Angelman Syndrome, Life as an Angel

Thursday, August 16, 2007

Ok as many of you know,Brady had a bad seizure Friday morning about 3:30am. He had two tubes of diastat,which is dangerous in itself,not to mention how dangerous his seizure was,45 minutes long at the least. Well we had been trying to get up with the neuro to find out what to do,while Brady was at the hospital. The ER docs dont know what to do with Brady when he comes in with seizures,and really need guidance. His life depends on this. Our ped does everything he can for Brady,we are truly blessed to have him,but he is not a neuro and not trained specifically in that field. The neuro finally called our ped back Monday,lot of good it done,since this all happened Friday!!
So anyway we went back to the neuro for the second time ever,today. She walked in the door defending the fact that she didnt know about Brady's being in the hospital,until Monday. So we started talking to her about what happened and asked what we were supposed to do if Brady has a seizure after hours or on the weekend. How were we supposed to get up with her. Well her response was,that she was glad our ped didn't get up with her,wake her up. She appreciated the fact he didn't call her at that time of the morning. And that if all her peds called her at that time of the morning,she wouldn't be able to function the next day,she would be to tired. So basically if we have a problem after hours,tough luck,our problem. I guess we should just tell Brady to not have a seizure until its time for her to be at work. I was absolutely disgusted!!! It took everything I could do to stay on my chair!!!!!!!!!!!! I bit my tongue so hard,it nearly fell off!!!! She also pretty much told us that she didn't want to treat to Brady,that we needed an epilepsy specialist. I mean this lady is a pediatric neuro,what good is she if she cant treat seizures!! She pretty much lost me after she started talking stupid,pretty much when she first walked in. I knew right away,she was fired,no questions asked. She is the most uncompassionate human being I have ever met. She absolutely could care less if Brady is laying up in the hopsital dying,as long as she gets her beauty rest!!! Does she think that we get loads of beauty rest!! We spend out nights worrying and waiting for Brady to have another terrible seizure. We live our lives wondering how long we will be able to keep our baby boy with us. We hired her to do a job,and that is guide us through treating Brady's seizures and keep him as safe as we can. It wouldn't kill her to get on the phone for 5 minutes and tell them what to do for him at that time. Its not like were asking her to get out from under her warm sheets and drive down here!! But since it isnt convenient for her, we just have to do the best we can! Needless to say,shes fired,we wont be going back to that quack. People really wouldn't believe how rude she was. Did she not realise that she was talking to two overly stressed,sleep deprived parents?? We now have to find a new neuro,before another bad seizure. Brady is maxed out on his topamax,lamictal,and now nearly maxed out on keppra. So we have to find a neuro ASAP. Why is it so dang hard to find a neuro that you can reach after hours in case of an emergency?? Didn't these neuros take an oath to look after their patients?? Why aren't they doing so??? Did that oath state that they would only look after their patients during business hours,otherwise your just out of luck!!! I just keep saying that you have to go through a lot of bad apples to find a good ones,but shoot the barrel is nearly empty! I'm so frustrated right now. I have been on the verge of tears all day. Its such ashamed that with the technology in our world today,the advancements being made everyday,that we our Brady still cant get the care he deserves. I cant guarantee him and everyone else out there,I refuse to give up!! I will get what he needs one way or another! He depends on me and I will not let him down! I am at my wits end and dare a neuro to ever speak like that to,around or about my little boy,ever again!!!!!! Im sick of biting my tongue,trying so hard not to burn bridges as we go along! Anyway I think we have found a neuro,about 2hrs from here. Im going to do some calling tomorrow to see about getting Brady in. I will keep you posted on what we find out. If it were not for our ped,I dont know what we would do. I feel like we are doing something wrong,by wanted to neuros to get to know Brady and his history,and by wanting the very best care for him,is this unreasonable?? Oh well,I'm done ranting for now. Wish I could say that this wont happen again,but there is a good chance it will.

posted by angelwings @ 3:19 AM 2 comments

2 Comments:

At 7:41 PM, Anonymous said…

Hang in there Steph' you are in my prayers
At 12:35 AM, Unknown said…

Steph, we are praying that you will be led to the right neuro for Brady. We are praying that the seizures are kept at bay and that you find a neuro who you are comfortable with and who has the knowledge and the wisdom to treat Brady as he needs. You are such an awesome mommy! Keep up the fight, I know it's hard, but you will find the right dr. who is in practice for the right reasons...to make a difference in patients lives. Sending (((HUGS)))

Home Post Edit Post a Comment

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.

See my complete profile

Home Post Edit

Just wanted to let everyone know,that our little A...
Well Brady is doing well. Still sleeping a lot,and...
Brady he is home and doing well. He acts kind of l...
Bradys seizure.

Well just wanted to let everyone know that we are ...

Keeping it real!
Perfect little Angel