Monday, April 30, 2012

HOPE is Huge That's what we have!!

Well our trip last week to Vanderbilt went well, it had been 6 weeks since our last appointment. We got there late Wednesday night so it was basically melatonin, a story, then sleep, of course I can't sleep that night I hate that!  So we get up, eat breakfast, and head to the hospital. We are pulling in the garage and looking for a spot and Noah starts throwing up YES puking in the hospital garage, like that's never happened before right.... Thank goodness he rolled down his window and held out his head it was all over the car but not on him!  So I use a coke to clean off the side of the car, and we head in, he doesn't look like he feels well at all.  But we get up there and tell them what happened. They did the usual weight, height, BP, pulse and he was great. Our doctor comes in Dr S he is awesome!!  So he asks what we have been seeing well he has only been at the full dose for a few days but we are seeing some changes, behavior is improving, communication too, he talks non stop, you can understand a lot more as well. I also reported that his cognitive skills are improving, he is making connections to the world around him BIG TIME!!  He is reading billboards and street signs. He is more aware of his feelings and the feelings of others that is something that has been very difficult. This may sound weird but he gets dizzy now, he NEVER got dizzy before, he is also aware of the temperature, he went on a walk with meme the other day (that is new too she could have never done that by herself before) and he said he wanted to go home he was hot!! So Dr S tells us that we should continue to see more improvements in these areas over the next few months as it builds up in his system.  The Dr also told us that this was the first drug to help "manage" autism. It works with the GABA receptors in the brain, the name of the clinical trial drug is STX-209 it is Baclofen-R.  Baclofen is prescribed now and doctors tried it for autism but did not see the same results as baclofen-R.  He also told us to take into consideration that Noah has seen the world "his way" for so long that it will take time for that to change as well. I am SO excited about what's to come, I have not thought that way in a long time there is hope, and you guys know as the parents or family members of children with autism HOPE is huge.   The side effects if this drug are minimal, Noah has experienced some head aches, not sure if was related to medicine or just allergies.  So Dr S is getting ready to leave and Noah looks up at him and says,"you forgot to take my blood.".  Dr S said no Noah we didn't have to do that this time. How many kids (or grown-ups) remind the doctor that they forgot to get blood!! LOL. Will keep you posted on new developments. 

1 comment:

  1. Brave kids reminding the Dr. about taking blood!! I would've ran out of there. congrats on his progress!