Angelman Syndrome, Life as an Angel

Friday, January 16, 2009

Just wanted to let you know that Brady is doing well. He seems to have gotten past the worst part of this whole seizure ordeal. He was up and going by lunch yesterday, his seizure was at 4am. He seems to be nearly back to himself by today. We don't know what caused the latest seizure, but were just glad its over and hes ok. We have increased one of his meds and will having the VNS turned up next week, so hopefully that will do the trick.
As for the seizure, I know you guys are all probably wondering when and how it happened. This week I have been feeling uneasy, not anything was different, but I just didn't feel right. I kept him out of school on Tuesday, just thinking that a seizure might be coming. By Wed I had convinced myself that I must be loosing my mind. I took him to school, ut took him to the doctor afterward,to have him checked out, just in case. They couldn't find anything, which isn't surprising since detecting a seizure that hadn't happened yet, would be nearly impossible. I told his teacher before we left that day, that I just had a feeling that Brady was going to have a seizure.
Anyway we came home that night, nothing out of the ordinary. Brady played with his toys all night and really didn't act any different that usual. By 4am he fell asleep on the couch, so I carried him to my bed. It wasn't long after I put him in our bed that this feeling of OMG came over me. I started feeling around in the dark, to see if Brady was jerking, but he wasn't. I still felt that something wasn't right, and reached over to feel of his face, but his head was turned all the way to one side, was stiff and I couldn't move it at all. I told my husband then that I thought Brady was seizing, to turn the light on. His head and eyes were turned to the left side, which isn't typical for him. They usually turn to the right side. His hand was also jerking a little bit, but nothing like with his seizures in the past. We started using the VNS magnet on him and swiped him 5 times for the next 5 minutes but the seizure didn't stop, it only changed. His eyes came to the front, but his pupils were so dilated that you couldn't even see the blue in his eyes. He was flailing around like he was going to get up and looked as if he were scared to death. We waited another 4 to 5 minutes, trying to give the VNS time to work, I think we might have even swiped him once more. It kind of worried me because as I looked at his chest, it started developing this red rash under the skin, and as I watched it spread from the top part of his chest, nearly down to his stomach. So we decided that we had to give the diastat, but it took two of us to hold him down, because he was fighting us with all his might. It was like he was there, but not really there. He had no idea who we were, or what we were doing to him, let alone what was going on. So anyway we did give the diastat and it was a matter of seconds before it started working. He slept until about lunch that day, but was good to after that.
So were hanging in here, just glad that things happened the way they did and that our little guy is alive and well.
I will keep you guys posted on how things go here. Were just believing its going to be an uneventful rest of the year :)

posted by angelwings @ 3:08 PM 0 comments

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What is Angelman Syndrome?

About Brady

Read Brady's Story Here

I am 11yrs old and I have Angelman Syndrome. I may have this syndrome, but I dont let it hold me back. I love life and live it to the fullest every single day. My mom says that our research organization, Foundation for Angelman Syndrome Therapeutics, is working really hard on a treatment or even a cure for me and my friends. I am thankful to have 25 words but I look forward to the day that I can carry on long conversations and talk so much that everybody has to ask me to please be quiet for a few minutes :) Anyway, mom says Im awesome and super funny and I have to agree,lol.

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