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Friday, August 10, 2007
Bradys seizure.
Brady is home and doing well. He acts kind of like a drunk person. He will lean forward and just tip on over,or the same with leaning backward. He acts really doped up,but hasnt had anything since the diastat at 3am. He usually has a long recovery time when he has a bad seizure,so its to be expected really.
Anyway it all started at 3am this morning. I was sitting in the chair watching a movie,and Brady climbed up in the recliner beside me and went to sleep. He had been sleeping,or so I thought,for about 10 or 15 minutes,when I got up and walked over to check on him,like I always do. I have a habit of checking on him every so many minutes. Anyway When I got around to the front of him could see that he was jerking. I tried talking to him for just sec,but of course he didnt respond. So I yelled for my husband to get up and get the diastat while I took Brady back to the living room and lay him on the couch. I tried to take his pjs off to give the diastat,but they wouldn't come off,because his legs were straight as a board and super stiff. So finally I ended up just ripping the pjs off so that I could get the diastat in him. Well,a few minutes after the diastat was given,he was still seizing,which hes never done after diastat. So we got the other tube and gave it,knowing that he was going to the hospital one way or the other. We ran out,in our pjs,no shoes,made them get me some socks at the hospital though,we left the door unlocked and jumped in the car to go the hospital. About 30 to 45 minutes,,maybe even a little more,had passed,when finally he stopped seizing on the way to the ER. But he became completely limp,had no control over his limbs or head,and was totally unresponsive. I really had prepared myself that I was going to have to do CPR. I just really felt that he was going to stop breathing,either from the seizure or the extra diasat. Btw,the docs did tell us to give the diastat back to back in an emergency situation,if needed. So we got to the ER,I told the lady at the front desk,we didn't have time for paperwork,open the door and let us back. They didn't do anything for Brady. They did start a needle,just in case he had to have ativan,which I suggested he might. They never started a drip,or anything. They had no clue as to what to do for
Brady.I made them call our ped and he admitted Brady today. I think it must have been about lunch time,before Brady even opened his eyes again. He has been totally out of it. But by tonight,he was eating,drinking,ripped out his IV,blood everywhere,tore off his monitors,yanked out his oxygen, and was drunkenly trying to climb out of bed. Oh and he figured out the buttons on the bed,so we were folded up like a sandwich in it several times,it was like a fair ride,up and down,lol.
We still dont know what were going to do about Brady's meds,there will be a med change of some kind. Our ped couldn't get up with our neuro,no surprise. So were meeting with our ped on Monday to discuss what were going to do. We will most likely go back to the neuro next week,and the endoscopy with the GI doc,will be canceled until we get the seizures under control.
I told Craig,this morning was the first time that I have ever really felt that I might loose Brady. He has had so many seizures before,but I never really had that feeling that it was life threatening,until this morning. I know that if I would not have been awake,and caught the seizure in time,there is a strong chance that we would have lost him. It just makes me sick on my stomach to think how close we were to possible loosing him.
Anyway,I will post more later. Hopefully we can get some answers real soon.

posted by angelwings @ 10:50 PM
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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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