Wednesday, December 17, 2014


So, about the shaking episodes... Dr.  Sasha increased the depakote a second time and I kept a log for two weeks to see if there was improvement. She only had the episodes on 5 out of 15 days, whereas the first update I provided, before the second increase, was that she had episodes on 5 out of 9 days. So Dr. Sasha said to increase it just a little more. She said the medicine is helping. I asked if we were to assume then that they are in fact seizures, and she said, "Right." So, that's that then. Lucy is in fact having seizures. The depakote would not help if they were not seizures. 

Other big issues on our list of symptoms to try avoiding to whatever extent possible is pneumonia and scoliosis. Both of these have more of a possibility of being avoided, whereas seizures, and feeding issues, apraxia, just manifest from the disease. I think Lu has been (mildly) sick twice since leaving school almost a year ago, so we are doing well in the battle against pneumonia. As for scoliosis, we do our best to have her positioned straight, but comfortably as much as possible. No curvature has been detected in her spine so far. 

When I look at pictures like this one: 

I can't help but think back to my oblivious frame of mind at this time in Lu's life, and feel so sad. I guess maybe we did have those 8-9 months where we thought life was going to be run of the mill for her and us, but I can almost never look at it that way. I look at it more like we were fools back then to think that life was going to be easy, or fair.  Even up until a few months ago we thought maybe Lu could be in the small percentage of girls who don't have seizures. And two years ago we thought hopefully that she might also be able to continue to eat on her own. And when she was a year old we assumed she would learn to walk. And on September 27, 2009, when I found out I was pregnant, we never, ever assumed that our daughter would have a rare condition that was going to steal so many things from her. It's hard to not take things for granted when you have no reason not to. 

Speaking of assumptions, I keep forgetting to mention some assumptions that Chad and I would not allow to be made in these past months of trying to determine what was happening with Lu. First we went to the pediatrician who of course said the could be seizures, but he would talk to a neurologist in Danville. He spoke to the neuro on call, who has never even met Lu, and he said that he didn't even need to see the videos we had to be certain that they were seizures, since she has Rett Syndrome. Well, that is malarkey, and a dangerous assumption to make solely based on her diagnosis. As I have said, there are breath holding spells, and "Rett episodes" and all types of other "events" that can happen in girls with Rett besides just seizures. Unfortunately, Dr. Sasha was out of the country for the month when these first began, so we could not consult her. 

When we went to an appointment in Danville with the neurologist that has seen Lu in the past, he too was going to instantly assume they were seizures and just start her on medicine. We said, no, we thought an extended EEG should be done to try and determine if they were seizures. As I have mentioned, none were apparently seen during the EEG. However, when we did finally get up to see Dr. Sasha, she said they just could've missed it since Lucy's brain has abnormal seizure activity all the time. She still wasn't sure, but we trusted her decision to try the medicine because she is a specialist and we always have comete faith in her to do what's right for Lu. And now we know for sure.  But, I don't believe it is in anyone's best interest when doctors just make assumptions based on a minimal amount of information and say, "Let's throw medicine at it!" I mean, the arrogance of that first doctor to say that he didn't even need to see the video! Rett Syndrome is a diagnosis, but it is not a mold that all girls came out of. Everyone is different. 

I guess my point is, don't let doctors push you around! Not about your own health, or your child's health. I think they do that a lot, to a lot of people, because they think they need to seem important, like they are the alpha dogs and we are all just mongrels in their pack.  And I guess another point I tried to make is do your best to not take what you have in life for granted. Back when Lu was 9 months old, the new pediatrician we went to see because we had just moved here encouraged me to NOT have her evaluated by Early Intervention, even though she was not crawling, pushing up on her arms, or bearing any weight through her legs. That was my first experience with saying to myself, "He might be the doctor, but he is not the alpha dog of me and I'll do whatever I think is best for my baby!" And I did have her evaluated, and at that time she (oddly) didn't qualify, but 3 months later, when she still had made no progress, she did. And that was also the beginning of learning what it does really mean to not just be able to assume and take for granted that things in life will go your way. 

Rett Syndrome is a bully. It is the type of bully that is relentless. Chad and I are the type of people who stand up to bullies. And Rett Syndrome is the type of bully who just when you think you have fought hard enough to keep it at bay for awhile,  it sneaks around a corner and kicks you in the face. I have said more than anyone over these last months that I believed Lu's episodes were seizures, but I still had a really hard time getting the actual confirmation yesterday. 

Today's a new day, I'll get over it, to whatever extent a parent gets over these types of things.  It just makes for one more thing to worry about when we go somewhere. It's just one more reason why no one besides my mom and dad can take care of Lu if we want to go on a date, because there is just too much to know and do for people who don't see her everyday. It's just one more thing. 

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