Monday, December 28, 2009

tests and other junk...

I feel so slack, the last week, I have hardly posted at all! It has been more than chaotic around here! I barely remember having Christmas! There has been so much mayhem and unrest around here, I feel like I am barely hanging on. It has been so sad to see my step dad dealing with all the loss and destruction and then Christmas and all on top! It just breaks your heart.
On top of all that we have been trying to get some answers with Faith's seizures. She had her MRI on Fri the 18th and per the Neurologist, her tumor seems about the same- no significant changes. Today, she had her EEG. It was a sleep deprived one, so we all only got about 5 hrs of sleep, then therapy, then an hour + drive to the EEG, then home. We were gone for 11 hours, today! We were able to meet with the doctor, after her test, to hear what they found. Of course, we knew that it would be abnormal- always have been.
But he did say no significant changes, which is good. He did tell us some different things that we haven't heard before. He said that there were a lot of misfiring going on in the back of both sides of her brain and that there was a lot of increased misfiring when she was drowsy- going to or just waking from sleep. I don't know why I hadn't really considered it before but it makes sense, since most of her seizures occur in the very early morning hours- around 3-7 am. He had said, last week, that some children have increased seizures as their brain matures, as they age. So I asked if they better when they get older. Of course, I didn't get a straight answer. Just generalizations, some do some don't. He said that, as we knew, that children who are compromised, neurologically and have a lot of abnormalities are just prone to these problems. That there is no medicine that is 100% that nothing will fix what is happening in her brain. Of course, we knew all of this, already. It's just frustrating.... We just know so little about the brain and especially hers and what exactly is going on and what exactly did happen and why. I just live with so much anxiety about the seizures. I always feel like I am on high alert! I don't know how I am supposed to live like this. I have read a lot about seizures and done a good bit of research but it doesn't really make me feel better. And our conversation with good ole' Neurologist of the year, didn't do much in that department...We did go up on her Tegretol levels, even though we are still waiting for her last blood level check. My feeling is that, before long she is going to max out her levels and we will be forced to delve into other medications.


Cjengo said...

Well it does seem the older Jude gets the more we learn about where his seizures are, etc. Seems we now know they are isolated to 1 part of the brain. So I guess they are right that as the brain matures we has to try different things. It is so generalized tho. I hate the questions, and little answers. By the way, a house down from us burned down the day before Christmas....ugh! They left a candle burning. 1 reason I push Scentsy. So sad, they have 5 kids

Anonymous said...

I feel bad for all the stress you experience worrying about seizures. Must be terrible to live with that stress. My offerings are measly but information is all I have. I can strongly recommend the blog called Dear Trevor (linked in my top post). And, in the link on the paragraph about hyper-baric treatment, I think you can see the videos of those presentations. I will check later if I can give you more on that. Barbara