Wondering whats going on??

Why were we hearing Cully laughing hysterically last night??  Cully stumbled on a video of the Dallas Cheerleaders in bathing suites.. He couldn't stop giggling... Parental controls are going on the computer as we speek...



I have not posted for a bit so I am going to toss out an update....

5 weeks seizure free.....

Cully is doing fantastic. He has lost several pounds and is now 45 pounds. His lower half is back to normal but above the belt line he has a long ways to go.  His cheeks are not much smaller yet and the belly just started to go down..

He has his energy back and is keeping us on our toes. He also went from 18 medications down to 6. Blood pressure is even back to normal.

We have even taken Cully out in public again now that he is building his imune system back up. We surprised much of the family with Cully and his nephew and spent an entire evening visiting.

Cully visited his school too. He will be starting a special education program come January and he met his teacher and the other 11 students that he will soon call friends. He also did his "Building Blocks" program with mum, something he really enjoyed but had to discontinue due to the ACTH treatment.  His visiting therapists have began to visit again as well.

 Cully is acting like a 5 year old now and is showing huge improvements in his development. He is able to get onto the computer and use the mouse to reach websites such as YouTube and then look for football and Barney videos. He can do this on his own and he really enjoys it..

 Our down side right now is Cully's tantrums. We suspected the withdrawal from the ACTH would cause this but as we get further away from the drugs end we are seeing an increase in the tantrums.
Tantrums is not a big enough word for what is happening..... What Cully is doing is scary.

 The other day we thought Cully broke his mothers nose when she picked him up during one of the meltdowns and he slammed his head into her.  Cully will throw things with the force of a teenager when he rages and he will run across the room after any one of us to hit and kick us. It is complete rage.

 What sets him off can be anything. A simple no. Telling him to come to us or put something down. He dropped the IPad to the floor yesterday and I kindly said "thats not how we put that down. Pick that up and hand it to me."  He broke down in tears and then lashed out.  He was walking around with a plastic cup and a fork making drum noises and we were clapping and playing right along with him. He tossed the cup at mom just in a playing way and it hit her on the head and she said owe. Cully broke out in tears in an instant and then threw the metal fork very hard in anger and hit mom in the face and began his rage.  Mom put her arms around him and he was shaking. This time the rage was set off by feeling bad that he hurt his mom but then he turned it against her. Because Cully also does things like run across the room and ram his head into the wall or throw himself down and repeatedly bang his head on the floor, we have to keep him extra close. He has no care if he does this on the tile floor or the carpet. He continues to hurt himself like this.

We have seen him show remorse very quickly after he has one of his episodes.

 So this is the new bump in the road.  I am about to reach out to all our new friends and ask for information on their experiences with the drugs Cully has been taking. And regarding IS as well.  Just hope that this is part of ending the drugs as we did not have a Cully like this 6 months ago..