We saw Dr. Sasha on Friday. After watching several new videos of the shaking episodes Lu has been having and listening to us explain how they have changed since they began, she said it is possible that the EEG reader may have missed something and that they could possibly be seizures. She said that Rett tremors generally happen when girls wake up. Lucy's episodes happen any time of the day and come out of the blue. And speaking of blue, that is the color her lips have been turning during some of them. We bought a little pulse oximeter to see how low her oxygen levels were getting and how quickly she is rebounding. They are getting down into the 70's (below 96 is undesirable) but they are coming back up almost immediately or within just a few minutes, so we don't need oxygen for her at this point. The shaking episodes are almost daily, and often several times a day. In addition to her lips turning blue, she has also started falling asleep afterward, sometimes for an hour or more. They have also increased in length and severity; much more violent shaking, sometimes her head gets "stuck" turned to the side, and a few times her eyes have been stuck upward. While all of that sounds horrific (and it is to us), Dr. Sasha said that if they are seizures, they are mild. They are short and since her oxygen level returns to normal, no brain damage should take place.
So, Dr. Sasha said to start a low dose of Depakote to see if it helps. If these are not seizures, it won't help. We gave her the first dose on Tuesday morning, and it will take some time to start working if it's going to. Well on Tuesday she had three giant "shakers" as we call them, also combined with a "head turner" each time, blue lips once, and eyes stuck upward during one of them. She slept most of the day between these episodes.
Unless you have been a parent who has watched your child have some kind of episode like this, seizure or not, and then sleep the day away, I don't think I can accurately explain how emotionally wiped out I was at the end of Tuesday. I mean, I know a person can imagine how it might feel, but just not to the extent of having experienced it. We got a video monitor quite awhile ago, but when these started we got a second camera for in the living room, so I can always see Lu. Therefore, whether I'm taking Finn out, taking a pee, trying to get dressed...whatever, my eyes are glued to the screen. So, when I see her arms going up and out, which is what happens before an episode begins, I come running, even though there just isn't a damn thing I can do to help her. I just hold her hand, smile a little, and assure her that it'll be over soon and it will be okay.
I still don't feel comfortable sharing a video, even if it could be helpful to someone desperately searching for clues as to whether their child is or is not having a seizure, but I have decided to include a still picture I took from one of the videos. It is what her face commonly looks like during these episodes. It is of her precious little face that I look at while she shakes uncontrollably, trying to keep myself together for her sake. It is an accurate depiction of how I think she feels during the episodes, which makes me enraged and devastated because it is clearly a look of terror. Here it is:
She was frozen to the side during this video so I was able to get a picture because she was not shaking much at this point, but she started toward the end.
And then this is what I have seen more often than not in the past few days and weeks:
Not usually laying on Chad, but just exhausted and completely wiped out.
So, we will see if the depakote helps. It's such a conflicting feeling that Chad and I have; on one hand we hope it helps so she can go back to herself and not have to live like this, but then if it works it means she now also has seizures, on top of everything else. If it doesn't work, and they aren't seizures, then there might Not be anything we can do for them. We have always known that seizures were a very likely possibility. I have often said, "She could have one right now...or right now...or right now." We knew the could just come out of nowhere, and then they did...maybe. We'll see what happens.