would call Tom crying and excited that Chase got into the garbage or the toilet, everything around that we had become so used to not worrying about because he was not interested in/did not notice ANYTHING before.  Suddenly these things you take for granted (and can be frustrating when you have kids) were the most important events in our days! Chase went back to daycare at the Goddard School in Fargo and things were still pretty wild in his little brain. They were so wonderful and accommodating, as Chase had never had a real sleeping or eating schedule like all of the other children. In the next few weeks it was now exciting to see him start to follow somewhat of a normal schedule!  

Chase (obviously) feeling better.  He just loves being outside!