Angelman Syndrome, Life as an Angel

Wednesday, August 22, 2007

Well its been a good day today. We went to see the new neuro. For those of you who dont know,we fired the other neuro,you can read the last post to find out why. Anyway we set up an appt with a new neuro,the earliest they could see him was Oct 5th. So I emailed him to kind of catch him up to speed on Brady's history,seizures,meds,things like that. I explained that I wanted to sit down and make out a seizure plan to take to the hospital here,for when we take Brady in,in status. I also told him that I was emailing him,because it was so in depth and would take so much time to cover,and that I knew it would be hard to cover it all in one office visit. So I wanted him to have the heads up on what to expect. Anyway the following day,the neuro looked up our number and called me at home. He explained some of the things he wanted to cover,he wanted to make sure we had diastat and said he wanted to see Brady today,instead of waiting til Oct. So we just got in from our visit and it went so well!! I think he is the best neuro we have ever seen! We did have one other,but he has moved. Anyway this neuro actually touched Brady,no neuro that we have seen has ever done that,most of them don't even talk or look at Brady. He went over everything in detail,I think we were there an hour. He also typed up a seizure plan for us to take to the hospital,in detail. It tells what Brady has,what it is,what kinds of seizures he has,what they look like and step by step,what meds to give to stop the seizure. They are to try each step and if it doesn't stop,move to the next step,it even has all the doses of meds to give. The last step on the page says,if they reach this step,call this number and have Brady transferred down to him.
He gave us a plan for the school,cases for diastat,both at home and school. He gave us a binder that has a seizure calendar in it and some other info on seizures,its really nice.
He wants us to come back in Oct for blood work and an eeg. And he did change Brady's meds,he will come off the lamictal first,he added dapakote and increased the keppra. Eventually he wants to get Brady off the topamax as well. He was extremely knowledgeable about AS,unlike many neuros we have seen. I was amazed that he actually knew what I was talking about when I mentioned things about AS to him!! We are just very excited. Craig and I were laughing earlier,most people wouldn't understand our excitement over getting a neuro that actually cares. We have been through so much ,this is a huge deal. We said it seems almost like Christmas and we just got the best present anyone could ever get,lol. I really was getting so discouraged,it seemed like none of the doctors,other than our ped,really cared about Brady. It was like they either didn't realise,or didn't care,that Brady's life was literally in their hands. Anyway that's about it for now. Im wore out,so were going to bed soon,I hope!!! Oh yeah,Bradys ped put him on clonidine and Brady has slept two nights in a row,whooo hooooo!!! Last night was the first night I have slept in my bed in so long,I almost forgot what it felt like,lol. So thanks so much to all of you have been praying so hard,thanks so much to our wonderful ped and now wonderful neuro!!!!!

Oh quick story!! While we were checking out at the neuros office today,there was this adorable little girl that was standing at the checkout window,obsessively admiring a plastic M&M on the other side of the checkout window. So as I was checking out,she would move my hand off the counter so she could get a better look. She even kind pushed me away a couple of times,lol. Her mom tried to call her back,but she didn't want to leave that M&M,lol. So I told her mom,its ok I understand and shes not bothering me. Im very used to it. So everyone kept thinking the little girl was my child. We started out the door,meanwhile the little girl stayed behind at the checkout window. A woman came in the door pushing a stroller and got this bamboozled look on her face and was looking at us like OMG!!! She finally said uhhh mam,does this little girl belong to you!!! I just busted out laughing and said no shes not mine,lol lol. And her mom said oh no,shes belongs with me. The woman thought that I was forgetting to take my child with me. It was hilarious,we were all laughing. I said to Craig when we left,I should have told her,yea shes mine,but im gonna leave her here to play by herself in the clinic tonight,lol lol. I said she prob would have called the cops right then,lol. Anyway just thought it was to funny.

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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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